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<?xml version="1.0" encoding="UTF-8"?><rss version="2.0" xmlns:content="http://purl.org/rss/1.0/modules/content/" xmlns:wfw="http://wellformedweb.org/CommentAPI/" xmlns:dc="http://purl.org/dc/elements/1.1/" xmlns:atom="http://www.w3.org/2005/Atom" xmlns:sy="http://purl.org/rss/1.0/modules/syndication/" xmlns:slash="http://purl.org/rss/1.0/modules/slash/" > <channel> <title>A Geriatrics and Palliative Care Podcast for Every Healthcare Professional</title> <atom:link href="https://geripal.org/feed/" rel="self" type="application/rss+xml" /> <link>https://geripal.org/</link> <description></description> <lastBuildDate>Mon, 17 Feb 2025 21:09:50 +0000</lastBuildDate> <language>en-US</language> <sy:updatePeriod> hourly </sy:updatePeriod> <sy:updateFrequency> 1 </sy:updateFrequency> <generator>https://wordpress.org/?v=6.7.2</generator> <item> <title>Plenary Abstracts at AAHPM/HPNA: Yael Schenker, Na Ouyang, Marie Bakitas</title> <link>https://geripal.org/plenary-abstracts-at-aahpm-hpna-yael-schenker-na-ouyang-marie-bakitas/</link> <dc:creator><![CDATA[Alex Smith]]></dc:creator> <pubDate>Thu, 13 Feb 2025 08:00:17 +0000</pubDate> <category><![CDATA[All Posts]]></category> <category><![CDATA[Hospice]]></category> <category><![CDATA[Hospice and Palliative Medicine (HPM)]]></category> <category><![CDATA[Hospice and Palliative Nurses Association (HPNA)]]></category> <category><![CDATA[Palliative Care]]></category> <category><![CDATA[CME Eligible]]></category> <category><![CDATA[Podcasts]]></category> <guid isPermaLink="false">https://geripal.org/?p=7068</guid> <description><![CDATA[The post <a href="https://geripal.org/plenary-abstracts-at-aahpm-hpna-yael-schenker-na-ouyang-marie-bakitas/">Plenary Abstracts at AAHPM/HPNA: Yael Schenker, Na Ouyang, Marie Bakitas</a> appeared first on <a href="https://geripal.org">A Geriatrics and Palliative Care Podcast for Every Healthcare Professional</a>. ]]></description> <content:encoded><![CDATA[<div class="wpb-content-wrapper"><div class="vc_row wpb_row vc_row-fluid wpex-relative no-bottom-margins"><div class="wpb_column vc_column_container vc_col-sm-12"><div class="vc_column-inner"><div class="wpb_wrapper"> <div class="wpb_raw_code wpb_raw_html wpb_content_element vc_custom_1739411178001" > <div class="wpb_wrapper"> <iframe title="Libsyn Player" style="border: none" src="//html5-player.libsyn.com/embed/episode/id/35264790/height/90/theme/custom/thumbnail/yes/direction/backward/render-playlist/no/custom-color/00548f/" height="90" width="100%" scrolling="no" allowfullscreen webkitallowfullscreen mozallowfullscreen oallowfullscreen msallowfullscreen></iframe> </div> </div> <div class="vc_tta-container" data-vc-action="collapse"><div class="vc_general vc_tta vc_tta-tabs vc_tta-color-sky vc_tta-style-flat vc_tta-shape-square vc_tta-spacing-1 vc_tta-o-no-fill vc_tta-tabs-position-top vc_tta-controls-align-left"><div class="vc_tta-tabs-container"><ul class="vc_tta-tabs-list"><li class="vc_tta-tab vc_active" data-vc-tab><a href="#summary" data-vc-tabs data-vc-container=".vc_tta">Summary</a></li><li class="vc_tta-tab" data-vc-tab><a href="#transcript" data-vc-tabs data-vc-container=".vc_tta">Transcript</a></li><li class="vc_tta-tab" data-vc-tab><a href="#cme" data-vc-tabs data-vc-container=".vc_tta">CME</a></li></ul></div><div class="vc_tta-panels-container"><div class="vc_tta-panels"><div class="vc_tta-panel vc_active" id="summary" data-vc-content=".vc_tta-panel-body"><div class="vc_tta-panel-heading"><h4 class="vc_tta-panel-title"><a href="#summary" data-vc-accordion data-vc-container=".vc_tta-container">Summary</a></h4></div><div class="vc_tta-panel-body"> <div class="wpb_text_column wpb_content_element" > <div class="wpb_wrapper"> In today’s podcast we were delighted to be joined by the presenters of the top scientific abstracts for the Annual Assembly of the American Academy of Hospice and Palliative Medicine (<a href="https://aahpm.org/">AAHPM</a>) and the Hospice and Palliative Medicine Nurses Association (<a href="https://www.advancingexpertcare.org/">HPNA</a>). Eric and I interviewed these presenters at the meeting on Thursday (before the pub crawl, thankfully). On Saturday, they formally presented their abstracts during the plenary session, followed by a wonderful question and answer session with Hillary Lum doing a terrific job in the role of moderator. Our three guests were Marie Bakitas, who conducted a trial of tele/video palliative care for Black and White inpatients with serious illness hospitalized in the rural south; Yael Shenker, for a trial of patient-directed <a href="https://prepareforyourcare.org/en/welcome">Prepare-for-your-care</a> vs. facilitated <a href="https://respectingchoices.org/">Respecting Choices</a> style advance care planning interventions; and, Na Ouyang, who studied the relationship between prognostic communication and prolonged grief among the parents of children who died from cancer. From just the abstracts we had so many questions. We covered some of our questions on the podcast, others you can ponder on your own or in your journal clubs, including: <ul> <li style="font-weight: 400;" aria-level="1">Marie’s tele/video palliative care intervention was tailored/refined with the help of a community advisory board. Does every institution need to get a community advisory board to tailor their rural tele-palliative care initiative (or geriatrics intervention) to the local communities served? Who would/should be on that board? How to be sensitive to the risks of stereotyping based on recommendations from the few members of the board to the many heterogeneous patients served?</li> <li style="font-weight: 400;" aria-level="1">Advance care planning has taken a beating. For the purposes of a thought exercise, no matter what you believe, let’s assume that there are clear important benefits. Based on the results of Yael’s study, should resources be allocated to resource intensive nurse facilitated sessions (<a href="https://respectingchoices.org/">Respecting Choices</a>), which had significantly better engagement, or to low resource intensive patient-facing materials (<a href="https://prepareforyourcare.org/en/welcome">Prepare</a>), which had significantly less engagement but still plenty of engagement (e.g. 75% vs 61% advance directive completion)?</li> <li style="font-weight: 400;" aria-level="1">One interpretation of Na’s study is that clinicians can lean on the high levels of trust and high ratings of communication to engage with parents of children with cancer about prognosis. Another interpretation is that clinicians avoided telling the parents prognosis in order to bolster their ratings of trust and communication quality. Which is it?</li> <li style="font-weight: 400;" aria-level="1">Bonus: <a href="https://web.archive.org/web/20141208225201/http://bkc.mikovice.com/small%20black%20beetles/paul%20simon%20playboy%20interview.pdf">Simon says</a> he composed the song Sounds of Silence in a dark echoing bathroom about his concerns that people had stopped listening to each other in the 1960s (still resonates, right?). Garfunkel says Simon was writing about<a href="https://rockandrollgarage.com/art-garfunkel-blind-friend-who-inspired-sound-of-silence-tells-his-story/"> Garfunklel’s friend and college roomate Sandy, who was blind</a>. Who’s got the right of it?</li> </ul> Enjoy! -Alex Smith   ** NOTE: To claim CME credit for this episode, <a href="https://geripal.org/plenary-abstracts-at-aahpm-hpna-yael-schenker-na-ouyang-marie-bakitas/#cme">click here</a> **   <hr /> </div> </div> </div></div><div class="vc_tta-panel" id="transcript" data-vc-content=".vc_tta-panel-body"><div class="vc_tta-panel-heading"><h4 class="vc_tta-panel-title"><a href="#transcript" data-vc-accordion data-vc-container=".vc_tta-container">Transcript</a></h4></div><div class="vc_tta-panel-body"> <div class="wpb_text_column wpb_content_element" > <div class="wpb_wrapper"> Eric <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=880">00:00</a> Welcome to the Jared Powell Podcast. This is Widera. Alex <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=3768">00:03</a> This is Alex Smith. Eric <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=4616">00:04</a> And Alex, this is a live podcast at the HP and a HPM annual meeting. And who do we have with us? Alex <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=11248">00:11</a> We have a wonderful panel of guests, and today they’re going to introduce themselves, starting with Marie. Marie <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=17840">00:17</a> Hey, everyone. I’m Marie Bakitas, and I’m a professor at the University of Alabama at Birmingham and also the associate Director of the center for Palliative and Supportive Care. Yael <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=28410">00:28</a> Hi, everyone. I’m Yael Schenker. I’m a professor of medicine at the University of Pittsburgh and also director of the Palliative Research Center. Na <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=36498">00:36</a> Hi, everyone. I’m Na Ouyang. I’m a PhD candidate at Yale School of Nursing. Eric <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=42730">00:42</a> Great. So we’ve got a lot to talk about. We’re gonna be talking about three different articles that are gonna be presented Saturday, I believe, at the annual meeting. But before we get into the topics, I think we have a request. You have a song request? Na <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=61422">01:01</a> Yes, I requested the song. The name is the Sound of Silence. Eric <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=66222">01:06</a> Why did you pick the Sound of Silence? Na <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=68470">01:08</a> I like this song very much, first of all. And also I think it implies something nowadays. Eric <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=76550">01:16</a> Anything else from our colleagues or, how about we just jump into the song? Maybe they’ll sing along. Yael <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=81014">01:21</a> Let’s hear the song. Marie <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=81950">01:21</a> Yeah, let’s hear the song. Alex <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=87520">01:27</a> (singing) Eric <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=146530">02:26</a> Excellent. Thank you, Alex. Alex <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=148442">02:28</a> Yeah. I think that song is a protest song that fits our time, about people not listening to each other and how in times of turmoil, we need to listen to each other and not the neon gods we’ve made. Marie <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=160658">02:40</a> Hmm. Alex <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=161210">02:41</a> Who could that refer to? We’ll do those verses at the end. Eric <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=164882">02:44</a> Yeah, maybe I may sing along, then. We’ll see. Have to see. Well, let’s jump into it. We’ve got a lot to talk about. Three different articles. Marie, I’m going to start off with you. You did a rural tele-palliative care consultation study. Before you tell me actually what you did, why did you decide to do this study with your group? Marie <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=188230">03:08</a> So, living in Alabama, which is our palliative care desert in the south, there were no palliative care services in any of the small rural hospitals. And so we decided that we needed to bring palliative care there. It wasn’t realistic to bring it by people. And so the video consult was what became the mode. We went to a hospital in Mississippi, one in Alabama, and one in South Carolina. Eric <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=218750">03:38</a> And what did you actually do? Marie <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=222030">03:42</a> So probably the most important thing is we developed the consultation as a culturally based consultation process. And so we worked closely with a community advisory group who, through focus groups, told us how it was that black and white individuals with serious illness had wanted to be treated. So their caregivers did focus groups. And then we incorporated that information into the consultation process. NCP guideline, standard consultation. And so really, this whole thing was very focused on dealing not only with the issues of rural, but also the diverse cultures that we have. Eric <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=267290">04:27</a> Yeah, I gotta ask about the community advisor. Actually, I think I saw a poster on this. Was it Sarah? Marie <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=276170">04:36</a> Shena. Eric <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=277138">04:37</a> Shena. Marie <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=277794">04:37</a> Dr. Shena Gazaway. Yes. Eric <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=280170">04:40</a> She had a wonderful poster. And, you know, I guess one question is, like, when you do these community advisory boards, like, what communities are you including? I’m just trying to think of, like, if there was a study of Widera, and Widera was not included in the community advisory board, but you had to put together a community advisory board about Widera. Like, what communities would have been included for that study? Like, would you include the doctors that I work with, healthcare providers where I live in Marin? I don’t want those people to be making decisions for me. So I don’t want my Marin community to. How do you think about community advisory boards when people have a lot of intersectionality, beliefs, cultures, even within a community? Marie <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=325306">05:25</a> Sure. So the community that was the one we tapped for the original study was an R21. Dr. Renee Elk ran that. I was a consultant, and the community was in Beaufort, South Carolina, which has a mix of people who have had experiences with slavery, with deeply held religious beliefs, and both black and white cultures and very rural. So there was a smattering of people who did the original focus groups. And it was fairly homogenous. I mean, there were differences. Actually. The black individuals wanted to have a separate one from the white individuals. And so we took that into account and the tailoring of our. Our consultation. And so it was really the patients, you know, the caregivers, the family members were the ones who were sort of the closest in observing. Later on, of course, we added health professionals to, you know, give us more information. Community leaders, and definitely faith community leaders. Eric <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=397030">06:37</a> And then what was in the palliative care syringe what was the intervention? Marie <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=404720">06:44</a> So the intervention was, I mean, it took us about a year to incorporate and then get feedback on the aspects of palliative care consultation that needed to be sort of tweaked. So I’ll give you a very easy example. We were told that patients wanted to be treated with respect, to be called Mr. Or Mrs. Unless they were told. You told the clinician something different. They didn’t want you to use jargon. They wanted you to be respectful of their cultural beliefs and their, you know, faith beliefs that were driving their health and illness. And so there were things that we incorporated into the consultation that then the remote doctors were doing the video consultation. They went through an immersion training over a couple of days to really learn about how people wanted to be addressed with palliative care. And so those, I think, were kind of some of the main things. Eric <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=467200">07:47</a> And then the actual. So you were doing teleconsultations. Right. So. Marie <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=473312">07:53</a> So the rest of it was. So they. The physicians learned how to do this. And then, because they were doing it remotely, you know, so they were sitting. Eric <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=481400">08:01</a> In an office or home sitting. Marie <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=482392">08:02</a> They’re sitting in their home, in their office. And there is a local nurse research coordinator at each of these three rural hospitals, and they recruited patients. Another very important feature of the culturally based consultation was that we had a community advisory group at every single hospital. And so those community advisory group members, one of them would come in with the research coordinator to actually recruit the patient. So they were the first one to talk to the patient locally. They’re a member of the community, they know everybody. And they would say, we helped to help design the study. We think this is a good thing for you to do. And then the consultation would happen. Eric <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=528632">08:48</a> And was it just with a physician or was there interprofessional team? Marie <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=532360">08:52</a> So in this case, it was just with the physician, though the nurse coordinator was there present during the whole consultation. And then they, you know, so just think of the way that you usually do, you know, your consultations and beginning with, you know, hello. But they did something different. They said, well, you know, you’re in Alex City, Alabama, and I know such and such or so and so about Alec City. And, you know, do, you know, so and so, you know, so they made some connections. Eric <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=561592">09:21</a> Building trust, right? Marie <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=562928">09:22</a> Building trust and rapport that gave the patient the idea that this is somebody who kind of knows something about. Eric <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=570256">09:30</a> This is not just a random talk in New York City. Marie <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=574252">09:34</a> That’s right. Eric <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=575500">09:35</a> Doing consultations, really. Marie <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=577388">09:37</a> This is somebody who knows somebody who knows you and me. And my community and about my family and those kinds of things. So that was established up front then after the end of the consultation. So, you know, there’s the idea of bringing video equipment in and all that. The nurse coordinator then followed up three days and six days later to see were there any questions, were the recommendations that were being made being followed? And then we did our assessment measures. Eric <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=610938">10:10</a> Was it just a one time visit or did you follow people over time? Marie <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=613602">10:13</a> So it was the one time visit by the physician, but then the follow up happened at day three. By then they usually were out of the hospital actually. So they called them at home and, and also at day six. Eric <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=625680">10:25</a> And who was included? What kind of like all patients, hospitalized, patients with serious illness, patients with cancer, patients with. Marie <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=632176">10:32</a> So it ended up, I mean, we were looking at the typical admissions to the hospital. Keep in mind, just as we started, so did Covid. So ultimately our intended audience were people 55 and older, Black or white race, and at least one condition that was a cancer or non cancer, progressive chronic illness. Eric <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=655962">10:55</a> So one serious illness. Did I have to severity of that? Like if you had just some mild COPD to count if you’re being hospitalized? Marie <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=663978">11:03</a> Yes. Okay. And. And they had to have a family caregiver. Eric <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=668930">11:08</a> Other questions from the groups before we do the results. Yael <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=673410">11:13</a> What was most challenging? So all of this was happening during COVID and I can imagine there were a few distract. What was the hardest part? Marie <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=683572">11:23</a> Well, pivoting, in fact, our small rural hospital in Mississippi actually never recruited a single patient in the first year because where it was located, only people who, and I forgot to mention in the eligibility criteria, they had to be living at home and they couldn’t be in hospice already. And so the people that were getting admitted were people who couldn’t afford to go anywhere else. Eric <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=712140">11:52</a> Yeah. Marie <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=712812">11:52</a> And so the most challenging part was trying to get the population that we had banked on in terms of our recruitment to get a normal population that’s typically admitted to the hospital. And then because no one could come in, we had intended for their family member to be there. Their family members could not come in. We had intended for the community advisor group to come in and do the thing. So they couldn’t come in. But the community members and our team, I’ll attribute Dr. Shena Gazaway, came up with, they made videos. And so the coordinator would bring in the video on a little tablet and say your community members helped to develop this. Here they are. And so that ended up being really successful. But you know, the idea of doing anything inpatient during COVID you know, was kind of our worst nightmare. Yael <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=769576">12:49</a> Yeah. Marie <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=770036">12:50</a> Yeah. Alex <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=771500">12:51</a> Could you talk a little bit about the other arm of the trial? I think it was usual care and whether that included in person palliative care consultation. Marie <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=780220">13:00</a> So usual care in a small, you know, 80 bed rural hospital includes what usual care is for people admitted to a small 80 bed rural hospital. There was no palliative care there. There were no specialists there, only hospitalists. And so if there was any specialty care needed, well, they didn’t get it. Eric <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=802410">13:22</a> Okay, big reveal. Did teleconsultation, pallid teleconsultation to rural hospitals, did it work? Marie <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=811690">13:31</a> Yes. Eric <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=813130">13:33</a> What were the outcomes? What did it show? Marie <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=815738">13:35</a> And no. So our main primary outcome was symptom distress measured by a very familiar tool, the Edmonton Symptom Assessment Scale. And we had a greater decrease in symptom intensity at day seven versus the usual care group by both a clinically meaningful and a statistically significant difference. Our other measures, in retrospect, were probably not the best ones to pick for an acute intervention because we only followed patients to day 30 for this intervention. Quality of life measured by the A Promise tool was not any different. And resource utilization was very low in all the groups. It was not very different. It was not different. Eric <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=864172">14:24</a> So it’s hard to improve resource utilization for these people where some of them didn’t sound like the sickest of people admitting them to the hospital, but all had some type of serious illness. Marie <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=875236">14:35</a> It wasn’t eligibility criteria, but all of our patients were palliative performance scale of 70 or greater. Eric <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=882524">14:42</a> Okay. And then I’d also imagine from a quality of life perspective, like a one time visit by a palliative care provider, I can’t imagine it really significantly improving quality of life unless there was robust like the symptom. The one time symptom was just right. Marie <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=899474">14:59</a> And even if it made a difference, which I’m not sure that it did, every other study that showed, including some of my own, improved quality of life wasn’t measured until like six months later. And so I think that we probably. The quality of life was probably not the best measure and we actually measured it in both patients and family caregivers. So we had the standard, the same tool that we measured in both and there was no difference. But again, hindsight’s 2020 probably wasn’t the best measure to look the other one we tested in an exploratory way was feeling heard and understood. And so I’m going to reserve the results of that, which wasn’t different but were interesting for another day or Question. Eric <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=946416">15:46</a> Okay, so my last question about this before we move on is we had a podcast on telepalliative care in the community, going to people’s homes, really showing was it non inferior? I forget what the actual equivalence. I think that was the equivalence one for this one. Is there something about acute hospitalization where being in person, how much does that matter? For the non symptom stuff you think like the building trust, the getting to know people, just seeing what’s going on in the room, like reading the room. How much of that is just the importance of being in person versus how much of that do you think it doesn’t matter if it’s in person or teleconsultation? Marie <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=990090">16:30</a> I actually don’t think it matters if you can establish rapport and if you do good telehealth etiquette, which is seeing who else is in the room, addressing everybody that was there, et cetera. And they had requested in their cultural tailing that the physician wore a white coat when he was going to be seen on the screen. And so I think that really it, it didn’t matter if you could develop rapport and respect. And so our objective data about that is we had a 10 item telehealth satisfaction measure that’s a common one that’s been used and we had greater than 95% agree or strongly agree to the satisfaction with doing the telehealth. Would you do it again? Eric <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=1042846">17:22</a> So people liked it? They. Marie <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=1044190">17:24</a> Yes, they absolutely thought it was great. Alex <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=1047629">17:27</a> When can you bill for this? Like if we started this today, could clinicians bill for the video palliative care. Eric <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=1055357">17:35</a> 9, 9 something something CPT code. Marie <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=1058917">17:38</a> So this is a moving target right now because the, you know, the emergency pandemic telehealth regulations that were waived have sunsetted as of January 1st. And so I’m not really sure. Okay. I think there’s no reason why if you could bill for a telehealth visit inpatient, then you certainly would be able to bill for this one. But I think right now it is a moving target about that. So we’ll have to kind of wait and see. Alex <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=1092672">18:12</a> Okay, last quick question. When you say telehealth, you mean like video health, like so they could see each other? Marie <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=1099220">18:19</a> Yes. So we were very clear throughout our reports that this is a video consultation. Eric <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=1105460">18:25</a> And did people get advanced care planning? Yael <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=1108980">18:28</a> Good transition. Marie <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=1109628">18:29</a> I want to ask about the advanced care planning. So the answer was yes, but not the way that Yale did it. Eric <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=1117476">18:37</a> Yale. So you did a study on advanced care planning? Yael <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=1122604">18:42</a> I did. Eric <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=1124340">18:44</a> What motivated you to do this study? Yael <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=1127240">18:47</a> Yeah, it’s great question. I think my motivations are similar to Marie’s actually. It’s all about how can we make for me advanced cancer care more patient centered, Recognizing that most people don’t have access to a palliative care specialist. We’ve looked at that in a couple of different ways. We did a large primary palliative care trial. We gave these tools to oncology and fusion room N that was complicated. That was my prior Jerry Powell appearance. This for me in advanced care planning, the way I think about it’s really giving tools to patients and families and it is guideline recommended in advanced cancer. But there are a lot of different ways to do advanced care planning. I think we all recognize that the question that motivated this trial was which. Eric <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=1183940">19:43</a> Approaches best and what did you actually do in the study? Yael <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=1189270">19:49</a> So we compared two different ways to do advanced care planning that are pretty different in terms of the resources and the complexity. So one was, you know, patient directed advanced care planning. We used prepare for your care written and web based tools. Eric <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=1207198">20:07</a> Our own Rebecca Sidori at ucsf. Yael <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=1209390">20:09</a> Yes. And I’ll say this is, you know, when I say we, this is a huge group of incredibly committed people including Rebecca from prepare for your care and bud hams from respecting choices. And what we compared the patient directed arm to was a facilitated advanced care planning approach using respecting choices. Eric <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=1228290">20:28</a> And when you say facilitated, what does that mean again? Yael <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=1230698">20:30</a> So facilitated means we had nurses who weren’t otherwise part of people’s cancer care teams who were trained using the respecting choices model, went through a three day training, they were certified and then they had visits with patients and families who are invited but not required to walk through the steps of advance care planning using the respecting choices. Eric <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=1254462">20:54</a> So one group just got prepare for your care, which you don’t need a facilitator. You just email them or email them information on prepare for your care. They do the homework they talk about then with their doctor or their healthcare provider. Yael <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=1270846">21:10</a> Yeah. And so, you know, prepare for your care. The way we did it, we really left it up to people to do this on their own time at home. We made up to three reminder calls. But it was very different from bringing people into like a research office and going through all the steps. Eric <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=1286862">21:26</a> And the facilitated one was not group visits, it’s one on one. So resource intensive. Yael <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=1291406">21:31</a> Yes, exactly, exactly. Eric <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=1292990">21:32</a> So this is a resource intensive advanced care planning versus resource light. Yael <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=1297090">21:37</a> Exactly. Eric <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=1297994">21:37</a> And what was your primary outcome that you were looking at? Yael <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=1300338">21:40</a> So our primary outcome was a very patient centered outcome. It was engagement in advance Care planning. It’s using a validated scale that measures sort of patients behaviors, you know, on multiple different advanced care planning behaviors. So not just, you know, is there a form but you know, thinking about sort of their readiness and self efficacy for things like identifying a surrogate and talking with family, talking with physicians. So it’s a validated scale. It was developed as a huge long survey. I think was 82 items. The one we used was 15 items. Eric <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=1333578">22:13</a> So I got a question then. Yael <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=1334674">22:14</a> Yes. Eric <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=1335130">22:15</a> So I’d imagine like if I’m doing a smoking cessation study. Marie <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=1339570">22:19</a> Yes. Eric <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=1340538">22:20</a> Should my primary outcome be engagement in the idea of smoking cessation or should it be smoking cessation? Yael <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=1347490">22:27</a> So I think it’s a fair question and I think this question of outcomes of advanced care planning, what’s important obviously has been a subject of debate in our field and a lot of that debate happened after we had sort of designed our trial. But what I will say is, and what I think is really important, when we think about advanced care planning, it’s not a single outcome. So we also had, you know, looked at advanced directive completion, we looked at other advance care planning sort of action outcomes. And then we enrolled patients and caregivers. We followed patients until they died or the end of the study period, whichever came first. And then we did interviews with bereavement caregivers and we asked about distress and goal concordant end of life care. So we had a whole range of outcomes. Eric <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=1390376">23:10</a> I love that because like you completely destroyed my argument because smoking cessation, like we do want people to smoke. But ultimately like the advanced directive is a middle piece. It’s not like it’s a. Advanced care planning is a process and advanced directive is just one thing you can think about like hospital utilization. But like if it’s really goal concurrent care, hospital utilization is not the most important thing. So like what is the right outcome we should be looking at? Yael <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=1417370">23:37</a> Leave that open for the. Yeah, that might be a whole separate podcast. Eric <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=1423922">23:43</a> Well, if there was one. Is there one? Could you think of one? Marie, you were going to say something. Marie <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=1429770">23:49</a> Oh no, you’re staying away. I was going to say that it is very tricky. It’s very tricky. Outcomes are very tricky in palliative care in general because you know, typically in other, you know, drug studies and things they measure survival. Right. And so that’s pretty easy. That’s like not anymore. Eric <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=1456730">24:16</a> We’re using all these surrogates. Marie <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=1458026">24:18</a> Yes. No. Eric <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=1458450">24:18</a> And so amyloid salads, disease progression free survival, like things that are much harder to even. Marie <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=1464114">24:24</a> Right. And so it’s hard, it’s really hard to think about what is the best outcome because you couldn’t follow everyone till they died and then find out after the fact from these family members whether your intervention helped that process. I was really wondering what you did find from the people that you did interview the family members about after the fact. Yael <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=1489250">24:49</a> Yeah. So I can share the findings. And I totally agree. And the other thing I’ll say about, you know, outcomes of advanced care planning. So absolutely, it is complicated. I think there’s not a single most important outcome. We have sort of talked about this as a field and there was a big Delphi study. Many of you were probably part of it, that Rebecca Sodori actually led, where we had to rank. It was like 125 outcomes or something. And so we’ve thought about this and goal concordant care definitely was the top. But below that were all of these action outcomes that people see as important, you know, as far as advance care planning. So, you know, was there a conversation with family? Was there a conversation with physicians? Was a surrogate designated? Was there something in the chart about goals of care? Were values elicited? So we thought about all of that and when we designed our trial, our primary outcome, and I can, I can share what we found. Eric <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=1542280">25:42</a> Was there a difference between resource intensive versus not? Yael <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=1545592">25:45</a> Yeah, so there was a difference. I’ll say all of our advance care planning action outcomes increased in both arms, but engagement in advanced care planning, our primary outcome, increased more in the facilitated arm. So the resource intensive arm. And it was both statistically and clinically significant on that scale. And then what was kind of most surprising and most interesting for me was this consistent story. When we followed patients through mortality and did our interviews with bereaved caregivers, we found lower distress using a validated scale among bereaved caregivers who had participated in the facilitated advanced care planning arm. So that was lower PTSD symptoms using the IESR scale. And then we also found higher reports of goal concordant end of life care. So caregivers in the facilitated arm were more likely to report that their loved one received care at the end of life that aligned with what they would have wanted. So it was a pretty consistent story about the value of a more resource intuitive. Eric <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=1611208">26:51</a> Marie’s super excited approach. She’s excited. Marie <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=1613464">26:53</a> So I want to know if I’m not supposed to be taking this away from you, but take it away if you, if you learned, you know, if there was where the person died had anything to do with also the family member outcomes. So were there differences in where they died and did that make a difference? Yael <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=1636460">27:16</a> So did it make a difference? So we did look at where they died, and we looked at whether they died where they would have wanted to die. By asking caregivers with those questions sort of separated in a long survey in an attempt to minimize bias. Perhaps not surprisingly, most people wanted to die at home. A smaller number died at home. We didn’t find, and we weren’t powered to look at whether there were differences between arms in whether people died in their preferred location, although there may be a suggestion there, and that might be something to think about for larger trials and sort of talk about what we want to do next. But I think that’s a really important piece of how we sort of think about goal concordance. Eric <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=1683264">28:03</a> Speaking of larger trials. Yael <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=1684736">28:04</a> Yes. Eric <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=1685072">28:05</a> There was a study that was recently published, which I think we’re doing a podcast that will be published in a couple weeks on advanced care planning of community dwelling. I think older adults greater than 65 using facilitated, I think advanced care planning versus usual care. I think there was an increase in advanced care planning documentation, but the group that got the intervention had higher rates of potentially burdensome care. It’s been a while since I looked at that. Does this ring a bell to you, Yale? Yael <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=1721338">28:41</a> It does ring a bell, and I hope we’re thinking about the same one. Eric <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=1724834">28:44</a> It came out, I think, in December and jama. Yael <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=1727722">28:47</a> Yeah. Yeah. So I think so. I mean, a couple things to say. I think when we talk about facilitated, we’re not always talking about the same thing. And there are different levels of facilitation. And so our facilitation, this was a trained nurse who met for. It was on average just under an hour. It wasn’t just, can we get people to do this thing? It was really sort of an emotional support plus advanced care planning visit, which I think. And we now have. We have qualitative data that we’re analyzing. We’re hearing a lot about the value of that and what that sort of meant to these patients and families in that time in advanced cancer. So I think that’s one piece. When we say facilitation, it can be many, many different things. Eric <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=1777096">29:37</a> But what if, since you brought up the word value, what if increasing goal concurrent care means there may be an increase in burdensome treatments at the end of life? Is advanced care planning again? We’re going to have a podcast on this particular subject. Is that a worthwhile goal then? Yael <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=1797840">29:57</a> Yeah. And so I think that’s a very fair question. Gets back to this debate in our field about what the important outcomes are. I think the most important outcomes are what matters most to patients and families. Those are hard to measure. Right. It’s a lot easier to look in the medical record and see what healthcare utilization looked like at the end of life. And I think we have different stakeholders with different priorities. But I still think what matters most to patients and families and the idea of alleviating distress amongst bereaved families, which we know is such an important part of what advance care planning accomplishes, I think that’s important. We are going to have healthcare utilization data as well. You know, all of these trials have to look at this from multiple angles. And I don’t have that data to share yet, but we will also look at this. Alex <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=1852188">30:52</a> Yale. I wonder what the take home is from this study. When I think about what your findings are like on a population level, it’s much more affordable if we could get everybody to do prepare everybody with serious illness, for example. However, you did find what you said was a clinically meaningful difference in outcomes for people who had the facilitated advance care planning, which is much more resource intensive. What ought we as a society do from a health policy perspective with these data? Yael <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=1886090">31:26</a> Yeah. So, I mean, I think one take home from this study is that advanced care planning is really hard to do. And we’re hearing this in our interview data now. When people have advanced cancer, they are navigating so many things and this is really hard to do. And so for some people, that additional, you know, facilitation piece is super important. There are other people for whom having access to those incredible, you know, patient, you know, friendly, easy to read, you know, multilingual materials is the perfect thing. And so what we’re thinking about next is sort of a stepped care approach to advance care planning. I know you guys have talked about stepped care approaches to advanced care, but, you know, can we start with something less resource intensive and step people up if they don’t engage or respond? Alex <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=1938602">32:18</a> Great, thank you. Eric <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=1939394">32:19</a> And I also love, as a clinician, I love the idea of just. And I think this is like, it’s in Rebecca Sudori’s preparing people and importantly family members for really, really hard decisions that come up. Because if something happens, they’re the ones that are like still alive in bereaved family member situations. Which kind of brings us to our third article. I don’t think this is our first time that we’ve had a pediatric article. Is it the first time? No, I think we’ve had one more. Alex <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=1972280">32:52</a> We’ve had pediatricians on pediatric articles per se. Yeah, so you’re right. I think this is the first time. Eric <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=1978968">32:58</a> So let’s turn to our third article and I want to make sure I’m pronouncing it. Is it Na? Na <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=1984096">33:04</a> Yeah. Eric <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=1984496">33:04</a> Great. Why did you do your study? Na <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=1987032">33:07</a> Yes. So first, my study focused on early bereaved parents, which means those parents who lost their child in the first two years, which is extremely vulnerable time, they experienced a lot of prolonged grief symptoms. And I also realized the communication between parent and clinician is really hard, especially among those parents whose child had incurable cancer. Those communications are always very challenging. And I was wondering whether the communication can impact their grief, even though that’s maybe a long period between grief and communication during treatment. And then I’m also curious whether parents who receive end of life preparation can help them to relieve their grief symptoms. So my research is kind of focused on exploring the relationship between communication and the grief in the early bereavement stage. Eric <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=2050790">34:10</a> Tell me, what did you do in the study? Na <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=2053014">34:13</a> Yes, so we did a secondary data analysis. Actually the data set is from Dr. Jennifer Snaman. She’s a pediatric oncologist at Dana Farber. She collected data from St. Jude and Dana Farber for those parents who were in the early bereavement stage, and recorded their experience and their child’s treatment experience. So that’s a very, very large survey. This survey included like 195 items. But they developed the survey involved a lot of bereaved parents to have their input to develop the survey and in every stage of development of the study. So that’s a really awesome data set. And they have 125 participants in that data set. Eric <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=2103320">35:03</a> So I did a 725 bereaved family members. So parents early bereaved within the first two years? Marie <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=2110392">35:10</a> Yes. Eric <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=2111136">35:11</a> And what was the primary outcome that you were looking at? Na <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=2114472">35:14</a> Yeah, so my primary outcome is prolonged grave symptoms. Eric <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=2118560">35:18</a> Okay. Na <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=2119200">35:19</a> So that’s measured by the certain item prolonged grave disorder instrument. It’s a validated instrument. And we calculated the sum score, the sum score higher score indicating greater severity of prolonged grief symptoms. Eric <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=2136050">35:36</a> And what’d you find? Na <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=2137690">35:37</a> We find actually we have three community variables which is the quality of communication and the amount of prognostic information and trust in healthcare providers. And interestingly, over 90% of parents said they trusted the healthcare provider a lot and 80% of them said they have a high quality communication. And 40 or 60% of them, they had enough prognostic information. But there are a lot of parents still feel they are not at all prepared for their child’s. End of life. Which makes the results are very interesting because I thought if you have good communication, then you can better prepare. But it seems like they didn’t prepare for their child’s end of life. Eric <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=2191620">36:31</a> So what I’m hearing is that people trust their doctors. They generally have really good quality of communication with their providers. They’re getting some idea of prognosis, but for a lot of them, they don’t feel prepared. I guess my question is, can you ever feel prepared for the loss of your child? Na <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=2214990">36:54</a> Yes. So we did interviews after this data analysis and we asked parents, a lot of parents said, yeah, you can never prepare for your child at the end of life, but there is some level of acceptance and some preparation you can do. So. Eric <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=2232584">37:12</a> And it was important because, if I remember the abstract track, it was not at all prepared. Na <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=2237072">37:17</a> Like 40% of them were not at all. Eric <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=2240024">37:20</a> Not a little bit. Not at all prepared. Na <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=2242432">37:22</a> Yes. Yeah. So we find that the quality of communication and trust doesn’t really relate to grave symptoms, but the amount of prognostic information impact parental grief. It’s a significant impact. And when we add the preparation fund of life as a mediator, the pathway and the effect of prognostic information on grief disappeared. So which means the preparation fund of life is really important from communication to grave. Eric <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=2276274">37:56</a> So am I hearing this right? If you actually want to prepare people for the loss of somebody like their child, the communication and communication about prognosis is incredibly important. Na <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=2289728">38:09</a> Yes. But also the impact of prognostic information on grief mainly through the pathways. Yael <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=2299120">38:19</a> And when you say impact, just so we’re clear, that means more information about prognosis was associated with less grief. Na <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=2307416">38:27</a> Yes. Yael <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=2307896">38:27</a> Okay. I just make sure we understand the direction, more prognosis. That’s really important. Yeah. Alex <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=2312628">38:32</a> And that the way the prognostic, the greater prognostic information results in less grief is through better family preparation, better parental preparation for the loss of their child. Na <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=2327564">38:47</a> Yeah. So that highlights the end of life preparation is super important for parents when they deal with their grief. Alex <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=2335684">38:55</a> Right. And I wonder if you, you know, there are differences between what’s said and what’s heard. So might it be that the clinicians tried really hard to convey the prognosis and it wasn’t heard or reported as being heard? Na <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=2354326">39:14</a> Yeah, that’s a really good point because that occurs in our interview a lot. Alex <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=2359326">39:19</a> Can you say more about what you mean by that? Na <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=2361006">39:21</a> Yeah. So we did interviews after the data, the secondary data analysis. And in our interview, some parents said they listen to those information with a filter of hope. So Even though you tell the parents your child is going to die, but they still keep the hope that they don’t want to prepare for the end of life. But those parents also mentioned they would appreciate if the clinician can use different resources like connect with other braved parents or provide professional support like mental health service or therapist to talk with them, which can help them a little bit to accept that sooner. Alex <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=2406830">40:06</a> I have a question. I could interpret these results in sort of one of two ways. One way is this is a powerful study that shows clinicians relationships with parents of seriously ill children are strong. We can rely on the strength that those relationships and that trust to have the difficult conversations about prognosis to help parents prepare for the death. The other way I can interpret it more cynically is somewhat in the line of the late Green Jane Weeks study published in New England Journal. This was her final publication, I believe, where she found that patient satisfaction with their clinicians, and these are patients who had advanced cancer, was associated with having less awareness that they had a terminal cancer. Right. And so the cynical view is the reason they rated their clinicians so high is because they did not have a good prognostic understanding. And had the clinicians pushed the issue, then maybe satisfaction and trust in their clinicians would have diminished. I don’t know any thoughts about that from anybody now or anybody else. Na <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=2473060">41:13</a> Actually, I really like your first interpretation. Eric <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=2477620">41:17</a> We all do. Marie <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=2481740">41:21</a> I guess the thing that just strikes me the most is because I think it was. Was it Prigerson’s tool that you use for complicated grief and the things in adults were preparation or the bereaved family members found that preparation as well as the activities around the death or the circumstances around the death, whether they were traumatized by, you know, like CPR and all that business happening or you know, that those two things were really important. And so I’m wondering, it feels like it’s a very different situation with between adults dying and the family members of adults versus the family of parents of children dying. Do you think there’s a big difference? Na <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=2531240">42:11</a> I think so, because a lot of parents mentioned it’s very hard for them to accept that because it’s not the natural order. And they said, as a parent, you’re not supposed to bury your child. So that’s a really. That’s one of the barriers we identified about help parents to prepare for their child’s end of life. Like they need to overcome those, we call it. They feel defeated when they recognized their child is going to die. They felt like they should always fight so That’s a lot of barrier among parents, their own mind. Eric <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=2571394">42:51</a> Yeah, I got one. This is a lightning round question for each of you, because I’ve noticed in the last couple weeks I’m sitting with a lot of anger, and I’m recognizing that, and I need to fix it, so I need some positiveness. These studies, each of yours, I can imagine there are periods where, like, it’s incredibly hard. It’s frustrating. There are probably periods where you’re thinking, why did I decide to do this? But what’s one thing that you loved about your study, Marie? One thing you loved about it? Marie <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=2606428">43:26</a> I’d have to say that the people that we met at the rural hospitals, to a person, were so grateful to have any kind of resource or attention or specialty care available. And so it was just really gratifying and helped us through the difficulties. Eric <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=2636208">43:56</a> Great. Thank you, Yael. Yael <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=2639400">43:59</a> I’m going to say the research team, and I think it’s kind of embarrassing to look back at how long we’ve been working on this project for, and this team has stuck together. Covid hit. We had to pivot. People had to be flexible, really being willing to ask questions about advanced care planning models that have been around for decades in some cases. So I’m just very appreciative of that sort of curiosity and dedication. Eric <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=2672690">44:32</a> Great. Na <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=2674890">44:34</a> I appreciate all the stories I heard from those parents. At the very beginning, I felt that’s so hard to have those conversations when I do this research. But then when I heard them and they gave me a lot of positive feedback, they said, what I’m doing matters and very important for them. And then I felt the motivation to keep working. Eric <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=2700770">45:00</a> Well, I want to thank all three of you. Alex, I’ve come to talk to you again about singing the Sound of Silence. Can you do the Disturbed version of Sound of Silence, which is my favorite version of Sound of Silence? No? Have you heard this disturbed version? Alex <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=2715274">45:15</a> I don’t know what you’re talking about. Maybe. Yeah, maybe not. Here’s the Simon and Garfunkel version. Alex <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=2724690">45:24</a> (singing) Eric <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=2784410">46:24</a> Yeah. Yael, Na, Marie, thank you for joining us on this podcast. And a big shout out to Anne Kelly, who’s recording us for the video. Marie <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=2792410">46:32</a> Thank you. Eric <a href="https://grain.com/share/recording/87634679-9308-490b-9cd5-17a18136a6a4/9YlPRCeM58JTqyauwqkpWJaecxufWJbKi3auVZZA?referrer=docx&t=2793770">46:33</a> And thank you to all of our listeners for your continued support. </div> </div> </div></div><div class="vc_tta-panel" id="cme" data-vc-content=".vc_tta-panel-body"><div class="vc_tta-panel-heading"><h4 class="vc_tta-panel-title"><a href="#cme" data-vc-accordion data-vc-container=".vc_tta-container">CME</a></h4></div><div class="vc_tta-panel-body"> <div class="wpb_text_column wpb_content_element" > <div class="wpb_wrapper"> <h3 style="text-align: center;">***** Claim your CME credit for this episode! *****</h3> Claim your CME credit for EP343 “Plenary Abstracts at AAHPM/HPNA” <a href="https://ww2.highmarksce.com/ucsf/index.cfm?do=ip.claimCreditApp&eventID=15333">https://ww2.highmarksce.com/ucsf/index.cfm?do=ip.claimCreditApp&eventID=15333</a> Note: If you have not already registered for the annual CME subscription (cost is $100 for a year’s worth of CME podcasts), you can register here <a href="https://cme-reg.configio.com/pd/3315?code=6PhHcL752r">https://cme-reg.configio.com/pd/3315?code=6PhHcL752r</a> For more info on the CME credit, go to <a href="https://geripal.org/cme/">https://geripal.org/cme/</a> Disclosures: Moderators Drs. Widera and Smith have no relationships to disclose. Guests Yael Schenker, Na Ouyang, and Marie Bakitas have no relationships to disclose. Accreditation In support of improving patient care, UCSF Office of CME is jointly accredited by the Accreditation Council for Continuing Medical Education (ACCME), the Accreditation Council for Pharmacy Education (ACPE), and the American Nurses Credentialing Center (ANCC), to provide continuing education for the healthcare team. Designation University of California, San Francisco, designates this enduring material for a maximum of 0.75 AMA PRA Category 1 credit(s)™. Physicians should claim only the credit commensurate with the extent of their participation in the activity. MOC Successful completion of this CME activity, which includes participation in the evaluation component, enables the participant to earn up to 0.75 MOC points per podcast in the American Board of Internal Medicine’s (ABIM) Maintenance of Certification (MOC) program. It is the CME activity provider’s responsibility to submit participant completion information to ACCME for the purpose of granting ABIM MOC credit. ABIM MOC credit will be offered to subscribers in November, 2025. Subscribers will claim MOC credit by completing an evaluation with self-reflection questions. For any MOC questions, please email <a href="mailto:moc@ucsf.edu">moc@ucsf.edu</a>. </div> </div> </div></div></div></div></div></div></div></div></div></div> </div>The post <a href="https://geripal.org/plenary-abstracts-at-aahpm-hpna-yael-schenker-na-ouyang-marie-bakitas/">Plenary Abstracts at AAHPM/HPNA: Yael Schenker, Na Ouyang, Marie Bakitas</a> appeared first on <a href="https://geripal.org">A Geriatrics and Palliative Care Podcast for Every Healthcare Professional</a>. ]]></content:encoded> </item> <item> <title>How to Make an Alzheimer’s Diagnosis in Primary Care: A Podcast with Nathaniel Chin</title> <link>https://geripal.org/how-to-make-an-alzheimers-diagnosis-in-primary-care-a-podcast-with-nathaniel-chin/</link> <dc:creator><![CDATA[Alex Smith]]></dc:creator> <pubDate>Thu, 06 Feb 2025 08:00:05 +0000</pubDate> <category><![CDATA[All Posts]]></category> <category><![CDATA[Alzheimer's]]></category> <category><![CDATA[Diagnosis]]></category> <category><![CDATA[Podcasts]]></category> <guid isPermaLink="false">https://geripal.org/?p=7061</guid> <description><![CDATA[The post <a href="https://geripal.org/how-to-make-an-alzheimers-diagnosis-in-primary-care-a-podcast-with-nathaniel-chin/">How to Make an Alzheimer’s Diagnosis in Primary Care: A Podcast with Nathaniel Chin</a> appeared first on <a href="https://geripal.org">A Geriatrics and Palliative Care Podcast for Every Healthcare Professional</a>. ]]></description> <content:encoded><![CDATA[<div class="wpb-content-wrapper"><div class="vc_row wpb_row vc_row-fluid wpex-relative no-bottom-margins"><div class="wpb_column vc_column_container vc_col-sm-12"><div class="vc_column-inner"><div class="wpb_wrapper"> <div class="wpb_raw_code wpb_raw_html wpb_content_element vc_custom_1738797485695" > <div class="wpb_wrapper"> <iframe title="Libsyn Player" style="border: none" src="//html5-player.libsyn.com/embed/episode/id/35168400/height/90/theme/custom/thumbnail/yes/direction/backward/render-playlist/no/custom-color/00548f/" height="90" width="100%" scrolling="no" allowfullscreen webkitallowfullscreen mozallowfullscreen oallowfullscreen msallowfullscreen></iframe> </div> </div> <div class="vc_tta-container" data-vc-action="collapse"><div class="vc_general vc_tta vc_tta-tabs vc_tta-color-sky vc_tta-style-flat vc_tta-shape-square vc_tta-spacing-1 vc_tta-o-no-fill vc_tta-tabs-position-top vc_tta-controls-align-left"><div class="vc_tta-tabs-container"><ul class="vc_tta-tabs-list"><li class="vc_tta-tab vc_active" data-vc-tab><a href="#summary" data-vc-tabs data-vc-container=".vc_tta">Summary</a></li><li class="vc_tta-tab" data-vc-tab><a href="#transcript" data-vc-tabs data-vc-container=".vc_tta">Transcript</a></li><li class="vc_tta-tab" data-vc-tab><a href="#cme" data-vc-tabs data-vc-container=".vc_tta">CME</a></li></ul></div><div class="vc_tta-panels-container"><div class="vc_tta-panels"><div class="vc_tta-panel vc_active" id="summary" data-vc-content=".vc_tta-panel-body"><div class="vc_tta-panel-heading"><h4 class="vc_tta-panel-title"><a href="#summary" data-vc-accordion data-vc-container=".vc_tta-container">Summary</a></h4></div><div class="vc_tta-panel-body"> <div class="wpb_text_column wpb_content_element" > <div class="wpb_wrapper"> Things are changing quickly in the Alzheimer’s space. We now have biomarkers that can reasonably approximate the degree of amyloid build-up in the brain with a simple blood test. We have two new FDA-approved medications that reduce that amyloid buildup and modestly slow down the progression of the disease. So, the question becomes, what, if anything, should we do differently in the primary care setting to diagnose the disease? On today’s podcast, we’ve invited <a href="http://www.adrc.wisc.edu/nathaniel-chin-md">Nathaniel Chin</a> back to the GeriPal podcast to talk about what primary care needs to manage this new world of Alzheimer’s disease effectively. Nate is a geriatrician and clinician-scientist at the University of Wisconsin, as well as the host of the Wisconsin ADRC’s podcast, “<a href="https://www.adrc.wisc.edu/dementia-matters">Dementia Matters</a>.” In each bi-weekly episode, he interviews Alzheimer’s disease experts about research advances and caregiver strategies. Nate also wrote a NEJM piece last year on “<a href="https://www.nejm.org/doi/10.1056/NEJMp2401854?url_ver=Z39.88-2003&rfr_id=ori:rid:crossref.org&rfr_dat=cr_pub%20%200pubmed">Alzheimer’s Disease, Biomarkers, and mAbs — What Does Primary Care Need?</a>” We address the following questions with Nate: <ul> <li style="font-weight: 400;" aria-level="1">Has anything changed for the primary care doctor when diagnosing Alzheimer’s? How should we screen for cognitive impairment?</li> <li style="font-weight: 400;" aria-level="1">Does a good history matter anymore?</li> <li style="font-weight: 400;" aria-level="1">What’s the role of assessing function?</li> <li style="font-weight: 400;" aria-level="1">What do we do with those who have only subjective cognitive complaints?</li> <li style="font-weight: 400;" aria-level="1">Can’t we skip all this and just send some blood-based biomarkers?</li> <li style="font-weight: 400;" aria-level="1">What is the role of the amyloid antibody treatments?</li> </ul> Lastly, take a look at the following if you want to take a deeper dive into some of the other articles and podcasts we discuss: <ul> <li style="font-weight: 400;" aria-level="1">First, two competing definitions of what is Alzheimer’s: <ul> <li style="font-weight: 400;" aria-level="2"><a href="https://jamanetwork.com/journals/jamaneurology/fullarticle/2825806">Alzheimer Disease as a Clinical-Biological Construct—An International Working Group (IWG) Recommendation</a></li> <li style="font-weight: 400;" aria-level="2"><a href="https://alz-journals.onlinelibrary.wiley.com/doi/10.1002/alz.13859">Revised criteria for diagnosis and staging of Alzheimer’s disease: Alzheimer’s Association Workgroup</a></li> </ul> </li> <li style="font-weight: 400;" aria-level="1"><a href="https://alz-journals.onlinelibrary.wiley.com/doi/10.1002/alz.14333">Alzheimer’s Association clinical practice guideline for the Diagnostic Evaluation, Testing, Counseling, and Disclosure of Suspected Alzheimer’s Disease and Related Disorders (DETeCD-ADRD): Executive summary of recommendations for primary car</a>e</li> <li style="font-weight: 400;" aria-level="1">Podcasts we mentioned <ul> <li style="font-weight: 400;" aria-level="2"><a href="https://geripal.org/prevention-of-dementia-kristine-yaffe/">Prevention of Dementia: A Podcast with Kristine Yaffe</a></li> <li style="font-weight: 400;" aria-level="2"><a href="https://geripal.org/screening-for-dementia-a-podcast-with-anna-chodos-joseph-gaugler-and-soo-borson/">Screening for Dementia: A Podcast with Anna Chodos, Joseph Gaugler and Soo Borson</a></li> </ul> </li> </ul>   ** This podcast is not CME eligible. To learn more about CME for other GeriPal episodes, <a href="https://geripal.org/cme/">click here</a>.   <hr />     </div> </div> </div></div><div class="vc_tta-panel" id="transcript" data-vc-content=".vc_tta-panel-body"><div class="vc_tta-panel-heading"><h4 class="vc_tta-panel-title"><a href="#transcript" data-vc-accordion data-vc-container=".vc_tta-container">Transcript</a></h4></div><div class="vc_tta-panel-body"> <div class="wpb_text_column wpb_content_element" > <div class="wpb_wrapper"> Eric <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=800">00:00</a> Welcome to the GeriPal podcast. This is Eric Widera. Alex <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=3512">00:03</a> This is Alex Smith. Eric <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=4376">00:04</a> And Alex, we got a live in-person guest with us today. Alex <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=6080">00:06</a> Yes, a live in-person guest with us, Nate Chin, who is our visiting professor for grand rounds and has got a full day and is joining us for the podcast. To start things off, Nate’s a returning guest. He is associate professor at the University of Wisconsin and medical director of their Alzheimer’s Disease Research Center. Nate, welcome back to the GeriPal Podcast. Nate <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=25848">00:25</a> Thanks for having me. Great to be back. Eric <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=27848">00:27</a> So we’re going to be talking about making the diagnosis of Alzheimer’s disease in a primary care setting, not specialty care, but maybe we could talk a little bit about that. But before we do, we always start off with a song request. Nate, what is your song request for Alex? Nate <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=42486">00:42</a> Jungle Land, by Bruce Springsteen. Eric <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=44630">00:44</a> Why did you pick this song? Nate <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=46230">00:46</a> This is in honor of my father-in-law, Steve Hoppe, who passed away last fall. He was a die hard Bruce Springsteen fan and he went to, I think over 30 concerts. And my wife went to over, I want to say, 20 concerts. Eric <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=58566">00:58</a> Have you been to a concert? Nate <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=59462">00:59</a> I went one in Milwaukee, Wisconsin, and I’m so glad I did. I loved it and this was his favorite song and so I wanted to do it. Alex <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=67466">01:07</a> And Bruce Springsteen did a stage dive. We were talking about this before. Nate <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=71130">01:11</a> Very healthy man. Alex <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=72426">01:12</a> Very healthy man. I wonder how old he is now. And he’s stage diving and he’s incredible. All right, here’s a little bit. Alex <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=85530">01:25</a> (singing) Alex <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=158970">02:38</a> It just goes on and on and on, verse after verse. At first it’s a beautiful story and it just reminds me how much of a storyteller is. Okay, Non Sequitur. I just saw that movie, a Complete Unknown, about Bob Dylan. Incredible movie. I loved it. Timothee Chalamet did a good job. A lot of the costars did a great job. And I would say that one thing I wish it did better was show how Bob Dylan told stories with his songs in much the same way that Bruce Springsteen does. And someday there’ll be a great documentary About Bruce Springsteen. Eric <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=190940">03:10</a> I think this is just a plug for future guests that Alex wants more Bob Dylan songs. Don’t let him fool you, future guests. [laughter] All right, let’s jump into the topic. Things are changing real fast in Alzheimer’s world. So we now have blood tests that can reasonably approximate the degree of amyloid buildup in the brain. You got two new FDA approved meds that you can give to shrink that amyloid all the way. How much has this changed? How much should it change how we think about making a diagnosis of Alzheimer’s disease in primary care? What do you think? Nate <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=235970">03:55</a> I don’t think it changes anything about what we should be doing in primary care. And that’s because the syndrome of mild cognitive impairment and dementia doesn’t change. Right. So we need to know if a person’s having symptoms. We need to know if people are forgetful, if they’re losing their attention, if they’re struggling to solve problems like cook or clean or do any of those things. So knowing if it’s amyloid or if it’s tau or if it’s Lewy Body disease or vascular disease, that doesn’t really matter because we need to know what people are experiencing. And so I don’t think the biology is incredibly important, so don’t get me wrong, but what people are experiencing, which is fundamental and what we really care about, that hasn’t changed. And so in primary care, which they’re perfectly situated to address, that hasn’t changed. Eric <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=288960">04:48</a> That’s fascinating. So it sounds like what you’re saying is making a diagnosis of cognitive impairment is kind of paramount first over making the diagnosis of Alzheimer’s disease. Did I get that right? Nate <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=301632">05:01</a> Absolutely. Absolutely. Fundamentally, we need to be better, all of us, at addressing symptoms and getting to the diagnosis of MCI and dementia. Eric <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=313210">05:13</a> All right, I’m going to start off at the beginning, then. So let’s just say you have a healthy 55 year old or 65 year old in your clinic. Who do you think we should be screening and how should we be screening them for these symptoms? Nate <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=329234">05:29</a> Ooh. Well, so I guess it depends on what you say screening. Because if you’re the United States Preventive Task Force, they’re going to tell me, well, don’t screen any asymptomatic person. And what they’re really saying, which is fair, is don’t be giving a cognitive screen screening tool, a moca, a mini mental, to someone who’s healthy. And that’s fine if that’s what the evidence is bearing for now. Eric <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=352630">05:52</a> But really, because we got no Good randomized controlled trials. That screening influences kind of further treatment, actually, probably more importantly, patient outcomes. Nate <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=364430">06:04</a> Right. And it can cause harm because if you’re springing this test on someone, it actually could create a lot of anxiety. It can create mood changes. But the key part of that is asymptomatic person. Who should we be screening as far as. Are we worried about our thinking? Everyone. So whether it’s 50, 52, 55, 65, we should ask every person who comes into clinic at least once a year, how do you feel like your thinking is? Do you think your thinking has changed compared to last year, five years ago, 10 years ago? It’s a simple question. It normalizes the fact that there are other factors besides Alzheimer’s disease that can affect our thinking, like depression, like sleep apnea, like your medication side effects, like a thyroid. So every person should be asked, what’s your thinking like? Alex <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=408834">06:48</a> So is that. So that’s. And you’re not categorizing that as screening for Alzheimer’s disease or mild cognitive impairment. You’re calling that screening for thinking issues, which you’re saying is different. Nate <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=421330">07:01</a> Well, I mean, I guess I’m kind of walking that line because if that person says, well, you know what, Doc? I do feel like my thinking is different. Oh, well, because now I want to explore that, because now I’m going to characterize what is that thinking change. And that gives me one of the criteria potentially for mci. That’s that subjective complaint. And then that would actually lead me to using a screening tool like a mini mental or MOCA to look for an objective impairment. Eric <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=447972">07:27</a> Okay, I got a question then. Yeah, there’s this also idea is as we age, our body changes, organs change, our way, we think changes, sometimes for the negative, sometimes for the positive. Like, there are some things we do better with age, as we think there are some things that we do worse. How important is it that, like, compared to 10 years ago? I think I. I think differently than I did 10 years ago. Nate <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=476950">07:56</a> Yeah. And I. And I think that’s true now. I. You know, we’re all geriatricians here, so I do want to be careful that just getting older doesn’t mean everything’s declining. Right. So you did say some things get better, wisdom gets better, emotional maturity can get better. Eric <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=492540">08:12</a> I’m not sure that got better for me, but. Nate <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=496540">08:16</a> And there are some. Alex <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=497548">08:17</a> Ask your wife. Nate <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=498212">08:18</a> Yeah, I didn’t want to say it. You know him better than I do. And there are some lifespan studies, right, that at the age of 25, we reach our peak Cognitive performance, there’s gradual changes, so I recognize that. But I do think that we are really entering this age of are we really at our optimal? Like, if we truly address all those health factors, brain health, if we truly are addressing those, perhaps we could be better than what we were doing. And perhaps that means even now, maybe I’m not at my best, maybe you’re not at your best. I do think our culture, we have undervalued sleep so long only until the 1960s did exercise really become something. And so are we truly addressing those lifestyle factors that could be leading to cognitive reserve? And with the Lancet Commission coming out with those 14 modifiable risk factors that could prevent dementia, could those actually lead to improvements in cognition? We have those studies that show cognitive ability can improve when we address some of these things. And so asking about that, I mean, perhaps people could actually feel better and then we’re just talking about well being. But if we catch someone who says, well, actually I do feel like my thinking is worse, well, then I think exploring that is worthwhile and could lead to people feeling better. It could also catch the very earliest change of mci and then we do go down that path. Alex <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=586874">09:46</a> Yeah. So maybe we wouldn’t call that a screening question. Maybe we’d call that more an assessment of people’s thinking and that, you know, a yes, no response isn’t sufficient for the clinician. You have to probe beyond that to see whether this is a concerning maladaptive change in the way somebody’s thinking or not. And also a plug for our listeners to check out our podcast with Christine Yaffe on prevention of dementia through changes in non pharmacological behavior and lifestyle factors. Eric <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=618814">10:18</a> I’ll put that in the show notes too. And I love this what you’re saying, Nate, because my sleep has not been good in the last couple weeks and I actually do think that’s affecting my thinking and I should probably do something about my sleep. That question opens the door for so many different avenues that you could potentially address, from mood to sleep to exercise. So I love that question. As far as the next step, when would you do an objective cognitive screening? Nate <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=654330">10:54</a> You know me, and so I’m. So we’re talking about primary care and so I’m a little bit biased here. So I’m in a specialty clinic, so I’m in this interdisciplinary memory assessment clinic. So I get all the referrals from my great colleagues in primary care. And I’m seeing people coming in with mini mentals of 10 out of 30 who we end up doing thoroughly testing and they’re perfectly healthy and they’re scoring well. And when I asked the patient, well, what happened, the test was sprung on them. It was administered by a well meaning person who doesn’t know what they’re doing when they administer the test. It was rushed. They said to them, you have dementia. And they never really conducted a functional history. And so I’m seeing case after case of these really bad situations. And I know there’s plenty of good situations out there too, but what I’m seeing are scores that are meaningless. And so I really worry about cognitive screening not being done properly. And I do say this knowing that I don’t administer these cognitive screening tests in the right way. And I work with a lot of neuropsychologists and they will all tell you I don’t do it well. I’m holding on to the MOCA instructions and I’m reading it verbatim. I’m like a machine done, and I’m not doing it well, if you aren’t doing this regularly, if you aren’t confident in what you’re doing, if you don’t show compassion and yet stick to the rules, these instruments aren’t that helpful. And so I do worry about cognitive screening in primary care. And I know people don’t agree with me in this. I know lots of people don’t agree with me in this. And so it’s hard for me to imagine the beauty and complexity of the human brain broken down into a number that is done in a 10 minute test. And I know we want that. But these tests were never designed to diagnose. Eric <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=760386">12:40</a> 10 minute test, 2 minute test. You got your mini cog right there. Alex <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=763242">12:43</a> Mini cog, yeah. And a shout out to our podcast with Sue Borson, creator of the mini cog, and Anna Chodos about assessment and screening. Similar to this podcast, though, I gotta. Eric <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=775858">12:55</a> Keep on writing down all the podcasts. Alex’s plugin right now, so I don’t forget to put on this. Nate <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=779770">12:59</a> You guys have done some great interviews And I know Dr. Vorson and I mean, I think that’s incredible work. I just think when it, it’s hard, it’s hard to break down what the brain can do into something so simple. You know, it’s meant to filter, it’s right. It’s meant to screen who really is impaired or could be impaired and who’s not. But it’s so much more difficult than that. Whereas if you look at function, if someone comes in and tells me, I am struggling with remembering things that just happened to me? Well, there’s my complaint. And then the family tells me they can’t keep an appointment, they can’t manage their finances. What is that screening test gonna do for me? I already know that the complaint is severe enough that it’s starting to impact their function. That is enough for me that I would want them to come to my clinic where I have a neuropsychologist that’s gonna conduct a 50 minute thorough cognitive assessment. And now I’m gonna get a real sense of what the brain is able to do. I just don’t know what the point of that screen is gonna do. It might actually scare the person. It might make them so frustrated they’re not willing. Alex <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=842370">14:02</a> Oh, this sounds so hard, Nate. Like it’s hard to do it. Well, even for somebody like you, who’s pretty familiar with the instruments, it might cause distress for the patient, maybe their family. There’s got to be an easier way. And I have to ask them about all these other things like seat belt use. And I gotta manage their blood pressure and their diabetes meds. I’m just gonna send them to lab and get the blood test. Nate <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=865090">14:25</a> Oh. Eric <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=867660">14:27</a> You mean a TSH Alex? Nate <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=871420">14:31</a> I appreciate that. Thank you. Because I would rather you look for reversible causes. Right. I’d rather you do something like that. No, I don’t want you to get the blood tests. And I don’t know if others in the specialty world would disagree with me, but I’m not in favor of these blood tests being in primary care. Eric <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=888300">14:48</a> And we’re saying the blood tests being facetious with the TSH, the PRS, you’re talking about amyloid biomarkers, your P. Taus, your amyloid ratios. Like those are the things we’re talking about right now. Nate <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=902670">15:02</a> That’s right. That’s right. And they are incredible tools. And for my grand rounds, I’m going to be talking about what they can do. And I think it’s amazing at a scientific level, even at a clinical level, for our listeners. Alex <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=913622">15:13</a> Could we give a preview? I’d love to hear more about that. I’m sure. Our listeners. Eric <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=917382">15:17</a> What do they do? Alex <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=918094">15:18</a> Yeah. Nate <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=919080">15:19</a> So what can they do? So they can reliably detect the presence of amyloid up to 10, 20 years before a person develops symptoms in certain groups. And this is all cohort based, meaning these are just in certain. Eric <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=933992">15:33</a> And when you say certain groups, you mean very white, wealthy folks? Nate <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=938360">15:38</a> Well, I mean in the rap population. Wisconsin Registry for Alzheimer’s Prevention, 22% of our population are African Americans. Hey. Or are things are changing groups. And so it is changing slowly. Yes, they’re predominantly white and urban and well to do, but that is slowly changing, and the numbers still are different. So you’re right. But that is a reason why we do need more people of color to come in so that we can understand it. And it still could be different. And I think there are reasons for that. We need to understand that. But it doesn’t change the fact that when you do have amyloid in the brain, there is this very strong connection between amyloid chronicity, meaning how long you have amyloid in the brain, and the likelihood of developing tau, and that’s Alzheimer’s disease. Pathologically, the likelihood of having cognitive decline on testing and the likelihood of developing dementia. There’s a biological timeline that we are really starting to be able to describe, and it all starts with the first identifiable process, which is amyloid. And so when you start seeing this, it’s pretty convincing how important it is, at least from a scientific perspective. And then you’re going to ask the question of, well, you need. Eric <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=1007894">16:47</a> Is it determinalistic? If you have amyloid, will you develop Alzheimer’s, dementia? Alex <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=1014120">16:54</a> And just to be clear here, are we still talking about the blood tests for amyloid, or are we talking about, like, CSF or imaging studies? What are we talking about? Nate <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=1021440">17:01</a> Well, no, the blood test. I mean, these days, a blood test looks just as good as the spinal fluid, and it looks almost as good as these PET scans. The PET scan has really been the. The gold standard biomarker tests. But it does look really good now. Now, frankly, at ucsf, the researchers here are phenomenal when it comes to these PET scans. I would say the researchers in Wisconsin are really good, too. And they are. I mean, they’re showing they’re comparable. I mean, there are certain advantages to the blood test. Obviously, it’s a lot easier to collect, more scalable. We can get more people, particularly people in, you know, where we’ve difficult. We’ve had difficulty in recruiting and engaging in those communities, and that’s on our end. It’s not on the community’s end. PET scans, though, the beauty of a tau PET scan is you can see where the tau protein is geographically in the brain, and I think there’s a lot of value to that. But we’re getting into the weeds. I just think there’s a lot of power in these biomarkers. But to the person, I would say that when a person comes into a primary care clinic, you want to know, well, what exactly is happening to me? And. And first thing Is, well, let’s describe what’s happening to you and that’s what primary care is really good at. Let’s collect that history, let’s look at those reversible causes and then let’s start talking about the potential brain diseases. And that of course, if you feel comfortable in primary care, then great. If you want to see a specialist, that’s where I would potentially do that handoff to a specialist and they would be doing the blood test or. Well, I would actually do neuropsychological testing first and then do the blood test. Eric <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=1119430">18:39</a> Yeah, I do worry a little bit because I recently had a primary care appointment. Well, not recently, like six months, a year ago. I forget when after not having had one and even before I saw the person. I just had lab tests done. I didn’t know which lab test got my lab tests looked on there. All of a sudden, as a 49 year old, I see I have a PSA on my lab test. There was no shared decision making about the psa. It just happened. Alex <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=1148480">19:08</a> This is the reality. Same thing happened to me. Eric <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=1150264">19:10</a> Yeah, right. Alex <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=1150680">19:10</a> Yeah, I got a psa. Yeah. Eric <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=1152480">19:12</a> I also had like these, like my lipids were broken down into every possible category. So I worry that this is going to be like Alex said, it’s the shortcut. Like you could spend a half an hour with a patient getting a great history, functional history, doing an exam, doing some basic workup first and then getting those amyloid biomarkers potentially, or just sending them to specialty clinic. Or press the easy button, get that amyloid blood biomarker and call it a day. Nate <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=1189570">19:49</a> Yeah. Well, first of all, let me say I feel sorry for the two of you because that is a horrible experience. I mean, I don’t want to speak to your healthcare system and what’s happened, but that to me seems inappropriate. I Recently, I turned 41. So when I turned 40, I went in to get my checkup. I hadn’t been to the doctor in five years and I’m the one who said, please, can I have an A1C? Can I have a lipid panel? I want to be checked for these things. I had to ask for that. There was no labs ahead of time and that’s how I think things should be. And so maybe it’s a little bit different in the Midwest, I don’t know. But I don’t think it’s appropriate to order these things in advance. I agree with you. Shared decision making is critical. I do think there is something different about Alzheimer’s than there is about high cholesterol. And even a prostate cancer. Cancer, I know is still a scary word, but I do think someone has to own the result in the counseling of that result. So for primary care providers, you order that blood test, you own that. And I think that’s a common part of our culture. You should be scared. You order that amyloid test and you don’t have shared decision making. You should be fearful of having that, that conversation when your patient comes in. I think that fear is enough that you’re not going to order it, fearful. Alex <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=1263990">21:03</a> Of it coming back positive and you hadn’t had the conversation. And then. And then what? Eric <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=1269054">21:09</a> And this, what does it mean? Nate <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=1270398">21:10</a> Right? Alex <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=1270734">21:10</a> Yeah. And then how are you going to explain this to the patient that, well. Eric <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=1274334">21:14</a> What does it mean to, let’s say an asymptomatic 50 year old? Nate <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=1278894">21:18</a> Oh my gosh. Right. And that’s the. Because that’s even being debated in the field of experts. Eric <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=1284048">21:24</a> We don’t know what it means yet. Alex <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=1285320">21:25</a> Right, but didn’t you just say a little while ago that there’s a clear correlation between these biomarker tests and development of Alzheimer’s disease? Nate <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=1296688">21:36</a> I don’t like how close you listen to me. Well, so there is a debate in the field as to the definition of Alzheimer’s disease. Right. So the new criteria came out. Amyloid alone is enough of a definition of Alzheimer’s. So in someone who’s cognitively healthy, having the presence of amyloid would be enough for the definition of Alzheimer’s disease. Alex <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=1315428">21:55</a> Is that a done deal? Eric <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=1316540">21:56</a> That is per the Alzheimer’s association. Nate <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=1318068">21:58</a> That’s only per one set of criteria. Right. Alex <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=1320428">22:00</a> Per the Alzheimer’s association. That is a done deal to the Alzheimer’s association. Eric <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=1324116">22:04</a> Done deal to Alzheimer’s association. There is a different work group. Nate <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=1327020">22:07</a> There’s a different. There’s an international work group and then there’s clinicians in general who are facing patients who are asking these questions too. And so I think there’s just a dispute discussion in the whole field about, well, what are we talking about? And certainly the criteria said we shouldn’t be testing people who are cognitively healthy. Eric <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=1344280">22:24</a> Of note, that is on box four, page 14, nowhere else, one sentence. You shouldn’t do this. You shouldn’t test asymptomatic people. No suggestion of what you should do with subjective cognitive complaints. Like, is that okay to test people? Like, if somebody comes in, they watch an advertisement during the super bowl, they say, hey, if you forgot your keys, you should talk to your doctor about checking your amyloid levels in your brain. Eli Lilly. They’re not asymptomatic anymore. They have subjective cognitive complaints. Hey, let’s press that easy button, and let’s get those Alzheimer’s biomarkers done. Nate <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=1385600">23:05</a> I think they were saying that if you weren’t impaired, though, I mean, because they’re breaking into asymptomatic MCI and dementia. So I think they were grouping everyone into that one. Eric <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=1393676">23:13</a> I just think it should. If they don’t want it done, it should be on page one. Don’t do it. Alex <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=1398684">23:18</a> Wait, they meaning the Alzheimer’s Association? Eric <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=1400692">23:20</a> Yeah, in the work group. Alex <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=1401676">23:21</a> In the work group. And these are the proposed guidelines. Eric <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=1405220">23:25</a> I’ll get off my bandwagon. Alex <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=1407460">23:27</a> We want to hear this. Eric <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=1409500">23:29</a> One of the proposed guidelines on how to diagnose Alzheimer’s disease. Alex <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=1414020">23:34</a> Okay. And it’s proposed. Eric <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=1415748">23:35</a> Yeah. Define Alzheimer’s disease. Alex <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=1418676">23:38</a> Okay. Not accepted dogma throughout the field yet. Maybe. Although Nate sort of talked about it just a moment ago like it was maybe. Nate <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=1425968">23:45</a> Well, so. So what I’m saying to you is that when you start looking more and more at these cohort studies, meaning individuals who have volunteered for decades, and you start looking at the science of what happens when people are followed and they have amyloid in their brains, and you see that many of them, most of them, are developing Taurus, and if you follow them long enough, are they developing symptoms, and we need to follow them longer. And I can speak to the RAP study, the Wisconsin Registry for Alzheimer’s Prevention study, and that’s been around for 24 years. And we are seeing people with amyloid, and nearly all of them that develop amyloid, that live long enough, that have amyloid for more than 22 years, are developing tau. Eric <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=1464996">24:24</a> So we just gotta follow them for 100, 200 years, and then all of them will develop Alzheimer’s. Alex <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=1471636">24:31</a> And I thought you were gonna end that with. And many of them are developed tau. I thought you were going to end with many of them develop Alzheimer’s disease. Developing tau is not a disease. Nate <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=1482010">24:42</a> Well, no. So if you have amyloid and you have tau biologically. So now, again. So prior to the new criteria that were proposed in 2018, the criteria were the presence of amyloid in tau was the definition of Alzheimer’s disease. And that is the neuropathic definition of Alzheimer’s disease. And so now you’re getting into the nuance of. Are you accepting of an asymptomatic phase. Eric <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=1505912">25:05</a> Of Alzheimer’s disease or subjective cognitive plans without any objective, like asymptomatic assumes that there’s. Where does the subjective cognitive complaint. I forgot my keys. I’M forgetting some groceries. Commercial says this is more than normal aging. But when Nate sends me to the neuropsychologists, they do this testing, they find nothing. But somebody checked an amyloid test on me and it’s positive. Do I have Alzheimer’s disease? Nate <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=1537584">25:37</a> Yeah. Eric <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=1538480">25:38</a> I think that is the big controversy right now. What should we label those people? Not just asymptomatic, but subjective cognitive complaints. If somebody does this test, and per the Alzheimer’s disease work group, it is, you have Alzheimer’s disease, could they be you shouldn’t have done it, but you got it. Nate <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=1554898">25:54</a> Yeah. Alex <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=1555562">25:55</a> And why does this matter? Whether you. What we call it. Is this just semantics? Whether we call the person, we say the person has Alzheimer’s disease or doesn’t like. From the perspective of advancement of research and development of interventions, maybe we do want to call it Alzheimer’s disease. Whereas maybe from the perspective of a patient who has got some subjective mild memory complaints and a positive amyloid blood test, they don’t want to be called, you know, labeled as having Alzheimer’s disease. They’re still working, like, what’s their employer going to do? Nate <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=1591474">26:31</a> Right, right. Yeah. Eric <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=1592378">26:32</a> They’re an airline pilot. Alex <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=1593482">26:33</a> Yeah. Eric <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=1593802">26:33</a> Can they fly anymore? Because they have Alzheimer’s disease. Nate <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=1596122">26:36</a> Right. So it matters a lot to the person, to their family, to the community. Right. So that’s a powerful term. Eric <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=1602130">26:42</a> Yeah. Nate <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=1602586">26:42</a> And so if we’re going to be using that term in a new way, there’s a lot that has to go into the education and reframing of that. Eric <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=1610378">26:50</a> Yeah. And diagnosing a disease drives treatment, so there will be an inherent push to start. These amyloid antibodies in people who don’t fit the categories that were included in the studies, MCI and mild dementia. You have somebody with subjective cognitive complaints, no objective issues, but they got a positive amyloid. That’s pretty scary. Alex <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=1635124">27:15</a> What about these amyloid drugs like lecanemab, Donanemab? Those drugs? Nate <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=1640512">27:20</a> Yeah. But now there are already those studies, though. So Trailblazer Alz 3 and then the head study, these are good studies that will likely result ahead, will probably result in the next couple of years. Trailblazer ULS 3 could potentially result this year or next year. And those were people who do not have mci, who have amyloid in their brain, were given these monoclonal therapies, and they are looking at those similar outcomes. Eric <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=1665840">27:45</a> Yeah. Nate <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=1666384">27:46</a> So. So that would potentially tell us what is the meaning of. Of these interventions in those individuals. Alex <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=1671782">27:51</a> So this is what Eric was talking about. This is the patient. Eric’s talking about subjective Memory complaints, but doesn’t even have mc, doesn’t even meet the criteria for mci. And we’re starting them really early. Nate <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=1682798">28:02</a> Right. Alex <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=1683406">28:03</a> And my recollection from the early drug tests for anti dementia medications was you got to start earlier, probably because those studies were negative. So maybe there is a scientific rationale that if we’re going to intervene, it’s better to intervene early than later, right? Nate <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=1701010">28:21</a> Could be, yes, could be. That does make sense. And then Donanemab’s phase three study, Trailblazer LS2, they split people into those who had low medium tau and those that had high tau. And those that had low medium tau did respond better to Donanemab than those with high tau, suggesting that those who are earlier in the disease do respond better to therapy than those later in the disease. Alex <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=1723164">28:43</a> So what’s the harm here? I think we should be. Shouldn’t we? Don’t we want to know early? I mean, I would want. Does the public. If you ask the public, if you ask older adults, don’t you want to know early on the chance that you might be able to intervene early? Think about the number of people who sign up for clinical trials, et cetera, on the basis of, you know, they think it might help them, though, you know, it’s not. It’s. These trials are designed to help future patients. Most of the public wants to have access to treatments and interventions that might help them forestall a devastating illness. Nate <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=1758250">29:18</a> Well, we’re waiting. I mean, but I think we’ve kind of gone off on a different path here. But we went from primary care to this. Eric <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=1764290">29:24</a> Welcome to the Jerry Pop Podcast. It’s not as formulated as Dementia Matters, your own podcast. Alex <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=1770074">29:30</a> But I. Dear listeners, I’m trying to be provocative. Let’s see if I can get a rise out of it. Nate <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=1774818">29:34</a> And I think, though, that, I mean, this. This is the point of scientific investigation in clinical trials. And Eric is bringing up some really interesting and important questions which are being addressed with these clinical trials. And so for our listeners, we should come back to this episode, because when these trials result, Eric might be sitting here and saying, see, I told you these trials are going to tell you. Eric <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=1797982">29:57</a> Don’T do this, or, hey, it worked, let’s change this definition. Nate <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=1803238">30:03</a> Or Eric is going to have me fly out so I can sit here and be like, well, now what are we going to. Because these trials resulted and there’s benefit. And I know what he’s going to say. Well, it’s a clinically meaningful. Eric <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=1813274">30:13</a> Yeah, we all know if it’s beneficial, it’s going to be some. Nate <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=1817810">30:17</a> Well, and we can have that conversation. But, you know, there is a. There is rationale. Earlier is better. But we do need to prove that in a trial, in a structured, you know, scientifically sound trial. Yeah. And so that is for a different population than the person coming into clinic that has a diagnosis of MCI or dementia. Eric <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=1836280">30:36</a> Well, I gotta ask another question about trials, because there is this discussion online about maybe not even online fda. What about just forgetting these patient outcomes and just look at these surrogates, like amyloid, as our results for the trial. Should we just say, for these new studies, all that really matters is, does it reduce amyloid? That is a great surrogate marker. Because as you said, said, Nate, if you follow people long enough and if they live long enough, they’re gonna develop Alzheimer’s disease. Maybe. Mostly. Well, let’s just use that as our surrogate. Nate <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=1876148">31:16</a> Well, no, I don’t. I mean, ultimately, we’re in this to help people, so that’s a dangerous path to walk down. I do think, you know, if earlier is better and you want to talk about prevention. Eric <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=1887620">31:27</a> Yeah. Nate <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=1888516">31:28</a> And it takes 30 years, 20 years of developing amyloid and tau and 10 years of developing symptoms and then dementia. We can’t wait long for a prevention study to then see if it works or not. So you do need a surrogate in a prevention study. And I mean prevention of developing the amyloid that you would have to have already established leads to the development of dementia. So you already have to do steps before you get to that. And that’s what these longitudinal studies are so important for. So, I mean, the interesting thing to me is that I hear a lot about, well, these clinical trials are really. Are they going to put longitudinal studies out of business? Like, do we need longitudinal studies? I think it’s the complete opposite. I think these clinical trials are emphasizing the importance and gratefulness that we have for participants who have been in studies for 30 years, because we need them to continue to be in studies. Because ultimately we need to know the questions that we’re getting at. Does amyloid always lead to dementia? And we need people to be in the study for 40 years, 50 years to know that. Because if we do know, if we can show in multiple different cohorts, meaning Wisconsin and Adni and Baltimore and Mayo and down in Texas, if we can show that, if you develop elevated amyloid and that will lead to dementia, if you live long enough, well, then that’s your conclusion. Then removing amyloid or preventing the buildup of amyloid means you prevent that type of Dementia. We still haven’t talked about vascular and Lewy Body. They’re equally important. But I mean, at least that string of dementia could be prevented. Eric <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=1985478">33:05</a> So can I ask you then, going back to the biomarkers, you know, I’ve heard that the most common type of dementia is mixed. There’s a lot of going on in the brain from vascular issues. And when we think about prevention, like, there’s more more to it, even like depressive symptoms of sleep and everything else. When you get a positive biomarker, how do you interpret it, knowing that there’s probably a lot of other things going on in the brain? Nate <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=2013892">33:33</a> Absolutely. It’s just one piece of data. And that’s why a biomarker can’t give you everything you need. You need a clinician to put everything together. I mean, I feel like you’re just giving my grand rounds for me. I mean, honestly, I was going to practice before 4 o’clock today and I don’t feel like I need to. I feel like this is done. I mean, I talk about, can we. Eric <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=2034432">33:54</a> Just show this video during the grand round and you’re done? Nate <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=2037248">33:57</a> I could just sit back and just bring my guitar. I can have some fish tacos with you guys and just sit around. No, I agree with you. And I think what is super fascinating to me, I don’t want to go too much in the weeds, but what I find really interesting is the timing aspect. And this is why I think the biological process and timing of these biomarkers is so important. Let’s say someone comes in and they have dementia. We’ve diagnosed them, we’ve done this proper workup, they have dementia, mild stage dementia, and we get a PET scan and it’s amyloid elevated. Well, traditionally we would say, okay, well, you have dementia and it’s due to Alzheimer’s disease. But if we knew that they had just become elevated in amyloid, that two years ago they were not elevated and they just became elevated, I would say to you, no, that’s not Alzheimer’s disease. Dementia, something else has been going on for years that caused that dementia and it just became, yes, Alzheimer’s. This process is probably there and it’s. Eric <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=2092534">34:52</a> Building because every decade you get older, the chances of you having amyloid in your brain increasing is increasing. Nate <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=2098134">34:58</a> But I would say something else is there. So I actually think there’s a lot more nuance to just the biomarkers. So there’s other things that are happening that are probably contributing. But even just the nuance to the biomarker and the timing which is why I worry about primary care having to go through this process and explain it. Because when I think about it, and I think about these things every single day, it takes me 30, 45 minutes to talk to my research participants about these biomarkers. And a primary care provider has 18 minutes. And Alex said they got to talk about other health conditions, equally important, high blood pressure and cholesterol. And how can I expect a primary care provider to do that? Eric <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=2135880">35:35</a> So I do want to acknowledge. So that’s something about Alzheimer’s association. They actually published a really good article in December on what’s the role, how should we diagnose Alzheimer’s disease in primary care? Beautiful flowcharts. And it kind of mimics exactly what you’re saying. The role of the biomarker comes very late in that diagnostic pathway, generally at the specialist and in primary care, it’s what you’re saying. You do the history, you do a physical exam, you’re doing non specific, you know, blood tests and potentially imaging, and only after that do we even consider the role of biomarkers. Does that sound right? Nate <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=2177428">36:17</a> It does. Alex <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=2177924">36:17</a> And when you say non specific blood tests, you’re talking about like the TSH, the RPR, that sort of stuff. Eric <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=2183356">36:23</a> Okay, yeah. You know, basic CBC, like those types of things, right? Alex <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=2187684">36:27</a> B12. Eric <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=2188516">36:28</a> Yeah, but you’re, you’re. The most important thing, like Nate is saying is that the history, like, is that. Are they depressed? How’s their sleep have been different? Have they been drinking every night? Like, what’s going on in their life? What’s their functional status? And we’ll have a link to those Alzheimer’s diagnostic kind of guidelines, which I think are fabulous. Great flowcharts for anybody who wants it. And importantly, those biomarkers are really reserved mostly for specialty care. Nate <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=2214408">36:54</a> Yeah, I think they nicely described that. Alex <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=2216312">36:56</a> Eric just gave kudos to the Alzheimer’s disease. Eric <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=2218512">36:58</a> I give kudos about. Yeah, it was great. Importantly, there are no pharma or diagnostic companies involved in that work group. So kudos on that too, like starting to think about conflicts of interest. So big kudos. I’m going to get off my rant. Nate <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=2237770">37:17</a> To the next one. Eric <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=2239194">37:19</a> Yeah, to the next one. I’d love to hear your thoughts. So let’s say you do this diagnostic workup you have diagnosed with MCI or mild dementia. You send them to the specialist, confirmed, they do blood tests, they may do a PET scan. What do you think the role of the amyloid antibodies are in this case? How do you talk to your patients about the benefits and the potential Risks. I’m not going to ask you for the 40 minute spiel. I’m going to ask you for the 30 second spiel. Nate <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=2272274">37:52</a> Yeah, well, this is where I think shared decision making is so important. And I do. In our program, we do offer monoclonal therapy, lecanemab and tynanemab. And I talk to all of my patients that fit eligibility criteria. And most of my patients are coming into a specialty clinic with that in mind. And so every single person, pretty much with that diagnosis of MCI or mild stage dementia will hear me talk about monoclonal therapy. And usually for those that aren’t eligible, I’ll say, you’re not eligible because you have moderate stage dementia. You’re not eligible because you’re on a blood thinner. You’re not eligible for A, B and C. So they’ll hear that because I want them to know that. And then for those that are eligible, I’ll say, okay, so you’re potentially eligible. There’s a separate evaluation process for determining if you really could be on this therapy. But let’s talk about if you really want to go through with that and what that means to be on the therapy. So I actually start with logistics. Are you willing to go into an infusion center every other week? It may not be in your area. You might have to drive an hour or two to do that. Are you willing to get an MRI scan four or five times over the next 18 months? Do you have someone who can take you there? If you are on this medication and you have a stroke or a heart attack, you wouldn’t be able to get certain medications because you could have this bleed. And then let’s talk about the bleeding and the swelling that could go on in your brain. So I go over Aria, and I think that’s really important for people to hear. And I pretty much present it as. I start by saying, these are the risks of this. And then I’ll say, what it can do is pretty incredible. It removes this protein, this starting protein, and they all know what I do. So, I mean, all of my patients that see me know them mostly in research. It’s pretty incredible. It removes this protein, but what does that mean for you? It slows your decline. You are still declining. And I say it the same way. You are still declining, but it slows it. And they’ll usually say, well, isn’t that what your donepezil is doing for me? Well, and I’ll have to say, no, donepezole doesn’t actually slow it. It helps with your Symptoms, you’re still progressing. This is actually addressing your biology. It’s slowing it. What does that mean? Potentially three to six months, you know. Alex <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=2402494">40:02</a> Oh, three to six months of prolonging. Nate <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=2405718">40:05</a> Where you currently are versus not being on the therapy. That’s sort of the way they framed it. And I just think that’s a statistician that sort of framed it that way. And then I’ll go over it. If this is your life goal, what are you hoping for? Eric <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=2419848">40:19</a> Do you talk about uncertainty, like what happens after a year and a half, like that unknown that we have with these drugs? Nate <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=2427056">40:27</a> We don’t know the long term consequences of this. I will say to you, people will say, oh, that’s kind of interesting. And then I’ll say to them, you know, we don’t know the long term consequences of Ozempic and everybody wants to be on that drug. We don’t know the long term consequences of lots of drugs. And yet nobody seems to question that. And so everyone seems to question the long term consequences. Eric <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=2451310">40:51</a> I’m going to push back. There’s a little difference between this and a statin though, right? Nate <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=2455998">40:55</a> No, well, Ozempic, everybody wants to be on a zempic. And we do know about 20 years. Somebody recently pushed back and said, well, it’s been around for 20 years. Alex <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=2464894">41:04</a> It has been. Yeah. Nate <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=2465996">41:05</a> But you know, there’s a lot of drugs that, that come out that people don’t seem to mind. But for some reason with Alzheimer’s, maybe. Alex <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=2475644">41:15</a> It’S the brain bleeds, maybe it’s the. Nate <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=2478996">41:18</a> Brain bleeds, maybe it’s the couple deaths, you know, and. But in a great. Yes, people. But people have died in other clinical trials too. I mean, I do feel like everything is heightened in this field that I. Eric <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=2491236">41:31</a> Also worry that like part of this is the, the taint that educated me put over everything. Nate <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=2498210">41:38</a> It was the worst way that we could start. And well, when we wrote this, I feel like I’m just doing everything in my presentation. Alex <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=2505434">41:45</a> Oh, this is great. Nate <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=2506866">41:46</a> I mean, we had this great editorial in jama. This is my first editorial in jama, thanks to Eric. And we were very fair about this. This was a horrible way to start these therapies was with disapproval. Eric <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=2519706">41:59</a> That was our first paragraph, I think. Nate <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=2521154">42:01</a> Yeah. And it just. Eric <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=2522506">42:02</a> I want to ask, because I’m going to bring to your last article that I was just reading last night again, which I thought was fabulous. It was in New England Journal last year. Like you were in New England Journal three times, two videos last year. But you wrote an article about what primary care Needs. If you had this magic wand that you can change how primary care thinks about diagnosis, screening screens for Alzheimer’s disease, what does primary care need? And we’ll have a link to your New England journal article so listeners want to know more. They can read it. Nate <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=2553032">42:33</a> Yeah. Eric <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=2553520">42:33</a> What does primary care need around Alzheimer’s disease? Nate <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=2557552">42:37</a> Oh, gosh. Well, I think based on talking to my colleagues, I think primary care needs more time with their patients without the pressure to go through, like, they need more than 18 minutes. They need more people working with them. They need social workers like I have. They need more nurses. They need more of that support, support. And then I feel like they. I mean, they know so much about Alzheimer’s and cognitive impairment, but I think they want more training in the ability to counsel people on these conditions, particularly geriatricians. I think really want to be experts in this field. And so I think of it as the three T’s, time, training and team. And so I think the system needs to be supporting the clinics. And so it’s a structural resource change. Eric <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=2606642">43:26</a> And I just want to also acknowledge, because you said geriatricians and specialists in the field, I just want to acknowledge that individuals like you, Nate, Sharon Bragman, Heather Whitson, we have so many amazing people as geriatricians who are leading the way as specialists, not just as geriatricians, but as dementia specialists. And I think that is a sign that geriatrics has a really important role in the future of dementia care. Alex <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=2639168">43:59</a> Oh, this brings me to my last question. That’s a great shout out. And there’s been all this stuff. There’s an article in the New York Times about the decline and fall of geriatrics as a specialty. Last week, we had a podcast about this. We talked with Jerry Gerwitz and Mike Harper on is this a field where geriatrics can make a claim, establish expertise, and potentially lead to increased revenue through giving these antibodies in infusion centers? Nate <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=2669844">44:29</a> Oh, well, that’s a different angle that we’ve never really thought about. We are cost saving. We save healthcare. Eric <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=2677380">44:37</a> Geriatricians. Nate <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=2678132">44:38</a> Geriatricians do. By taking care of complex patients. But I’ve never heard of it. Alex <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=2682916">44:42</a> Yeah, because these are infusion centers. Right? You’re infusing. Nate <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=2686684">44:46</a> Yeah. Eric <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=2687052">44:47</a> Well, in five years, are we still going to be infusing these or just going to give subq shots? Everybody agree with? So things are. Things are changing. Well, I’m going to skip over that last question because we’re out of time. Alex, wait. Alex <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=2702012">45:02</a> A little bit more time. Eric <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=2703172">45:03</a> A little bit more time. You’re the one who has to go. Alex <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=2705076">45:05</a> Yeah, I have to go do rounds with patients. Ok, we’re done. Eric <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=2712292">45:12</a> We’re done. All right, we’re done. Geriatricians, it’s a little bit of a jungle. You have your shout out, dementia care. You are the experts. And with that, Alex, a little bit of the song… Alex <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=2734590">45:34</a> (singing) Alex <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=2808050">46:48</a> It’s like the GeriPal theme song. It’s like Jungle Land in here. [laughing] Nate <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=2811266">46:51</a> Thank you. Eric <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=2813336">46:53</a> Thank you, Nate. Thanks for joining us on this podcast and also a big shout out. If you guys haven’t listened to Nate’s podcast, Dementia Matters, go to it. One of my favorite podcasts out there. Thank you for doing that too, Nate. Nate <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=2825800">47:05</a> Thank you, guys. It’s been great. Eric <a href="https://grain.com/share/recording/8ef3b436-f30e-4fce-8c7d-5d89ab58cdcd/GalmdnftEQqqzZMnfony5q1y3a1ixO36Kax2MZOZ?referrer=docx&t=2827456">47:07</a> And thank you to all of our listeners for your continued support. </div> </div> </div></div><div class="vc_tta-panel" id="cme" data-vc-content=".vc_tta-panel-body"><div class="vc_tta-panel-heading"><h4 class="vc_tta-panel-title"><a href="#cme" data-vc-accordion data-vc-container=".vc_tta-container">CME</a></h4></div><div class="vc_tta-panel-body"> <div class="wpb_text_column wpb_content_element" > <div class="wpb_wrapper"> <h3>This episode is not CME eligible.</h3> </div> </div> </div></div></div></div></div></div></div></div></div></div> </div>The post <a href="https://geripal.org/how-to-make-an-alzheimers-diagnosis-in-primary-care-a-podcast-with-nathaniel-chin/">How to Make an Alzheimer’s Diagnosis in Primary Care: A Podcast with Nathaniel Chin</a> appeared first on <a href="https://geripal.org">A Geriatrics and Palliative Care Podcast for Every Healthcare Professional</a>. ]]></content:encoded> </item> <item> <title>Telehealth vs In-Person Palliative Care: A Podcast with Joseph Greer, Lynn Flint, Simone Rinaldi, and Vicki Jackson</title> <link>https://geripal.org/telehealth-vs-in-person-palliative-care-a-podcast-with-joseph-greer-lynn-flint-simone-rinaldi-and-vicki-jackson/</link> <dc:creator><![CDATA[Alex Smith]]></dc:creator> <pubDate>Thu, 30 Jan 2025 08:00:45 +0000</pubDate> <category><![CDATA[All Posts]]></category> <category><![CDATA[Palliative Care]]></category> <category><![CDATA[Podcasts]]></category> <guid isPermaLink="false">https://geripal.org/?p=7056</guid> <description><![CDATA[The post <a href="https://geripal.org/telehealth-vs-in-person-palliative-care-a-podcast-with-joseph-greer-lynn-flint-simone-rinaldi-and-vicki-jackson/">Telehealth vs In-Person Palliative Care: A Podcast with Joseph Greer, Lynn Flint, Simone Rinaldi, and Vicki Jackson</a> appeared first on <a href="https://geripal.org">A Geriatrics and Palliative Care Podcast for Every Healthcare Professional</a>. ]]></description> <content:encoded><![CDATA[<div class="wpb-content-wrapper"><div class="vc_row wpb_row vc_row-fluid wpex-relative no-bottom-margins"><div class="wpb_column vc_column_container vc_col-sm-12"><div class="vc_column-inner"><div class="wpb_wrapper"> <div class="wpb_raw_code wpb_raw_html wpb_content_element vc_custom_1738208298070" > <div class="wpb_wrapper"> <iframe title="Libsyn Player" style="border: none" src="//html5-player.libsyn.com/embed/episode/id/35077675/height/90/theme/custom/thumbnail/yes/direction/backward/render-playlist/no/custom-color/00548f/" height="90" width="100%" scrolling="no" allowfullscreen webkitallowfullscreen mozallowfullscreen oallowfullscreen msallowfullscreen></iframe> </div> </div> <div class="vc_tta-container" data-vc-action="collapse"><div class="vc_general vc_tta vc_tta-tabs vc_tta-color-sky vc_tta-style-flat vc_tta-shape-square vc_tta-spacing-1 vc_tta-o-no-fill vc_tta-tabs-position-top vc_tta-controls-align-left"><div class="vc_tta-tabs-container"><ul class="vc_tta-tabs-list"><li class="vc_tta-tab vc_active" data-vc-tab><a href="#summary" data-vc-tabs data-vc-container=".vc_tta">Summary</a></li><li class="vc_tta-tab" data-vc-tab><a href="#transcript" data-vc-tabs data-vc-container=".vc_tta">Transcript</a></li><li class="vc_tta-tab" data-vc-tab><a href="#cme" data-vc-tabs data-vc-container=".vc_tta">CME</a></li></ul></div><div class="vc_tta-panels-container"><div class="vc_tta-panels"><div class="vc_tta-panel vc_active" id="summary" data-vc-content=".vc_tta-panel-body"><div class="vc_tta-panel-heading"><h4 class="vc_tta-panel-title"><a href="#summary" data-vc-accordion data-vc-container=".vc_tta-container">Summary</a></h4></div><div class="vc_tta-panel-body"> <div class="wpb_text_column wpb_content_element" > <div class="wpb_wrapper"> It is a battle royale on this week’s GeriPal podcast. In one corner, weighing in at decades of experience, well known for heavy hits of bedside assessments, strong patient-family relationships, and a knockout punch of interdisciplinary collaboration, we have in-person palliative care consults. But watch out! Travel time can leave this champ vulnerable to fatigue and no-shows. In the other corner, we have the young upstart, able to reach patients across vast distances when delivering palliative care, all in the comfort of wearing pajamas, we have telehealth delivered palliative care. However, lack of physical presence may make this contender struggle to land the emotional support punch that is at the very heart of palliative care. Who will emerge victorious? Will in-person palliative care use its experience and bedside manner to overwhelm telehealth palliative care, or will telehealth deliver the knockout blow of efficiency and accessibility? Find out on this week’s podcast where we invite Joseph Greer, Simone Rinaldi, and Vicki Jackson to talk about their recent JAMA article on “<a href="https://jamanetwork.com/journals/jama/fullarticle/2823624">Telehealth vs In-Person Early Palliative Care for Patients With Advanced Lung Cancer – A Multisite Randomized Clinical Trial</a>.” Additionally, here are some of the resources we talked about during the podcast: <ul> <li style="font-weight: 400;" aria-level="1">Eduardo Bruera’s editorial that accompanies the JAMA paper titled “<a href="https://jamanetwork.com/journals/jama/fullarticle/2823627">Improving Palliative Care Access for Patients With Cancer</a>”</li> <li style="font-weight: 400;" aria-level="1"><a href="https://geripal.org/stepped-palliative-care-a-podcast-with-jennifer-temel-chris-jones-and-pallavi-kumar/">Our podcast on Stepped Palliative Care with Jennifer Temel, Chris Jones, and Pallavi Kumar</a></li> <li style="font-weight: 400;" aria-level="1">The book “<a href="https://global.oup.com/academic/product/whats-in-the-syringe-9780197525173?cc=us&lang=en&">What’s in the Syringe? Principles of Early Integrated Palliative Care</a>” by Juliet Jacobsen, Vicki Jackson, Joseph Greer, and Jennifer Temel</li> </ul> Lastly, don’t forget about attending some of the sessions Vicki mentioned at the end of the podcast during the HPNA/AAHPM annual meeting in Denver, as well as the <a href="https://geripal.org/hpmparty-is-back-in-denver-for-the-2025-aahpm-hpna-annual-assembly/">GeriPal #HPMParty Pub Crawl!</a>   ** This podcast is not CME eligible. To learn more about CME for other GeriPal episodes, <a href="https://geripal.org/cme/">click here</a>.   <hr />     </div> </div> </div></div><div class="vc_tta-panel" id="transcript" data-vc-content=".vc_tta-panel-body"><div class="vc_tta-panel-heading"><h4 class="vc_tta-panel-title"><a href="#transcript" data-vc-accordion data-vc-container=".vc_tta-container">Transcript</a></h4></div><div class="vc_tta-panel-body"> <div class="wpb_text_column wpb_content_element" > <div class="wpb_wrapper"> Eric <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=720">00:00</a> Welcome to the GeriPal Podcast. This is Eric Widera. Alex <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=45108">00:45</a> This is Alex Smith. Eric <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=46036">00:46</a> And Alex, today is a battle royale on the GeriPal Podcast. Yes. In one corner, weighing in with decades of experience, known for heavy hits of bedside assessments, strong patient family relationships, and a knockout punch of interprofessional collaboration, we have in-person palliative care. Alex <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=66552">01:06</a> Yeah, go in person. Okay. Eric <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=68216">01:08</a> On the other, we have the young upstart telehealth delivered palliative care. It could reach far distances. Alex. Long reach, long reach, all in the comfort of wearing its pajamas, which is pretty impressive. We have telehealth delivered palliative care. Who is going to emerge victorious? Alex, who is gonna be answering that question? Alex <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=92174">01:32</a> For us, answering that question today, we have Joe Greer, who’s a psychologist and associate professor of psychology at MGH and Harvard Medical School. Joe, welcome to the GeriPal Podcast. Joe <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=102518">01:42</a> Thanks so much for having me. Alex <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=103870">01:43</a> And we have Simone Rinaldi, who’s a palliative care nurse practitioner and director of nursing for the MGH Division of Palliative Care and Geriatric medicine. Simone, welcome to GeriPal. Simone <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=114242">01:54</a> I am so glad to be here. Alex <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=116154">01:56</a> And returning guest, Vicki Jackson, who’s a palliative care doc, chief of the Division of Palliative Care and Geriatric Medicine at MGH, professor at Harvard Medical School, and co director of the Harvard Medical School center for Palliative Care. Vicki, welcome back to GeriPal. Vicki <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=130082">02:10</a> Thank you. It’s a pleasure to be here. Alex <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=131930">02:11</a> And in the room with us today, we have Lynn Flint, who’s an outpatient palliative care doc, frequent guest host at GeriPal, and professor at UCSF in the Division of Geriatrics. Lynn, welcome back. Lynn <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=140490">02:20</a> Thank you very much. Eric <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=141970">02:21</a> So, Joe, Simone, and Vicki were all authors of a great telehealth versus in-person palliative care study published in JAMA New England journal, that was just published not too long ago. Before we get into the results of those studies and what they did, somebody has a song request for Alex. Joe <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=163010">02:43</a> Indeed. Yes. We thought Hello by Adele would be thematic for our conversation today. Eric <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=168090">02:48</a> Well, is it just because it sounds like a telephone call? Joe <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=174600">02:54</a> There’s layers of meaning in those lyrics. If you really, you can dig deep. Eric <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=178576">02:58</a> All right, let’s hear it. Alex. Alex <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=185880">03:05</a> (singing) Alex <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=284670">04:44</a> That was fun. Lynn <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=286830">04:46</a> That was intense. Alex <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=288102">04:48</a> Well, I try to get some other people to sing, but some people refuse to sing along. How can you not sing along with Adele? Have you seen the Saturday Night Live where the family’s arguing and one is, like, very Republican, the other is, it’s Thanksgiving dinner, but then somebody plays Adele and everybody hello. Eric <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=307770">05:07</a> One day Zoom will get it so we can all sing together. Alex <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=311018">05:11</a> That’s right. Eric <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=311978">05:11</a> Without a lag. That’s what I’m waiting for, Alex. You get that going and then maybe, probably, at least it won’t sing. Okay, let’s talk about who is victorious in person. Consultations versus telehealth. So I mock a little bit, but you published a great JAMA paper on this big study. Would love to turn. I’ll turn to you, Joe, to start off. First author, why did you and your colleagues decide to do this study? Joe <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=346410">05:46</a> All right, well, this was back in 2017, when we were originally conceiving of the study, so, well, before the pandemic and before pretty much most of us were doing anything related to Zoom or telehealth via video visits. Eric <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=361390">06:01</a> And was Zoom a thing back then? Joe <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=364358">06:04</a> I don’t know. Eric <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=367254">06:07</a> Skype. Alex <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=369030">06:09</a> I remember Skype. Joe <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=370270">06:10</a> Yeah, yeah. No, it was like the Flintstones version of video visits. It was pretty Antiquated. Over the last couple decades, Vicki and other leaders in palliative care and Dr. Jennifer Temel, our thoracic oncologist, colleague and co PI on this study, we’ve been testing the early integration of palliative care in clinic through several studies. Our group was doing this, several other groups, actually a number of groups across the world, were running these types of trials and all demonstrating really decent efficacy for improving quality of life for patients with advanced cancer and in particular for patients with advanced lung cancer. And so we were celebrating the great model that this was and how it was improving patient and caregiver experience and hoping that that would translate into practice. Change got adopted by ASCO’s Quality Initiatives and guidelines and others like the National Comprehensive Cancer Network and other societies had recommended this care model as standard of care for this population. But in reality, given workforce shortages and just the challenges and the resources necessary to be able to provide early integrated palliative care from the time of diagnosis of advanced cancer, the model simply is not implementable, at least not in our current state with our available infrastructure and resources. We were moving from this thought of we know it works, but how do we get it out there in a way that people can actually do it? The scalability question is really what was driving us to think creatively about improving access and efficiency and care in delivering this model of care. And so that’s how we landed on telehealth as one potential option. Not the only option, but one option to really improve that scalability and improve that access. Yeah, so we were just very pleased and excited that ultimately some funding organization agreed with us and gave us about $10 million 20 to run this study across different sites, actually 22 sites across the nation. And here we are seven years later with a JAMA publication. Eric <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=500780">08:20</a> A lot has changed in those 20 years. But before we actually talk about what you did, Vicki, I got a question for you. I think we asked you this question the last time too. How important is it that we dissect all of these different ways we can deliver palliative care? Either different populations, telehealth versus in person physician NP versus physician social worker. How important is it that we really drill down into how we’re delivering that palliative care syringe? Vicki <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=530658">08:50</a> Yeah, I think it’s a great question. I think one thing that was humbling in a study, the follow up study we did to the New England Journal study, which was expanding a monthly in person model into a GI population, is we actually, we saw differences in how that intervention impacted the Patient’s experience and their quality of life. Right. We replicated the findings in the lung cancer population and it wasn’t until 24 weeks with the GI cancer population. So I think what I love about our field is we are really early on in understanding what is it that really makes a big difference, how do we structure it? What do different patient populations need? Like if you think about it, that was still a cancer population. But how do we think about the right outcomes and the right intervention frequency and structure in heart failure, in advanced liver disease, all of these things? I think it’s really important that we understand and we can maybe at some point talk about. One of the things that is most interesting to me is what we have really understood. It is a thread in all of these, is really mediating what we’re seeing in all these patient reported outcomes, which is coping. I think we have a whole host of different models. We could think about different ways that different clinicians who might be able to provide different parts of the model and allow this work that we’re doing that we know now is really effective and helps patients to be more scalable. Eric <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=625880">10:25</a> Great. So maybe we can jump in. What did you actually test in this study? Joe <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=632610">10:32</a> I guess I can take that. Essentially we’re testing the early integrated palliative care model, which is monthly visits with a specialty trained palliative care physician or advanced practice provider for patients who are diagnosed with advanced non small cell lung cancer. So they had to be within three months of diagnosis and they were going to be randomly assigned to either the traditional model that we’ve been testing. So delivering those month visits in clinic, often in tandem with their other oncology appointments. And I give a huge shout out to all the clinicians who are on this study, the 100 plus clinicians who like bend over backwards to work with their schedules and see those patients in clinic. Eric <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=673710">11:13</a> And you tried to see them in the same day that they were seeing oncology. Joe <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=677494">11:17</a> To the extent possible, they would see them, they would see them in the infusion suite, they would see them in the oncology, you know, center, like wherever the patient was, the clinicians were going there. And that’s why this study was successful, because of their tremendous flexibility and generosity. So comparing that to the same dose in frequency and focus of conversations, in terms of what is key and critical to the early palliative care intervention, in terms of topics, all of that all similar, but now delivered over video visits, those monthly video visits versus in person care. So no differences between the modalities. Otherwise. The only thing we were Varying was just whether it was in clinic or delivered over video. And the sample size was roughly 1,250 patients. So broad scale, 22 centers across the nation. So a pretty definitive and robust study to answer that question. Eric <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=742060">12:22</a> So can I ask you a wonky methods question? Because it was big sample size, much bigger. We just had Jennifer Tamel on a couple months ago and others to talk about stepped palliative care. And she talked a little bit about the difference between non inferiority efficacy and superiority trials. And it sounded like big difference was the power and the sample size calculation. Why did you pick it? Was this an equivalent study? Equivalence. That’s the word I was looking for. Why did you pick an equivalence study instead of a non inferiority study versus superiority? Joe <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=778348">12:58</a> Right. So I would say in terms of the question around superiority, we didn’t have any particular data where we thought this particular modality, either video or in person care would be superior. Alex <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=792956">13:12</a> Right. Joe <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=793220">13:13</a> We had. We didn’t think that there was something unique to the modality delivery in which palliative care was providing that care. And having these types of conversations that are so meaningful, especially from the onset of an advanced diagnosis like that, that we thought theoretically or empirically one would be better than the other. Really this was just an open question for us. Like when we pit these two modalities against each other, are they able to perform at a decent similar level? Was the question the stats question and the methods question you’re asking is like really, should this been a non inferiority versus an equivalent study? And in retrospect it probably would have made sense to have this been a non inferiority study. Meaning that video visits were just as good as in person visits is kind of really the question. Whereas an equivalence is saying are these two modalities really within the same band of improvement, not one being less or one being higher than the other. And you could make the argument like if one beats out the other one, you know, especially if video visits did better than in person visits. Again, we didn’t have a hypothesis that that would be the case. You know, that would obviously be picked up from a non inferiority study just as good as or even better. But we were really kind of hemming ourselves in saying that they had to be within a certain range to be equivalent. And that’s not really the question actually. We’re really just more curious if they were comparable. Eric <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=883510">14:43</a> Yeah, but that did mean you had a big sample size. Joe <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=887558">14:47</a> 1200 patients have a huge sample size. Vicki <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=890830">14:50</a> That was no joke, just to be clear. Joe <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=893102">14:53</a> Yeah. Eric <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=893878">14:53</a> What was no joke? Lynn <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=894822">14:54</a> Getting that many people. Vicki <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=896510">14:56</a> Yeah. And having 22 sites that we had to train, keep motivated, understand a very complex study. I mean, Simone, you can weigh in here, but those meetings to keep. Every site had different things that were struggles. Simone <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=915158">15:15</a> And I think that that was the power of having. We had monthly meetings with all the centers across the country to be able to talk about, you know, where things were going well and where the challenges were. And part of the power of those meetings, I think, was learning from each other about strategies for where things weren’t going well. That helped us as we all got stuck, because we all got stuck in being able to move forward with recruitment and kind of operational and implementational issues. Eric <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=942410">15:42</a> How did you make sure. Did you make sure everybody was delivering the same type of palliative care intervention, or did everybody just do what they do in their palliative care clinics and just saw what happened? Lynn <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=955186">15:55</a> Well, it’s a good. Vicki <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=956074">15:56</a> It’s a good question. So part of what we did was have all the sites trained up front. And I would say we weren’t doing training on symptom management, for example. We assumed everyone was pretty clear and. And well skilled. I would say that many sites, seeing patients so upstream that they didn’t have symptoms, we. We sort of had this language that we talked about with the sites of, like, what do you do during the. Well times. Right. Because there’s actually work to be done there. But many of the clinicians would say, I don’t know, how am I being helpful here? They’re not dying. And I’m like, that’s the point. Therein is the point. Right. But so then it was really helping them think through a framing for the work. And part of the way we framed it was that because we’ve known from our previous studies that how patients cope when they see palliative care early is really driving a lot of these outcomes. We really spent a lot of time helping the clinicians see that a patient’s illness, understanding and prognostic awareness was just as important as their pain scale, their pain score. Right. And that they actually had to see that as a clinical domain that they addressed in each visit and subsequently over time. And to see that as a, you know, we often say to our trainees, you know, that when we’re talking about these things, getting to know a patient, helping them understand their illness, it might seem like we’re just being really nice. And in fact, I think hopefully most days I am nice, but that’s not why I’m right. This is actually a skill and helping the Clinicians think about it as a skill was really important. And so we reinforced that over time in yearly trainings, in upfront trainings. That got reinforced in these monthly meetings where, you know, what was great about these monthly meetings with each of these sites is they would bring not only their concerns about recruitment or something related to the study, but also clinical cases and say, what do I do with this? The patient refuses to ever talk about the fact that this illness could take their life. What do we do with that? It actually allowed for really rich discussion of if you get to care for someone over the course of one or two years, how do we titrate our intervention to really help them live Well. Lynn <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=1105212">18:25</a> I have a quick question. I think if I’m correct, you did a in person visit for everybody. Vicki <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=1111608">18:31</a> We did. Lynn <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=1112800">18:32</a> Can we talk a little bit about that? Eric <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=1114896">18:34</a> Like why did you do that? Lynn <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=1116768">18:36</a> Yeah. Eric <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=1117448">18:37</a> Why did the telehealth get an in person initial visit? Was it for opioids so you can prescribe them? Joe <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=1124880">18:44</a> No, no, no. I think this was initially because we, again, this is before the pandemic and people had a lot of hesitation about video visits and, and could you establish a relationship over video from. And so when we were conceiving of the study, we had various stakeholders and constituents that were serving in an advisory capacity for us and both our patient and caregiver collaborators and our clinician collaborators all unison agreement to say you need an in person visit to establish rapport before transitioning to video visits. And I’m not sure we would say that today, but at the time that was super meaningful and, and so we modified the protocol based on those recommendations. Eric <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=1169850">19:29</a> Simone, what do you think? Do we need that today? If you were to do that study again, you know, let’s say imagine the study didn’t happen. You’re doing the study now. Do you feel like you would need to have that in person first visit in the television? Simone <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=1181698">19:41</a> I think that that’s part of the wonderful outcome of this study. To be able to, I think, answer the question is no, I don’t think that we need it now. I think we were very concerned about it at the start of the study and everybody was on the same page that we would have an in person visit because we were so concerned about the ability to establish rapport. Because in going back to like Vicki, what Vicki was saying, across all of our studies, we’ve been able to see that threat of coping. I think we’ve also been able to see the thread of rapport building and that the essential piece of rapport building and relationship as something that allows for everything that comes after. And so at the start of the study we were so concerned about can we really establish the same kinds of rapport and relationship with patients using this modality. And I think we. We have an answer now. Eric <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=1231852">20:31</a> So wait, before we get into the answer I got another question. Is a. I want to just highlight that I loved the supplement. Actually unlike page 23, it actually breaks down based on initial visit follow up visits. And at the end like end of life care was not talked about at every starting of every palliative care clinic is that may be discussed but the heart of the initial visit it sounded like was relationship and rapport building. And then there was a lot of stuff on coping and symptom management. I think for me it just highlights a lot of kind of what we do. But I also thought this was mainly delivered right by. Was this the same as the stepped wise? It was physicians and APNs. Joe <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=1276726">21:16</a> Yes, yes. Eric <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=1278508">21:18</a> Not the whole interprofessional. But what about the social workers and the chaplains? Vicki <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=1283540">21:23</a> It’s a great question. It really depended on the site. So some sites had, you know, so like our site at mgh we have cancer center social workers who are very engaged, find themselves very well versed in palliative care and really want to be the primary people supporting patients in the thoracic clinic, for example. So those social workers were involved. We would make referrals to psycho oncology. I would make referrals to Joe as well as part of the team. But there were some sites where social work would be really in a more embedded a palliative care social worker more embedded in the model. But it was not uniform across all sites. Joe <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=1328742">22:08</a> So just to piggyback on that, the protocol stipulated that the monthly visits would be administered by either, you know, board certified specialty training palliative care physician or an advanced practice provider. But that did not limit those clinicians from making referrals, as Vicky was just saying. And to pick up on your prior question about how did we know what they were doing. I mean another measure of fidelity is that at the end of every encounter, whether in person or over video, the clinician completed a standardized form indicating this is where you were talking about the supplement. I love that you read the supplement. We put so much work. Eric <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=1367510">22:47</a> I found the Easter eggs in there too. Joe <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=1369894">22:49</a> There are. There’s so many great nuggets there. So thank you. Especially the hours I slaved over that supplement. But when you look at those actual graphs of the topics being discussed and it’s actually not Just the initial visits. Over the course of all the visits that we had, 5,000 plus clinician forms that were filled out. I mean, just an immense amount of work. I think two key themes come through there, which is one, you know, these conversations are remarkably similar regardless the frequency and the topics were remarkably similar regardless of the modality. And also on those forms, we do know, I mean, that part wasn’t in the supplement, unfortunately. But we do have the information about referrals to other ancillary providers as part of that multidisciplinary team. So it matters. It’s a piece of the intervention. It’s just what was required per protocol versus kind of like what is patient specific, site specific, as Vicki was mentioning. Eric <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=1427390">23:47</a> Yeah, Lynne, I’ve talked to you about. This is like there is a difference, right, between assessing someone, yourself as a physician for social work needs and then making a PRN referral versus having a social worker integrated near your clinic where they’re seeing the patients doing their assessments, managing coping. Do you feel like that that’s true for sure, Yeah. Lynn <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=1447392">24:07</a> I think we try to do visits together with a social worker in our first assessment, even if it’s on video. And I find that when that happens, the social worker is usually able to do more integrated follow up over time, even if we don’t go on to see people together over time. I think what’s coming home to me is how every single place has its own sort of model, its own team. And that kind of speaks to the studies to look at. How do we disseminate this scarce resource? Because nobody has a perfect full team to implement, I think, any of these things fully. So when I think I just. Oh, go ahead, Vicki, it’s okay. Vicki <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=1488804">24:48</a> No, you’re right. Lynn <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=1489788">24:49</a> I’m changing the subject. You go, oh. Vicki <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=1491828">24:51</a> What I was saying, the other thing that I love is that our previous studies were R1 site, right? And this is 22 sites. So this is not an MGH thing. This is a. This is a palliative care is effective in improving quality of life for patients. Right. Like in, in the outpatient setting, early outpatient setting. And that’s what I loved about it. Because even though the models are different and maybe there’s an embedded social worker or maybe the social worker sees patients at different times and the structure isn’t exactly the same, what is essentially in our common syringe works. Eric <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=1531600">25:31</a> I’m going to play devil’s advocate. I’m going to pull back to what I remember from the stepped palliative care trial. And Alex asked the question there’s no usual care group here. There’s no. That third group. That’s the. No palliative care or palliative care. The usual palliative care would be just as needed. Palliative care, prn. Kind of like prn, Social worker. Prn. Palliative care. Should there have been a third PRN group or third control or usual care group? Vicki <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=1562454">26:02</a> Do you want to take one more? Eric <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=1563334">26:03</a> Alex, weren’t you gonna. Weren’t you gonna debate this with Vicki in Montreal? Alex <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=1567150">26:07</a> Yeah, yeah, but I was waiting for the results first so that we could debate. Lynn <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=1570542">26:10</a> Wait, what would. Alex <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=1571830">26:11</a> I have to talk about the results before? Eric <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=1573638">26:13</a> What would. Vicki <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=1573926">26:13</a> Usual care. Speaker 8 <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=1574838">26:14</a> Okay. Eric <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=1575310">26:15</a> Usual care would be usual care. You get a consult if you get a consult. But mostly you may not get consults on a lot of these people. Alex <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=1584630">26:24</a> I guess I’ll weigh in now since you’ve called me out on this. If you look at the population who was studied in this study and the popula. Well, first, let me just reflect on what you’ve been saying. This was a tremendous undertaking. Kudos to you and kudos to all these sites. And it sounds like they got so much out of this, too. And that part of the intervention that maybe goes unrecognized in the article, but is really clear here, is the way in which this, as you said before we started podcasting, the way in which it built community and the way in which you helped each other and helped clinicians and really like. So that is a really interesting model for how to improve and do palliative care nationally as part of a study or maybe outside of a study. The point I think we’re getting to here is that palliative care has changed a lot since that original study in New England Journal that you’re all part of that. If you look back at that population then and the treatments they received, it was almost all cytotoxic, systemic chemotherapy and radiation. And you look now at that Table 1, Characteristics of Subjects, and it’s like a third immunotherapy, a third targeted therapy. It’s like, you know, the treatments have changed. Like, you put people on these new, much better treatments, much less toxic treatments in most cases, with some exceptions, and the cancer shrinks, they start to feel a lot better. I was doing a visiting professor thing recently in Cleveland, and they were saying, now we’re not called the palliative care team. We’re called, like, the survivorship team. Whoa. That’s pretty different. What’s happening, you know, what’s happening in outpatient palliative care? This is a new day. Can we really say have to have the goalposts moved? You know, are we the reason that the quality of life is getting better or is it something else? I don’t know. When I say we, I’m talking about palliative care because I firmly have drunk the Kool Aid. Joe <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=1697368">28:17</a> Clearly I have two thoughts about that and I’m not going to. I absolutely see your point. And I, and I have had these thoughts myself. I mean, one thing that we were appreciative of seeing is that in both arms, whether the video or the in person arm, the improvement in quality of life did mirror what we saw in our early palliative care studies prior. And so it was a clinically meaningful improvement on the functional assessment of cancer therapy lung. That’s our primary outcome measure. It’s the same measure we used in the New England journal article. But to your other question, which is valid, cancer therapies have been changing dramatically since that original paper came out. And so how do we think about that attribution? In preparation for the plenary that we gave on this study at the annual meeting for ASCO last year at the American Society of Clinical Oncology, I kind of, as a psychologist, did a bit of a deep dive into therapeutic trials for lung cancer just to see what they were showing with respect to quality of life improvements. Yes. With some of the immunotherapy trials, what, what we are seeing is not a dramatic increase in quality of life per se based on those trials, but buffering a decrease in quality of life relative to the control groups, whereas we are seeing an actual increase in quality of life in this current trial. So I don’t want to overstate that, but in terms of some of the data I was looking at from those different novel therapeutic trials, that’s what I was sort of gleaning is that it’s more of a buffering effect versus a dramatic improvement in quality of life. So I hear you. You could probably make an argument maybe we still need an usual care in these future studies that this next generation of studies we’re doing. It will be a little challenging and hard pressed to get it through an IRB when the standard of care recommendation is early palliative care. So you’d have to make a solid argument to get it through a review board. Eric <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=1815000">30:15</a> Great. Well, I think we’ve been dancing around the results. What did you find as far as this paper? Your, your primary outcome was quality of life, is that right? Joe <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=1828040">30:28</a> Yes. At 24 weeks. Eric <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=1829912">30:29</a> At 24 weeks, was there a difference? Were they equivalent? Joe <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=1835024">30:35</a> They confirmed that they were equivalent. Yes, we did. There was an equivalent effect on quality of life at 24 weeks. And we were able to say, you know, pretty definitively. We had to run a bunch of different sensitivity analyses because the rate of attrition was a bit higher than we anticipated. But yes, and of course because of the pandemic, we did have some video visits in the in person arm. So we had to run some sensitivity analyses to control for that. But despite all of those, the data were pretty, pretty confirmatory and you know, whether it was either equivalence in all these sensitivities or at least non inferiority. So I think we can walk away saying we feel pretty good that these two modalities match up. Alex <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=1879566">31:19</a> And can you say more about the magnitude of the quality of life improvement and how it was measured? Joe <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=1885718">31:25</a> Yeah. So on the functional assessment, cancer therapy, a minimal clinically meaningful difference is roughly six points. And so for both the in person group and the video group, the improvement from baseline to 24 weeks was in excess of six points. Eric <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=1904260">31:44</a> And in a bunch of secondary outcomes, caregiver quality of life, patient coping, patient caregiver, satisfaction with care, mood symptoms, prognostic perceptions. No difference between the two groups, right? Joe <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=1915524">31:55</a> No differences. Lynn <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=1916900">31:56</a> One little detail that stood out to me, which really rang true to real life, was that caregivers were actually less present during visits in the video visits. Eric <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=1926592">32:06</a> So you see that? Lynn <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=1927512">32:07</a> Oh, yeah, for sure. In fact, I have to often say, like, hey, who else is there with you today? You know, and invite the caregiver to come in, to come sit down. Eric <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=1937800">32:17</a> Why do you think that is? Alex <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=1939480">32:19</a> Because they’re not driving or. Lynn <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=1941736">32:21</a> I think it has to do a little bit with. For some of my patients, I think it has to do with the respond that the video visit provides, the transportation. They’re not driving them. If they physically come here, it’s sort of just the natural course of things that they’ll walk into the room with the patient. Whereas many times I see caregivers kind of running around doing the dishes and stuff in the background. Simone <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=1963734">32:43</a> I think another thing that I would add to that is that it does give the opportunity, I think, for patients to be able to have meetings with their palliative care clinician privately in a way that is often not possible when they are in person. It’s hard to find privacy, no matter. But also just to have that private space to be with your clinician. And I think that really matters for folks to be able to talk about their experience sometimes without having to worry about the impact on the family member that’s standing next to them. So I think that that is one of the benefits. It was kind of unexpected results, but I think that that may be part. Lynn <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=2001290">33:21</a> Of why also the portability of video visits. So, like just yesterday I saw somebody while they were in their hotel room taking a trip, which is like what we want people to be able to do. So. Alex <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=2013962">33:33</a> So I’m hearing that. On the one hand, can I. Can I just say we’re probably all relieved to find that there was equivalence, right? I see people shaking their head, yes, we’re relieved. What would we do had it been different? On the other hand, we are pointing out that there are, we do expect there to be some differences, like because the caregiver is not there as often and, you know, maybe that allows for more conversations that wouldn’t happen otherwise about things like sexual intimacy. We did a podcast about that with a region, colleagues, things like trauma, experiencing trauma or other, you know, our goals don’t align. I want to tell you now, while I have you here, doc, though they’re my caregiver, please listen to what I’m saying now. So we would expect there to be some differences, although they weren’t necessarily picked up in this study or were they? Joe <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=2066745">34:26</a> I mean, what I find fascinating about this is the fact that caregivers attended fewer visits in the video arm versus the in person arm. A good or bad thing or both? Because on one level, you could make the argument that with the caregiver not being present, perhaps there’s a breakdown in communication. People aren’t on the same page about the goals of treatment or how they’re supporting each other in moving through the treatments, or just even caregiver understanding or awareness of everything that’s going on. You can make the flip side argument, which is that perhaps it gives the patient and caregiver just more autonomy to decide when to have a joint visit. And that autonomy allows for different types of conversations and frankly, maybe just a more reprieve and less burden on the caregiver, given all the transportation issues, et cetera. I was reassured by the fact that we did also measure the outcomes from the caregiver perspective. So we did measure their quality of life and we did measure their coping and their distress. And thankfully, despite the fact that their participation was lower in the video visit group, their outcomes were not different across the two groups. So that was reassuring. Not only were their outcomes not different with respect to their own quality of life and distress, but also their perceptions of the patient’s curability of their cancer or the goal of treatment where you would think that communication would be a major issue. There were no differences between groups there either in terms of their knowledge and understanding. Then lastly, satisfaction with care for the caregivers and for the patients. No differences. Despite the difference in attendance. I was reassured by those. No differences. Vicki <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=2166680">36:06</a> I do think it’s also interesting what as clinicians we’ve learned that we ended up doing during the study. And the sites would say this for different patient populations. For example, I realized in the video arm, I would need to be intentional when I wanted the spouse to come in. Or for you guys, it’s always probably the child from Boston. For us, it’s always the child from California. Right. Like, we could say, hey, can you have your daughter from California join? Which allowed something different, but we would actually plan it ahead versus it being whenever. I think the other piece we found was there were times when, you know, either oncology or palliative care could say, I think we need an in person visit. And there would be times that that would happen when I couldn’t get my arms around what was happening because there’d be a caregiver who I’d be like, there’s something. I can’t read it quite right. And we would do an in person visit to get our arms around what that was, or if I was worried that there were issues with technology or other kinds of things. Eric <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=2236346">37:16</a> So is that an issue, though, with fidelity? Like, how many of the video visit folks were actually being seen in person or the opposite? Because this was happening in Covid. Right. Vicki <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=2246282">37:26</a> Great question. Eric <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=2247018">37:27</a> And then all of a sudden, like, we started doing all video visits. Lynn, what were you doing in Covid 2020? Lynn <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=2255544">37:35</a> I wasn’t doing outpatient in 2020. Eric <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=2257912">37:37</a> Oh, yeah, I forgot about that. Lynn <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=2259768">37:39</a> I was in the hospital. Eric <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=2262920">37:42</a> We did a massive switch to telemedicine. What happened during this study? Lynn <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=2267528">37:47</a> There’s also the experience of, oh, I couldn’t get there today because there’s a snowstorm. Let’s switch it to video. Joe <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=2273810">37:53</a> Yeah, we freaked out. Like, we really freaked out a lot. For many months. Vicki <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=2280610">38:00</a> Years. It felt like years, honestly, that we freaked out. Yeah. Joe <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=2283818">38:03</a> No, if you could. If you could design a study for which this type of pandemic would be the worst. I mean, the pandemic’s the worst, don’t get me wrong. But the worst threat to the validity of your study. Yeah, this was. This would be that study. Simone <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=2297922">38:17</a> So precision. Eric <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=2299570">38:19</a> But how many people switched from one group to the other? Or I guess they didn’t switch groups, but they used the other’s modality. Joe <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=2306996">38:26</a> Yeah, we, we, we halted recruitment during the first few months of the pandemic so that people weren’t being enrolled and randomly assigned to the in person group knowing that they were going to get video visits because there, there was no choice, people had to get video visits. So among the enrolled people who were in the in person group, we were able to keep their video visits down to less than 6%.6 percentage. And so that level of contamination was not a threat. We were able to do enough per protocol and sensitivity analysis to show that that level of contamination did not threaten the validity of the study and was still confirmatory for equivalence. Eric <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=2345740">39:05</a> Okay, I got another question. Kind of thinking forward now. So they’re equivalent as far as outcomes, but video visit, you don’t have to beg and borrow and steal rooms. You know, those rooms could be managed by oncology or somebody else who needs to see people in person. You can stay in your pajamas at home. You don’t have to drive in, you know, the commute. Should we just give up on in person palliative care consultations in the outpatient setting? Because they are equivalent from an outcomes perspective, but they’re not equivalent from just the sheer amount of time efficiency perspective. Simone, I’m going to ask you first your thoughts. Simone <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=2391520">39:51</a> I was hoping that you were going to ask Joe, and then I put my two cents in later. But I think two things just off the top I can’t imagine, although I have no evidence to base this on, that the models that we create aren’t going to include both. And that that is also going to be some of this work that we have to do in the future is to try to figure that out, how to kind of figure out not only that by population, but by cadence. But I think in terms of thinking about how to be implementing and delivering palliative care in this changing landscape, particularly in the changing landscape of cancer care, and thinking about the different populations in terms of low or greater symptom burden, in terms of thinking about how we’re using our resources, like pulling all this together, I think ultimately we will be needing to figure out models that are individualized and that kind of pull these things together. Like maybe we have kind of high touch palliative care in certain situations. And as part of that high touch, we’re using both in person and telemedicine visits in folks perhaps that are not needing quite the kind of heavy touch because perhaps they’re in the beginning of their disease and they are going to need kind of a lighter touch for a period. Of time. Again, some type of combination for those. Eric <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=2474892">41:14</a> I love that because I think that’s also what Eduardo Barrera said in the editorial that’s attached to it. And he did this wonderful author in the room for JAMA about the editorial. But it really does need some individualizing. You feel like that’s the case? Joe? Joe <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=2490580">41:30</a> Yeah. Eric <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=2491204">41:31</a> You know, we should learn from this. Joe <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=2493660">41:33</a> I think the good news is we’re going to continue to learn from this. So you know, we talked about the community that we established over the last seven years with this study. Now we’re kind of moving into additional analyses to answer some of these important questions. So one of the palliative care investigator clinicians from Dana Farber, Isaac Chua, he is really interested in doing some interviews with the clinicians to figure out exactly what Simone was just saying. When did the clinicians feel like in the video visit group that they just had to see the person in clinic? Like what were the indicators for that and are there some, is there guidance that we can put out there given just the sheer volume of data and sheer number of clinicians we have in this study that we can contribute to offer those who are now training in the video visit world. And so I think there’s so much more to come in answering this question, but I don’t think there’s ever going to be a scenario where it’s exclusively video visits that just won’t exist. Simone <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=2552678">42:32</a> I think also that it would be helpful to be looking at to some of the care that gets delivered that is indirect and outside of the clinic visit that helps to stitch these clinic visits together. I think that that is an area and I think that that is often app and or nursing run care and I think that that is an area to think about in terms of how does that contribute to what we’re seeing here and how does that contribute to what is in that palliative care syringe? Vicki <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=2582720">43:02</a> It’s not even what happens only with the patients. It’s when the oncologists are popping in the office where the NPs are and saying hey can I talk to you about Mr. Jones and Da da da da da da. And it changes the way they think about how they should be thinking about oncology care for that patient. Lynn <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=2601670">43:21</a> I was just going to bring us back to our battle in the beginning. Alex <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=2604878">43:24</a> Oh, the boxing match. Eric <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=2605974">43:25</a> The boxing match. Alex <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=2607142">43:27</a> Two corners going in the beginning. Lynn <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=2609278">43:29</a> When we talked in the very beginning about the in person visit that the stakeholders all said we got to do that first. I actually wonder, we said clinicians nowadays they probably would be fine with doing away with that. But I really wonder what the patient and family perspective is now, because I think that it’s changed, but I’m not sure. And it may have changed in a different way. So I’m going to go on the side of we need in person presence. I actually do my video visits here from the office, so I don’t wear pajamas. And I think we need an in person presence in the medical center, in the cancer center. Even if we’re doing video visits, we need to sort of be here to be at the table. So I’m going to go on the side of in person, huh? Eric <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=2654836">44:14</a> Okay. In person. Even you’re doing video? Lynn <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=2658060">44:18</a> Yeah, I’m going to say hybrid. I’ll do what, you know, what’s best for the patient in terms of how I see the patient. But I think having a presence is super important. Eric <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=2665196">44:25</a> Vicki, you’re in a huge leadership position. What do you think about that? Vicki <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=2669660">44:29</a> I. So one thing I think that we have not done as much, we have paid much, as much attention to as we could have, and maybe we will in the future in our studies is actually, this is really clearly in my mind, a triadic relationship. It’s the oncologist and the patient, the palliative care doctor and the nurse practitioner and the patient. And it’s the palliative care clinician and the oncology team relationship. And that relationship, I think, is key in what happens with the patient. And I think your point, Lynn, is really a good one, is that if we’re not. If we’re only at home in our jammies, we’re not there when they knock on the door to say, hey, can I talk to you about this? And I don’t. I’m on the fence about whether I should give this third line of chemotherapy or not. And that happens. It really happens. Eric <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=2719340">45:19</a> I also noticed on page 23 in the supplement that was actually part of it, like the interaction between the palliative care team and the oncologist. Vicki <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=2729038">45:29</a> Yeah, we did add that to our red cap form. That is true. But like, exactly what happens in those encounters, I don’t think we really know. We know that they happened. Eric <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=2738974">45:38</a> Okay, my last question, because we’re coming close to the hour. I mean, I think this is absolutely fabulous. We’re building the evidence. Joe, you mentioned that there was this guide that you created with your co authors. Have you ever thought about publishing it so people really understand what was actually in that syringe that you taught all these 22 sites or you told them that these are the important things to do besides page 23 in the supplement. Joe <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=2767352">46:07</a> Yeah. Are we allowed to do a little promo? Yeah, yeah. So, like, we have published. Yes. What’s in the syringes out there? You can buy it. Go on Amazon now. And. Eric <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=2778824">46:18</a> Yeah, yeah, it’s all there. The trial protocol, like what you did in this trial? Vicki <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=2785190">46:25</a> Well, we. It was before this, but it basically what we did. It was Joe, Jennifer, me, and Julia Jacobson, and we really looked at what have we done, Looked at our manuals that we’ve developed for all these studies, and then tried to help clinicians think about what the tasks are that they’re doing with patients over time. Eric <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=2804958">46:44</a> And, like, coping. Vicki <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=2806468">46:46</a> How to coping is a big part of that. Alex <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=2808892">46:48</a> And what’s the title? Vicki <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=2810468">46:50</a> What’s in the Syringe? I could probably pull one up. Eric <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=2813452">46:53</a> It’s actually called What’s in the Syringe. So we will have links to the book in our show notes and we’ll have a bunch of other links to the show notes to all of our listeners. Please go to the show notes. But before we end this podcast, maybe we can get a little bit more of Adele. Alex <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=2834060">47:14</a> (singing) Eric <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=2932810">48:52</a> That’s a no-show, right, Lynn? Lynn <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=2935026">48:55</a> Yeah, it’s not good for rvu. Vicki <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=2940040">49:00</a> Can I plug HPM? Eric <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=2941856">49:01</a> Yes. So this podcast is being published the week before AAHPM and HPNA. Eric <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=2950472">49:10</a> What else is happening during the HPNA AAHPM meeting? Vicki <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=2955624">49:15</a> Can I tell you how excited I am about this year’s annual assembly in Denver? I’m super excited about it. So we have several awesome keynotes. The first one on Thursday is actually going to be Krista Tippett and Lucas Johnson from on being, which is going to be fabulous. And Friday reach and step are going to be highlighted with our very own Joe Greer and Jennifer Temel and Simone Rinaldi and Laura Hansen from UNC. Toby Campbell from University of Wisconsin is going to be our MC. And we’re going to actually have a patient talking about her experience being in the video arm. So I think that’s going to be awesome. Alex <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=2995218">49:55</a> Cool. Vicki <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=2995612">49:55</a> And then Saturday morning, it’s going to be the top three scientific abstracts submitted to HPM. Alex <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=3001164">50:01</a> Wow. Vicki <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=3002108">50:02</a> Come hang out. Eric <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=3004020">50:04</a> And don’t forget about the GeriPal Pub crawl Thursday night, Feb 6, 8:00pm. Alex <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=3009596">50:09</a> Also to note, we are going to be doing a podcast with the abstract presenters, the Saturday plenary session. Abstract presenters as well. So look for that. Eric <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=3021228">50:21</a> That was absolutely fabulous. Great work on the studies that you’re putting out there. Vicki <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=3026620">50:26</a> Thank you. Simone <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=3028030">50:28</a> Thanks so much for having us. Eric <a href="https://grain.com/share/recording/48f1859c-23d1-4d4d-9d2d-70f56ab652ba/5Mc6sSlT5VJiPsO9aWRQ68ioSIHH6l3ilWmSlL52?referrer=docx&t=3029838">50:29</a> And thank you to all of our listeners for your continued support. </div> </div> </div></div><div class="vc_tta-panel" id="cme" data-vc-content=".vc_tta-panel-body"><div class="vc_tta-panel-heading"><h4 class="vc_tta-panel-title"><a href="#cme" data-vc-accordion data-vc-container=".vc_tta-container">CME</a></h4></div><div class="vc_tta-panel-body"> <div class="wpb_text_column wpb_content_element" > <div class="wpb_wrapper"> <h3>This episode is not CME eligible.</h3> </div> </div> </div></div></div></div></div></div></div></div></div></div> </div>The post <a href="https://geripal.org/telehealth-vs-in-person-palliative-care-a-podcast-with-joseph-greer-lynn-flint-simone-rinaldi-and-vicki-jackson/">Telehealth vs In-Person Palliative Care: A Podcast with Joseph Greer, Lynn Flint, Simone Rinaldi, and Vicki Jackson</a> appeared first on <a href="https://geripal.org">A Geriatrics and Palliative Care Podcast for Every Healthcare Professional</a>. ]]></content:encoded> </item> <item> <title>Deprescribing Super Special III: Constance Fung, Emily McDonald, Amy Linsky, and Michelle Odden</title> <link>https://geripal.org/deprescribing-super-special-iii-constance-fung-emily-mcdonald-amy-linsky-and-michelle-odden/</link> <dc:creator><![CDATA[Alex Smith]]></dc:creator> <pubDate>Thu, 23 Jan 2025 08:00:52 +0000</pubDate> <category><![CDATA[All Posts]]></category> <category><![CDATA[Quality of Life]]></category> <category><![CDATA[Sleep]]></category> <category><![CDATA[CME Eligible]]></category> <category><![CDATA[Podcasts]]></category> <guid isPermaLink="false">https://geripal.org/?p=7047</guid> <description><![CDATA[The post <a href="https://geripal.org/deprescribing-super-special-iii-constance-fung-emily-mcdonald-amy-linsky-and-michelle-odden/">Deprescribing Super Special III: Constance Fung, Emily McDonald, Amy Linsky, and Michelle Odden</a> appeared first on <a href="https://geripal.org">A Geriatrics and Palliative Care Podcast for Every Healthcare Professional</a>. ]]></description> <content:encoded><![CDATA[<div class="wpb-content-wrapper"><div class="vc_row wpb_row vc_row-fluid wpex-relative no-bottom-margins"><div class="wpb_column vc_column_container vc_col-sm-12"><div class="vc_column-inner"><div class="wpb_wrapper"> <div class="wpb_raw_code wpb_raw_html wpb_content_element vc_custom_1737590875179" > <div class="wpb_wrapper"> <iframe title="Libsyn Player" style="border: none" src="//html5-player.libsyn.com/embed/episode/id/34964275/height/90/theme/custom/thumbnail/yes/direction/backward/render-playlist/no/custom-color/00548f/" height="90" width="100%" scrolling="no" allowfullscreen webkitallowfullscreen mozallowfullscreen oallowfullscreen msallowfullscreen></iframe> </div> </div> <div class="vc_tta-container" data-vc-action="collapse"><div class="vc_general vc_tta vc_tta-tabs vc_tta-color-sky vc_tta-style-flat vc_tta-shape-square vc_tta-spacing-1 vc_tta-o-no-fill vc_tta-tabs-position-top vc_tta-controls-align-left"><div class="vc_tta-tabs-container"><ul class="vc_tta-tabs-list"><li class="vc_tta-tab vc_active" data-vc-tab><a href="#summary" data-vc-tabs data-vc-container=".vc_tta">Summary</a></li><li class="vc_tta-tab" data-vc-tab><a href="#transcript" data-vc-tabs data-vc-container=".vc_tta">Transcript</a></li><li class="vc_tta-tab" data-vc-tab><a href="#cme" data-vc-tabs data-vc-container=".vc_tta">CME</a></li></ul></div><div class="vc_tta-panels-container"><div class="vc_tta-panels"><div class="vc_tta-panel vc_active" id="summary" data-vc-content=".vc_tta-panel-body"><div class="vc_tta-panel-heading"><h4 class="vc_tta-panel-title"><a href="#summary" data-vc-accordion data-vc-container=".vc_tta-container">Summary</a></h4></div><div class="vc_tta-panel-body"> <div class="wpb_text_column wpb_content_element" > <div class="wpb_wrapper"> It’s another deprescribing super special on today’s GeriPal Podcast, where we delve into the latest research on deprescribing medications prescribed to older adults. Today, we explore four fascinating studies highlighting innovative approaches to reducing medication use and improving patient outcomes. In our first segment, we discuss a study led by Constance Fung and her team, which investigated the <a href="https://jamanetwork.com/journals/jamainternalmedicine/fullarticle/2824755">use of a masked tapering method combined with augmented cognitive behavioral therapy for insomnia (CBTI) to help patients discontinue benzodiazepines</a>. The study involved 188 middle-aged and older adults who had been using medications like lorazepam, alprazolam, clonazepam, temazepam, and zolpidem for insomnia. The results were impressive: 73% of participants in the masked tapering plus augmented CBTI group successfully discontinued their medication, compared to 59% in the open taper plus standard CBTI group. This significant difference highlights the potential of targeting placebo effect mechanisms to enhance deprescribing efforts. Next, we turn to Emily McDonald, the director of the <a href="https://www.deprescribingnetwork.ca/">Canadian Medication Appropriateness and Deprescribing Network</a>, to discuss her <a href="https://jamanetwork.com/journals/jamainternalmedicine/fullarticle/2823923">study on the impact of direct-to-consumer educational brochures on gabapentin deprescribing</a>. Patients received brochures detailing the risks of gabapentinoids, nonpharmacologic alternatives, and a proposed deprescribing regimen (see <a href="https://www.deprescribingnetwork.ca/useful-resources">here for the brochure</a>). Additionally, clinicians participated in monthly educational sessions. The intervention group saw a deprescribing rate of 21.1%, compared to 9.9% in the usual care group. This study underscores the power of patient education in promoting safer medication use. In our third segment, we explore Amy Linsky’s <a href="https://jamanetwork.com/journals/jamainternalmedicine/fullarticle/2823920">study that examined the effect of patient-directed educational materials on clinician deprescribing of potentially low-benefit or high-risk medications, such as proton pump inhibitors, high-dose gabapentin, or risky diabetes medications</a>. The intervention involved mailing medication-specific brochures to patients before their primary care appointments (click <a href="https://www.deprescribingnetwork.ca/useful-resources">here for the brochure</a>). The results showed a modest but significant increase in deprescribing rates among the intervention group. This approach demonstrates the potential of simple, low-cost interventions to improve medication safety. Finally, we discuss Michelle Odden’s <a href="https://jamanetwork.com/journals/jamainternalmedicine/fullarticle/2823919">study, which used a target trial emulation approach to investigate the effects of deprescribing antihypertensive medications on cognitive function in nursing home residents</a>. The study included 12,644 residents and found that deprescribing was associated with less cognitive decline, particularly among those with dementia4. These findings and the two studies Michelle mentions in the podcast (<a href="https://jamanetwork.com/journals/jamainternalmedicine/fullarticle/2429535">DANTE</a> and <a href="https://jamanetwork.com/journals/jama/fullarticle/2766421">OPTIMIZE</a>) suggest that carefully reducing medication use in older adults may help preserve cognitive function. However, the <a href="https://academic.oup.com/ageing/article/53/7/afae133/7708623">DANTON</a> study adds more questions to that conclusion. Join us as we dive deeper into these studies and discuss the implications for clinical practice and patient care. Don’t miss this episode if you’re interested in the latest advancements in deprescribing research!   ** NOTE: To claim CME credit for this episode, <a href="https://geripal.org/deprescribing-super-special-iii-constance-fung-emily-mcdonald-amy-linsky-and-michelle-odden/#cme">click here</a> **   <hr /> </div> </div> </div></div><div class="vc_tta-panel" id="transcript" data-vc-content=".vc_tta-panel-body"><div class="vc_tta-panel-heading"><h4 class="vc_tta-panel-title"><a href="#transcript" data-vc-accordion data-vc-container=".vc_tta-container">Transcript</a></h4></div><div class="vc_tta-panel-body"> <div class="wpb_text_column wpb_content_element" > <div class="wpb_wrapper"> Eric <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=960">00:00</a> Welcome to the GeriPal Podcast. This is Eric Widera. Alex <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=3448">00:03</a> This is Alex Smith. Eric <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=4312">00:04</a> And Alex, we’ve got another deprescribing super special with us today. Alex <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=7920">00:07</a> We have a full house to talk about deprescribing. We’re still working on this issue. We have not solved it, apparently. Our first guest is Emily McDonald, who’s a physician in general medicine and epidemiologist and Associate professor at McGill. Emily, welcome to the GeriPal Podcast. Emily <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=23352">00:23</a> Thanks for having me. Alex <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=24544">00:24</a> Great. And our next guest is Amy Linsky, who’s a physician and researcher at the VA Boston Healthcare System and associate professor at Boston University University. Amy, welcome to GeriPal. Amy <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=34532">00:34</a> Excited to be here. Thanks. Alex <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=36540">00:36</a> And next we have Connie Fung, who I know well through the Beeson community and is a physician, researcher, professor of medicine at UCLA. And we were talking about the fire situation there. I’m glad that’s starting to resolve. Connie, welcome to GeriPal. Connie <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=50596">00:50</a> Thank you. Great to be here. Alex <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=52396">00:52</a> And our last guest is Michelle Odden, who we know well, used to be here, is now epidemiologist and research scientist at the Palo Alto VA and is associate professor in Stanford. Michelle, welcome to GeriPal. Michelle <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=64680">01:04</a> Thank you for having me. Eric <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=66272">01:06</a> All right, we got a lot to cover. Before we do, we always start off with song request. Amy, do you have the song request. Amy <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=71288">01:11</a> For Alex, how about Just Like a Pill by Pink? Eric <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=74800">01:14</a> Why did you pick this song? Amy <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=76872">01:16</a> I mean, in addition to the lyrics being pretty spot on, I kind of wanted to see Alex singing Pink. Alex <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=83840">01:23</a> Yeah. This is a good challenge. Love it. Here we go. Alex <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=95370">01:35</a> (singing) Alex <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=153364">02:33</a> That was perfect for this deprescribing super special. I had to make one little edit there. I changed a word. Some of you may have noticed that. Emily <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=162044">02:42</a> A new anthem for deprescribing. Eric <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=164172">02:44</a> That’s right. I didn’t notice. I’m not a Pink super fan. Alex <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=167004">02:47</a> So there was a word...”I tried to call a nurse again, but she’s being a little…” I changed it to “rich” [laughter]. Eric <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=176980">02:56</a> Okay. This is like our, what, fourth deep prescribing super special? We haven’t yet figured it out. Why is it so hard? Well, I guess the question to all of you is, why is deprescribing so hard? It seems very easy to prescribe medicines, and we do that very well. Why is it so hard to deprescribe? In your thoughts, who’s up for taking that one? Amy <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=201716">03:21</a> At the risk of repeating what you’ve had said on your prior deprescribing ones, it’s hard to undo things. And the analogy that I always give with deprescribing is the idea of cleaning out your closet. Like, it sounds like a great, you know, rainy day activity. You take everything out, but then somehow your prom dress still ends up back in the closet because you might need it one day. Eric <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=222170">03:42</a> That’s the hard thing. Alex <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=223114">03:43</a> Right. Eric <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=223370">03:43</a> Like, I’ve seen a lot of, like, benzo deprescribing interventions, and while it may work during the intervention, six months, a year later, a lot of people are back on it. Michelle <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=236180">03:56</a> Yeah. Emily <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=236588">03:56</a> There are so many forces acting against us. Right. The system is not set up to deprescribe. It’s not easy to communicate changes once you’ve made them. The patients don’t always know what medications they’re on. I mean, you know, there’s tons of studies on why this is so hard and what the barriers are. We could have a whole episode just on, you know, why it’s so difficult. Eric <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=260740">04:20</a> Yeah. It does seem, though, there. There are barriers to taking your pills. You have to remember you got to pick it up at the pharmacy. Sometimes you have to pay for it, sometimes you have to pay a lot for it. There’s all of these also barriers that seem to be like, it’s very hard for me to remember to take any medicine, but when it comes to these medicines like benzos and gabapentin and PPIs, man, people just stick with them. Emily <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=287018">04:47</a> I mean, some of them are very sticky. Right. And we don’t have a lot to offer sometimes other than a medication. So, you know, we don’t have good access to physiotherapy. I’m from Canada. You know, it’s not necessarily covered or accessible for everybody. And so it is just so much easier to prescribe a pain medication than to get somebody into physiotherapy, just as an example. Alex <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=309300">05:09</a> Yeah, yeah, I’ll say. There are so many points at which deprescribing initiatives could have some Benefit, but because it’s so multifactorial, that’s why it’s hard to get people off medications. If you just focus on one point, then you’re probably not going to address everything. There’s no magic bullet failure point that we could address here. The other thing I’d just. In my perspective, the other thing I’ll say is what I’ve learned from these podcasts is that there’s this big sort of cultural momentum towards prescribing in Western medicine. And there’s so much work on, you know, you’ve got to take these medicines, you got to prevent this treat, that there isn’t that same sort of clinical momentum towards deprescribing. And I think of the analogy of, like, cancer screening. You know, we got to prevent cancer. We got our pink ribbons. We’re marching like, that’s the focus. The stopping the cancer screening doesn’t have that same sort of momentum. I wonder if our guests feel that that’s maybe sort of an underlying issue here. Emily <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=371502">06:11</a> Yeah, we definitely have a pill for every ill. Go ahead, Connie. Connie <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=375334">06:15</a> Yeah, I was just going to say that I think that there’s certainly a lot of expectations, right, that these pills are going to do something. And so one of the things that we were thinking about is like, well, if we want to get people off of these pills, do you have to address those expectations? You know, there are a lot of placebo effects out there, and there’s a lot of expectancy that when you take this pill, it’s going to help you. And there have been a lot of deprescribing studies for benzodiazepines and Z drugs where you’re really targeting the pharmacological aspect, but not those expectancies. Right. And so that could be part of it. Eric <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=413370">06:53</a> So you do a randomized control trial. You have your placebo group and your control group and your intervention group. Let’s say it’s a Z drug. And you see at like, two weeks, both groups improved by 30% on some symptom score. For insomnia, we see this with pain scores. Intervention after intervention, when you do these for symptoms, there’s like a 20 to 30% response rate in the placebo group. Is that what you’re talking about, Connie? Connie <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=444004">07:24</a> Yeah. And then for sleeping pills, it’s even higher. There’s this one meta analysis that found that 63% of. Of the drug responses were seen even in the placebo groups. 63%. And then there’s another study where they look at the placebo versus, like, no pill. So. And they were finding with the placebo group, there was a higher response than with no treatment. So, I mean, there’s clearly, there’s something going on there. Eric <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=473760">07:53</a> I wish I had that because I took Ambien on a flight to Australia because I can’t sleep on a plane, and I still can’t sleep on a plane. Ambien help. Emily <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=483300">08:03</a> I just want to say a friend of mine took Ativan on a plane and woke up and got a DVT. Alex <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=488892">08:08</a> Oh, no. Emily <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=490740">08:10</a> You know, I guess things could be worse. Eric <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=496660">08:16</a> So, Connie, you actually did a study looking at this placebo response, but instead of, you know, starting somebody on an insomnia pill and putting them on a placebo, it was kind of the opposite. Can you tell us what you did in your study? Connie <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=513390">08:33</a> Yeah. So we, we thought, well, you know, if we want to get people off of the sleeping pill, then we need to try to tackle some of these. These mechanisms that are driving the placebo response. And so, so we had a randomized trial where one arm got a masked or blinded tapered. So they didn’t know exactly how much they were taking from night to night during their taper, along with did they. Eric <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=539266">08:59</a> Know they were being tapered at all? Connie <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=541266">09:01</a> They did. So when we started off, we said, you know, the overall goal is going to be to get you off. But they didn’t know the sort of the rate of tapering. And in addition to that, we also had specific cognitive exercises that were targeting sort of these expectations for the pillar. And the comparator arm was a traditional taper, where we gave them a bottle and a pill cutter and a taper schedule. And both arms got what would be considered first line treatment for chronic insomnia disorder, which is cognitive behavioral therapy for insomnia. So both arms got cbti, but one arm got this blinded taper and the other got this open taper. Eric <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=585350">09:45</a> And the CBTI was slightly different, right? In the group that got the blinded taper? Connie <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=591454">09:51</a> Yeah, we call it augmented cbti. So both groups got the standard multi component stimulus control, sleep restriction, et cetera. But the group in what we call the empty cap group, they got these additional exercises, and then also they had this special diary where we would ask them every night, night or the next morning. So how much relative to your baseline dose, percentage wise, do you think you were taking? Eric <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=619760">10:19</a> Were they able to guess it? Alex <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=621024">10:21</a> Yeah. Connie <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=622240">10:22</a> So, you know, some people were thinking they were taking more and others less. And we also include in this diary a list of questions for the next day. To see like, you know, how they were feeling and then also how they were sleeping. And during the sessions, therapists would try to, you know, kind of probe at their expectations towards the pill. So like, if somebody said, you know, I slept terribly, you know, and they thought like, well, you know, it’s because you cut my, my dose. You know, they’d be like, well, how do you know? How do you know? How do you know that what was in there? Eric <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=655980">10:55</a> And you did that for like nine weeks and the last week they, you actually told them what their dose was. Was that right? Connie <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=662428">11:02</a> Right. Yes, it was a. Basically like two months. And then at the end there’s what we called the unveiling. So then they would show their responses versus the actual. And they’re, you know, different patterns emerged as far as, you know, some people were kind of overestimators, others under, and others were maybe closer. But you know what, we really wanted them to because it’s like there’s the two month intervention, but then we were following up six months after. Eric <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=689700">11:29</a> So every time like eight months after the. So you do two months and then six months after the two months, right? Connie <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=696804">11:36</a> Yeah. Eric <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=697132">11:37</a> Okay. Connie <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=698180">11:38</a> So, you know, every time they were going to go and take their pill, let’s just say, like they were still taking at the end, we wanted them to kind of question, okay, like, so what is this going to do for me? And how do I know? Eric <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=709278">11:49</a> Yeah. Emily <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=710430">11:50</a> Did you have people drop out of the study because they thought they were being tapered when they weren’t? Connie <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=715550">11:55</a> We actually had a really great response, like follow up rate. So most people stuck with it. I mean, of course we did have some people who dropped out of an intervention, but didn’t necessarily drop out of the study. So we’re still able to follow them up. And yeah, I mean, I think for some people it was anxiety provoking to not know exactly what they were taking. Amy <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=738900">12:18</a> My question to Emily, which is how did you get people to sign up to begin with? Connie <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=745220">12:25</a> Right. Yeah. Actually it was because both arms were getting treatment for their insomnia. I think that was, it was really helpful. Amy <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=753964">12:33</a> Medication treatment or the CBTI treatment? Connie <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=755868">12:35</a> The cbti. So, so, so that was, that was helpful to, to keep people in the study or to sign up, rather. Michelle <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=764700">12:44</a> I’m curious about what proportion got their group correct. How many knew that they were being tapered and how many were wrong in that guess? Connie <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=773660">12:53</a> Right. So. So both, both, you know, arms, they were all being tapered off. But we’re actually still analyzing all of the different patterns in terms of like, which percentage Tended to be like overestimators versus underestimators. But I had a terrific MSTAR medical student working with me this past summer who was looking to see whether there were the type of medication, like the half life or was a Z versus a benzo. Which factors were predictors of being like overestimators or underestimators. And it turns out that none of the actual properties of the meds were predictors. So we’re still trying to figure that out. Alex <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=814020">13:34</a> MSTAR medical students in aging research apply now. I think the application medications are due soon, Eric. Eric <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=819848">13:39</a> Okay, I gotta find out what actually happened. So at six months. So really eight months from the start of this trial, six months after you stopped the intervention, were people able to stay off the benzos? Connie <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=834080">13:54</a> Yeah, so we found in the empty cap arm, the mass tapering arm, 73% were off. And that’s six months after they stopped. Eric <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=841384">14:01</a> Three out of four. Connie <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=842672">14:02</a> Yeah. Yes, it was great. And in the comparator arm, which was, you know, they were getting basically two months of CBTI with an open taper that was 59%. So we had a larger percentage in the empty cap arm who had discontinued. And it was significant. Both arms, their insomnia improved, which is great. I mean, they were off their meds and their insomnia. Yes. Eric <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=872550">14:32</a> I mean, those are pretty impressive numbers in both groups, highlighting that you can stop these medicines. CBT does work and your insomnia continues to improve. Alex <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=885420">14:45</a> And is it ethical to do a placebo taper in real world clinical practice? Ethical and practical. I guess those are the questions. Eric <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=893748">14:53</a> Because you need somebody compounding the placebos too, right? Connie <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=897900">14:57</a> Yeah. So our study, we actually had a local compounding pharmacy and. And I would write the prescription, which is that. That’s actually a challenge because the amount of writing that goes on, I was writing paper prescriptions, it barely fit with my chicken scratch. But yeah, so we had a local compounded pharmacy prepare the meds. And the participants, they were okay with not knowing. So I think that’s the key thing. Emily <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=926910">15:26</a> Right. Connie <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=927662">15:27</a> It wasn’t like we just sort of did something on the slide. So as long as you think you. Eric <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=932792">15:32</a> Could do this in clinical practice. Connie <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=935400">15:35</a> Absolutely. Yeah. Alex <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=936848">15:36</a> Yeah. Connie <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=937360">15:37</a> Yes. I mean, we can. We had the local compounding pharmacy, we have patients or participants who say that they’re interested. I mean, the Laura, Carolyn and big shout out to Dr. Carolyn, who she and I were sleep fellows together and she’s a psychiatrist in private practice. And she actually did the feasibility study up in Portland with a local compounding pharmacy through with her Private practice practice. We put it through irb, but, you know, so it just shows that you can actually do this. Eric <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=966900">16:06</a> And people knew from an ethical standpoint. Right. People knew that they were being tapered. Emily <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=972092">16:12</a> Yeah. Eric <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=972700">16:12</a> And it was a mask taper, but they didn’t know when they were being tapered or how much they were being tapered. Is that right? Connie <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=978900">16:18</a> Right. Emily <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=979796">16:19</a> And I think it would be ethical in the real world because it’s done already. It’s done for allergy testing, but a food allergen, they’ll come in and they encapsulate and you don’t know, but you’re told ahead of time. You don’t know if you’re getting placebo or your allergen. So I think it is already being done. Alex <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=995150">16:35</a> It’s a great point. Eric <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=996078">16:36</a> Okay, Connie, I got one last question about your article. The percent stopped was significant between the two groups, but the dose and the frequencies of taking these benzos weren’t significantly different. Why is that? Connie <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=1011326">16:51</a> Well, I mean, I think at post one of those was significant, but I mean, there are so many people who came off of the Met. So if you look at the, you know, if you have zero versus zero. Alex <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=1022520">17:02</a> Yeah, yeah. It doesn’t matter. All right, I love that. Eric <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=1025992">17:05</a> So I guess one question then is this was a pretty intensive thing. So you had these nine weeks intensive CBTI therapy. You were writing these prescriptions. Is there another way for maybe more resource limited places? And this brings us to the question of patient directed education. Emily, you did a paper looking at patient directed consumer educational brochures around gabapentin deprescribing. Do you want to tell us a little bit about what you did? Emily <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=1060840">17:40</a> Yeah. So I’m the director of the Canadian Medication Appropriateness and Deprescribing Network, Kaden, and we had previously made brochures that we mailed out to people telling them how to get off their sleeping pills if they were interested. And so we adapted that brochure for gabapentinoids because there’s a big problem of overprescribing of gabapentinoids in Canada and North America. I’m an internist, so when I hospitalize patients, 1 in 8 of my patients now takes pregabalin or gabapentin. Eric <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=1095196">18:15</a> 1 in 10 older adults in the U.S. 1 in 8 in the U.S. in the U.S. 1 in 10 older adults. All older adults. Emily <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=1103308">18:23</a> Yeah. It’s one of the top most prescribed medications. Now I, you know, out of curiosity, sometimes I would ask my patients, do you know what this medication is and what it’s for a lot of times they didn’t know why they were taking it. A lot of times they couldn’t say whether it had helped them. So they didn’t know if they were taking it for pain. They couldn’t really say if it had improved their pain. So, you know, we thought that was interesting. So we took these brochures and said, you know, practically speaking, it is. Again, we talked about, it’s hard to deprescribe in the clinical setting, acute care, that’s where the study took place. Like there’s a lot of competing work to be done. So we said, well, what if we just hand them brochure and just let them know, hey, did you know you’re on this medication? These are some of the things that gets prescribed for. But the evidence is not great that it helps people. Here’s some of the harms, if you’re interested. You’re in the hospital right now, we can write you a taper, just mention to your doctor, mention to the team that you got this brochure and here’s even a suggestion for how to do it. We did that and we compared it to just what happens with usual care, which of course is not much. Just found that this was a really easy, low budget way of informing people about the medication, about the potential harms, and they were a captive audience in the hospital. Maybe even had come in with a complication. Right. Of the medication. Maybe a fall or delirium. Eric <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=1191492">19:51</a> Yeah. Emily <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=1192540">19:52</a> You know, some complication that might have even like, you know, kind of triggered that thought process about maybe it’s time for me to come off of the medication and just. Yeah, we found that it was a pretty easy way to increase deprescribing just by giving out the brochures. Eric <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=1207660">20:07</a> So low cost. There was 11% difference between the two groups. Usual care versus it was like 10% versus 21%. Emily <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=1217108">20:17</a> Yeah, exactly. Eric <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=1218300">20:18</a> Yeah, but limitations. This was not a randomized control study, right? Emily <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=1223380">20:23</a> No, it was not. No, it wasn’t a randomized control trial. We have staff that circulate between the hospitals and part of it is if the staff start to learn about it, there could be some contamination of your control. So we used patients who hadn’t seen the patients from before, and then patients from after got the intervention. So we did a controlled before and after study. So we kind of just looked at usual care up until we had recruited a certain number of patients, and then we switched over and started doing the intervention so that there’d be no contamination. Eric <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=1251200">20:51</a> And your deprescribing was on hospital discharge. How many deprescribed or is it later on? Emily <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=1257216">20:57</a> We looked at eight weeks. Yeah. So we called people up at eight weeks and they had to have either come off of it or have had a prescription in hand with a dose down to zero eventually. So someone was intending to get them completely off of it as opposed to like a dose reduction, for example. Eric <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=1273264">21:13</a> Great. And then the adjusted analysis number needed to treat of like eight. Emily <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=1277690">21:17</a> Yeah. So we did. We increased the absolute risk difference increase of 13%. Alex <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=1283450">21:23</a> That is an amazing number needed to treat. Suggests we should be doing this, especially because it’s low cost, low risk. Why aren’t we? Or are we? Is this what’s happening in Canada? I don’t know, Emily, what’s going on? Emily <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=1296938">21:36</a> Yeah, we have them available now on the ctu. They’re totally available online and we’ve started translating them into multiple languages. We’re starting to adopt them as well for different cultural communities. So it’s a matter of, you know, if, if you have a willing prescriber, if they’re willing to print it out, it’s. It’s there and you can do this. Eric <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=1317294">21:57</a> So can our listeners download those right now? Emily <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=1320334">22:00</a> Absolutely, yes. Yeah, they’re at the Canadian Deprescribing Network website. If you just Google Caden, we’ll have. Eric <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=1327182">22:07</a> A link to that on our show notes. Alex <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=1329062">22:09</a> Yeah, very well. Eric <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=1330094">22:10</a> Wait, Alex, there’s more, there’s more, there’s more. Because if you act right now, you can also look at three different drugs and patient directed education on deprescribing PPIs, gabapentin and other hypoglycemic agents. Is that right, Amy? Amy <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=1350292">22:30</a> That is, yeah, sort of. Right on the heels of Emily’s work, we used essentially the same brochures in discussion with Kaden. The PPI brochure, the hypoglycemia risk brochure, which was adapted slightly, which I’ll come back to, and explain a little bit more about the rationale behind it. And then we also had a gabapentin brochure. Although it was created at the same time and albeit similar, it was a bit more tailored to the VA and options that we had in the va, because as Emily was saying about the healthcare system in Canada, to get into some of the non pharmacologic ways of treating pain is a little bit more difficult. = Within the VA, there’s a program called Whole Health, which is really about trying to engage patients in many different modalities for pain management and just self care. So acupuncture, Tai Chi, Yoga, mindfulness and physical therapy, chiropractor. And so those are all options that are available. And I can actually refer my patients directly to. So we wanted to look at gabapentin, but have it all these other options available. One distinction though is we only included, and I’ll come back to some of how we did it and other differences, but we only included those taking 1800 milligrams a day or higher. And so I noticed, Emily, in your study it looked like it was around 600 a day as the average dose on the gabapentin. So we were looking at really high use and doses above 1800 milligrams per day that I have seen Patients of mine prescribed 4800mg per day. There’s no extra benefit with just a whole lot of extra risk. And so we were really just looking for the patients who are at doses beyond what they’re going to get any benefit from and trying to get them to a safer dose. And so we were interested in gabapentin from that perspective. And then the other that we were really interested in was for diabetes. And we were talking a lot at the top of the hour about a lot of the patient barriers, patient related barriers to deprescribing. But I think there’s a lot on us and I don’t necessarily think that we’re doing anything with ill intent because we want to do right by our patients. And there’s something that feels better about doing something than doing nothing, especially if someone is on something and hasn’t had a side effect, then you’re like, oh, you’re fine with it. So we really wanted to address this risk for low blood sugar in older adults with diabetes who had an A1C below what we would consider like safe for that age. And taking two medicines for diabetes that are pretty decent risk for landing you in the emergency department with low blood sugar, you know, not to say like to not treat diabetes, but what were those two medicines? So insulin, which is the injections, and then sulfonylurea. So primarily in our study, glipizide, and. Eric <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=1522090">25:22</a> It was a hemoglobin A1C of like less than 7, less than 7. Amy <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=1525344">25:25</a> They also had to be have at least also than one of the following older than age 65 or cognitive impairment, because again, like we’re asking patients who their time to benefit with some of these medicines also is not necessarily there and the risk is much higher or renal problems, kidney problems. So these are like really, really, really, really well treated to the point that the risks are probably now, but they. Eric <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=1549376">25:49</a> Didn’T have to have a hypoglycemic episode yet. Amy <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=1552290">25:52</a> Exactly. So we want, the whole thing is we want this to be proactive, like, let’s get people to stop taking the risky medicines before they land in the emergency department. But honestly, a large part of the diabetes part we think is a little bit more on the clinician. Connie <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=1566922">26:06</a> Right. Amy <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=1567170">26:07</a> When you start someone on an insulin or diabetes meds, you really, really instill in the patient, like, oh, you have to take this every day. You probably take it for the rest of your life. There’s no exit ramp. And so we don’t prime patients to think about stopping in the future. And there are metrics about how clinicians get evaluated in terms of their diabetes that people misinterpret of what those metrics are. And so we just keep going. And so we really wanted to have a medicine group that was around that we thought was a little bit more driven by the clinician behaviors and a little bit less about the patients. And so that was the main adaption that we did for that one. Eric <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=1603594">26:43</a> And this is in primary care, right? Amy <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=1605556">26:45</a> Right. So we did primary care. You know, maybe egocentric, I’m a primary care doc. But we also, most, most routine, prescribing, most renewals, chronic meds are going to be happening in the outpatient setting. And what we really wanted to do was make this to not interfere with the clinicians. It was extremely low touch for the clinicians. It wasn’t a clinical reminder. There was no pop up. There was nothing that blocked you from proceeding in clinic. And essentially we mailed the brochures to using, you know, old fashioned postal mail. We think they arrived and the they were sent about two to three weeks in advance of an upcoming primary care visit. And that was intentional. We didn’t want to just do a blanket, you know, send it to everybody on, you know, in the clinic who might be eligible, because that might inundate the clinic with phone calls or questions of like, why am I getting this brochure? Why is this, you know, medicine potentially bad for me? So we really wanted to time it in advance of that clinic visit so they could come in and raise the question with their clinicians. And similarly, so we looked for our outcomes at six months and essentially either stopping the medicine or just going down on the dose counted. And at six months, we found success across all the groups, about 1.2 times the odds for deprescribing in the group that got the intervention compared to those who did not. There’s no difference across the different medications in terms of the effectiveness of the brochure and what I will say separate from the brochure though, if we were just to look at the medication groups and how they thought about or what their rates of deprescribing were. The biggest deprescribing rates, although it was the smallest group, was actually in that high dose gabapentin group. Eric <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=1710800">28:30</a> Huh. And deprescribing as far as anything, you could stop it, but you could just go down on the dose. Amy <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=1717116">28:37</a> You could go down on the dose. The only because of technical measurement issues, the insulin one was either start, you either had to stop it or continue. There was no dose reductions. Just because it’s really hard to capture in prescribing data how much people are. Eric <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=1730276">28:50</a> Taking and how big of a magnitude is this? What percent of people actually had some deprescribing in the two groups? Amy <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=1740268">29:00</a> So we actually had a really higher than expected baseline rates of deprescribing, about 25% and then it went up to about 29% in the intervention group. But that absolute difference of 4%, and we know at least in the PPI group, the proton pump inhibitor group, those are so over prescribed that even if we’re just talking about a small absolute magnitude difference here at the population level, it could save people from taking meds that just they’re not getting benefit from, they’re potentially getting risk and save, you know, their effort, our effort, and let us focus on the things that the meds that probably matter more for their continued health. Alex <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=1780254">29:40</a> And did you consent people for this study? Amy <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=1783198">29:43</a> We didn’t know, we did not consent. It was done as a pragmatic trial because we weren’t changing the medicines. All we were doing providing information and we did give a brief overview via email to the clinicians, basically saying, hey, your patients might come in with this. Here’s some information about deprescribing, here’s some information about these medicines. You make the clinical decisions. We cannot tell whether it’s appropriate or not completely from administrative data. We just want to educate the patients. And now you guys can make a more informed decision about whether you should or shouldn’t continue this medicine. Alex <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=1820830">30:20</a> Any pushback from the clinicians or the patients? Amy <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=1824670">30:24</a> No, we got very little pushback from clinicians to the extent that when we tried to interview them afterwards to see how it impacted their practice, very few clinicians, remember, even were aware that this had happened because it was so minimally invasive with their clinical practice. We did do a survey of patients Afterwards and just. But more to understand how they felt getting the brochure, whether they, that led to them talking about their medicines, basically. Were we able to activate patients to be more engaged in their healthcare and healthcare decisions? Eric <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=1860210">31:00</a> I got a question for all three of you then. So on one hand you have Connie, high touch, high yield, I mean what 70 something percent deprescribing, like a huge deprescribing versus Amy and Emily kind of low touch. You’re just sending that as brochure. Smaller yield, like what’s the right approach? Or is it both thoughts on that? I’m going to open it up to the group. Amy <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=1889790">31:29</a> Yes, both. I mean, why not? Eric <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=1893150">31:33</a> But is there a group that you should target more for the high? Like you can’t do high touch for everything. Emily <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=1899160">31:39</a> But I mean I think like your first wave is, you know, like Amy’s and my approach. Right. And then maybe you have other people who are more resistant or who need more oversight for their taper or who try, maybe they’ve tried it out and said, listen, I tried but that eight week taper, that one size fits all you have, it’s not for me, it was too fast, I need more support, you know, so then you need to go to the more high touch intervention, I think. But you could just start as a first wave, you know, using the brochure and see what you catch. But for sure there’s going to be people who need Connie’s approach. Eric <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=1934420">32:14</a> Yeah, I love that. Connie, would you agree? Connie <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=1938420">32:18</a> Yeah, I think there’s definitely a need for a variety of different approaches. It’s interesting because we tried, we had another study using a low touch approach. We mailed out the Empower Light brochures within the va but we also, it was a randomized control trial. So we mailed out just some general information about sleep with a link to a site that was just information about sleep. And the other, the Empower brochure was enhanced with a link to online CBTI that’s sort of free and anonymous and we unfortunately did not find a significant difference. Not sure why it was during the height of the pandemic. Could have been people weren’t seeing their providers. But I do think though that there’s still a role for like a low touch, you know, medium touch, high touch. Emily <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=1990200">33:10</a> Well, and Justin Turner mailed out the brochures in the province of Manitoba for opioids. Michelle <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=1994720">33:14</a> Right. Emily <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=1995000">33:15</a> This study was published I think maybe six months ago and that, that did not work. So, you know, big population level study using the brochures and, and there Was. No, wasn’t really a significant difference in deprescribing of opioids. So, you know, the medication class might matter as well. Eric <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=2013536">33:33</a> Yeah. Well, speaking of medication classes, like, we have some drugs, probably all of us are in agreement, worthwhile stopping. You got your benzos, you got your gabapentins, you got your PPIs. We have other drugs a lot of people are taking, like, antihypertensives that, you know, if you look at the SPRINT trial, older adults improves lots of outcomes, including mortality, potentially cognition. But is this an area that we should also be thinking about deprescribing, especially in fro older adults? And that brings us to our last study, Michelle. Michelle, you looked at this for nursing home patients deprescribing antihypertensives, is that right? Michelle <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=2055390">34:15</a> That’s correct, yes. As you’ve said, we know blood pressure control is a cornerstone of cardiovascular prevention and even dementia prevention. In midlife and even in older age. Eric <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=2069250">34:29</a> Everybody gets their blood pressure checked. Very first thing you do when you visit a doctor’s office. Weight and blood pressure. Michelle <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=2075802">34:35</a> Absolutely. I would say it’s probably the most measured physiologic parameter and strangely still one of the least understood, especially in older adults with multiple chronic conditions. Eric <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=2088450">34:48</a> Sprint actually excluded people in nursing homes, so we don’t have any good data on blood pressure control in nursing home patients. So frail or older adults. Michelle <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=2098589">34:58</a> That’s correct. So SPRINT excluded nursing home residents, people with dementia, and of course, diabetics. So a huge proportion of the group that I’m interested in studying, and that is people who are older adults with multiple chronic conditions for lt who often reside in a nursing home. Eric <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=2119813">35:19</a> Yeah. So you looked at this population. What did you do in your study? Michelle <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=2124990">35:24</a> So we did a little different study design than the other articles we’ve heard about today. So we did a completely observational study. We were trying to mimic or emulate the trial that we would like to do. So, of course, we’d love to do a large randomized controlled trial where we randomize people to either maintain their antihypertensive regimen or or deprescribe. But this can be a difficult population to enroll in RCTs, primarily because of the vulnerability of the population. They have a lot of chronic conditions. They might not be able to complete the trial protocol. So we leveraged observational data in which there’s already a lot of deprescribing happening. In our early studies in the same nursing home population, we found about 70% of residents had a deprescribing event of antihypertensives during their stay. And that was a stay of a median length of six months. So we’re seeing that there’s a lot of deprescribing happening of antihypertensives in this population, but very little RCT evidence to tell us about the benefits and harms of that deprescribing. So in our study, we used observational data to observe residents who were deprescribed. And that’s a reduction in dose of 30% or more or a reduction in the number of antihypertensive medications. And then we used statistical methods to try to control for differences in the characteristics of people who deprescribed and did not deprescribe because of course it’s a non random event. So that’s where we have to turn to our friends of statistical models to try to balance the things that might lead someone to deprescribe. We used all our best methods available and we found that those residents who deprescribe their antihypertensives actually had a little bit of a slowing in their cognitive decline. And we saw that that slowing of the cognitive decline was even stronger in those with dementia. The effect size was pretty mild. It wasn’t something that I think should be necessarily used as a cognitive preservation intervention. But we at least know that this is reassuring for providers and patients who are interested in deprescribing that we can say it looks like we’re not seeing any harm for your cognition and it might even improve cognitive function. Eric <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=2283540">38:03</a> And there was another study, right? A very like a 14 or 16 week study looking at deprescribing antihypertensives in the nursing home. Was that a randomized control study? I think you mentioned it in your discussion section too. Michelle <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=2297192">38:17</a> Yeah, there have been a couple studies. There have been the DANTE trial as well as the optimized trial, and both have shown really no harm in deprescribing antihypertensives. There was a newer trial which it was a little less conclusive. It’s called Danton, and it was just published mid last year, mid 2024. And unfortunately, that trial was stopped early because of some current concerns about increased adverse events in the deprescribing group. And that was also in nursing home residents. So, you know, I think if anything, all of these, the small amount of evidence that does exist is just highlighting the uncertainty and the need for more randomized controlled trials and more high quality observational studies of depreciing to help providers and their patients make this decision. Alex <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=2350700">39:10</a> Can we, because you’re an expert epidemiologist and have explained things to us in our division clearly in the past. I remember you explaining, I think inverse probability treatment, waiting at some point. This was a, this was like a target trial emulation. Is that the right, Am I emulated target trial? Is that the right words? And can you explain this to our readers? I mean our listeners and readers? Some people read emails. Yeah. Michelle <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=2377734">39:37</a> So as I mentioned, in an ideal world we’d like to do a trial, but in situations where a trial is not feasible for multiple reasons or it just simply hasn’t happened yet, we can use observational data to emulate the trial we would like to do. So a couple things make this different than like maybe some of the observational studies that you’ll see in other settings. One is that we always want to be studying a change, right? So in this case we were studying the people at the moment of deprescribing and looking at those who deprescribed versus those who maintain their antipretensive regimen. And the reason we want to be studying a change is because we need to control for the pre change characteristics that led to that change. In epidemiology, we call those confounders. We need to be able to look temporally at what happened before either the person de prescribed or stayed in their treatment group. Then again, we use statistical methods to try to control for those differences. That’s one feature of a target trial emulation is that you’re looking at longitudinal data and you’re looking at controlling for confounders before some change was made and then looking at events that happened after that change. Alex <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=2460420">41:00</a> Now is that an advance over like great observational methods or is this like observational data dressed up to look like a randomized trial? Michelle <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=2470100">41:10</a> You know, you could say that target trial emulation is just a well conducted epidemiologic study. Like there’s nothing magical that makes a target trial emulation. It’s just a collection of design principles and analytic methods that try to mimic a trial. In thinking about things like selection, the time of initiation or change in medication, looking at the length of follow up and looking at well defined outcomes, there’s nothing magic that puts it into the target trial realm other than this like set of principles of design and analysis. Alex <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=2514208">41:54</a> Yeah, and one of the, in defense of emulated target trials, you’re using real world observational data. If you had a randomized trial, it’s likely that there are some patients who would not agree to participate or who you might exclude from that trial who you would include in an observational data set of patients with multimorbidity dementia residing in nursing homes. Eric <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=2540732">42:20</a> But it also comes at the cost, right, that fundamentally there’s a difference between the group of people that we decide to stop these medicines and the group that we decide to continue them on. Alex <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=2552964">42:32</a> And you don’t think you can balance. Eric <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=2554028">42:34</a> All those things really. Alex <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=2555396">42:35</a> You can balance for. Right. The Donald Rumsfeld. I heard that Stephen Colbert talked about this last night. You can balance for the knowns, the known knowns, but you can’t balance for the known unknowns that you can’t measure or the unknown unknowns. And if it was a real randomized trial, it would be sorted. The reason Stephen Colbert was talking about it, by the way, is because he said there’s another category called unknown unknowns, unknown knowns, which is when we know something because we had the same president previously and then we unknow that. Michelle, thoughts about randomized trials, not your. Michelle <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=2593526">43:13</a> Thoughts about $I don’t want to tackle politics, but, you know, we’re all taught that randomized controlled trials are the, you know, the pinnacle of evidence because of this key feature of randomization, balancing, confounding. And yes, that’s a wonderful feature that is critical for causal inference. But the huge limitation, as you alluded to, is that randomized controlled trials, even the best designed RCTs, don’t represent real world patients. You know, if you look at Sprint, for example, you know, Sprint represented a fraction of the community dwelling older adults who are actually indicated antihypertensive medication. And so even though Sprint was an, you know, an exceptionally well conducted trial, it does the results might not apply to community dwelling elders and especially nursing home residents because they didn’t include any nursing home residents. And we know that the calculus of benefits and harms depends on characteristics of the patients. So I think RCTs have been oversold to us a little bit because of this nice feature of randomization. But what we’re trading off for that is selection bias. And I’m not a clinician, but from what I hear from my clinical colleagues is they’re concerned about treating patients to guide to guideline level standards when the guidelines were derived from RCTs that don’t look like their patients. And that was really what motivated me getting into this research is wanting to help my clinical colleagues make better decisions when they didn’t have evidence in people that looked like the patients that they were prescribing for. Eric <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=2695304">44:55</a> I love it. Michelle, I’m wondering if I could turn to all four of you now, kind of magic wand. If you had a magic wand, after listening to everybody else’s articles and doing your own, what would you use that magic wand on around the issue of deep prescribing in older adults? Connie, I’m going to turn to you first. We’ll go in order of how we did your articles. Connie <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=2717970">45:17</a> Gosh, it’s so hard. I mean, I feel like there’s so many different factors. Right. So I think the targeting the prescribers, really trying to reach out to the patients, doing both at the same time. Does my wand cover like the full spectrum? Eric <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=2733484">45:33</a> It could cover big or small. So what would you do if you were focused on the prescribers? How would you reach out to them with the wand? Connie <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=2740604">45:40</a> I mean, for me, I’m really kind of intrigued by this placebo effect. So I would want to see where we can tackle that more. Right. And try to see how we can leverage mass tapering or trying to target expectancies. That would be my thing. Eric <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=2757932">45:57</a> Oh, that’s great. All right, Emily. Emily <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=2761030">46:01</a> I think I’d go for the public, you know, big multi million dollar campaign just to make people aware that medication isn’t the answer. That, you know, every medication has side effects that if you can, for some of the conditions we’ve talked about today, that, you know, you’d want to do what you can to avoid medications if it’s safe to do so and like really just increase the public’s knowledge on this topic. I think it’s at a love it. Eric <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=2788234">46:28</a> For every drug company ad, there has to be another drug company sponsored pharma deep prescribing ad talking about why you should stop this drug. Emily <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=2797770">46:37</a> Yeah, big public awareness campaign. Alex <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=2799882">46:39</a> It’s great. Eric <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=2800874">46:40</a> Amy. Amy <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=2802034">46:42</a> I think I would mine actually attack approaches, both the patients and the clinicians. I would want to change sort of people’s psychological comfort with this idea that if you stop something or reduce something, not only might you have no additional harm like Michelle was showing, but that you can also actually have benefits that this isn’t going to be a we’re taking something away and you’re going to do worse. Like we’re taking something away and there’s a lot of benefits that go with it and it’s worth trying that Wonderful. Eric <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=2833856">47:13</a> Michelle. Michelle <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=2835400">47:15</a> I’m going to go really big with my magic wand. You know, I think kind of like we were talking about at the beginning of the show, I think a lot, a lot of resistance to deprescribing comes from the fact that our society is fairly ageist and we don’t really want to talk about or understand the changes that happen in bodies when they age. So I think if we could just embrace aging as a change that happens to all of us, should we be fortunate to go through go through it. We would be more open to deprescribing that accompanies. Eric <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=2862988">47:42</a> That was great. Love the magic wand. How about a little bit more pink? Speaker 7 <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=2877040">47:57</a> I’m lying here on the floor where you left me I think I took too much I’m crying here what have you done? I thought it would be fun I can’t stay on your life support There’s a shortage in the switch can’t stay on your morphine Cause it’s making me itch I said I tried to call the nurse again but she’s being a little rich I think I’ll get outta here Where I can run just fast as I can through the middle of nowhere to the middle of my frustrated fears and I swear you’re just like a pill Instead of making me better you’re making me ill Just making me ill. Eric <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=2934420">48:54</a> Thank you all for being on this podcast. Learned a lot. Love the work that you’re doing. Alex <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=2939556">48:59</a> So creative too. Thank you. Michelle <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=2941364">49:01</a> Thanks for having us. Connie <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=2942404">49:02</a> Thank you. Amy <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=2942820">49:02</a> Had a great time. Eric <a href="https://grain.com/share/recording/88265858-4f9d-4a1f-82c9-e4c0e3efb222/5pRgx6jsvrd7us7jVJ1HUXPE6fhNf2QDuY5LYFhY?referrer=docx&t=2943828">49:03</a> And to all of our listeners, thank you for your continued support. </div> </div> </div></div><div class="vc_tta-panel" id="cme" data-vc-content=".vc_tta-panel-body"><div class="vc_tta-panel-heading"><h4 class="vc_tta-panel-title"><a href="#cme" data-vc-accordion data-vc-container=".vc_tta-container">CME</a></h4></div><div class="vc_tta-panel-body"> <div class="wpb_text_column wpb_content_element" > <div class="wpb_wrapper"> <h3 style="text-align: center;">***** Claim your CME credit for this episode! *****</h3> Claim your CME credit for EP340 “Deprescribing Super Special III” <a href="https://ww2.highmarksce.com/ucsf/index.cfm?do=ip.claimCreditApp&eventID=14880">https://ww2.highmarksce.com/ucsf/index.cfm?do=ip.claimCreditApp&eventID=14880</a> Note: If you have not already registered for the annual CME subscription (cost is $100 for a year’s worth of CME podcasts), you can register here <a href="https://cme-reg.configio.com/pd/3315?code=6PhHcL752r">https://cme-reg.configio.com/pd/3315?code=6PhHcL752r</a> For more info on the CME credit, go to <a href="https://geripal.org/cme/">https://geripal.org/cme/</a> Disclosures: Moderators Drs. Widera and Smith have no relationships to disclose. Guests Constance Fung, Emily McDonald, Amy Linsky, and Michelle Odden have no relationships to disclose. Accreditation In support of improving patient care, UCSF Office of CME is jointly accredited by the Accreditation Council for Continuing Medical Education (ACCME), the Accreditation Council for Pharmacy Education (ACPE), and the American Nurses Credentialing Center (ANCC), to provide continuing education for the healthcare team. Designation University of California, San Francisco, designates this enduring material for a maximum of 0.75 AMA PRA Category 1 credit(s)™. Physicians should claim only the credit commensurate with the extent of their participation in the activity. MOC Successful completion of this CME activity, which includes participation in the evaluation component, enables the participant to earn up to 0.75 MOC points per podcast in the American Board of Internal Medicine’s (ABIM) Maintenance of Certification (MOC) program. It is the CME activity provider’s responsibility to submit participant completion information to ACCME for the purpose of granting ABIM MOC credit. ABIM MOC credit will be offered to subscribers in November, 2025. Subscribers will claim MOC credit by completing an evaluation with self-reflection questions. For any MOC questions, please email <a href="mailto:moc@ucsf.edu">moc@ucsf.edu</a>. </div> </div> </div></div></div></div></div></div></div></div></div></div> </div>The post <a href="https://geripal.org/deprescribing-super-special-iii-constance-fung-emily-mcdonald-amy-linsky-and-michelle-odden/">Deprescribing Super Special III: Constance Fung, Emily McDonald, Amy Linsky, and Michelle Odden</a> appeared first on <a href="https://geripal.org">A Geriatrics and Palliative Care Podcast for Every Healthcare Professional</a>. ]]></content:encoded> </item> <item> <title>Caring for the Unrepresented: A Podcast with Joe Dixon, Timothy Farrell, Yael Zweig</title> <link>https://geripal.org/caring-for-the-unrepresented-a-podcast-with-joe-dixon-timothy-farrell-yael-zweig/</link> <dc:creator><![CDATA[Alex Smith]]></dc:creator> <pubDate>Thu, 16 Jan 2025 08:00:31 +0000</pubDate> <category><![CDATA[Advance Care Planning]]></category> <category><![CDATA[Advocacy]]></category> <category><![CDATA[All Posts]]></category> <category><![CDATA[CME Eligible]]></category> <category><![CDATA[Podcasts]]></category> <guid isPermaLink="false">https://geripal.org/?p=7037</guid> <description><![CDATA[The post <a href="https://geripal.org/caring-for-the-unrepresented-a-podcast-with-joe-dixon-timothy-farrell-yael-zweig/">Caring for the Unrepresented: A Podcast with Joe Dixon, Timothy Farrell, Yael Zweig</a> appeared first on <a href="https://geripal.org">A Geriatrics and Palliative Care Podcast for Every Healthcare Professional</a>. ]]></description> <content:encoded><![CDATA[<div class="wpb-content-wrapper"><div class="vc_row wpb_row vc_row-fluid wpex-relative no-bottom-margins"><div class="wpb_column vc_column_container vc_col-sm-12"><div class="vc_column-inner"><div class="wpb_wrapper"> <div class="wpb_raw_code wpb_raw_html wpb_content_element vc_custom_1736989792733" > <div class="wpb_wrapper"> <iframe title="Libsyn Player" style="border: none" src="//html5-player.libsyn.com/embed/episode/id/34874500/height/90/theme/custom/thumbnail/yes/direction/backward/render-playlist/no/custom-color/00548f/" height="90" width="100%" scrolling="no" allowfullscreen webkitallowfullscreen mozallowfullscreen oallowfullscreen msallowfullscreen></iframe> </div> </div> <div class="vc_tta-container" data-vc-action="collapse"><div class="vc_general vc_tta vc_tta-tabs vc_tta-color-sky vc_tta-style-flat vc_tta-shape-square vc_tta-spacing-1 vc_tta-o-no-fill vc_tta-tabs-position-top vc_tta-controls-align-left"><div class="vc_tta-tabs-container"><ul class="vc_tta-tabs-list"><li class="vc_tta-tab vc_active" data-vc-tab><a href="#summary" data-vc-tabs data-vc-container=".vc_tta">Summary</a></li><li class="vc_tta-tab" data-vc-tab><a href="#transcript" data-vc-tabs data-vc-container=".vc_tta">Transcript</a></li><li class="vc_tta-tab" data-vc-tab><a href="#cme" data-vc-tabs data-vc-container=".vc_tta">CME</a></li></ul></div><div class="vc_tta-panels-container"><div class="vc_tta-panels"><div class="vc_tta-panel vc_active" id="summary" data-vc-content=".vc_tta-panel-body"><div class="vc_tta-panel-heading"><h4 class="vc_tta-panel-title"><a href="#summary" data-vc-accordion data-vc-container=".vc_tta-container">Summary</a></h4></div><div class="vc_tta-panel-body"> <div class="wpb_text_column wpb_content_element" > <div class="wpb_wrapper"> Many older adults lose decision-making capacity during serious illnesses, and a significant percentage lack family or friends to assist with decisions. These individuals may become “unrepresented,” meaning they lack the capacity to make a specific medical decision, do not have an advance directive for that decision, and do not have a surrogate to help. In today’s podcast, we talk with Joe Dixon, Timothy Farrell, and Yael Zweig, authors of the <a href="https://agsjournals.onlinelibrary.wiley.com/doi/10.1111/jgs.19288">AGS position statement on making medical treatment decisions for unrepresented older adults</a>. We define “unrepresented” and address the following questions: <ul> <li style="font-weight: 400;" aria-level="1">What is the scope of the unrepresented problem?</li> <li style="font-weight: 400;" aria-level="1">Why not use the older term “unbefriended”?</li> <li style="font-weight: 400;" aria-level="1">How should we care for unrepresented individuals in inpatient and outpatient settings?</li> <li style="font-weight: 400;" aria-level="1">What can we do to prevent someone from becoming unrepresented?</li> </ul> Find answers to these questions and more in this week’s podcast. Listen in, and if you’re interested, explore the topic further with the following resources: <ul> <li style="font-weight: 400;" aria-level="1"><a href="https://agsjournals.onlinelibrary.wiley.com/doi/10.1111/jgs.19288">AGS Position statement on making medical treatment decisions for unrepresented older adults</a></li> <li style="font-weight: 400;" aria-level="1"><a href="https://www.ethics.va.gov/docs/policy/VHA_Handbook_1004_03_LST.pdf">VA Policy on Advance Care Planning</a> and on <a href="https://www.va.gov/vhapublications/ViewPublication.asp?pub_ID=11611">Informed Consent </a></li> </ul>   ** NOTE: To claim CME credit for this episode, <a href="https://geripal.org/caring-for-the-unrepresented-a-podcast-with-joe-dixon-timothy-farrell-yael-zweig/#cme">click here</a> **   <hr />   </div> </div> </div></div><div class="vc_tta-panel" id="transcript" data-vc-content=".vc_tta-panel-body"><div class="vc_tta-panel-heading"><h4 class="vc_tta-panel-title"><a href="#transcript" data-vc-accordion data-vc-container=".vc_tta-container">Transcript</a></h4></div><div class="vc_tta-panel-body"> <div class="wpb_text_column wpb_content_element" > <div class="wpb_wrapper"> Eric <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=74448">01:14</a> Welcome to the GeriPal Podcast. This is Eric Widera. Alex <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=84878">01:24</a> This is Alex Smith. Eric <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=85870">01:25</a> And Alex, who do we have with us today? Alex <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=87350">01:27</a> We’re delighted to welcome back Tim Farrell, who’s a geriatrician, associate chief for Age Friendly care at the University of Utah and chair of the American Geriatric Society Ethics Committee. Tim, welcome back to GeriPal. Tim <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=100494">01:40</a> Wonderful to be here. Thanks for having me. Alex <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=102630">01:42</a> And we’re delighted to welcome from my home state of Michigan, Joe Dixon, who’s a geriatrician and palliative care doc at Trinity Health. Joe, welcome to the GeriPal Podcast. Joe <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=114260">01:54</a> Thanks so much. Really excited to be here talking with you all. Alex <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=117236">01:57</a> Joe, which city are you joining from? Joe <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=119748">01:59</a> Ann Arbor. Alex <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=120956">02:00</a> Ann Arbor, where I went to undergrad. All right, and finally we have Yael Zweig, who is a geriatric nurse practitioner at NYU. Yael, welcome to GeriPal. Yael <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=132108">02:12</a> Thank you. I’m excited. Eric <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=133868">02:13</a> So we’ve got a lot to cover today. We’re going to be talking about the American Geriatric Society position statement on making medical treatment decisions. Alex <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=141452">02:21</a> For… Eric <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=141720">02:21</a> For unrepresented older adults. But before we go into that topic, Tim, I think you have a song request. Tim <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=149846">02:29</a> Yeah, it’s such an honor to make a song request. Thank you. You know, I could not think of a better song than All By Myself. Can you guys do that one? Eric <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=159470">02:39</a> Absolutely. Tim, there are multiple versions out there. What’s your favorite one? Tim <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=164478">02:44</a> I’m partial to the Eric Carmen version. I’m a little bit of a throwback kind of 70s 80s guy. So if you wouldn’t mind indulging that request, that’ll be great. Alex <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=173630">02:53</a> That’s great. And Eric Carmen died this past year. He died in 2024. And this song, interestingly, was…he admitted that it was inspired by the second movement of Rachmaninoff’s Second Piano Concerto, which is one of my favorite pieces of music. So I found that little bit of history interesting. This one’s a little high, so we’ll see what happens here. This could be exciting. Alex <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=200100">03:20</a> (singing) Eric <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=271820">04:31</a> Initially, when you said Eric Carmen, I thought you said Eric Cartman. So I thought we were going to have a very different tone on that one. (laughter) Tim <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=291078">04:51</a> That’s lovely. Thank you. Alex <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=293910">04:53</a> Lovely is the right term. Eric <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=297030">04:57</a> So I know I’m getting old in academia. When I was part of a published AGS position statement on unbefriended older adults many years ago, which has been replaced by obsolete. It’s obsolete. Like many things I do nowadays, obsolete. I’m wondering if maybe I’ll turn to Joe. Why come up with a new position statement on unbefriended older adults. Joe <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=328050">05:28</a> So, Eric, I would not say obsolete. I would say that it was an absolutely wonderful foundation on which to build. Tim being lead author on that statement. It was, you know, a very nice structure to work with. That being said, we saw a few reasons to go ahead and update the statement. Number one, that we’ll probably spend some time discussing. I don’t know if we want to spend too much time now or later, but was the terminology, you know, unbefriended? For a number of different reasons, we felt like we should update to unrepresented. And I’m happy to dive into those now. Eric <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=370610">06:10</a> Why is that? Joe <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=371250">06:11</a> Yeah, sure, sure. So I think the first reason that we saw and felt the opportunity was ripe for updating was that some of us had come across some anecdotal examples of patients expressing some offense to that terminology. I, for example, had one patient, I remember during my fellowship, I was in geriatrics clinic and had a very well read patient who came in and was reading a New York Times article, I think in the well section at one point. And I was asking this patient about if he had filled out an advanced directive. And he told me, kind of with an eye roll, tongue in cheek, he’s like, well, I guess I’m one of those unbefri patients. And you know, again, it just really struck me and I could, I could see that there was some, some pain behind that, not only because of the terminology, but maybe what he felt, you know, values that reflected or at least the societal values that he felt like we were projecting upon him. So actually, in talking with Tim, Tim I know, has some other examples too, and I came across others later. And so it was, it was kind of impressive to kind of see the public response to that when they, when they heard the way that we were using terminology to describe our patients. And Tim, I don’t know if you want to talk. Tim <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=457126">07:37</a> I was going to say the terminology really came from the legal literature that we kind of adopted, I think in that 2017 statement. But I remember very clearly, not too long after the 2017 statement was published, our office administrative assistant said, hey Tim, you got a phone call from someone I didn’t recognized. And it was someone in the public who had read the 2017 statement and was sort of put off by the term unbefriended. And I think it got us all to thinking, gosh, we’re kind of missing something here, like we need to take another look. And so when it kind of came time to have an opportunity to re up the position statement, I think we all felt it was a really good time to really kind of make a break. We also were seeing some trends in the literature. The literature was actually starting to use the term unrepresented a lot more than unbefriended. So we decided to come out and just sort of put out sort of an unequivocal statement that we really should be changing our terminology. One other thought too is just that because there’s so much variability in terminology, that variability makes it even harder to kind of advocate for this population when you don’t know what to call Them because then researchers don’t know what terms to use. You can’t get uniformity in terms of people all thinking about this population kind of in a similar way. So we thought that really coalescing around this term, which is still difficult because sometimes you think of unrepresented is politically unrepresented or it is a challenging definition with three parts to it that’s really hard to capture with any one term. But we think unrepresented is an advance beyond the previous terminology. Eric <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=554520">09:14</a> And how would you define unrepresented? What are those three parts? Tim <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=558846">09:18</a> Yeah, so someone who, who kind of lacks the decision medical decision making capacity also lacks advanced completed advanced directive and lacks a surrogate decision maker. Alex <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=571902">09:31</a> So those three, what if they lack decision making capacity? They have an advanced directive, they lack a surrogate decision maker. But you worry that the advance directive does not provide enough guidance for the specific decision at Yael Jo, do you. Tim <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=588706">09:48</a> Want to take that one on? Yael <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=590002">09:50</a> I was just going to say that what I really like about the position statement in Table 1 is that it goes a step further. So it defines unrepresented as someone who lacks decisional capacity to provide informed consent to a particular medical treatment. And what I like about that is it’s forcing you to think not just about their capacity as a whole. Right. But we always talk about capacity being decision specific. So in your situation, explain one more time. So it was someone who has an. Eric <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=618156">10:18</a> Advanced directive, but the advance directive is too vague, which is. Alex <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=623100">10:23</a> Yeah, it’s like the advance directive I completed with my lawyer when we were doing like estate planning, which is if you were a vegetable, would you want to be kept alive? Yes or no? Yael <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=634188">10:34</a> More like a living will kind of a thing. Is the patient in your descriptor? Do they have a health care decision maker? Do they have a health care proxy? Alex <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=641236">10:41</a> No, they don’t. They have an advanced directive that specifies the type of they would care they would like to receive in a very specific situation, but not the situation at hand. Yael <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=652200">10:52</a> Yeah. And I think that’s where there’s so much state by state variability. Right. So like as an example, in New York State, if someone has no healthcare proxy that they’ve designated, there is a legal structure by which we can assign a surrogate, whereas other states don’t have that same structure. So part of this is to really advocate for there being more uniformity across every state. Right. Because I mean, California is different. Right. But if you work in New York, you could be seeing patients in New Jersey and Connecticut. And so there’s complexity in Understanding how each state manages this. Alex <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=684402">11:24</a> So I guess somebody could still be unrepresented if they lack capacity for this specific decision. They have an advance directive. It doesn’t really apply to this situation. It doesn’t provide enough guidance for the clinicians to make decisions. They really need to look to somebody else. And there is nobody else identified in that advance directive. And there are no default pathways of family or friends to rely on and no known people who could potentially represent this person from within their inner circle. Is that fair? Tim <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=719648">11:59</a> Yeah. One of the things we talk about, we Talked about in 2017 version Also, this one is really sometimes there’s an assumption made very early on that there’s no one else. But what we advocate for is really obviously there can be time pressure. There’s no time, very little time to cast a broader NEPA when there is some time before an important decision to really try to think broadly, knowing that there can be conflicts of interest. So for example, you know, the director of the assisted living facility could be the person who knows the patient the best. Yet that person could very well have a financial incentive to, you know, make a decision a certain way to keep the, the bed filled or what have you. So those types of relationships, clergy, non family members, we talk about, I think cohabitating unmarried couples. Right. There’s just categories that are, are speaking of represented, they’re not well represented in most states. Decision making hierarchies by default. Eric <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=780868">13:00</a> I also love that too, because even on our inpatient ballot of care consult service, whenever somebody says that they’re unrepresented or they don’t have a surrogate, we never believe that until we usually look up. And importantly, our social worker, Aunt Kelly, actually does a search and I would say 75% of the time she finds somebody maybe even higher than that, finds somebody who’s actually a surrogate. We do work in the va, so there’s a hierarchy at the va, so there’s federal law takes precedence here. But it’s incredibly important to do that little bit of extra work. Alex <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=815728">13:35</a> And I just want to clarify what you just said, Tim. Were you saying you started off by talking about somebody who might have conflicts of interest, like the person who runs the assisted living facility or something like that. And then you mentioned a whole string of other people, chaplains, et cetera. Were those people who you’re saying similarly might have some conflict, or were you saying that those are people who might serve as representatives who traditionally haven’t been. Tim <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=841710">14:01</a> Thought of as really, really the latter? Yeah, I think, I think really in Terms of the conflict, I was thinking more of people who had a really clear vested interest with a, you know, holding a bed or something like that, where the others would be people who had been associates of this person and could tell you something about really their values and preferences when they can’t, you know, when the patient cannot provide them for you on their own. Eric <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=863326">14:23</a> Yeah. All right, so we have people who don’t have capacity, they don’t have an advanced directive to guide us with a particular decision, and we have no surrogate to turn to in our default hierarchy. How big of a problem is this? Joe, I’m going to turn to you to start us off. Joe <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=884680">14:44</a> Yeah, and it’s a really tough question because we really cannot answer that definitively in any way. There’s some indications of how big the problem might be. And in fact, just kind of referring to the introduction of the paper, we start to kind of address that as best as we can. But there are some estimates out there, and the one that we have kind of on the second page of our paper is that the estimated range based off of papers that we reviewed was between on the low end, 70,000, and on the high end, 330,000. So, you know, widely differing estimates. It’s very, very hard to, you know, get an accurate estimation there. You know, one thing that we do know demographically is that more and more people in the United States, I mean, we have an aging population. You know, baby boomer generation started to turn 65 and older back in 2011. And so we’re well within, you know, the time period of the baby boomers, you know, very large generational cohort becoming older adults now. And more and more of them are aging alone as well. You know, marriage rates have fallen. The amount of children that people have had has decreased, and many people do not have any children. And we know that kind of a parallel thread with that. Is that loneliness, something that has been in, you know, medical literature more and more recently, is increasing along with those trends parallel to it? Not exactly explanatory, but most certainly kind of part of this fear of this rising cohort of people at risk of becoming unrepresented and those who are already unrepresented. Alex <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=1005010">16:45</a> That really rings true with my clinical experience. And just over my short clinical lifetime, I feel like it’s gone from a once a month issue to like a once a week issue. And I know I do primarily inpatient work. Yael, I think you do inpatient work as well. Does that ring true to you? Yael <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=1023312">17:03</a> Yeah, absolutely. I mean, I think also Like New York City has its own like, uniqueness in a lot of ways in terms of like people being able to live alone and also thinking about these non traditional surrogates where there’s like a lot of considerations you have to make about conflicts. Like, I’ve had people who’ve appointed their super as their healthcare decision makers and certainly, I mean, I feel like every, every time we talk about what’s changed in, in day to day life, we reflect on Covid. But like, I feel like that still can’t really be understated in terms of like people just losing social connections. Tim <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=1054452">17:34</a> I’d say in the outpatient setting, something that I see a lot is sort of disconnected, kind of geographically separated families where people are almost like functionally unrepresented because there’s not someone there to make a decision in time or they’re not available. Maybe my favorite example of this is I had a patient in an assisted living facility whose son said he was only going to be available like on Tuesdays and Wednesdays if there was an emergency. Right. Because of his work schedule or whatever. So that’s great if you have a crisis on those two days. But what about the other five days? So I have another patient who came to Utah to be near family and then the family recently all left and moved to Idaho. So she’s kind of stuck here all alone. So yes, they’re a phone call away. But sometimes when there’s a quick decision, sometimes even that’s too far. Eric <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=1104540">18:24</a> Yael, I’m going to turn to you kind of boots on the ground incorporating this new position statement. Let’s say you have a 70 year old who comes in, doesn’t have capacity. Let’s say they’re in the ICU now on a ventilator. Their advanced directive. They have one. Yay. Yay. They have an advanced directive. It says if I have an irreversible condition, I would not want to be kept alive on machines. But you’re not sure, like, maybe they’re admitted for like copd. You’re not sure what to do in this particular case. But they also did not do the DPOA for healthcare form. So there’s no healthcare surrogate. What’s your next step? Yael <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=1146980">19:06</a> Yeah, I mean, I just was kind of smiling as the two of you were talking about your social worker that, you know, can help find people. And the reality is like, that’s a very fortunate position to be in, right? To have a social worker who’s dedicated in many places. You know, a lot of us are in, well, resourced academic medical centers, but many people are not. And I know for us, we don’t have, like a designated social worker on our team. And so my kind of mantra always is, like, most people have people. Right. So it’s sort of like, I know we’re working under the assumption that we’re talking about unrepresented, but I think the amount of effort that needs to go into finding people sometimes is, you know, quite extensive and also, like, really important. Right. So on the clinical side, people are really focused on how long do they have to be on the ventilator and managing that. But sometimes it’s just thinking about calling senior centers and local religious organizations and just thinking outside of the box to find someone who, even if they are not defined as a surrogate and whatever your state allows, but do they know the person? It might be someone who’s unavailable or unwilling to be the decision maker, but they can at least guide an ethics committee or guide the clinician, whatever your organization policy is to say, like, this is what I know of this person and what their values might be. And that can really inform what your own institutional policy is. And the last thing is just to understand what your institutional policy is. Eric <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=1231776">20:31</a> Yeah. And I wonder, you know, one of the things that could be really scary for people who may not be close family or even close family, maybe they’re like the ex wife, which we sometimes see, or an estranged son, or the landlord is like, what does this mean for me? Like, do I have to be responsible for all their care? Am I financially liable? Yael <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=1257240">20:57</a> Exactly. Eric <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=1257896">20:57</a> Am I legally liable? Yael <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=1259400">20:59</a> Exactly. Eric <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=1260232">21:00</a> How do you talk to surrogates about what you’re asking them to do? Yael <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=1265600">21:05</a> Sometimes I think it’s helpful, like in whatever paperwork you have, but just to sit down and say, this is actually what it means. Right. Because if you. Like, I’m again, like, using New York state as an example. But like, if you look at a surrogate document, it walks you through step by step, the hierarchy of decision makers, but also, like, how that surrogate should be making decisions. And so I think it’s helpful to again, reflect on, again, like, there’s a whole separate piece about, like, the financial aspect. Right. And that’s when we started talking about guardian and, and other things. But this is really medical decision making. And to say, like, it’s okay if you’re not comfortable being this person, but it helps me to know them to understand how to make medical decisions. So sometimes it can be helpful just to, like, speak to, like, what those person’s values are as they understand It. Eric <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=1315800">21:55</a> Joe, Tim, any other recommendations? Like, one thing I always think about too is for a lot of these people, they may never have talked to them about what’s important to them or what they would want if they ended up in an ICU on a breathing machine. So this whole idea of substituted judgment. I’m going to put yourself in your shoes. Is usually not a thing for some of these people to be able to do, but they can help us with their underlying values, kind of best interests. What do they think would be best given this? So we’re not making this decision just as a healthcare institution. What do you all think? Joe <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=1353940">22:33</a> Yeah, amen to that. I think it’s just so, so important to broadly explore those values and priorities of each patient before you start telling people what they should or should not do or guiding them. I so often see it flipped where people are telling people what they should or should not be doing before they know anything about the patient. And so just kind of having those exploratory conversations and you know, what, what was. What’s a day in the life like? What, you know, what did so and so like to do? Tell me, you know, just what, what. I often ask what, what was a day in the life like? Just to get a sense of what, you know, somebody’s day looked like. You know, I don’t want to go back too much, but one of the really, really important things too that I think is often skipped and I wish that I could report this was not, but I see it so frequently as does this patient even have capacity in the first place? I mean, for, you know, a ventilated patient who’s in the ICU who is unable to engage whatsoever, you know, clearly that patient does not have capacity. But, you know, it’s just crazy how many times I’ve seen it to where a patient’s hard of hearing and so they’re not even talking with the patient or there’s a language barrier plus hard of hearing or the patient just appears old.So actually really assessing capacity and being specific with your decision making I think is just so critically important and so often missed. Eric <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=1449194">24:09</a> Don’t claim incapacity until you’ve gotten that pocket talker out an interpreter. Yael <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=1455898">24:15</a> And actually assessing capacity with like an actual structured assessment, not just like that you think what you think or, you. Eric <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=1461756">24:21</a> Know, do you have a good structured assessment that you use? Yael <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=1464236">24:24</a> I’m partial to the apple bound criteria. Eric <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=1467100">24:27</a> Great. I think there’s ace, the Assessment of Capacity evaluation form. You can Google it. It’s up there. Tim, Joe, any that you Use or you like to think about those. Tim <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=1479804">24:39</a> And also there’s one called Med Sale, which I think is interesting because it poses some hypothetical situations, more for the outpatient setting. But I think it’s useful. I think there’s a scenario like, what would you do if someone came to the door and offered you, you know, a bunch of money? Obviously a scam, but if the patient’s in a situation where they’re like, susceptible to scams, then it kind of clues you in that maybe you should really seriously question, like their financial capacity, for example. Eric <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=1512776">25:12</a> Yeah, so it’s interesting because that also brings up the question about you can have capacity for one thing, but. Alex <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=1518224">25:18</a> Yeah, exactly. Eric <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=1519600">25:19</a> You can have a capacity to decide on a surrogate, but you may not have the capacity to decide on the TAVR procedure that is being brought up. Tim <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=1529440">25:29</a> That’s absolutely right. And I think my understanding is that the capacity make really basic decisions, like naming the person you wish to be your surrogate really is preserved even with fairly significant cognitive impairment. So it should always be presumed, even if you determine they lack capacity, it’s still best practice to say, let’s at least try to elicit this patient’s sense of things. Even if we don’t feel they have capacities, I think that information is still included in the totality of the decision making, if you will. Eric <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=1565070">26:05</a> Okay, so we’re going to make sure that they actually don’t have capacity to be called unrepresented. We’re going to get those pocket talkers out, those interpreters out. We’re going to spend time with them, potentially going to do a structured evaluation. Alex <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=1578214">26:18</a> And even if they’re intubated, it doesn’t mean that they lack capacity. We’ve had many patients, especially, you know, back in the day when I was in training, everybody who was intubated was completely sedated. That’s not as true anymore, fortunately. And so oftentimes you can work with patients who are intubated and find creative ways to ask yes, no questions to elicit responses that will help. Yael <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=1603062">26:43</a> Speech language pathologists can be very like, helpful and underutilized. Everyone thinks about them for swallow, but in fact, their ability to aid communication can be like really a game changer as well. Eric <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=1613750">26:53</a> So we’re going to make sure by capacity, we’re going to look for that advanced directive. We’re going to look for surrogates. Darn it, they don’t have any of those. Like, what should we do? Like, should we just, you know what, we have courts. Let’s just get them a guardian. Joe <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=1633670">27:13</a> So not quite so I guess in this premise, it seems to have changed a little bit now. And just, just confirming, I want to make sure that I understand the question. So now nobody that we have to rely on, we don’t have any sort of surrogate whatsoever. Eric <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=1651210">27:31</a> They are unrepresented, they’re in the ICU on a ventilator. I am not sure what to do. Maybe I’ll just make the decision myself what to do around. Should we keep them on the ventilator? Like, I’m an attending physician, I got nearly 20 years of experience, I probably know this person as good as anybody else right now. Or you know what, let’s just, you know, have our social workers start figuring out guardianship, get the courts involved. Joe <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=1678780">27:58</a> I think so much of this would hinge too on, on the acuity of the situation. I mean, if somebody’s decompensating quickly, obviously we’re not going to, you know, take 30 days to pursue a guardian. So I guess maybe if we could get some clarification on this case. Is this like in a week we might need to consider a trach sort of thing? Eric <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=1697036">28:17</a> Yeah, yeah. Trach and PEG versus withdrawal of life sustained treatments. Yeah, big decision. Joe <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=1705630">28:25</a> Yeah, it is really tough. And assuming that we have a truly unrepresented patient and we’ve done our due diligence to try to find anybody out there, that becomes very, very tough. And it’s really just been a very small handful of times that I’ve truly come across anybody who is completely unrepresented. I wonder, you know, Tim or Yael, do you have any anecdotal examples on top of mind of where you have come across this and you know, maybe don’t have quite enough time to pursue a guardian and where you went or I’m curious, you know, your approaches, I. Yael <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=1748746">29:08</a> Think, and this is where, you know, for this audience it’s hard. Right. I think you just have to know like your institutional approach and I think I could say for myself too, like being a real clinical provider, like what interests me and joining the AGS ethics committee, it’s really just like clinical experience with tough cases like this. And in my experience in discussing with ethics and ethics committees, not everyone will have someone to make decisions for them. But again it’s, it’s doing your best even if it’s someone who’s not willing to make decision, but who can provide information to contribute. And there’s always going to be a difference. Right. In urgent versus like non urgent scenarios. And I like what the position statement says about guardianship. It really speaks to the challenges with guardianship and the difference in someone with long term expected, long term incapacity versus someone, why guardianship is really not recommended for someone. The case, like you mentioned, where it’s like an acute episode with potential expectation for recovery, you don’t want to go to court. And then the process of having a guardian and then trying to have that guardian ultimately removed is a difficult one for a patient who’s seriously ill. Yeah. Eric <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=1822540">30:22</a> So it takes like six months to get a guardian or conservator, which at this point would not be a really practical or feasible step. Yael <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=1829420">30:29</a> Exactly. Joe <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=1830366">30:30</a> And Eric, this is a really tough one. I think all of us are kind of, you know, a little stuck on what to do, as we always are in these circumstances. And I think what I’ve seen in the few cases of truly unrepresented patients to where we can not find anyone whatsoever to speak on their behalf is that, you know, unfortunately, you know, or fortunately, I don’t know how to best think about it because we just don’t know the patient’s values. I think the system is kind of tuned into just doing the most for the patient, assuming that they would want to continue. Eric <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=1871740">31:11</a> Well, that said, I do like the position statement because it also brings up in these short term situations that we should be thinking about institutional committees. So like an ethics committee, like our VA process is very clear in, in places where we have these unrepresented individuals, that there is a clear process. So if it’s an absolutely emergency, you got a physician in the med, you know, the health center medical director, if it’s urgent, like in this particular case, we get the ethics committee involved. And if it’s a longer term issue, which I think the position statement is bringing up, you know, you start thinking about guardianship, conservatorship, because you’re kind of going to need those for discharge anyways. Yale, does that sound right? Yael <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=1918428">31:58</a> Yeah. And I like what the position statement says about the va. I mean, I think as we think about models that we want to support, I think a model that defines how you would make decisions in different scenarios is very practically useful. And of course, the people listening want to know, practically speaking, what do I do in that situation? The ethics committee at your institution is like always right. What you do, it’s just what happens next is really dependent so much on the state and the situation that you’re in in terms of like an emergent situation versus not. And I like too, that even if, you know, sometimes you do have to pursue guardianship, you know, it is a last resort and sometimes that’s necessary. But I like how the position statement also speaks to like, that doesn’t mean that the guardian is not including the patient. Right. So even if the patient’s impaired, they still might refuse interventions. They still might have an opinion about interventions. And so I really appreciate that. I think it’s always a good learning point for people who, you know, are not necessarily doing this day to day. Alex <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=1981422">33:01</a> Right. So that the guardian may think it’s in this patient’s best interests to initiate dialysis at this time. But when they come to take the patient to dialysis, they’re screaming and protesting and then what, are you going to tie them down every time you take them to dialysis? No, though they lack decision capacity to make the decision about that. That’s like ethically repugnant to have to do that. So those expressions should carry some weight. I wonder if we should pivot to the outpatient setting, maybe talk about prevention. Yeah. So what does the position statement have to say about how do we keep from, keep this from happening? If you’re in the outpatient setting, Tim, and you’re seeing somebody in clinic and you’re worried that they’re heading towards a path where, you know, their chronic diseases are getting worse, we may have to make some decisions. And boy, I haven’t been able to work with them to find somebody to help them make a decision. What do I do? Tim <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=2037790">33:57</a> Yeah, no, I think it kind of in some ways mirrors the thought process on the inpatient side. But I think the most important thing is just to, to recognize, to ask these types of questions. I think it’s. So you mentioned the burden of chronic multimorbidity and sort of flogging through the diabetes and the hypertension. Often that doesn’t leave a whole lot of time for other things. And so one of the points we make in the position statement is take advantage of the advance care planning codes to get reimbursed for these conversations. The annual wellness visit, well, is a great time to check in because those are really tailor made opportunities. And ideally at other times too. Patient just got discharged from the hospital, just coming back from the skilled nursing facility. We’re very fortunate to have Medicare chronic care management, which is a wonderful resource that really is very goal driven, incorporating things like patient priorities, care and what matters most. And so that really sort of helps, I think, to get patients sort of primed to have this conversation at a point where you really can intervene and maybe be more likely to find those people who are surrounding Them who may have some insight before a catastrophe occurs. Eric <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=2123794">35:23</a> And also any suggestions on how. Let’s say you ask, you know, is there anybody that you trust to help make decisions for you if you can’t? And they say, no, there’s no end with that. Or do you dive deeper? Tim <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=2135758">35:35</a> No, I would go a little, a little further, you know, and maybe kind of take a page from Joe’s book when Joe said, you know, what does a good day look like for you? Or what, you know, what are the things that you value kind of go off. Because I think if they say no to that question, it behooves us to become a little more creative to think. Okay, so you said you wanted to stay living in your apartment for the next year. What do you think it would take to do that? And then maybe indirectly, they’ll start to tell you, well, here are the people I rely on to take me to my appointments. Here’s who sets up my medications. And from that conversation, you might be able to get some insight. And if you’re really fortunate, you do a home visit and really, really learn a lot more that way, too. Eric <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=2183460">36:23</a> But, you know, Dr. Farrell, you’re the person that I know the most. You can just decide for me. Tim <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=2189940">36:29</a> Yeah, you know, that’s a. That’s an interesting one. And I think. I think I would probably, in that case, have to have a really frank discussion about some of the limitations of clinicians sort of making. Making those types of consequential decisions on behalf of patients and say, you know, you really probably don’t want to go there. You may regard me highly as your physician, but I really don’t. You know, I see you for this 30 minute slice of time three times a year, but there’s 364 other days of the year that are not filled with interactions with me. They’re filled with other things in your life. So tell me about those other 363 days of the year. Eric <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=2232072">37:12</a> Yeah, I do want to say, as an inpatient provider, what I often find helpful is when the patient, outpatient provider actually, you know, joins that conversation for these unrepresented people and shares what they know about that person. Man, is that helpful. Especially as we get into the ethics committee deliberations. Yael, sorry for interrupting. Yael <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=2253110">37:33</a> Oh, no, no, not at all. I was just going to say also that I think that to your point about, like, what happens when the patient says, like, well, I would want you as my, as my healthcare provider to make decisions. Like, you can sort of reassure that fear to say, like, well, this is why I think you should think about who, you know, family or friend you should appoint. But I will still be available to you and I will support that person. And then also if it’s someone who’s, let’s say in the hospital and you’re trying to encourage them to do a healthcare proxy and they’re someone who has like, you know, friends as family and they’re potentially estranged, it’s really important to say, like, if you don’t have capacity in the future and if you don’t appoint someone as your healthcare proxy, this is, for example, the surrogate law. And this is who would make decisions for you. And if you don’t want these people to make decisions, then this is why it’s really important to think about doing a health care proxy that they understand. Eric <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=2304120">38:24</a> And it’s hard because the surrogate laws vary by state. And even with the state, like I’m in the va, I’m actually not in the state of California right now. It gets really confusing as we think about, not just for the individual patient, as we think about like health care systems as a whole, a society as a whole, what the US should be doing. Any thoughts about what we should be doing from a prevention standpoint in that regard? Joe <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=2332520">38:52</a> There’s so much to say. I think we could take this so many directions. Probably everybody has, has different thoughts and different ways they could take this. I mean, I know that there are people out there, there’s, what is it, the Health Care Decision act, people who put together legislation for states to adopt and propose this legislation in 1993. It’s been revised in 2023. And so there are people out there kind of at least proposing kind of more legislation that could be more widely. Eric <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=2367178">39:27</a> Adopted, a uniform act around these decisions or how we should be thinking about surrogates and. Joe <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=2374866">39:34</a> Yeah, yeah. And you know, I suppose something like that could be adopted federally. But, but I think, you know, the way that this, this country often works is kind of things go state by state. And so, you know, things have been proposed to be adopted by states. And, and I think that that’s gotten some limited traction, but I think, you know, apart from that too, what we can do, you know, as individuals or health care institutions is separate from what states could do too. I think it’s kind of multilayered and I think that one area in particular to intervene is patients going into long term care. I mean, it’s just such a high risk population in terms of advancing illness and disability, often cognitive in nature. And so to kind of use that as one intervention point, and I think Tim mentioned outpatient, which I think is probably a really great one too. I’ll hand to him if he wants to take that. Tim <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=2433514">40:33</a> Yeah, I was going to say, I think, you know, we talked about kind of external to the health system, but within health systems, I think certainly things like social determinants of health screening that gets at a lot of these issues of loneliness, transportation. If you see someone, you know, they have no transportation, they’re single, they have food insecurity, those are important in themselves. But altogether they paint a picture of somebody who could be at risk of being unrepresented. So kind of using that as a springboard to identify people and then I think taking advantage of the new CMS measure, the age friendly hospital measure. I think actually that’s a way to link the inpatient and the outpatient, because the inpatient measure domain 4 has a social vulnerability domain where you have to screen for social isolation. And I fully expect CMS will bring this measure into the outpatient world. So why not start building those systems that bridge inpatient and outpatient so we can kind of flag social isolation as sort of an initial warning sign to say, you know, let’s take the next step and say not only isolated, could they actually be at risk for being unrepresented in the future and what can we do about it now? Eric <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=2504190">41:44</a> Yeah. I wonder, as we come to the end of this, if you had a little magic wand around prevention of unrepresented older adults, what would you use that magic wand on from a prevention standpoint? Yeah. Al, I’m going to turn to you first. Yael <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=2522750">42:02</a> Yeah, that’s a good one. I mean, I think having longitudinal relationships with providers, like beyond just your own, you know, physician or practitioner, pa, whoever you’re seeing in the outpatient, but having a relationship with maybe it’s like a community health worker or a social worker, someone else who can help you beyond just like your medical needs and thinking about kind of your, the health of your, you know, the psychosocial system at large. Eric <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=2552900">42:32</a> It’s great. Joe? Joe <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=2555940">42:35</a> Oh, I’m just kind of thinking of this magic wand question again. So many things you could say. I would say that maybe a multipronged approach. Again I mentioned long term care, outpatient, inpatient, maybe even, you know, Medicare enrollment. All of these could be kind of, I don’t want to use them as, you know, quote harassment points, but points to repeatedly say to patients as they’re entering any of these care pathways to say, hey, look, who is your surrogate? Who is the person that you designate and kind of not dropping it until that is complete. Eric <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=2593280">43:13</a> Great. Tim. Tim <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=2595280">43:15</a> I’m an educator at heart. I always think about the workforce needed in healthcare to have these conversations. And if everyone, not just geriatricians, but if everyone can have as a procedure the ability to ask about what matters in a very empathetic and skilled way and to remember to build this into health systems to make it sort of automatic, I think that would be a real advance to help solve this problem. Alex <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=2623172">43:43</a> Wouldn’t our system be better if instead of training our residents to ask about code status every time a patient’s admitted or in the outpatient setting, we train them to ask about what matters most and who could help doctors make decisions in the cases of incapacity. That would be so much better, right? Eric <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=2642272">44:02</a> I guess Alex did his magic wand. I’m going to use a magic wand then. And my magic wand would be. And there is a place in the EHR where it’s dedicated, where you put that information so you don’t have to go hunting for it and spend 70 hours trying to find who this person’s surrogate is. Yael <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=2660720">44:20</a> I would say for AGS 2025, because I’m going to be giving a presentation with a colleague about that specific issue. We did create something called an ACP navigator where it pulls in all the information and it can be accessed like in one area in the chart so you don’t have to chart dig. Eric <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=2680724">44:40</a> Oh, that’s great. We have that at the VA too. A life sustaining treatment note. And for those who are interested, we’re going to have some on our show notes, some resources. I’ll put a link to the VA advanced care planning policy that has information on what to do around this because I do think it’s actually very helpful. Alex <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=2698708">44:58</a> Did we get everybody’s magic wand? Eric <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=2700292">45:00</a> I think we got everybody’s magic wand. Alex <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=2701860">45:01</a> And some of us use a multi pronged approach. Eric <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=2705020">45:05</a> Yeah, that’s good. Multiple magic wand. Because yeah. None of us want to be all by ourselves… Alex <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=2719580">45:19</a> (singing) Eric <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=2788060">46:28</a> Yael, Tim, Joe, thanks for joining us on this GeriPal podcast. Tim <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=2792460">46:32</a> Thanks so much. This is great. Joe <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=2794268">46:34</a> Yeah, thanks for inviting us. This has been a lot of fun. Yael Thank you. Eric <a href="https://grain.com/share/recording/1c4eb20f-7855-4707-9777-47e0d66c5568/W1aRNrxowCXIDHkQI3dGsCuibCFKzmf4psyF1Y69?referrer=docx&t=2797660">46:37</a> And a big thank you for the position statement. Too. We’ll have a link to that in our show notes and thank you to all of our listeners for your continued support. </div> </div> </div></div><div class="vc_tta-panel" id="cme" data-vc-content=".vc_tta-panel-body"><div class="vc_tta-panel-heading"><h4 class="vc_tta-panel-title"><a href="#cme" data-vc-accordion data-vc-container=".vc_tta-container">CME</a></h4></div><div class="vc_tta-panel-body"> <div class="wpb_text_column wpb_content_element" > <div class="wpb_wrapper"> <h3 style="text-align: center;">***** Claim your CME credit for this episode! *****</h3> Claim your CME credit for EP339 “Caring for the Unrepresented” <a href="https://ww2.highmarksce.com/ucsf/index.cfm?do=ip.claimCreditApp&eventID=15126">https://ww2.highmarksce.com/ucsf/index.cfm?do=ip.claimCreditApp&eventID=15126</a> Note: If you have not already registered for the annual CME subscription (cost is $100 for a year’s worth of CME podcasts), you can register here <a href="https://cme-reg.configio.com/pd/3315?code=6PhHcL752r">https://cme-reg.configio.com/pd/3315?code=6PhHcL752r</a> For more info on the CME credit, go to <a href="https://geripal.org/cme/">https://geripal.org/cme/</a> Disclosures: Moderators Drs. Widera and Smith have no relationships to disclose. Guests Joe Dixon, Timothy Farrell, Yael Zweig have no relationships to disclose. Accreditation In support of improving patient care, UCSF Office of CME is jointly accredited by the Accreditation Council for Continuing Medical Education (ACCME), the Accreditation Council for Pharmacy Education (ACPE), and the American Nurses Credentialing Center (ANCC), to provide continuing education for the healthcare team. Designation University of California, San Francisco, designates this enduring material for a maximum of 0.75 AMA PRA Category 1 credit(s)™. Physicians should claim only the credit commensurate with the extent of their participation in the activity. MOC Successful completion of this CME activity, which includes participation in the evaluation component, enables the participant to earn up to 0.75 MOC points per podcast in the American Board of Internal Medicine’s (ABIM) Maintenance of Certification (MOC) program. It is the CME activity provider’s responsibility to submit participant completion information to ACCME for the purpose of granting ABIM MOC credit. ABIM MOC credit will be offered to subscribers in November, 2025. Subscribers will claim MOC credit by completing an evaluation with self-reflection questions. For any MOC questions, please email <a href="mailto:moc@ucsf.edu">moc@ucsf.edu</a>. </div> </div> </div></div></div></div></div></div></div></div></div></div> </div>The post <a href="https://geripal.org/caring-for-the-unrepresented-a-podcast-with-joe-dixon-timothy-farrell-yael-zweig/">Caring for the Unrepresented: A Podcast with Joe Dixon, Timothy Farrell, Yael Zweig</a> appeared first on <a href="https://geripal.org">A Geriatrics and Palliative Care Podcast for Every Healthcare Professional</a>. ]]></content:encoded> </item> <item> <title>#HPMParty is Back in Denver for the 2025 AAHPM-HPNA Annual Assembly</title> <link>https://geripal.org/hpmparty-is-back-in-denver-for-the-2025-aahpm-hpna-annual-assembly/</link> <dc:creator><![CDATA[Eric Widera]]></dc:creator> <pubDate>Tue, 14 Jan 2025 22:43:26 +0000</pubDate> <category><![CDATA[All Posts]]></category> <guid isPermaLink="false">https://geripal.org/?p=7029</guid> <description><![CDATA[The #HPMParty is returning to Denver during the 2025 AAHPM/HPNA Annual Assembly. We will be doing our traditional Pub Crawl, this time starting at 8 pm on Thursday, February 6th at the Celtic on the corner of 14th and Market in historic LoDo. From the Celtic, we will move on to the next location at… The post <a href="https://geripal.org/hpmparty-is-back-in-denver-for-the-2025-aahpm-hpna-annual-assembly/">#HPMParty is Back in Denver for the 2025 AAHPM-HPNA Annual Assembly</a> appeared first on <a href="https://geripal.org">A Geriatrics and Palliative Care Podcast for Every Healthcare Professional</a>. ]]></description> <content:encoded><![CDATA[The #HPMParty is returning to Denver during the 2025 AAHPM/HPNA Annual Assembly. We will be doing our traditional Pub Crawl, this time starting at 8 pm on Thursday, February 6th at <a href="https://www.celticonmarket.com/about/">the Celtic on the corner of 14th and Market in historic LoDo</a>. From the Celtic, we will move on to the next location at 10 pm-ish (location is TBD). With that said, exact times and locations are subject to change, so go to <a href="https://geripal.org/">geripal.org</a> or follow the hashtag<a href="https://twitter.com/search?f=tweets&vertical=default&q=%23HPMparty&src=typd"> #HPMparty on Twitter</a> or <a href="https://bsky.app/search?q=%23HPMparty">Bluesky</a> for updates along the way. This is not an official part of either the AAHPM or HPNA meeting, but it is a time when we can all get together for some drinks, some songs, and maybe, just maybe, some Rocky Mountain oysters. As always, please invite and bring any colleagues or new friends with you as this is not an exclusive crowd. Also, if you have trainees coming to the meeting, encourage them to come. The best networking happens when the convention center closes!   The post <a href="https://geripal.org/hpmparty-is-back-in-denver-for-the-2025-aahpm-hpna-annual-assembly/">#HPMParty is Back in Denver for the 2025 AAHPM-HPNA Annual Assembly</a> appeared first on <a href="https://geripal.org">A Geriatrics and Palliative Care Podcast for Every Healthcare Professional</a>. ]]></content:encoded> </item> <item> <title>Palliative Care for Mental Illness: A Podcast with Dani Chammas and Brent Kious</title> <link>https://geripal.org/palliative-care-for-mental-illness-a-podcast-with-dani-chammas-and-brent-kious/</link> <dc:creator><![CDATA[Alex Smith]]></dc:creator> <pubDate>Thu, 19 Dec 2024 08:00:27 +0000</pubDate> <category><![CDATA[All Posts]]></category> <category><![CDATA[Mental Health]]></category> <category><![CDATA[Palliative Care]]></category> <category><![CDATA[Podcasts]]></category> <guid isPermaLink="false">https://geripal.org/?p=7016</guid> <description><![CDATA[The post <a href="https://geripal.org/palliative-care-for-mental-illness-a-podcast-with-dani-chammas-and-brent-kious/">Palliative Care for Mental Illness: A Podcast with Dani Chammas and Brent Kious</a> appeared first on <a href="https://geripal.org">A Geriatrics and Palliative Care Podcast for Every Healthcare Professional</a>. ]]></description> <content:encoded><![CDATA[<div class="wpb-content-wrapper"><div class="vc_row wpb_row vc_row-fluid wpex-relative no-bottom-margins"><div class="wpb_column vc_column_container vc_col-sm-12"><div class="vc_column-inner"><div class="wpb_wrapper"> <div class="wpb_raw_code wpb_raw_html wpb_content_element vc_custom_1734535181698" > <div class="wpb_wrapper"> <iframe title="Libsyn Player" style="border: none" src="//html5-player.libsyn.com/embed/episode/id/34493885/height/90/theme/custom/thumbnail/yes/direction/backward/render-playlist/no/custom-color/00548f/" height="90" width="100%" scrolling="no" allowfullscreen webkitallowfullscreen mozallowfullscreen oallowfullscreen msallowfullscreen></iframe> </div> </div> <div class="vc_tta-container" data-vc-action="collapse"><div class="vc_general vc_tta vc_tta-tabs vc_tta-color-sky vc_tta-style-flat vc_tta-shape-square vc_tta-spacing-1 vc_tta-o-no-fill vc_tta-tabs-position-top vc_tta-controls-align-left"><div class="vc_tta-tabs-container"><ul class="vc_tta-tabs-list"><li class="vc_tta-tab vc_active" data-vc-tab><a href="#summary" data-vc-tabs data-vc-container=".vc_tta">Summary</a></li><li class="vc_tta-tab" data-vc-tab><a href="#transcript" data-vc-tabs data-vc-container=".vc_tta">Transcript</a></li><li class="vc_tta-tab" data-vc-tab><a href="#cme" data-vc-tabs data-vc-container=".vc_tta">CME</a></li></ul></div><div class="vc_tta-panels-container"><div class="vc_tta-panels"><div class="vc_tta-panel vc_active" id="summary" data-vc-content=".vc_tta-panel-body"><div class="vc_tta-panel-heading"><h4 class="vc_tta-panel-title"><a href="#summary" data-vc-accordion data-vc-container=".vc_tta-container">Summary</a></h4></div><div class="vc_tta-panel-body"> <div class="wpb_text_column wpb_content_element" > <div class="wpb_wrapper"> We’ve talked a lot before about integrating psychiatry into palliative care (see <a href="https://geripal.org/improving-serious-illness-communication-by-formulations/">here </a>and <a href="https://geripal.org/coping-with-serious-illness-danielle-chammas-and-amanda-moment/">here</a> for two examples). Still, we haven’t talked about integrating palliative care into psychiatry or in the care of those with severe mental illness. On this week’s podcast, we talk with two experts about palliative psychiatry. We invited <a href="https://profiles.ucsf.edu/danielle.chammas">Dani Chammas</a>, a palliative care physician and psychiatrist at UCSF (and a frequent guest to the GeriPal podcast), as well as <a href="https://healthcare.utah.edu/find-a-doctor/brent-m-kious">Brent Kious</a>, a psychiatrist at the Huntsman Mental Health Institute, focusing on the management of severe persistent mental illnesses. We discuss the following: <ul> <li style="font-weight: 400;" aria-level="1">What is Palliative Psychiatry (and how is it different from Palliative Care Psychiatry)?</li> <li style="font-weight: 400;" aria-level="1">What does it look like to take a palliative approach to severe mental illness?</li> <li style="font-weight: 400;" aria-level="1">Is “terminal” mental illness a thing?</li> <li style="font-weight: 400;" aria-level="1">Is hospice appropriate for people with serious mental illness (and does hospice have the skills to meet their needs?)</li> <li style="font-weight: 400;" aria-level="1">Controversy over Medical Aid in Dying for primary psychiatric illness (and for those with serious medical illness who have a comorbid psychiatric illness)</li> <li style="font-weight: 400;" aria-level="1">The level of provider moral distress that can be created in a system not designed to meet the needs of specific populations… and when we are asked to meet a need we don’t feel equipped to meet.</li> </ul> Here are a couple of articles if you want to do a deeper dive: <ul> <li style="font-weight: 400;" aria-level="1">Dani and colleagues article on “<a href="https://link.springer.com/article/10.1007/s40596-022-01733-x">Psychiatry and Palliative Care: Growing the Interface Through Education</a>.”</li> <li style="font-weight: 400;" aria-level="1">Dani and colleagues article on “<a href="https://link.springer.com/article/10.1007/s11920-024-01485-5">Palliative Care Psychiatry: Building Synergy Across the Spectrum</a>.”</li> <li style="font-weight: 400;" aria-level="1">Brent’s article on “<a href="https://www.tandfonline.com/doi/full/10.1080/15265161.2019.1653397">Physician Aid-in-Dying and Suicide Prevention in Psychiatry: A Moral Crisis?</a>”</li> <li style="font-weight: 400;" aria-level="1">A NY Times article titled “<a href="https://www.nytimes.com/2024/01/03/magazine/palliative-psychiatry.html">Should Patients Be Allowed to Die From Anorexia</a>?”</li> </ul>   *This episode of the GeriPal Podcast is sponsored by the Zuckerberg San Francisco General Hospital <a title="https://palliativemedicine.ucsf.edu/" href="https://palliativemedicine.ucsf.edu/" target="_blank" rel="noopener" data-saferedirecturl="https://www.google.com/url?q=https://palliativemedicine.ucsf.edu/&source=gmail&ust=1734620339339000&usg=AOvVaw3oVVDIuyPpxXkcCTkfu2P0">Division of </a>Hospital<a title="https://palliativemedicine.ucsf.edu/" href="https://palliativemedicine.ucsf.edu/" target="_blank" rel="noopener" data-saferedirecturl="https://www.google.com/url?q=https://palliativemedicine.ucsf.edu/&source=gmail&ust=1734620339339000&usg=AOvVaw3oVVDIuyPpxXkcCTkfu2P0"> Medicine</a>, which is committed to providing outstanding, compassionate care to all patients, advancing health equity, and fostering excellence in hospital medicine. They are recruiting for a Medical Director of Palliative Care Services to lead and grow innovative outpatient and inpatient palliative care programs. This is a unique opportunity to join UCSF’s vibrant and renowned faculty, teach and mentor future doctors, and make a lasting impact at one of the nation’s leading safety-net hospitals. For more details, please click <a title="https://aprecruit.ucsf.edu/JPF05313" href="https://aprecruit.ucsf.edu/JPF05313" target="_blank" rel="noopener" data-saferedirecturl="https://www.google.com/url?q=https://aprecruit.ucsf.edu/JPF05313&source=gmail&ust=1734620339339000&usg=AOvVaw224Tizm-kNy3MGFPkuJn0z">here.</a> (AP Recruit Job No. JPF05313). To learn more about the ZSFGH Division of Hospital Medicine, please click <a title="https://zsfghospitalmedicine.ucsf.edu/" href="https://zsfghospitalmedicine.ucsf.edu/" target="_blank" rel="noopener" data-saferedirecturl="https://www.google.com/url?q=https://zsfghospitalmedicine.ucsf.edu/&source=gmail&ust=1734620339339000&usg=AOvVaw0jYysGhS1xnBJQKcT0x0Cq">here</a>.   ** This podcast is not CME eligible. To learn more about CME for other GeriPal episodes, <a href="https://geripal.org/cme/">click here</a>.   <hr /> </div> </div> </div></div><div class="vc_tta-panel" id="transcript" data-vc-content=".vc_tta-panel-body"><div class="vc_tta-panel-heading"><h4 class="vc_tta-panel-title"><a href="#transcript" data-vc-accordion data-vc-container=".vc_tta-container">Transcript</a></h4></div><div class="vc_tta-panel-body"> <div class="wpb_text_column wpb_content_element" > <div class="wpb_wrapper"> Eric <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=44064">00:44</a> Welcome to the GeriPal Podcast. This is Eric Widera. Alex <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=50408">00:50</a> This is Alex Smith. Eric <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=51128">00:51</a> And Alex, who do we have with us today? Alex <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=52464">00:52</a> We are delighted to welcome first time guest Brent Kious, who is associate professor of Psychiatry at the Huntsman Mental Health Institute at the University University of Utah. He is both a psychiatrist and a philosopher. Brent, welcome to the GeriPal Podcast. Dani <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=68628">01:08</a> Thanks for having me. Really happy to be here. Alex <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=70556">01:10</a> And we’re delighted to welcome back Dani Chammas who is a palliative care psychiatrist at UCSF. Dani, welcome back. Dani <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=77084">01:17</a> Always a pleasure. Eric <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=78244">01:18</a> It’s like your 100th time, Dani, being on the podcast. Alex <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=81012">01:21</a> Something around that and not enough still. Eric <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=85980">01:25</a> When are you going to launch the Pal Y Psychs Psych Pal Y podcast. Dani <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=90380">01:30</a> The Pal. Maybe it can be a shoot off like under the umbrella of Jerry Palliative. Eric <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=94962">01:34</a> Oh, I love that. Dani <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=96026">01:36</a> More to talk about there. Eric <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=97338">01:37</a> Well, we have a lot to talk about today because today we’re going to be talking about palliative care and mental illness. But before we jump into that topic, Brent, I think you have a song request for Alex. Dani <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=108490">01:48</a> Yeah, I do. It is Only Children by the famed Americana artist Jason Isbelli. Eric <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=117442">01:57</a> And why did you pick this song? Brent? Dani <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=120096">02:00</a> Yeah, because it is, it’s a really moving song and I think relevant to the stuff we’re talking about today because it, it talks about how the problems of substance abuse and mental illness can affect a person’s life. There’s a secondary reason, which is that I play guitar a little bit too, but not nearly as well as Alex. And I definitely don’t sing as well as him. So I wanted to hear him do it so I could learn something. Dani <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=148208">02:28</a> There’s a tertiary reason too, which is that Alex said no to the first, like 10 things. Dani <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=153712">02:33</a> Brent. Alex <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=155120">02:35</a> Well, that’s because A, we’d done them or B, Dani was suggesting like three songs from Frozen 2. Unfortunately, Brent rescued me from having to do a song, Frozen 2 [laughter]. Alex <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=169600">02:49</a> (singing) Eric <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=214930">03:34</a> That was wonderful. Brent, who sings that again? Dani <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=217250">03:37</a> Jason Isbell. Alex <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=218618">03:38</a> Jason Isbell. He’s a great folk. Yeah, Americana, kind of. I think the last time we had a request was from Bob Arnold for something about vampires. Oh, yeah, yeah. Good artist. Really tasteful. Thank you. Eric <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=232578">03:52</a> Well, we got a lot to cover today. So we’re going to be talking about palliative care for individuals with mental illness. And Dani, when I think about this topic and think about what we’re going to be talking about, I see a lot and I hear a lot about integrating psychiatry into palliative care. It’s one of the core things that we think about palliative care is you got the physical, psychological, social and spiritual symptoms. So combining those things, I don’t think I see a lot about integrating palliative care into psychiatry. When you think about the word palliative psychiatry, is that what we’re talking about? Dani <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=272212">04:32</a> Yeah, it’s an important distinction and I think the evolving terms that try to get at what you’re talking about. There’s palliative care psychiatry, which you started by referencing. We’re pretty familiar with that in palliative care. That’s how do we treat the mental health needs of patients with serious medical illness? Right. Everything from normative reactions like exist anticipatory grief to comorted psychiatric illness like depression, anxiety, ptsd, which we know is really prevalent in our populations, out to sort of patients with severe psychiatric comorbidities which we probably drop the ball on more. There’s a lot of health discrepancies there and them getting high quality palliative care. But that’s palliative care psychiatry. Palliative psychiatry is a distinct idea where the focus of our palliation is the mental illness itself rather than any medical illness that’s our target. And we’re generally thinking about treatment resistant serious mental illness that we think is likely to result in a lot of morbidity and mortality when we talk about it. So in those cases, can we adopt an approach to mental health care that centers primarily around quality of life of patients and their families? Eric <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=346010">05:46</a> So I got a question. So when we think about palliating the mental illness, isn’t a lot of what we do, like when we’re treating depression, are we palliating that the symptom of that mental illness, or are we treating the disease? Or how should I think about that? Dani <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=362810">06:02</a> I might jump in there. Right. Because this is something I’ve worried about a lot as I’ve been kind of talking to people who are interested in delineating what palliative psychiatry might actually be. And yeah, there is a way in which everything we do in psychiatry is palliative with respect to the fact that it’s aimed at improving symptoms. Right. I can’t actually think of a single psychiatric illness that I can cure. I wish there was one. But what I can do is achieve enough improvement in somebody’s symptoms that we then have kind of remission of the illness from a symptomatic standpoint, even though the underlying biological stuff or the social stuff is potentially still happening. So if you think of palliative care generally as being aimed at symptom remission or improvements in quality of life or maybe improvements in functioning, I feel like kind of all psychiatry is palliative in that way. Eric <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=423794">07:03</a> Yeah, it’s hard because you can also think about it, let’s say, because we see palliative heart failure clinics. So people like palliative cardiology clinics where honestly, heart failure management is a lot of symptom management. So it’s a lot of palliation. So we hear very similar thing with that is good palliative care for heart failure, is good heart failure management of their symptoms. And how different is it for severe or refractory like depression or any of these things? Your thoughts, Dani? Dani <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=455008">07:35</a> I mean, yeah, to add, though, a little bit more nuance, the symptoms that we are choosing to target, the symptoms that we’re choosing to decrease in psychiatry, tend to be decided upon by us as the providers. Right. And so I think there’s this one way where if we added palliative care philosophies to all of psychiatry alongside the standard of care, that could be beautiful for everybody because we’re going to take in the patient’s perspective maybe more than we were trained to. I think it gets more controversial though, whether are some places where it does become a trade off that people are conceptualizing a trade off between the standard of care and a more palliative approach. And like you said, it’s very hard to define the lines of this. We don’t have a way of operationalizing which patients qualify. It’s incredibly difficult to prognosticate in psychiatry. Lack of response in the past doesn’t predict lack of response in the future. So we definitely don’t want to use this concept to warp it, to inappropriately justify non treatment or abandonment or letting off the hook a system that isn’t great always at meeting people’s needs because this is a really vulnerable patient population. But there is a place where, you know, maybe hearing less voices isn’t what’s most important to my patient. Maybe what’s most important to them is not being in a hospital or being employed or staying at home. And that is somewhat of a shift from how we are classically trained to decide which symptoms we focus on in psychiatry. So this kind of a yes and answer. Alex <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=547016">09:07</a> Yeah. Dani <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=547816">09:07</a> I was going to ask Dani, you know, what if we incorporated recovery principles into the practice of psychiatry? Eric <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=558456">09:18</a> Right. Dani <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=558656">09:18</a> Where we really center the patient’s values and their goals of treatment. I think that muddies the distinction between ordinary psychiatry and palliative psychiatry even more. Dani <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=570872">09:30</a> Yeah, absolutely. And so I do think that in. In the places where we can just synergize the two. Like I just, I got a grant from ABPN to start teaching primary practitioners from whom the ABP American Board of Psychiatry and Neurology. It’s like our abim, but to have a palliative care curriculum for psychiatrists. This is one of our recognized subspecialties. So in ways that we can teach this to psychiatrists so they can synergize these principles, that substance. Wonderful. When we get closer to the extremes where it becomes a trade off, do we want to keep treating people in our customary ways or not? Well, then I think there’s a lot of work to do to create models to operationalize what we’re talking about, to have safeguards in place to try to help people but also protect people. Eric <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=614254">10:14</a> Well, can I start off with easy stuff? Like what? What would be integrating palliative care principles into psychiatry? What does that look like? Dani <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=622870">10:22</a> I’ll take a stab at it. I mean, I think one thing that people who are grappling with this issue have proposed is just a much greater emphasis on harm reduction and stopping unhelpful treatments. So the unfortunate reality is that a lot of the time if you have treatment resistant depression or treatment resistant schizophrenia or anorexia, and you come to see a psychiatrist even though you’ve done everything already, they’re going to say, well, let’s just try that again, or try something that’s very similar to that. And maybe adopting a more palliative orientation would mean a lot of the time saying, we’ve tried all that stuff and there’s not a lot of point in doing it. Again, what we should focus on is improving your quality of life and maybe non medical ways. Eric <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=681340">11:21</a> Yeah, I guess this is the question is, does trying to focus on that mental health disorder and trying to treat that mental health disorder, does that improve quality of life, though? Dani <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=692892">11:32</a> So here’s something I’ll say though, is that I think there’s some implicit bias that goes on with psychiatric illness, not us having issues. But if I were to have posed that question to you in the medical. Yeah, you would have been like, well, every patient is different. We take the time to understand what quality of life means to them. We take the time to understand their goals, their ethos, their treatment history. And then we make these decisions based on our knowledge of their illness paired with our knowledge of them. And something happens when there’s like psychiatric illness, which is a ton of different illnesses. Right. That we sort of distill it to this one thing that is psychiatric illness. Eric <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=731662">12:11</a> And we consult psychiatry. Dani <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=733398">12:13</a> Yeah, like, exactly. And so, yeah, for some people, decreasing symptoms, if we can, is really helpful. For some people, it would be really helpful, and we can’t. So can we think of other things that we can do to them that’s a very palliative or do for them That’s a very palliative question. And for other people, they might come to me and say, you know, I’ve been on this medication. Sure, I’m hearing less voices, but I feel like a zombie. I can’t relate to people. I’m tired all the time. Like, give me my voices back over this. Right. Eric <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=765440">12:45</a> And honestly, it doesn’t feel that much different. Again, going back to the heart failure example, we have people who their number one symptom may be, I can’t go to the bathroom this much. I gotta get some sleep. I gotta think about changing these meds. So it could be about focusing on underlying disease like the heart failure, or it could be focusing on more managing the symptom. Like if they’re dyspnea, you’re kind of maxed out on the diuretics, maybe considering things like opioids. Am I thinking about it correctly? Yeah, I mean, reasonable analogy. Dani <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=801076">13:21</a> I think the trickier thing that comes up, and I would love to hear Brent’s thoughts, but the trickier thing that comes up in psychiatry is, number one, our prognostication isn’t as solid as it is in medical things. So it’s harder for me to say, like, this person might not get a lot better if I let them forego this with heart failure, you know, how good it might get in general. And number two is there’s always this question about capacity in the setting of psychiatry. And some people will have decision making capacity, some won’t. But when we say there’s not an algorithm, the compass is determined by the patient. Well, what does that mean for a patient who doesn’t have decision making capacity? Eric <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=839478">13:59</a> So the depression, the bipolar disease could be impacting somebody’s ability to make an autonomous medical decision. So the. As opposed to like heart failure, unless they’re delirious, doesn’t really affect their decision making capacity. Again, unless they’re delirious, like here, the disease actually can’t. Dani <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=857736">14:17</a> Yeah, Brent, go ahead, Brad. Dani <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=859848">14:19</a> I want to insert something there about capacity, though, and I’m sure that all of you are ultimately aware of this. A person with bipolar disorder in a manic episode or a severe psychotic episode in schizophrenia might still have capacity to make a lot of different decisions. Eric <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=878194">14:38</a> Yeah. Dani <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=879090">14:39</a> So it really depends on how their illness and the particular impairments that are associated with it bear on their decision making. I mean, we, we frequently admit people with severe psychosis to our inpatient hospital on a voluntary basis and we have detailed discussions with them about the risks and benefits of treatment and they decide what they want. Right. Dani <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=902260">15:02</a> Speaking to the fact that we are talking about such a massive array of illnesses, of presentations of symptom severity, and trying to speak in generalizations. Right. Which is so hard to do because it’s really hard. Alex <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=915428">15:15</a> I think the capacity issue comes to a head in particular when you’re talking about the desire to die and, or the expressed wish or expressions of, you know, suicidal ideation is the formal term. Is that right. When you’re talking about palliative care and psychiatry. Dani <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=930476">15:30</a> I think, I mean, I think really anything that is a choice like hospice or an express like hastened wish to death. And we’re always thinking about capacity, but the wish for hastened death is a really interesting one because there’s so many considerations. There’s the legality, there’s the morals of ourselves and our patients, then there’s the ethics, and they’re not always aligned. Depending on your geography, who you are as an individual, the ethical parameter you’re considering. So here in California, if somebody uses end of life options, wants to die, and I’m doing their mental health assessment, I do have to make sure that they have decision making capacity. That’s a hard barrier which has a clear definition and has really big implications for access to maid for people with dementia or serious mental illness without Capacity. But the other piece of our law says that the patient must not be suffering from impaired judgment due to a mental disorder. That’s a tricky one. Right. So having depression isn’t going to be a contraindication to me that you might still be able to get it. But the law does expect me to assess if their request whether or not it’s primarily driven by an untreated or an unmanaged mental health condition. And it’s not straightforward. That’s a really hard thing for me to assess. We know that the frequency of psychiatric symptoms is higher in people who make these requests, but we also know that when we treat the mental health condition, sometimes the request resolves, sometimes the request doesn’t resolve. So there’s a lot of subjectivity there. And even to add to the nuance, what if I do think that it is motivated by a primary mental health condition, but I don’t think there’s a good chance that that mental health condition is going to resolve before they die. Alex <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=1035890">17:15</a> Yeah. Brent, you thought quite a bit about this. What are your thoughts? Dani <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=1039498">17:19</a> Yeah, I mean, I would add to what Dani has said, which I think is entirely right, that this becomes especially hard when we talk about people with severe and treatment refractory psychiatric conditions that are often marked by suicidal ideation. So if someone with major depressive disorder, where suicidal ideation has been a long standing symptom for them, or somebody with borderline personality disorder, those are conditions where people have in fact received medical aid and dying, or other kinds of palliative death hastening interventions. I have a kind of philosophical stance on this, which is something like this. People want to ask, is the suicidal ideation the desire to die due to the illness, or is it the authentic wish of the person? I think that is a nonsense question. So I’m just going to say that. Alex <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=1096962">18:16</a> Yeah, yeah. Dani <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=1097882">18:17</a> And the reason I think it’s a nonsense question is that I don’t really think that we have any way of establishing authenticity. And especially hard cases where somebody has had very long standing desires. Because the usual things we would think about is marking authenticity, like a change in what you want that seems sudden or inexplicable just don’t really apply. So I think what we ought to ask in these situations is does the person’s desire to die make sense to us? And in a lot of the cases Dani’s talking about where maybe somebody is asking for medical aid and dying for their cancer, but they also have depression if we treat the depression, and their outlook on life changes a lot and they’re not interested in dying anymore. That’s a case where their requested die doesn’t really make sense in some fundamental way. They still have good reasons for going on, probably, but where that wish is persistent. I feel like we can also often understand where the wish is coming from, given what’s happening with the patient. Alex <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=1165300">19:25</a> I do want to stick with this topic and I also want to acknowledge that interest in your thoughts on this. My read is that the biggest issues in palliative care and psychiatry are really sort of the first things that we’ve talked about. People who have serious medical illness and have psychiatric complications as a result, or people who have coexisting psychiatric illness and serious medical illness and that this issue of maid sort of brings things. It’s interesting to talk about for a variety of reasons. It’s the fringe, but it is not the major issue which, by which, you know, the flags, tent pole issue I think is the phrase, you know, by which we should be organizing like palliative care, psychiatry around. Is that fair to say? Dani <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=1214760">20:14</a> Or what, you know, what do you think important though? Because I actually think we get a ton of requests for hasten death and we are still working on how to best understand like where it’s coming from. And there’s a lot of non controversial waters that come before made that we can think about. I think the other piece is that different countries, different states, they don’t have the same requirements that we have. Right. And who’s making these decisions? Some people don’t. In Canada, as long as you have a terminal illness, it doesn’t matter if your depression was driving the request. Right. And so some of us are more driven by the doing no harm, others more driven by autonomy and justice. And I think it puts us as humans in the provider role in a really difficult spot trying to reconcile the care that we’re giving and trying to figure out what is appropriate. And you’re right, it is on a continuum because how about dnr, dni? If somebody is very depressed and suicidal, are they allowed to say that they want to be dnrd? And I, we let them. But what if a few rounds of ECT later, they wouldn’t want that. And you know, in the interim they code. Eric <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=1285650">21:25</a> Yeah. Dani <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=1286378">21:26</a> I’ll just note in our hospital we don’t always let people who have been suicidal recently. This is a psychiatric hospital, of course, be dnr, dni. Right. So our policy is that that’s not necessarily guaranteed. Eric <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=1301420">21:41</a> Yeah, it’s a struggle because like it gets to this question would oh, what if people would Change their mind in the future if we just did. X. Right. So if you talk to somebody and they adamantly don’t want an amputation and you’re all, you’re going to get it. Because I know the data would suggest people’s quality of life is generally viewed better post amputation than people think it’s going to be pre amputation. So we’re just going to do this to you because we know better. Is that that different than this? Dani <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=1332750">22:12</a> Different than potentially allowing somebody who has a serious psychiatric condition to access medical aid and dying, you mean? Eric <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=1341758">22:21</a> No, this idea that like if we just convince them to or if we just forcibly did something to them and their idea, their, their thoughts on this subject would change post, post intervention, post psychiatric treatment because, you know, their long standing chronic depression, this hope that it’s going to get better. Dani <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=1364340">22:44</a> I think the difficult part here when we’re talking about decision making and judgment in the setting of mental illness being the target is that it’s quite possible that someone has capacity. But it’s very hard to say that mental illness isn’t impacting people’s judgment, people’s outlook. It’s different than having like a leg issue. But being fully like you’re, the way you’re viewing the world is still consistent to who you are versus being an episode of depression where there’s a complete lens on your view of the world that can go away. It makes it really hard. And I think what we’re all struggling with here is like this is very gray territory. Right. We want clear boundaries and clear definitions and we try to impose them. But like, where does somebody’s mental illness and somebody’s personhood, like, what’s the line between those two? What if you’ve been depressed your whole life? Like, is it a part of your personhood? Like it doesn’t all fit into these very clear separations. Alex <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=1420690">23:40</a> Yeah. Just to build on that and then we’ll go to Brent on this. One of the reasons that this issue of medical aid and dying for people who have severe psychiatric illness is so interesting is because of the issues that come to bear and the challenge, the competing ethical concerns that arise in these situations. And I’d add one more to the mix, which is, you know, we have a friend who evaluated somebody for medical aid and dying and felt seriously moral distress about this request. And this is a person who had serious refractory mental illness, been treated for years, decades, and just didn’t feel like they could, this provider could sleep at night if they were to prescribe medical aid. And dying because they would feel like they were killing this person and not to helping that patient to gain control over the inevitable end of their life. So that moral distress is yet another factor that comes up for the providers. And Dani, I think you do some evaluations that may have come up for you as well. But Brent, I want to go to you on this for further thoughts. Dani <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=1486000">24:46</a> So, you know, one thing I wanted to say in response to something Eric said earlier is there’s a way in which psychiatry is often in the business of making people do things that we think are going to help them feel better in the long run. Yeah, it’s. It’s a little less common in California than it is in Utah, but we, we treat a fair number of our patients involuntarily, and some of the time they thank us for it afterwards. Not always. Yeah, I think when we’re talking about the palliative realm in psychiatry, though, those kinds of considerations aren’t really on the table because we’re talking about people for whom typical involuntary treatments are very, very unlikely to be helpful anyway because they haven’t helped so far. Alex <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=1534740">25:34</a> They’ve often received years, if not decades of treatment. Dani <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=1537948">25:37</a> Yeah, yeah. Dani <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=1539420">25:39</a> I have a thought on the moral distress, but I also feel like we’re pulling ourselves into like this idea of terminal mental illness. Is that actually a thing? Alex <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=1546292">25:46</a> Yes. Eric <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=1546780">25:46</a> We should talk about that too, that question. Dani <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=1549252">25:49</a> Okay, well, let me just quickly take a question about moral distress. I want to expand it from just the maid area. I think it’s very present in maid. I think it’s present in this whole entire array where we are left as providers grappling with, you know, did I try enough things for this person? Has society failed to reach this person’s needs? Are there restrictions that are making me not give this person some kind of peace, that I give that option to other people? What if there’s a clinician out there that’s better equipped or trained than I am to tend to this person? Not long ago, I was attending on an inpatient psych unit, straight psychiatry. And there was a patient, she was incredibly psychotic and she was lying on a bed in the corner of a room completely alone, moaning with pain from her. And it was heartbreaking to witness. And I remember the on call resident had this huge wave of relief when he found out that I was palliative care trained because he didn’t have to grapple with the fact that he was watching in distress that he didn’t feel totally equipped to address. So there’s examples across the board where Providers have moral distress. We haven’t thought through a lot of these oversellies. Eric <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=1624124">27:04</a> Yeah, yeah, I guess, you know, another source of moral distress is going to this question, is this person really dying? Do they have a terminal illness from this depression, from this anorexia, from this bipolar disease? Alex <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=1642014">27:22</a> This gets the question, is this a thing, terminal mental illness? Eric <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=1645774">27:25</a> Because I do think I’ve actually had patients like this really bad depression, refractory. And the question is hospice comes up and I have to think like wait, does this person meet the prognostic requirement that we used called terminal in hospice? Which is very quick, clearly labeled six months or less. Alex <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=1666054">27:46</a> And there are a couple cases that we can talk about because they’ve been in the lay press. There’s a Boguts case, a patient with anorexia who utilized medical aid and dying. And there’s another case, a woman named Naomi was in the New York Times. We’ll have links to those cases in our show notes. Naomi also had anorexia and they both in both cases decades of treatment. Eric <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=1685514">28:05</a> So like in cancer we could say pull up studies like this person has metastatic pancreatic cancer, like 99.9% sure. Dani <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=1694514">28:14</a> Can we go first or second? Dani <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=1696610">28:16</a> I’ve got thoughts, I’ve got thoughts. Maybe I’ll jump in. I mean I think that the idea of terminal mental illness is a medico legal nicety that allows us or allows some psychiatrist or physicians to provide medical aid in dying to persons with severe and treatment refractory mental illness. Because it’s very clear even in the cases like Boguettes, the illness is not terminal in the way pancreatic cancer is. Terminal pancreatic cancer is going to kill you. Regardless of what we do. Even with the best and most sophisticated medical interventions, death is going to happen relatively soon. And with anorexia nervosa, that’s really not the case even in the most treatment refractory cases because providing nutrition is always going to be an option. So I feel like that’s kind of a red herring. And is it though? Eric <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=1756960">29:16</a> Because you could have somebody with, you know, pancreatic cancer hasn’t been treated yet, decides they don’t want treatment. Their prognosis without treatment is less than six months. But if they got treatment, it could be more. Dani <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=1770240">29:30</a> Yeah, but right. And so I think this, this gets to the really critical issue. We, we look at that person with pancreatic cancer who as a prognosis less than six months because they’ve decided not to get treatment. And the reason we’re comfortable saying they have terminal Illness, I think, is that we can understand why they would make the choice they had made. Treatment would buy them a couple of extra months, but they’d be painful, uncomfortable, et cetera. It’s very reasonable for them to say, I’d like to forego treatment, even if that means a little less life. Eric <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=1805664">30:05</a> Yeah. Dani <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=1806432">30:06</a> And I think that’s the same standard we should apply to psychiatric illness without use of the word terminal, which is just obscuring things. Right. What we really ought to ask is, are things going badly enough for you, given all the interventions that you have tried, and how likely any additional interventions would be to help you that your wish to receive something like medical aid and dying or palliative sedation or to use VSED makes sense. Dani <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=1836860">30:36</a> Although I would say, Brent, I’m with you. And I do think that some people would understand why Alyssa made the request that she did. Eric <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=1848916">30:48</a> And we’ll have links to that in our show notes. So if you’re interested in reading, again. Alex <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=1852540">30:52</a> It’s in the lay press, you can read about it. This is not revealing anything. Dani <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=1855652">30:55</a> Yeah. But what I want to add to this terminal mental illness thing, because I think it’s getting a lot of traction and excitement, and this is such a fraught term. It’s so controversial in ways that are hard to reconcile. There are some people who feel incredibly strongly that it should not be used. It’s an inappropriate term. And I was even nervous to talk on this podcast today because I know it’s going to elicit strong and very valid feelings in some people. But some of the nuance I would want to point out is that, like Brent mentioned, first of all, this is not a diagnosis. It’s not a defined entity in the dsm. It’s not something that we have, you know, statistics or anything around. When people talk about terminal mental illness, it’s very different than how we use the word terminal in medical illness. And I think they generally do really mean patients with serious mental illness for whom the treatments we have available are unable to, we think, ever help them achieve meaningful quality of life or symptom control. And there are two deeply important perspectives here. On the one hand, we don’t have an empiric way to classify what’s an untreatable mental illness. Again, some people don’t respond for years and then do when we try something else. And in this really vulnerable population, we don’t want to disenfranchise people from treatment. That might make a difference in psychiatry. References we often have seen times when a patient says, I don’t want treatment, and we compel them to get it, and then they profoundly improved. So we never. There’s a risk to labeling somebody’s mental illness untreatable. And on the other hand, in psychiatry, we’ve also seen some people who get treatment their whole life but continue to suffer unrelentingly. So this other very valid perspective is to say we don’t want people to suffer if we don’t have the tools to help them. Reflectory illness can be so impactful on quality of life. And that can get compounded if we’re compelling people to have treatments that they may experience as harmful or as traumatizing without necessarily having benefits. So I think the philosophical debate is really around the concept of untreatable mental illness. Is there untreatable mental illness? And if it is, how do we know that it is? And that’s not an empirically answered question at that point. I don’t even know if it’s an empirically answerable question. Alex <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=1991960">33:11</a> Eric, you’ve thought about sort of different standards and you wrote, I think with Josh Briscoe in response to a piece by. Was it Thaddeus Pope about Vsed jag’s. Eric <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=2003618">33:23</a> Article on Thaddeus Pope. Alex <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=2005666">33:25</a> And we were actually going to have Thaddeus on. And you can talk. And with Josh, it’s good because I. Eric <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=2010522">33:30</a> Don’T remember what I wrote. Alex <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=2011362">33:31</a> Right, right. I’m going to ask you about it anyway. But I think in response you wrote something that is applicable here and that is about the standards by which we should allow somebody to be eligible for medical aid in dying. And you wrote about. You notice that in the terminology in all statutes across in the United States, at least in the state statutes, they include the words irreversible and incurable. Incurable. Could you say more about that in relation to. Eric <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=2043428">34:03</a> Yeah, I mean, I think it gets to this question about. Brendan, I forgot what you called it, like medical legal nicety around terminal illness. But it’s more than that. It’s part of the law. Like if you were going to follow the law of medical aid and dying that somebody has to have an incurable irreversible illness and a prognosis of less than six months. And the question is, does if you were just not arguing it, whether or not that’s the right thing, they did a whole other podcast folks in Canada where it’s moved away from that. But if you were going to follow the law, does any mental serious mental health illness, can we ever claim that. Dani <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=2089040">34:49</a> That there would be a psychiatric illness where, regardless of what we do, the prognosis is less than six months. Eric <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=2096864">34:56</a> Yeah, I hear that potentially that we can say it’s maybe irreversible or incurable. We’ve tried everything probably to a similar extent that that’s the case for other medical illnesses, ALS or different kinds of cancer. But can we say, oh, yeah, it’s less than six months? Dani <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=2116550">35:16</a> I’d be curious to hear what Dani has to say about this, but I really don’t think so. In the absence of some significant somatic medical comorbidities, I don’t think that psychiatric illnesses typically produce death directly. Eric <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=2131518">35:31</a> Yeah. Dani <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=2132174">35:32</a> If we do all the things that we could do to provide care for the patient’s basic needs. Right. I mean, if somebody has really bad depression and they stop eating and nobody bothers to feed them or make sure that they eat, then, yeah, they could die. But that’s not really just the depression. It’s a lot of other things that are happening too. Eric <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=2153742">35:53</a> Yeah. Dani <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=2154502">35:54</a> Dani, I was really happy you asked Brent that question. Alex <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=2161630">36:01</a> That’s your answer. Dani <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=2164910">36:04</a> I generally agree that there’s not a psychiatric illness, that if we did nothing, that a person would die within six months. It’s just, how far will we go? Like, if there’s somebody with anorexia who’s not going to eat, are we okay keeping them hospitalized against their will in perpetuity with feeding tubes, getting nutrition into their bodies? What. What are we willing to do to a person against their will if they truly don’t want it and they truly not are refractory? Where is that limit? But from the legality perspective, the strict legality perspective, it’s hard for me to conceptualize any mental illness that I could say, without treatment, you would die within six months from. Alex <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=2212082">36:52</a> Yeah. So I think we can all agree that. Absolutely. People with maybe we could call it something like severe refractory mental illness to avoid the term terminal and characterize it more by its lack of response to treatment. People with severe refractory mental illness should have the option of having a palliative approach to treatment. In fact, most of their treatment is palliative by nature. And that two, there are patients with severe refractory mental illness who might be eligible for hospice. They might have a condition which is likely to result in death within six months if the disease takes its usual course. But they don’t meet the definition for medical aid in dying, which requires that you have an incurable, irreversible. Right. Much stronger language here and are able to consent. Right. In Hospice, you don’t have to consent. You can have a surrogate decision maker make the decision for you. You cannot do that for medical aid and dying. So that we can and should have different layers of eligibility for these different services. Palliative care, much lower bar. Hospice, higher bar. Medical aid and dying, much higher bar. Eric <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=2286024">38:06</a> I said that in my article. I sound smart. Alex <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=2288432">38:08</a> Yeah, it’s good. Dani <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=2290120">38:10</a> I’m smart, guys. And this is like where the Alyssa Boguette educational fund that we have at HPM came from, Right. She did elect to go into hospice because she did not want more suffering, more treatment for her anorexia. And the family found that the hospice providers were very kind and very thoughtful, but they didn’t feel like they had the skills or the nuance to tend to what she and the family needed psychologically to understand this construct of the fact that her death was secondary to her really severe mental illness. And I think that that totally highlights the impact of siloing. Right. Psychiatry and palliative care have so much pertinence to each other, but they’re often incredibly siloed from each other. And there isn’t as much collaboration as you would think. And palliative care is a psychiatric subspecialty. And so why are we not educating psychiatrists and palliative care. Why are we not educated palliative care doctors in psychiatry? And why have we not built systems that bring those silos together so that this really huge need can be better tended to in people? Dani <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=2361320">39:21</a> I’m convinced. Dani. I want to go do my palliative medicine fellowship now. I can’t. I can’t. My wife won’t let me. Alex <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=2369688">39:29</a> Yeah. Dani <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=2373800">39:33</a> I love it. Eric <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=2375400">39:35</a> I’m going to go back to the initial question. I know we still a lot to cover, but, like, what does that actually look like? What does. Because I think we asked this in the beginning. We just touched upon it. What does that palliative approach to these serious mental illness? What are the things that you’re trying to teach? Alex <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=2392650">39:52</a> What’s in the curriculum that you’re developing for the American Board of Psychiatric Something or other? Dani <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=2398746">39:58</a> I’ll tell you once I’ve developed it. Alex <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=2402170">40:02</a> That’s a good. That’s fair. Dani <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=2403498">40:03</a> That’s fair. Dani <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=2404010">40:04</a> It’s such a spectrum, right? Like, it’s. It’s crazy what a big thing we’re talking about, because I think that psychiatrists need bread and butter, palliative care. We know people with serious mental illness are not getting palliative care, so they need the primary palliative care. Just like the goals of Care and those types need to be there. We know that they might be the people giving primary palliative care. And then it’s all the way to the extreme though of like what hospice team do you know of has been taught how to manage someone who’s psychotic in a way that’s going to feel calming to them or how to manage somebody who has a really severe personality disorder that’s getting completely triggered in their death and their loss of control in a way that might be containing to them. And so it’s really all the way from what psychiatrists are doing with their patients to what we’re doing with our patients, because nothing fits particularly into a box. Alex <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=2457176">40:57</a> Yeah. And I’ll say we were clinically at the VA doing inpatient palliative care consults. I would say I’m interested in whether you think this is accurate. Like 80 to 90% of patients we see have a psychiatric diagnosis. These are people with serious mental illness. Yeah. Ptsd, depression, anxiety. Very, very common. Or even if it’s not a formal diagnosis, they have depressive symptoms or anxious symptoms. They have demoralization. All of these things are incredibly common. And they’re issues that we rely on our interdisciplinary team to help us with. You know, and I think that’s okay. But a lot of people out there who are working without the benefits of an interdisciplinary team, they don’t like. We don’t have a psychiatrist on our team, for example. We have psychologists, we have social worker who’s very attuned to these issues. We do not have a psychiatrist, but we have consultants. Eric <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=2512572">41:52</a> We have psychiatrists, not palliative care psychiatrists. Did I get that right, Dani? Yeah, palliative care psychiatrists, not palliative psychiatrists. Dani <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=2522528">42:02</a> I mean, these are, I love it. These are evolving terms. None of these are in a textbook somewhere, but this is. You’re. You’re witnessing us trying to organize around a really last need. And yes, so what? You don’t have a palliative care psychiatrist there. And most psychiatry units don’t have a palliative psychiatrist. Yeah. And there are, there’s low hanging fruit of, you know, why would a palliative care fellow not do a psychiatry rotation if you, if we’re all agreeing that the majority of our patients have these struggles, why would a psychiatrist not do a palliative care rotation if it’s a recognized psychiatric subspecialty? Those are in my mind, the lower hanging fruits. And then just systematic. Can we. Eric <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=2568450">42:48</a> But it is different for the, I mean, I can see the psychiatrist doing palliative Care rotation. But really for the palliative care fellow, what you’re interested in is doing, is in a palliative psychiatry rotation, it’s not just doing a psychiatry rotation, but doing the thing in the subspecialty that you’re interested in. It’s like you’re not just going to send them to a cards clinic, you’re going to send them to maybe a pallet of cardiology clinic. Dani <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=2594640">43:14</a> Yes. And the moment that we have evolved enough since like to all have palliative care psychiatry clinics and palliative. Are there any palliative care psychiatry clinics? Yes, I think psycho onc is really a form of a palliative care psychiatric clinic. Right. But that’s specific to cancer center. Dan Shalev, for example, is at Cornell as now a pilot where he has. He’s trained in psychiatry and palliative care. He has embedded clinics within palliative care, larger palliative care clinics where he tends to the psychiatric needs of the palliative care population. Eric <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=2627174">43:47</a> The population that we’re talking about for this podcast, people with serious mental illness. Are there palliative care clinics for them? Dani <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=2634078">43:54</a> No, it doesn’t. I mean, there are some amazing providers out there who are integrating these philosophies in what they do face a lot. But no, it doesn’t exist. Dani <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=2643446">44:03</a> Yeah, I don’t actually think that there are any people out there. Maybe there are some internationally that I don’t know who are practicing palliative psychiatry is the bulk of what they do clinically. Maybe all of us are to some extent doing some palliative interventions in our ordinary psychiatric practice. I hope so. Eric <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=2665368">44:25</a> Yeah. That primary palliative care in psychiatry versus, like the specialty palliative care in psychiatry. Dani <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=2671496">44:31</a> Right. Dani <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=2672194">44:32</a> And I think we need to start like labeling, though. I think you’re right. Like, what would. Brent, what would the impact be if we labeled some of the things that we’re doing as palliative just in terms of our mindset of understanding when why we’re doing what we’re doing? Dani <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=2684770">44:44</a> See, I think that that is a really hard question and actually needs some research because, you know, on the one hand, there could be a real rhetorical benefit from doing that. Right. Because it would change the way we think about what we’re doing in much the way that like maybe talking about the recovery model can help reorient people’s goals and the way they’re approaching. Eric <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=2712174">45:12</a> This is the second time I heard the recovery model. Real quick, what is the recovery model, if you can do it in a. Dani <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=2717318">45:17</a> Recovery model, is something that’s been around for decades now where basically recovery is defined as working towards the patient’s self defined goals with the support of often a multidisciplinary treatment team. So recovery for one person might mean I was able to get a job and recovery for another person might mean my depression was reduced by 50%. Eric <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=2745782">45:45</a> Right. Dani <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=2746070">45:46</a> So it’s just a very patient centric approach to psychiatric care and mental health care generally. Alex <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=2751790">45:51</a> Yeah, I think these terms are really important and that there’s a risk. Right. Like we’ve done some beating up on the term palliative chemotherapy, you know, on the When We Were blog and then sometimes on the podcast. You know, on the one hand it has the potential to like help people think about care in terms of the patient’s goals. On the other hand, it may dilute what palliative care means. Eric <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=2778098">46:18</a> Like I would argue though, it does not have, has nothing to do with patients goals because when people use it, it just means non curative chemotherapy. Alex <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=2786672">46:26</a> Exactly. Eric <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=2787088">46:27</a> It’s like using palliative care for a psychiatry. It’s just non curative psychiatry. Alex <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=2793184">46:33</a> Everything there. Eric <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=2793928">46:33</a> Yeah. Dani <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=2794784">46:34</a> One closing thought. I’m trying to put myself in the, the mindset of the people who are listening to this podcast out there. Thank you for listening if you did. But it might feel like we posed more questions than gave answers, you know, and that we were going around. And if it, if it feels like that to you, if you feel like your clarity is less, I would say that that’s success, that that’s a good thing. Because these are not easy questions. If they were, we would have them answered. I think we really need to spend a lot more time pondering the gray, breaking down the silos so that the expertise. We don’t even have an eating disorder specialist here today. Right. So the expertise can come together. Increasing our education for the sake of our patients, for the sake of ourselves. So thanks for being in the gray with us all. Eric <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=2838550">47:18</a> I love that. Brett, any other closing thoughts for you as far as where you see this all going? Dani <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=2844406">47:24</a> I just totally agree with what Dani said. I think that these are really complicated issues and I just have to acknowledge that I always kind of find myself wanting to sit on the fence. You know, I think there’s a lot of things you can say in favor of palliative psychiatry or medical aid and dying for psychiatric illness. But a lot of things about both of those topics that really give me pause, which would really make me worried about, you know, bringing medical aid and dying to my patients, for example. Eric <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=2878160">47:58</a> Well, Brent and Dani, I want to thank you both for being on this podcast. But before we end is the song Only Children? Yes, Only children – Cold Coffee on the Fire. Alex <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=2888194">48:08</a> (singing) Eric <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=2933340">48:53</a> Dani and Brent, thanks for joining us on this podcast. Dani <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=2937598">48:57</a> Thanks for having us. Awesome. Brent Thank you. Eric <a style="color: #000000;" href="https://grain.com/share/recording/c88c7c43-b9f3-4ccc-bf8f-3ae804745f99/bcPq3CysokWbtzeo8wfHNVmCISrDtDfkTm0VDB7h?referrer=docx&t=2938966">48:58</a> And to all of our listeners, thank you for your continued support. </div> </div> </div></div><div class="vc_tta-panel" id="cme" data-vc-content=".vc_tta-panel-body"><div class="vc_tta-panel-heading"><h4 class="vc_tta-panel-title"><a href="#cme" data-vc-accordion data-vc-container=".vc_tta-container">CME</a></h4></div><div class="vc_tta-panel-body"> <div class="wpb_text_column wpb_content_element" > <div class="wpb_wrapper"> <h3>This episode is not CME eligible.</h3> </div> </div> </div></div></div></div></div></div></div></div></div></div> </div>The post <a href="https://geripal.org/palliative-care-for-mental-illness-a-podcast-with-dani-chammas-and-brent-kious/">Palliative Care for Mental Illness: A Podcast with Dani Chammas and Brent Kious</a> appeared first on <a href="https://geripal.org">A Geriatrics and Palliative Care Podcast for Every Healthcare Professional</a>. ]]></content:encoded> </item> <item> <title>AI for Surrogate Decision Making?!? Dave Wendler, Jenny Blumenthal-Barby, Teva Brender</title> <link>https://geripal.org/ai-for-surrogate-decision-making-dave-wendler-jenny-blumenthal-barby-teva-brender/</link> <dc:creator><![CDATA[Alex Smith]]></dc:creator> <pubDate>Thu, 12 Dec 2024 08:00:51 +0000</pubDate> <category><![CDATA[Advocacy]]></category> <category><![CDATA[All Posts]]></category> <category><![CDATA[Decision Making]]></category> <category><![CDATA[CME Eligible]]></category> <category><![CDATA[Podcasts]]></category> <guid isPermaLink="false">https://geripal.org/?p=6998</guid> <description><![CDATA[The post <a href="https://geripal.org/ai-for-surrogate-decision-making-dave-wendler-jenny-blumenthal-barby-teva-brender/">AI for Surrogate Decision Making?!? Dave Wendler, Jenny Blumenthal-Barby, Teva Brender</a> appeared first on <a href="https://geripal.org">A Geriatrics and Palliative Care Podcast for Every Healthcare Professional</a>. ]]></description> <content:encoded><![CDATA[<div class="wpb-content-wrapper"><div class="vc_row wpb_row vc_row-fluid wpex-relative no-bottom-margins"><div class="wpb_column vc_column_container vc_col-sm-12"><div class="vc_column-inner"><div class="wpb_wrapper"> <div class="wpb_raw_code wpb_raw_html wpb_content_element vc_custom_1733959956338" > <div class="wpb_wrapper"> <iframe title="Libsyn Player" style="border: none" src="//html5-player.libsyn.com/embed/episode/id/34404080/height/90/theme/custom/thumbnail/yes/direction/backward/render-playlist/no/custom-color/00548f/" height="90" width="100%" scrolling="no" allowfullscreen webkitallowfullscreen mozallowfullscreen oallowfullscreen msallowfullscreen></iframe> </div> </div> <div class="vc_tta-container" data-vc-action="collapse"><div class="vc_general vc_tta vc_tta-tabs vc_tta-color-sky vc_tta-style-flat vc_tta-shape-square vc_tta-spacing-1 vc_tta-o-no-fill vc_tta-tabs-position-top vc_tta-controls-align-left"><div class="vc_tta-tabs-container"><ul class="vc_tta-tabs-list"><li class="vc_tta-tab vc_active" data-vc-tab><a href="#summary" data-vc-tabs data-vc-container=".vc_tta">Summary</a></li><li class="vc_tta-tab" data-vc-tab><a href="#transcript" data-vc-tabs data-vc-container=".vc_tta">Transcript</a></li><li class="vc_tta-tab" data-vc-tab><a href="#cme" data-vc-tabs data-vc-container=".vc_tta">CME</a></li></ul></div><div class="vc_tta-panels-container"><div class="vc_tta-panels"><div class="vc_tta-panel vc_active" id="summary" data-vc-content=".vc_tta-panel-body"><div class="vc_tta-panel-heading"><h4 class="vc_tta-panel-title"><a href="#summary" data-vc-accordion data-vc-container=".vc_tta-container">Summary</a></h4></div><div class="vc_tta-panel-body"> <div class="wpb_text_column wpb_content_element" > <div class="wpb_wrapper"> Surrogate decision making has some issues. Surrogates often either don’t know what patients would want, or think they know but are wrong, or make choices that align with their own preferences rather than the patients. After making decisions, many surrogates experience regret, PTSD, and depressive symptoms. Can we do better? Or, to phrase the question for 2024, “Can AI do better?” Follow that path and you arrive at a potentially terrifying scenario: using AI for surrogate decision making. What?!? When Teva Brender and Brian Block first approached me about writing a <a href="https://jamanetwork.com/journals/jamainternalmedicine/fullarticle/2821355">thought piece</a> about this idea, my initial response was, “Hell no.” You may be thinking the same. But…stay with us here…might AI help to address some of the major issues present in surrogate decision making? Or does it raise more issues than it solves? Today we talk with Teva, Dave Wendler, and Jenny Blumenthal-Barby about: <ul> <li style="font-weight: 400;" aria-level="1">Current clinical and ethical issues with surrogate decision making</li> <li style="font-weight: 400;" aria-level="1">The <a href="https://jme.bmj.com/content/42/4/235">Patient Preferences Predictor</a> (developed by Dave Wendler) or <a href="https://www.tandfonline.com/doi/10.1080/15265161.2023.2296402">Personalized Patient Preferences Predictor</a> (updated idea by Brian Earp) and <a href="https://www.tandfonline.com/doi/full/10.1080/15265161.2024.2362553">commentary by Jenny</a></li> <li style="font-weight: 400;" aria-level="1"><a href="https://jamanetwork.com/journals/jamainternalmedicine/fullarticle/2821355">Using AI </a>to comb through prior recorded clinical conversations with patients to play back pertinent discussions; to predict functional outcomes; and to predict patient preferences based on prior spending patterns, emails, and social media posts (Teva’s thought piece)</li> <li style="font-weight: 400;" aria-level="1">A whole host of <a href="https://www.tandfonline.com/doi/full/10.1080/15265161.2024.2362553">ethical issue</a>s raised by these ideas including the black box nature, the motivations of private AI algorithms run by for profit healthcare systems, turning an “is” into an “ought”, <a href="https://geripal.org/is-nudging-patients-ethical-podcast-with-jenny-blumenthal-barby-and-scott-halpern/">defaults and nudges</a>, and privacy.</li> </ul> I’ll end this intro with a quote from Deb Grady in an <a href="https://jamanetwork.com/journals/jamainternalmedicine/fullarticle/2821367">editor’s commentary</a> to our <a href="https://jamanetwork.com/journals/jamainternalmedicine/fullarticle/2821355">thought piece</a> in JAMA Internal Medicine about this topic: “Voice technology that creates a searchable database of patients’ every encounter with a health care professional? Using data from wearable devices, internet searches, and purchasing history? Algorithms using millions of direct observations of a person’s behavior to provide an authentic portrait of the way a person lived? Yikes! The authors discuss the practical, ethical, and accuracy issues related to this scenario. We published this Viewpoint because it is very interesting, somewhat scary, and probably inevitable.” –<a href="https://bsky.app/profile/alexsmithmd.bsky.social">@alexsmithmd.bsky.social</a>   ** NOTE: To claim CME credit for this episode, <a href="https://geripal.org/ai-for-surrogate-decision-making-dave-wendler-jenny-blumenthal-barby-teva-brender/#cme">click here</a> **   <hr /> </div> </div> </div></div><div class="vc_tta-panel" id="transcript" data-vc-content=".vc_tta-panel-body"><div class="vc_tta-panel-heading"><h4 class="vc_tta-panel-title"><a href="#transcript" data-vc-accordion data-vc-container=".vc_tta-container">Transcript</a></h4></div><div class="vc_tta-panel-body"> <div class="wpb_text_column wpb_content_element" > <div class="wpb_wrapper"> Eric <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=10505">00:10</a> Listeners, Before we start the podcast, we’d just like to say we’re trying to do an end of the year push. You can donate tax deductible donations to GeriPal so we can continue to produce these podcasts in 2025. They cost us about $20,000 a year to run this podcast with our producers and all the other costs. Alex and I don’t make anything on it. Alex <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=28895">00:28</a> It’s a hobby. Eric <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=29663">00:29</a> It’s a hobby, and we love it. Eric <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=56167">00:56</a> And if you’d like to donate, go to GeriPal.org, click the donate button so you can donate your tax deductible donation to the GeriPal Podcast. Thank you. Eric Welcome to the GeriPal Podcast. This is Eric Widera. Alex <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=70071">01:10</a> This is Alex Smith. Eric <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=71255">01:11</a> And Alex, we’ve got a full house today. Alex <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=73359">01:13</a> We’ve got a full house. We are delighted to welcome back returning guest Jenny Blumenthal-Barby, who’s a philosopher and bioethicist and associate director of the center for Medical Ethics and Health Policy at the Baylor College of Medicine. Jenny, welcome back to GeriPal. Jenny <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=87979">01:27</a> Thanks. Good to be here. Alex <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=89675">01:29</a> And we’re delighted to welcome Teva Brender, who’s a third year resident in internal medicine at UCSF. Teva, welcome to the GeriPal Podcast. And finally, our last guest is Dave Wendler, who’s a senior investigator and head of research ethics at the National Institutes of Health Department of Bioethics. Dave, welcome to the GeriPal Podcast. Dave <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=107747">01:47</a> Thanks for inviting me. Eric <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=109715">01:49</a> So, Alex, we’re going to be talking. Alex <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=112275">01:52</a> About AI and surrogate decision making. But before we jump into that, who has a song request for Alex? Dave <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=123353">02:03</a> So I wanted to request Someday Never Comes by CCR. Eric <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=129185">02:09</a> Why did you request this song, Dave? Dave <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=132225">02:12</a> It’s a little bit autobiographical. Then goes into the session. When I was younger, I was the kind of kid who didn’t ask questions of other people. I tried to figure things out on my own. I remember one time I was trying to figure out how vision worked and I had this whole Theory, I’m a youngest kid. And then I’d talk to my older siblings about my theories and they’d say, in this case, look, that’s stupid. People figured this out a long time ago and they’d tell me. And so I always thought, oh, I see. When you get older and you become an adult, you understand everything. And so that was my assumption. I got to be an adult. I realized that wasn’t true. And then I sort of despaired for a while. And so I think the challenge and I think the challenge with surrogate decision making for decision incapacitated patients is realizing we’re probably not going to get it right. Not always anyway. But still, we need to really work hard. It’s important and try to do the best we can. So some days, never going to come. We’re never going to get this perfect, but hopefully we can do better in the future. Alex <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=192133">03:12</a> Mm. Yeah. Fun choice. And I think this was the last song that CCR recorded as a single and released. Here’s a little bit of it. Alex <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=200615">03:20</a> (singing) Dave <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=246375">04:06</a> Thank you. Eric <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=246863">04:06</a> That was awesome. Thank you, Alex. Great song request, Dave. So I’m going to turn to you, Dave. We’re going to be talking about AI and surrogacy. What issues are we dealing with right now with surrogacy? You highlighted some of them in the song requests. How do you think about that? Dave <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=264491">04:24</a> Right. Well, first, I just want to say I appreciate Alex. I don’t know if this is intentional. Adding a little of the John Fogarty twang into that song. That was great. So I’ve been working on this issue for about 20 years. I’m a philosopher, and I’m interested in interesting practical issues that have philosophical implications. And this one is how do we respect people who can’t make their own decisions, given how much respect for autonomy is dominant? And at the time about 20 years ago, when I started working on this, there were smatterings and I think some recognition that although we had advanced directives at that point for over 30 years, we were trying to figure this out, we still face two really significant problems. The first one is that a lot of patients, particularly the end of life, probably the majority of them, can’t make their own decisions. We have to rely on somebody else to make decisions for them. The current process we have, relying on DPAs and next of kin often doesn’t get patients treated in the way they want to be treated. Those people who make those decisions often don’t know the treatment preferences of the patient. So that’s what we call predictive accuracy. So we’re pretty bad with predictive accuracy. That’s a problem. The second problem we looked into with a previous fellow, Annette or Ridd, was looking at what’s the impact on the surrogates of making these decisions for decisionally incapacitated patients. And for a lot of them, the impact’s bad to really bad. Some data suggest a quarter to a third of surrogates after they make these decisions, they experience symptoms of PTSD that can last months or years. Feeling like they’re responsible, they’re the ones who had to make these decisions. One of the studies has these really compelling quotes, one of which was a surrogate looking back on it and said, yeah, I remember the day the doctor came into the ICU and asked me if I wanted to kill my dad today. And that’s how a lot of these people experience making those decisions. It’s terrible for them. Eric <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=386359">06:26</a> Well, can I, can I? Because I remember like older data looking at how accurate surrogates are. I think they asked both patients and their surrogates about a bunch of end of life questions, including intubation, CPR. I think amputation was on there. It was like 60 to 65% accurate. Then they just looked at those people who were healthcare agents as assigned by durable power of attorney for healthcare and it didn’t really change anything. Is that kind of where we are now? Does that data still kind of ring true? Has anybody kind of followed that up? Dave <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=423541">07:03</a> Yeah, there have been some follow ups. The data does ring true, but unfortunately even that number of about like 2/3 accuracy is probably in our context an overestimate because those data include, include what anybody who’s a clinician, what you guys do day to day, you wouldn’t consider it a problem. You have somebody who’s 25 years old, they have a significant bleed. If you stop the bleeding, they’re going to live for another 40, 50 years, expect and have a good quality of life. You don’t agonize over those decisions. You basically don’t even ask the family, you just stop the bleeding. That’s just what you do. It’s when we get to the really hard scenarios like somebody has moderate Alzheimer’s disease and they need to be intubated, those are the hard ones. And in those cases, the accuracy is really getting close to almost 50%. In other words, getting frighteningly close to random guessing or flipping a coin. So, yep, it’s still debated and looking. Eric <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=482461">08:02</a> At people who, thinking, in the future, if I had Alzheimer’s, what would I want? Alex <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=487725">08:07</a> Right. Eric <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=488157">08:08</a> Because we wouldn’t be asking somebody with severe Alzheimer’s disease, what do you want? And then asking their surrogates. I guess the other question is what probably is more interesting too is this idea of like decisional regret. Like, has there been any, anybody looking at of people who were seriously ill who got an intervention based on what a surrogate thought, what the patient would want, Is there any regret? Alex <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=516739">08:36</a> Right. Eric <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=517067">08:37</a> That’s what we really want to know. Like did what the surrogate recommend to do to the team or what was decided by the surrogate and the medical team? Dave <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=527326">08:47</a> Yeah. Eric <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=528814">08:48</a> Was that the right choice once the patient regained capacity? Dave <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=534030">08:54</a> Right, right. Yeah, That’s a great question. So there’s two aspects to that. One is sort of a philosophical ethical question of whether you want to prioritize the prospective preferences and values of the patient or the retrospective one. We could, we could debate that for a couple of hours if we want to. The other problem, although I think you’re asking the right question, is doing that study would always have this huge selection bias because you’d have say 50% of the people you made a decision not to intubate or intubate, half of them die. So you can’t ask them, did the surrogate make the right decision? Are you glad they didn’t intubate you and you die? You’re only going to ask the people who recover and recover sufficiently to be able to understand your question. So it’s really unclear how we can even get the data, which I think just makes this even more challenging. Alex <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=584975">09:44</a> Yet another use case for AI. If we had just uploaded people to the AI Personas, then we could ask the AI Persona after the patient dies. That’s kind of tongue in cheek, but I just push in here because the future is strange and we don’t know what it’s going to be like. Teva, I want to go to you. You’re in it. You’re a third year resident. Does this issue ring true to you clinically? Teva <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=612915">10:12</a> Absolutely. Every day in the ICU we face these questions and I think the way that you and Brian and I had structured our viewpoint was to go from the most plausible to the most speculative use cases. And right now we’re talking about predicting what patients would want, which as we’re saying is very challenging for humans. It would also be very challenging for AI. We talk about what data are we using to make these predictions. We have to make sure that the. Eric <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=640093">10:40</a> Data is not biased before we jump into AI. Alex, was that your question? Alex <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=644365">10:44</a> No. No. I’m wondering whether, like, on your. In your clinical, everyday reality, this comes up and say, like, does this ring true to you from your work in the icu, from your work with patients? Eric <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=657061">10:57</a> And when you say this, Alex, with. Alex <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=658413">10:58</a> Dementia, I mean, the challenge of surrogate decision making, you know, do you. Are you encountering family members who are just, like, at a loss for what to do and tortured it? Teva <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=671585">11:11</a> Absolutely. I think there’s the question also of, there’s some surrogates who just don’t know the patient well. We see this a lot at the va. Patients who are sort of estranged from family members who then have to make these decisions for somebody that they don’t really know. And then there’s the surrogates who do know the patient well. But again, they haven’t talked about the specific intervention at question. And really they’re trying to understand what reasonable quality of life can this person expect to achieve and just agonizing over those decisions, over every individual decision. Do we do antibiotics or no antibiotics? It’s not even necessarily the big one. Cpr. No cpr. It’s every little decision along the way. Eric <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=715605">11:55</a> And Jenny, your thoughts on this, like, isn’t this just fixable, like, for the people who have someone in their lives that they can turn to, let’s just do an advance directive, let’s get that DPOA for healthcare paperwork in, and let’s just make sure that they have a conversation about what their healthcare preferences are if they got really sick. Jenny <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=739645">12:19</a> Yeah, I mean, I think that is a good start, but there’s a lot of evidence that shows that that doesn’t get people very far. Right. So we can have a conversation, but a conversation that’s going to have to revolve around so many different cases of, well, what would happen if I were in this condition or that condition? And you can talk about the. And then the condition the patient’s in might be a little bit different. And then that might cause the surrogates to sort of question the extent to which this situation at hand is analogous to the conversations that they’ve had. So I think that’s one challenge for surrogates and family members, even if you have conversations. And the other is the challenge of which we know really well from fields like decision psychology and behavioral economics of people predicting what they would want in some future state. We often sort of mispredict what our preferences would be, what our emotions would be, how we would feel. So I think that those are a couple of challenges for even these cases where conversations happen with surrogates. Eric <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=807165">13:27</a> Okay, so I’m feeling that there’s a lot of issues with just relying on surrogates to think about what the patient would want, what their values are, what their preferences would be. Is there potentially another way to do this? Dave, you wrote a little bit about this. Dave <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=827475">13:47</a> Yeah. So let me first emphasize the extent of the negative here. Hopefully we’ll go upbeat towards the end of the broadcast here. But just to be a little more negative is two things. So when people hear this, that surrogate’s predictive accuracy is pretty bad, the initial reaction is to think, well, there are ways we could solve this one. As Teva said, a lot of times the surrogate is somebody who doesn’t know the patient well. So let’s make sure we get somebody who knows the patient well, ideally say their first degree relative. That’s one thing you could do. Another thing you could do is let’s really encourage discussion ahead of time between the appointed surrogate and the patient while the patient’s competent about patients preferences about their values. And then once we have the surrogate, let’s really try to give them the information they need to make decisions. Unfortunately, there’s decent data that none of those things work. It turns out there’s at least pretty good data that actually the better you know somebody, the more intimate your relationship with them, the worse you are, not the better, but the worse you are at predicting their preferences values. We could talk about why that is, but it looks like there’s really good empirical data for that. If we care about predictive accuracy, relying on the next of kin might be a bad way to go. There’s also been some really nice empirical studies to see whether or not prospective discussions increase predictive accuracy. At least the ones that have been done so far, which are pretty good ones. It doesn’t. And so it looks like those aren’t going to be solutions. And given that those are the real solutions that we have for advanced directives, I think we need to look other places for possible solutions or at least ways to do better. Eric <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=938455">15:38</a> Okay, so I got another question then. As before, we jump into ways that can do better because it just reminds me a lot of this is focused on the idea of substitute judgment. Right? Like we’re going to try to guess what somebody else would want based on this issue versus the idea, like best interests. What’s important to me is my family, kind of my surrogate decides what they think is best for me based on what’s going on. And I remember work from Dan Silmazi looking at this question of, like, what do people want? Do they want substitute judgment? They want best interest. And it was kind of like a curve, like most people are in the middle, that they want people to use a mix of best interests and substance judgment, not just exactly what I would want, although there are some people that would want that. Dave <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=987321">16:27</a> Yeah. Eric <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=987665">16:27</a> Just like there are just some people that just want to use best interest, but most people kind of want to mix. Like, how important is it that we just make decisions as surrogates just purely based on what the preferences they think would be important for. Dave <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=1002489">16:42</a> Right. Eric <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=1003201">16:43</a> That patient. Dave <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=1004289">16:44</a> I’ll give you my view, and then these guys can jump in. Is one it. First of all, it depends on how strong you think the view is and how confident you are of it. So if the person was somebody who was absolutely committed to never wanting a blood transfusion, they were that way their whole life, and you know it. Then it seems to me that respect for them just trumps anything about the best interests. And the fact that they’ve now lost decisional capacity doesn’t mean that you jump in there and start giving them two units of blood. So I think it depends on how confident you are. If you’re not that confident, then I think you should shift to best interest. The problem now, you guys are the clinicians is that, as I said at the top, when it’s really clear what’s in the person’s best interest, we don’t struggle very much with this. It’s the times where it’s like you got somebody who’s really sick and they’ve been in the ICU for three weeks and you’re not sure you can get them through, but you might be able to, but it might take a really long time. You don’t know what their quality of life is going to be on the other end. And so you could have four intensivists with 30 years training each, and they could all disagree. I. We do consults all the time on these where different people will say, no, it makes sense to try. Others like, no, it doesn’t make sense to try. The chances are too low. Alex <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=1080145">18:00</a> Yeah, I think those areas of uncertainty. Yeah, go ahead, Jenny. Jenny <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=1083793">18:03</a> Yeah, I was just thinking there’s also a sort of third area between substituted judgment and best interests. And this has been developed by Dan Brudney, who’s a philosopher, and some other people, which is the notion of thinking about this concept of authenticity. So the thinking here is that we’ve gotten too hung up in the framework of substituted judgment, of thinking about what would the patients say they would want in this moment if they could speak, or what did they write down and say that they would want in this future circumstance? But really, what a lot of patients want and what families do when they’re engaging in surrogate decision making is trying to figure out the sort of person that this patient was. Right? Like, what were their values? You know, they. I remember Dan Brudney has this example of this guy who’s, like, always wanting to be out riding his Harley, and he’s super independent, and he’s sort of like, that’s what surrogates do. We sort of try to get a sense of what would this person, sort of like authentic self, want us to do in that situation. And that’s a little bit different than the question of substituted judgment. And it’s also a little bit different than the question of what is in the patient’s best interests. Eric <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=1153999">19:13</a> So only if there is a way we could predict what the authentic self would want. Alex <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=1159311">19:19</a> Wait, just before we get there, Teva, did you want to jump in with something? Teva <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=1162695">19:22</a> I was just going to say, and none of this considers the legal landscape, which I think, Jenny, you talk about in your commentary as well, is how courts have interpreted surrogates and should this be best interest or substituted judgment. So just to throw another curveball in. Eric <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=1178039">19:38</a> There, now we should go to the question. Alex. Alex <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=1181359">19:41</a> Well, yeah, yeah, let’s go. Eric, let’s get into the PPP or ppp. Eric <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=1187575">19:47</a> So, Dave, let’s talk about the ppp. Can we predict what patients potentially would want or what their values are? You came up with the idea of the ppp. What was that? Dave <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=1202385">20:02</a> So it started, as I mentioned. I started this about 20 years ago. As I mentioned, there were these two problems. Predictive accuracy is bad, and that’s in terms of what the patient wants. Or as Jenny was saying, in terms of what’s consistent with their values. It’s bad in both ways. And there’s burden on surrogates. There was also this other data that people knew for a long time. We didn’t come up with this. It’s that people’s treatment preferences are correlated with various aspects of them and their circumstances. How much aggressive care you want varies depending upon whether you’re 25 or 95. There’s some really obvious ones. There’s some Less obvious ones, like where you were born, geographically, at least in the US can make a difference in how much aggressive care you want. Our thought initially was, what if we harness that data and use that data to try to predict what treatments the patients would want, what’s consistent with their values, and then give that information to the surrogate to try to help them. And then the thought was, well, maybe that could increase predictive accuracy and maybe also reduce some of the burden on them. So address both of the problems. We started out with a very, very simple, simplistic one and we found out that that one was as basically as accurate as surrogates was, including next of kin and patient appointed ones. So we think there’s at least reason to believe. We haven’t proven this yet, but there’s reasonably, if you do a much better one, like for instance, age wasn’t in our algorithm, if you add that in, it almost undoubtedly is going to get at least a little more accurate. And so there’s chances that we could do better with this information. Since then, as everybody knows, we’ve gotten into AI, we’ve gotten into ChatGPT, we’ve gotten into machine learning, and so there’s now really different creative ways. We were thinking of just surveys of the general public. Now there’s looking at online behavior. Teva has this really nice paper. If you look at the recordings of discussions they have with their doctors and even sort of the intonation when they talked about resuscitation, maybe that gives you information you could use to predict. Putting all that together seems to me really good chance it’s going to be more accurate than surrogates, but we don’t know until somebody gives us $20 million to test it. Eric <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=1343315">22:23</a> So potentially using demographics, geography, survey data to help us get to that question, what would a similar patient want in this situation to help family members, those surrogates decide? Yeah, that seems right. So before we talk about AI, Jenny, this just kind of also reminds me a little bit of our podcast we did on behavioral economics and nudging, because this also feels a little bit like a nudge, like, oh, we have this data most people in similar situations, like your dad would want, Right? Alex <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=1390823">23:10</a> What is that called? Is that the norming nudge? Jenny <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=1395055">23:15</a> Yeah. Yeah, I guess you’re communicating a kind of social norm right to the family about what a similar patient would want to their father. Eric <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=1403663">23:23</a> Yeah, I think the interesting thing there is it’s not a black box, like we have all the inputs that are going into it, the survey data, but it is using like Population based data to make an individual potentially decision, which is everything that we do in medicine, evidence based medicine is based on that. But I don’t know, it feels a little bit different here. Teva, Jenny, your thoughts on this? Teva <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=1429835">23:49</a> Well, I think what we’re talking about and Dave went from I think the PPP to the PPP is there’s the potential that it does become a black box and that you look at, you know, an individual’s purchasing behavior. So the example that we give in. Eric <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=1445621">24:05</a> Our pieces and real quick, just to highlight. So we’ve been talking about your piece, your piece, you have a jama im. Teva <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=1452821">24:12</a> Yes. Eric <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=1453501">24:13</a> Editorial with Alex on the use of AI in surrogate decision making. Teva <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=1460213">24:20</a> That’s right. Eric <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=1461525">24:21</a> We’ll have a link to that in our show notes. What did you suggest in that paper? Give our audience who haven’t read it yet an idea of what you were talking about. Teva <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=1469705">24:29</a> Yeah, so Brian Block, who can’t be here, was one of the other co authors and we approached Alex whose initial reaction, I don’t know if you remember this was heck no, when we use AI to help surrogates. But we kind of steel manned our argument. And so we started with the vignette. And the vignette we give is a patient who has had a cardiac arrest and a surrogate who doesn’t know the patient well. And so we give the example of okay, this person was a member of the Sierra Club, they like to volunteer at the Humane Society, walking their dogs. This is clearly somebody who would value their functional independence. And then we give three different examples working from the least speculative to the most speculative of how AI could help this surrogate. And so one is this ambient voice technology which it exists here at ucsf, they’re piloting this where you can record interactions between patients and clinicians and maybe in the future machine learning can pull those snippets, even if it’s just sort of the doorway conversation about those values, goals and preferences that really guide these decisions. The second is predicting functional outcomes. So right now we have ways to predict 30 day mortality, admission to a SNF, et cetera. But what about those functional outcomes that mean most to patients? And then the third is predicting what patients would want. And that’s I think what we’re talking about here with the ppp. But the problem becomes if you start pulling this purchasing behavior, other things like that. Eric <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=1560879">26:00</a> Millions social media posts. Teva <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=1563255">26:03</a> Exactly, social media, you start to get to a place where it is a black box. You don’t know how this decision was personalized or how this prediction was personalized. We’re going beyond just population data to say many people in your situation would want this. To say no. Specifically you, based on who you are, who your digital avatar is, would want this. And that gets to be a little bit even more controversial, I think. Alex <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=1589475">26:29</a> Yeah. Am I the sum of my Facebook posts and my purchases on Amazon? Right. This is the kind of the fun stuff that we talked about as we were writing this paper. That sounds terrifying, right? Teva <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=1604375">26:44</a> It is, because we put a certain face on our social media. But then you could also flip it and say, well, that’s maybe aspirational. That’s who we aspire to be. Does that say something deep about us? Is the person, the face that we try to put on in public? Your Amazon purchase behavior is maybe a little bit more private, who you are when you’re just alone at home. Dave <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=1625815">27:05</a> Yeah. Alex <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=1626183">27:06</a> I think of the quote by, well, first of all, I think of the song that Dave chose, you know, someday Never Comes. I also think of the quote by George Box who said, all models are wrong. Some are useful. Right. We are never going to have the perfect model. However, using predictive models, using AI, we may be able to get closer and find some model that is useful and maybe better than the coin flip of surrogate decision making. Eric <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=1657181">27:37</a> That’s better than code, better than a coin flip. Right. It’s, it’s not 50% correct for surrogate. Jenny <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=1664531">27:44</a> I mean, it’s that, yes, it is better than a coin flip. But I do think that there’s a tension here, which is that in order for these algorithms to work, you need to feed them a ton of data. And then you think, well, what kind of data are you feeding it? I mean, and to this, this is to Alex’s point, of all of our blog posts, all of our purchasing behavior, you know what we’ve liked, part of that is really constructed by social media as well. Right. So how authentic is that to represent myself? So I think there’s going to be this temptation. On the one hand, we want to just have good data that we feed into the algorithm, but we’re going to have a temptation to feed a lot of data in so that we can get more predictions. That’s what these algorithms need. And then I worry about the quality or the source of the data that we’re feeding in and how, how representative that is of patients preferences about medical treatments. Eric <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=1717415">28:37</a> Yeah, this is challenging because how much of it is what the algorithm drives people to write and to post versus how much is the algorithm actually influencing who we are as people too. This is getting hard here. Alex <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=1736343">28:56</a> Yeah, I know. We think that the AI does drive so many of these algorithms already, you know, suggesting the next thing to offer you to post the next thing to look at on Facebook. So is the AI already directing our lives? Right. We thought that the Terminator scenario, the Skynet, was in the far distant future, but maybe the beginnings of it are already here. Dave <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=1763231">29:23</a> I don’t know if you guys talked about in this in your session, but I sometimes wonder if we have different standards for humans and AI. So I think one of the big worries as we’ve been discussing with the ppp, as Teva said, is the chance it becomes a black box and it’s making this prediction. Let’s imagine it’s even making these really accurate ones, but we don’t know exactly on what basis it’s doing it that worries us. But now take a human surrogate. It almost seems like we valorize the black box. In that case, like you say to the next of kin, what would they want? And they say he wouldn’t want aggressive treatment. I know it. I know him. Well, on what basis do you predict that? I just know him. I can’t tell you what the basis for it is. It’s just I know him. In that case, that’s like great. That’s what we really want. Like you really know this guy in such a deep way, you can’t even point to what the specific data you’re relying on. So there it seems good. And I wonder, are those different or is it just we don’t trust the AI or we haven’t learned to trust it? I don’t know. Teva <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=1823175">30:23</a> Or let’s say we have a model that’s 100% accurate but can’t explain why. Does that even help a surrogate to just be told this is what your loved one would want? Or do we want a model that’s maybe 75% accurate, but can at least explain how it came to that decision? I’m thinking about all of this through the lens of how do we help surrogates? And I think giving them the quote unquote right answer without showing them the steps along the way is not going to ultimately be helpful if we’re talking about reducing these symptoms of PTSD and how traumatic this experience can be. Jenny <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=1858297">30:58</a> Yeah, yeah, yeah, that’s exactly right. And that’s one of the things we bring up in the editorial is that part of the hope for a tool like the PPP is that it can reduce surrogate burden. But I mean, you imagine a scenario where A surrogate is struggling with the decision. And then you just bring in this tool and say, well, the tool says that your mom would want treatment. And they’re like, but, but why? And it’s sort of like, well, we can’t tell you why it. Or maybe you say, well, it’s based on all her Facebook posts and all these other things, but trust us, it’s accurate. I don’t know how helpful that’s going to be to surrogates and I think it might even cause them more emotional angst and stress to sort of struggle with what, what to do with that. Right. Dave <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=1900419">31:40</a> And this I think, yeah, this I think is a place where we just need empirical. We need the $20 million because we need empirical testing because we don’t know. And I think there’s just two possibilities. As you guys say, it might be that surrogates want to know the reasons why it’s predicting certain treatment problems. But it might be. My hope is we use this as what I call soft default. You just give the information to the surrogate and say, but if you feel strongly otherwise, don’t do this and that that possibly has. What it could do is take the burden off the surrogate. So then the surrogate feels like, yeah, this is the prediction. I just went with it. It wasn’t my choice. I was confident that there wasn’t compelling evidence to think my dad wanted something else. I’m protecting my dad, but then I don’t feel as responsible and I don’t think we know which way it goes until we test it. Eric <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=1951789">32:31</a> Well, I feel part of the role of the surrogate is, you know, if the patient doesn’t have capacity, it is that person outside of the healthcare team, outside of that healthcare system that you’re in that you’re asking like, what would this person want based on everything that you know. So it’s this entity that is removed from what is becoming a more often for profit or even the not for profits are making a lot of money institution, a big business of medicine. Somebody outside of that who says, no, this is, this is what this person would want. My biggest worry with using any of these models, whether it be like AI machine learning algorithm, whether it be like these in the PPP using demographics and survey data is that still feels very. That is part of the institution, like why should I trust? Especially an AI black box model that could be easily manipulated. Let’s ramp up the. Not the thing that saves our healthcare institutions some more money. Let’s ramp up that part of the algorithm, that part of AI to push people, to nudge people towards stopping expensive stuff or if it were a fee for service model, to do more expensive stuff so we make more money. Dave <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=2035235">33:55</a> Eric, I’m glad you brought that up because in all of the discussions I’ve had and things I’ve written, that’s actually my biggest worry. I think that’s the biggest worry about a PPP and it’s not discussed as much, but you’re right, it could just get, if we’re not careful, if it’s not done in a transparent way with people looking over it who we can trust, it could get hijacked. Right. Eric <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=2057333">34:17</a> So AI inherently is not transparent. It’s a black box on how it’s kind of, kind of making this stuff up based on, you know, millions of data points. Dave <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=2068563">34:28</a> Yeah. And so we end up with, huh. It just happens that people who lose decisional capacity, they all want really expensive back surgery. That makes us lots of money for our hospital, but none of them want to be in the ICU and a respirator because we’re not making as much money off of that. That’s really amazing. Eric <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=2084547">34:44</a> Yeah. They also want to make sure that you give us five star outstanding on our data. Jenny, is this kind of, again, this is going towards like behavioral economics and nudging people towards particular directions. Alex <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=2098582">34:58</a> This is economics. Economics. Jenny <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=2099926">34:59</a> I guess I’m an, maybe I’m more of an optimist than a pessimist. I mean, I do think that generally we’re seeing more discussions about regulation of AI and things that have to be made transparent and reported by developers of algorithms. And a lot of those, like legal and regulatory requirements are in development now and will soon be released. So I mean it is a, I guess a kind of scary example, but I don’t know, you know, how likely something like that really is given some of the regulatory developments that we’re likely to see. But again, maybe I’m an optimist. Teva <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=2135163">35:35</a> How about to take it back even from less conspiratorial to the example that Jenny gave where the algorithm suggests that the patient wants dialysis but the family says, I don’t think so. That to me it’s usually the other way. In adult medicine, it’s usually the other way where the clinicians are saying, you know, I don’t think dialysis is going to be within goals for this person who’s critically ill in the icu, but the family is typically pushing for more of those life saving interventions. Alex <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=2164531">36:04</a> Well, I would just, just editorialize briefly and say at UCSF that’s the way it is. It may not be. My guess is out in the community there’s more pressure to initiate dialysis for various reasons. But yes, continue to. Teva <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=2178075">36:18</a> Obviously, you know, I have, I have a limited experience and there’s only this one institution. But the point being, do the clinicians only pull in these algorithms when they’re getting the answer that they don’t want, or does it have to come in every time? Sort of. Dave, I think you suggested maybe more of an informed assent model, but that’s another area where there could be bias about when do clinicians pull the trigger on using these algorithms. Dave <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=2205003">36:45</a> Yeah. And I think it’s really. I would add something we haven’t discussed, which is the increasing percentage of unrepresented patients who lose decisional capacity. So we’ve been talking about people where there is a surrogate and how do we decide between burn on surrogates and predictive accuracy. But more and more patients end up in emergency rooms and ICUs and they’re unrepresented. We can’t find somebody to make decisions for them. On the one hand, I think a PPP could be really valuable. In that case, it might be the only information we have on them. But Tevi, your point there is then, or as Eric was saying, we don’t have this independent person looking out for their interests. And then you could really nudge, like, yeah, here’s what the PPP says. Give them that expensive back surgery and there’s not some relative they’re looking out for them and say, no, that doesn’t make any sense. Eric <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=2251579">37:31</a> Yeah. And then I guess the question is it better? Like, what are we trying to look for the perfect or are we trying to just look for better than what we currently do? And what we currently generally do is like ethics committees for that, which are generally part of the institution anyways, that’s trying to combine all this data and. Alex <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=2269765">37:49</a> Quick Plug AGS is coming out or has just come out with a new position statement on care of unrepresented. And we will have a podcast with Tim Ferrell and others on that issue coming up. That’s my. I guess I’m not an AI. That’s my nudge to listen to that podcast. Jenny <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=2288165">38:08</a> So, I mean, you know, we’ve been talking about nudges a lot and this notion of something like this becoming a default and having a default effect. And I do think that that is a real important thing to think about. So you have a predictor and it says the patient would, you know, the predictor says the patient would want treatment. It’s going to be really hard psychologically for the clinical team, the surrogate, to override that default. And in our editorial we also talk about the potential legal concern right of now you have this, this idea that substituted judgment is saying that the patient would want this treatment. And if you depart from that, if we think it’s accurate, you’re departing from like the legal standard of substituted judgment. So I think one of my major concerns is more just how this tool would actually be used. It’s great if it’s just used as an adjunct, as like part of the conversation, part of the decision, part of the information that the surrogate and the clinical team are using. But I worry that it’s just going to just become sort of too weighted or overly weighted. Alex <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=2355623">39:15</a> Well, yeah, I guess while we’re venting our concerns, I have many and I think this one’s been said, but I just want to reiterate it. The turning of the is into an ought and that many of the decisions people make are in favor of likely non beneficial, potentially harmful treatment. And I worry that if we just go on what sort of decisions other people have made in similar scenarios, it may sort of take us inexorably even further and further down that pathway. If we’re nudging more and more people to make those decisions, well, then we’ll have more and more people who have made those decisions. And it gets into this sort of spiral and I don’t know where that ends up and I worry about that. Eric <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=2397129">39:57</a> Yeah, there’s the other question too. If we’re using past data, so if AI is going through all of our notes, past hospitalizations, all of that, to come up with a what would I want? How much of that is how much of our past behaviors should be predicting our future ones? I mean, I just think about the patients with, you know, severe mental health disorders who are, you know, don’t make decisions not to see a healthcare provider based on like informed consent, but because that they have a significant mental health issue that is interfering with their decision making capacity. And how much should we be relying on those past behaviors predict future kind of wants and desires, which we sometimes we currently see this too. Right. You know, when we talk to medical teams, oh, this patient never really interacted much with the healthcare system. Well, they never interacted much with the healthcare system because they were actively psychotic and delusional and having, you know, these significant fears. How much should that be weighing in to how we think about what somebody would want? Dave <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=2462865">41:02</a> Yeah, and I think that becomes it’s interesting because with the initial iteration, which was just surveys there, it’s not so much of a worry because you can assess the people from whom you’re gathering the data and at least get some assessment of their capacity. But once we go more into these AI approaches, so, for instance, where what we’re doing is we’re playing off a recording of the conversation that the patient had with their clinician to take what they’re saying seriously. We need to make a judgment that at the time, they were fairly competent in that discussion. And how do we know that and. Eric <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=2501939">41:41</a> It’s an authentic viewpoint for them? Because, I mean, even when I talk to, like, my own doctor, it’s not always authentic, Eric, that’s coming out. It’s like, oh, yeah, yeah, totally. I will totally do that. Yes. When there’s no chance I’m going to be doing that. Is that really authentic, Eric? Alex <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=2522657">42:02</a> Yeah, I think another concern that, you know, we should. We should discuss is the. Or briefly, because we’re. We’re coming to the end, at least mention is the privacy concerns. You know, Teva and Brian Block and I had this conversation where we were talking about, you know, well, what would the AI say in some of these cases? And you’d ask it, well, why did you make that decision? Well, you think you’re. You think that he doesn’t have kids, but actually he does. He has several children. And based on his interactions with them, this is sort of, you know, so there are tremendous privacy concerns. Would people be willing to allow these things to be recorded? Would they be willing to use that information? What sort of, you know, backgrounds or privacy concerns would that unearth, raise, et cetera? Eric <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=2573025">42:53</a> All right, my last question to all of you is there is no current AI box that is doing this right now. Dave is talking about getting $20 million to run some trials. Dave <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=2587849">43:07</a> That was begging. Eric <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=2588889">43:08</a> That was begging. How close do you think we are to this? Like, how is this just a pie in the sky? Did we just chat for 50 minutes about kind of something that’s never going to happen? Or do you see this actually being something that we’re going to see 2 years, 5 years, 10 years from now? Teva, I’m going to start off with you. Teva <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=2611495">43:31</a> Well, I’m coming here from the Bay Area, where, you know, health tech, move fast, break things is kind of the motto. So I think we’re talking about this end use case scenario. Predicting patient preferences. That feels pretty far away to me. But some of the other things about incorporating AI to predict functional outcomes, you and Alex and Eric, you guys do a lot of work with prognosis. So I think that is more. More on the horizon is how can we use AI to predict the functional outcomes that mean the most to patients? I think that is a more realistic scenario, Jenny. Jenny <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=2647207">44:07</a> So I think it’s very close because people are creating digital twins, like, of their parents. Like, I just listened to an episode of MIT Review of this journalist who went through an exercise of creating a digital twin of her parents and interacting with it and seeing how accurate it was. And you can imagine a future where her actual parents become incapacitated and she asks their digital twin, what would you want in this situation, Mom? So I think it’s quite close, actually, in that sense. Eric <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=2674423">44:34</a> I remember Zoom, the makers of the video conferencing thing that we’re using, they wanted to create avatars for meetings. So when you join a meeting, just like Dave right now could be avatar Dave, that Dave would say is his avatar. And I can imagine in the future where none of us are the real ones, we just put our avatars up there and there’s just one avatars talking to each other. Like, what’s the point of it? Dave <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=2702855">45:02</a> I mean, they’d be more interesting and funny. See if that’s why, you know, it’s not an avatar. Eric <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=2707471">45:07</a> Yeah. Turn up the humor part better. Alex <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=2709855">45:09</a> Guitarist for the Alex avatar. Yeah. Eric <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=2712655">45:12</a> Dave, how close do you think we are? Dave <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=2715655">45:15</a> I was joking about the money, but I think it’s going to depend on the money because we could get tech people to do this, but to test it, to validate it in a way that we could use it in medicine, we’re going to need to do a bunch of testing. I think Walter sitting in Armstrong is a guy at Duke who’s forming a company to try to do this. If somebody gives him truly the money, I think within 10 years, we’ll have it. Eric <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=2739395">45:39</a> 10 years? 10 years is ages in the tech space. Dave <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=2744163">45:44</a> Yeah, in the tech space is. But in. In the clinical trials. So we’re going to put this into medicine. You guys are going to use it in the ICU. We’re going to have to get it tested, we’re going to have to get it validated. It’s going to have to be approved. FDA is going to have to look at it, and lots of stuff’s going to have to happen that’s not as fast as tech is. Eric <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=2762755">46:02</a> Oh, they’re not going to like hearing that. Well, I want to thank all three of you. But before we end, Alex, do you want to do a little bit more of Someday Never Comes. Alex <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=2770931">46:10</a> (singing) Eric <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=2821335">47:01</a> Dave, Jenny, Teva, thank you for joining us on this podcast. Dave <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=2825255">47:05</a> Thanks. This is really fun. Jenny <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=2826455">47:06</a> Thank you all. Eric <a href="https://grain.com/share/recording/bf7393ed-89c3-47a6-bf93-0bf0ef7d3c6a/RzGaiczFdtCZ3iorDSVORXyPJTfaEgNsos6TMdC2?referrer=docx&t=2827463">47:07</a> And thank you to all of our listeners for your continued support. </div> </div> </div></div><div class="vc_tta-panel" id="cme" data-vc-content=".vc_tta-panel-body"><div class="vc_tta-panel-heading"><h4 class="vc_tta-panel-title"><a href="#cme" data-vc-accordion data-vc-container=".vc_tta-container">CME</a></h4></div><div class="vc_tta-panel-body"> <div class="wpb_text_column wpb_content_element" > <div class="wpb_wrapper"> <h3 style="text-align: center;">***** Claim your CME credit for this episode! *****</h3> Claim your CME credit for EP337 “AI for surrogate decision making?!?” <a href="https://ww2.highmarksce.com/ucsf/index.cfm?do=ip.claimCreditApp&eventID=14382">https://ww2.highmarksce.com/ucsf/index.cfm?do=ip.claimCreditApp&eventID=14382</a> Note: If you have not already registered for the annual CME subscription (cost is $100 for a year’s worth of CME podcasts), you can register here <a href="https://cme-reg.configio.com/pd/3315?code=6PhHcL752r">https://cme-reg.configio.com/pd/3315?code=6PhHcL752r</a> For more info on the CME credit, go to <a href="https://geripal.org/cme/">https://geripal.org/cme/</a> Disclosures: Moderators Drs. Widera and Smith have no relationships to disclose. Guests Dave Wendler, Jenny Blumenthal-Barby, and Teva Brender have no relationships to disclose. Accreditation In support of improving patient care, UCSF Office of CME is jointly accredited by the Accreditation Council for Continuing Medical Education (ACCME), the Accreditation Council for Pharmacy Education (ACPE), and the American Nurses Credentialing Center (ANCC), to provide continuing education for the healthcare team. Designation University of California, San Francisco, designates this enduring material for a maximum of 0.75 AMA PRA Category 1 credit(s)™. Physicians should claim only the credit commensurate with the extent of their participation in the activity. MOC Successful completion of this CME activity, which includes participation in the evaluation component, enables the participant to earn up to 0.75 MOC points per podcast in the American Board of Internal Medicine’s (ABIM) Maintenance of Certification (MOC) program. It is the CME activity provider’s responsibility to submit participant completion information to ACCME for the purpose of granting ABIM MOC credit. ABIM MOC credit will be offered to subscribers in November, 2024. Subscribers will claim MOC credit by completing an evaluation with self-reflection questions. For any MOC questions, please email <a href="mailto:moc@ucsf.edu">moc@ucsf.edu</a>. </div> </div> </div></div></div></div></div></div></div></div></div></div> </div>The post <a href="https://geripal.org/ai-for-surrogate-decision-making-dave-wendler-jenny-blumenthal-barby-teva-brender/">AI for Surrogate Decision Making?!? Dave Wendler, Jenny Blumenthal-Barby, Teva Brender</a> appeared first on <a href="https://geripal.org">A Geriatrics and Palliative Care Podcast for Every Healthcare Professional</a>. ]]></content:encoded> </item> <item> <title>Stories We Tell Each Other to Heal: Ricky Leiter, Alexis Drutchas, & Emily Silverman</title> <link>https://geripal.org/stories-we-tell-each-other-to-heal-ricky-leiter-alexis-drutchas-emily-silverman/</link> <dc:creator><![CDATA[Alex Smith]]></dc:creator> <pubDate>Thu, 05 Dec 2024 08:00:47 +0000</pubDate> <category><![CDATA[All Posts]]></category> <category><![CDATA[Geriatrics]]></category> <category><![CDATA[Palliative Care]]></category> <category><![CDATA[Podcasts]]></category> <guid isPermaLink="false">https://geripal.org/?p=6987</guid> <description><![CDATA[The post <a href="https://geripal.org/stories-we-tell-each-other-to-heal-ricky-leiter-alexis-drutchas-emily-silverman/">Stories We Tell Each Other to Heal: Ricky Leiter, Alexis Drutchas, & Emily Silverman</a> appeared first on <a href="https://geripal.org">A Geriatrics and Palliative Care Podcast for Every Healthcare Professional</a>. ]]></description> <content:encoded><![CDATA[<div class="wpb-content-wrapper"><div class="vc_row wpb_row vc_row-fluid wpex-relative no-bottom-margins"><div class="wpb_column vc_column_container vc_col-sm-12"><div class="vc_column-inner"><div class="wpb_wrapper"> <div class="wpb_raw_code wpb_raw_html wpb_content_element vc_custom_1733357257157" > <div class="wpb_wrapper"> <iframe title="Libsyn Player" style="border: none" src="//html5-player.libsyn.com/embed/episode/id/34293345/height/90/theme/custom/thumbnail/yes/direction/backward/render-playlist/no/custom-color/00548f/" height="90" width="100%" scrolling="no" allowfullscreen webkitallowfullscreen mozallowfullscreen oallowfullscreen msallowfullscreen></iframe> </div> </div> <div class="vc_tta-container" data-vc-action="collapse"><div class="vc_general vc_tta vc_tta-tabs vc_tta-color-sky vc_tta-style-flat vc_tta-shape-square vc_tta-spacing-1 vc_tta-o-no-fill vc_tta-tabs-position-top vc_tta-controls-align-left"><div class="vc_tta-tabs-container"><ul class="vc_tta-tabs-list"><li class="vc_tta-tab vc_active" data-vc-tab><a href="#summary" data-vc-tabs data-vc-container=".vc_tta">Summary</a></li><li class="vc_tta-tab" data-vc-tab><a href="#transcript" data-vc-tabs data-vc-container=".vc_tta">Transcript</a></li><li class="vc_tta-tab" data-vc-tab><a href="#cme" data-vc-tabs data-vc-container=".vc_tta">CME</a></li></ul></div><div class="vc_tta-panels-container"><div class="vc_tta-panels"><div class="vc_tta-panel vc_active" id="summary" data-vc-content=".vc_tta-panel-body"><div class="vc_tta-panel-heading"><h4 class="vc_tta-panel-title"><a href="#summary" data-vc-accordion data-vc-container=".vc_tta-container">Summary</a></h4></div><div class="vc_tta-panel-body"> <div class="wpb_text_column wpb_content_element" > <div class="wpb_wrapper"> We’ve covered stories before. With <a href="https://geripal.org/storytelling-in-medicine-a-podcast-with-liz-salmi-anne-kelly-and-preeti-malani/">Liz Salmi, Anne Kelly, and Preeti Malani</a> we talked about stories written up in the academic literature, such as the JAMA Piece of My Mind series. We talked with <a href="https://geripal.org/storycatching-podcast-with-heather-coats-and-thor-ringler/">Thor Ringler,</a> who helped found the My Life My Story Project at the VA and beyond, and <a href="https://geripal.org/storycatching-podcast-with-heather-coats-and-thor-ringler/">Heather Coats</a> about the evidence base for capturing patient stories. Today’s podcast is both similar and different. Similar in that the underlying theme of the power of stories. Different in that these storytelling initiatives, the <a href="https://thenocturnists.org/">Nocturnists</a> and the <a href="https://www.pallstoryexchange.com/">Palliative Story Exchange</a>, are focused on clinicians sharing stories with each other in small groups to heal. There’s something magical that happens in small group storytelling. It’s that mixture of intimacy and vulnerability, of shared clinical experiences, that fosters a sense of belonging. We model that small group storytelling experience today. We discuss: <ul> <li style="font-weight: 400;" aria-level="1">The “origin stories” of the <a href="https://thenocturnists.org/">Nocturnists</a> Live Show and Podcast and the <a href="https://www.pallstoryexchange.com/">Palliative Story Exchange</a></li> <li style="font-weight: 400;" aria-level="1">The process for story creation and development, written in advance or not, feedback or not after the story, and the aims and goals of each initiative</li> <li style="font-weight: 400;" aria-level="1">And we each tell a short story, modeling the process for The <a href="https://thenocturnists.org/">Nocturnists</a> and the <a href="https://www.pallstoryexchange.com/">Palliative Story Exchange</a> for our listeners</li> </ul> These initiatives arose organically from clinicians as part of a journey away from burnout, moral distress, shame, and loneliness toward healing, wholeness, gratitude, and belonging. A journey taken one story at a time. One final note on the song request: About 20 years ago I took an epidemiology course as part of a Masters program. The instructor, <a href="https://www.hsph.harvard.edu/profile/earl-f-cook/">Fran Cook</a>, gave all the students a survey without explanation. We answered the survey and handed it in. One of the questions was, “Can you name a song by the Tragically Hip?” It later turned out the survey was a prognostic index designed to determine if the respondent was Canadian. –<a href="https://x.com/AlexSmithMD">@AlexSmithMD</a> Here’s a link to an <a href="https://www.cambridge.org/core/journals/palliative-and-supportive-care/article/palliative-story-exchange-an-innovative-storytelling-intervention-to-build-community-foster-shared-meaning-and-improve-sustainability/5EAA749D477C6C8E452B1E100E460944">article about the Palliative Story Exchange</a>.   ** This podcast is not CME eligible. To learn more about CME for other GeriPal episodes, <a href="https://geripal.org/cme/">click here</a>.   <hr />   </div> </div> </div></div><div class="vc_tta-panel" id="transcript" data-vc-content=".vc_tta-panel-body"><div class="vc_tta-panel-heading"><h4 class="vc_tta-panel-title"><a href="#transcript" data-vc-accordion data-vc-container=".vc_tta-container">Transcript</a></h4></div><div class="vc_tta-panel-body"> <div class="wpb_text_column wpb_content_element" > <div class="wpb_wrapper"> Eric <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=1120">00:01</a> Welcome to the GeriPal Podcast. I forgot what I say next, Alex. Alex <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=6401">00:06</a> Introduce your name. Eric <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=7385">00:07</a> My name is Eric Widera. I’m a little bit nervous. I’m sharing a story with you. Alex <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=12601">00:12</a> I’m Alex Smith, and usually you ask me who we have with us today. But we’re going to do it a little different today. Eric <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=18145">00:18</a> Throwing us off. I am off. Alex <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=23825">00:23</a> All right, first, we’re welcoming back Ricky Leiter, who’s a palliative care doc at Dana Farber Cancer Institute in Brigham Women’s Hospital and Harvard Medical School and is co-founder of the Palliative Story Exchange. Ricky, welcome back to the GeriPal Podcast. Ricky <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=38887">00:38</a> Great to be back. Thanks for having me. Alex <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=40743">00:40</a> We’re delighted to welcome Alexis Drutchas, who is a palliative care doc at the Massachusetts General Hospital and Harvard Medical School and co founder, also of the Palliative Story Exchange. Alexis, welcome to GeriPal. Alexis <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=53671">00:53</a> Thanks. Excited to be here. Alex <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=55447">00:55</a> And we’re delighted to welcome Emily Silverman, who is assistant professor of medicine at UCSF and creator and host of the Nocturnists Live show and podcast. Emily, welcome to GeriPal. Emily <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=66667">01:06</a> Thanks for having me. Eric <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=68195">01:08</a> So I’m excited. Obviously, I’m excited. I forget what I’m actually doing in this podcast. So we’re going to be talking about story exchanges to reconnect with medicine. But before we jump into that topic, we always start off with song request. Ricky, do you have the song? Ricky <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=82051">01:22</a> I do. I would love to hear “Ahead by a Century” by the Tragically Hip. Eric <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=87555">01:27</a> Why did you pick this song, Ricky? Ricky <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=89883">01:29</a> Well, as someone born in Canada, I feel like obligated to pick something by the Tragically Hip, sort of the music of my childhood. It was my first concert without my parents. And actually this song was the last song they played live ever after, you know, before their lead singer, Gord Downie, unfortunately died of a gbm. So has a special resonance for, I think, a lot of people who are Tragically Hip fans. Alex <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=114145">01:54</a> And you’ve been requesting, I think, the Tragically Hip previously, but we got denied. Eric <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=120261">02:00</a> So does Alex have an anti-Canadian bias? [laughter] Alex <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=124389">02:04</a> What? Ricky <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=124917">02:04</a> I will just say the Canadian listeners of GeriPal will very much appreciate this. Alex <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=130093">02:10</a> I’m married to a Canadian. Eric <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=131413">02:11</a> Oh. Alex <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=132485">02:12</a> She was born in Montreal. All right, here we go. Alex <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=171925">02:51</a> (singing) Eric <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=203225">03:23</a> Thank you, Alex. All right, I’m going to start us off with one of my few questions on here because we’re going to get to exchanging stories too, is medicine is an evidence based discipline. We like data, we like science. Give me number needed treats. Give me the relative risk reduction. That’s medicine. And stories are anecdotes. It’s not science, it’s not data. What’s the value of stories in medicine? I’m going to turn to Emily to start us off on that one. Emily <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=239705">03:59</a> Medicine is both a science and an art. We definitely draw on the sciences, on biomedical science, on clinical trials, on pharmaceutical design and all sorts of things like that. But at the end of the day, I actually view medicine more as an applied science. So we take that science and we apply it to something that’s very messy and chaotic, like a human being or a community or a population. So I think just as much as we focus on the science and the evidence, it’s important to think about the art of how we apply that to people and the relationships and all of the great fun stuff, the stories that unfold in the exam room alongside the science itself. Eric <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=284605">04:44</a> Yeah. And I gotta ask Emily, is that why you started Nocturnist? I encourage all of our listeners to listen to the Nocturnist. You’ve been doing it for a while too, right? Emily <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=297285">04:57</a> Yeah, it’s been about eight years. I’ve been running a medical storytelling program called the Nocturnus. And it was born when I was a medical resident at UCSF Internal Medicine. And I had always dreamed about being a doctor from the time I was a little kid and started to hit a wall, started to feel burned out, started to notice that I was spending a lot of time sitting at a computer screen and not as much time as I had hoped, sitting with my patients and getting to know them and also realizing that medicine had changed a lot in the last 10 or 20 years. When I spoke to physicians who had been practicing back then, it seemed that the sort of modern cohort of medical students and residents and young physicians were facing a different set of challenges, a unique set of challeng challenges. And I wanted to create a place where people could come together and talk about that and to do it in the storytelling format, because stories are really fun. And I had always loved the arts and just found that storytelling was a great way not just to explore some of these feelings and emotions and challenges that were coming up for us in the profession, but also to Build community and to build a sense of cohesion and togetherness and joy in medicine. Eric <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=381011">06:21</a> And what did that initial story exchange look like? Was it at somebody’s house or. Emily <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=387395">06:27</a> Yes. So the very first show was in this Victorian house. There was a living room that you could rent. It was like kind of a co op with this common space that different groups could rent for events and meetings and things like that. So I think I spent like 90 bucks to rent the living room for an evening. And we got, I want to say, 30 or 40 different folks to come and sit in the audience. And we had six or seven different people stand up and tell stories related to a theme. And that was the very first show. It was very haphazard. There was not a lot of preparation or coaching. It was a little bit more open mic style. And over time, it evolved into much more of a polished production where we would choose a theme, put out a call for stories, receive submissions, select the storytellers, and then put them through a really involved coaching and story shaping process. And then the theaters just kept getting bigger and bigger. And then the podcast spun out from that. So it’s kind of been off to the races since then. Alex <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=455935">07:35</a> Can I interject here? When I was a UCSF med student a quarter century ago, I was behind by a quarter century. I can remember two instances of storytelling in training or in education, I guess. One is Rachel Remen’s healer’s art program, where we would tell stories to each other in small groups. And another was just my friend Bimla Schwartz, who’s now chief of General medicine at Zuckerberg San Francisco General. We just have people over to share stories. And one thing that distinguishes your program, Emily, is like, the idea of the audience and the podcast and, like, putting it out there for public consumption. I wonder how you made that decision. Emily <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=500625">08:20</a> It’s funny, I don’t know if it even was a decision per se. I think it started off from a need, a hunger in the community. People really wanting to engage with their work and their community through this more artistic or storytelling format, since we were also fatigued from sitting in front of computers. And then as it grew, I just was viewing the entire enterprise as a love letter to health care. I feel like, you know, even before the pandemic, certainly during the pandemic, we talk a lot about the grit and the resilience of healthcare and healthcare workers and, you know, the amazing drive that they have and the amazing ability that they have to connect with people. There’s obviously a lot of flaws in the healthcare system. As well. But I really wanted this project to be a love letter to that community. A love letter kind of back to my community. And as it turns out, the only thing better than receiving a love letter that’s specifically written for you is intercepting a love letter and sort of voyeuristically reading that love letter and getting a window into a world that isn’t yours. And so I find that a lot of the people who are outside medicine or who are maybe healthcare adjacent, really enjoy listening to the podcast and coming to the events less because they feel like the events are directly targeted toward them. Although increasingly we are starting to bring in more patient voices, but more because there is some behind the curtain feeling of, you know, getting to step in the room and even if you only understand, you know, 85% of what’s said, because there’s a little bit of jargon, some inside talk that. That gives it some intrigue and helps people understand, like, who are these people and what is this subculture? Because we all interface with it at the end of the day as patients. So this is an opportunity for people to access it through a different form. Eric <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=614055">10:14</a> And you have a call out right now, right, for uncertainty. Is that a theme that you’re working on? Did I read that right on your page? Emily <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=622247">10:22</a> We are, we were very happy to receive a grant from the ABIM American Board of Internal Medicine to develop a podcast series on the topic of uncertainty in medicine. And actually, just before this, I got off a two hour creative production meeting where we’re just kind of like putting the episodes together and trying to figure out how to make that. So that’s been really fun. Eric <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=644043">10:44</a> So if listeners want to submit something, do they still have time to submit? Emily <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=648875">10:48</a> We’re a little late in production, but never say never. I think if you do have a burning uncertainty story, you can reach out to me at EmilySilverman@ucsf.edu and we do have some open holes and gaps in the series, so there might be a chance. So, yeah, send me your uncertainty story if you’ve got something that you think could be a good fit. Eric <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=670305">11:10</a> Yeah, great. And then Ricky and Alexis, I’m wondering kind of the same thing from your perspective, how did you start thinking about the palliative story exchange? Ricky <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=683209">11:23</a> Yeah. So rewind a few years. And I was interviewing candidates for our clinical fellowship and interviewed Alexis, who had been like family medicine doc before, done all kinds of cool things. It’s one of those applications you read and you’re like, oh, wow, like, if I had applied, I would not get in anymore. You Know, and was just so excited to meet her because she had all this stuff about narrative and writing, and that’s, like, super important to my career. So we met, hit it off instantly. Spent, I think, the whole time talking about narrative. She ended up matching with us, which was awesome. And we were on service together one weekend, I think, sort of walking back to the office, one of those conversations, you know, attending fellow, just kind of debriefing. And Alexis said, you know, wouldn’t it be great if we could get a whole bunch of people together, someone’s backyard, open up a bottle of wine and tell stories as a way of connecting, you know, like using our shared love of writing and narrative and all this stuff? And they said, yeah, that would be amazing. We’ve got to do that. I mean, it’s Boston in the winter, so we’re going to wait until the spring to go to someone’s backyard. But that was. That was January 2020. So, you know, a few weeks later, world totally shut down on us. I was, you know, in the ICU over at Brigham and Women’s leading a Covid sort of palliative care team. Alexis was staffing the end of life unit at Mass General. And we were kind of texting back and forth and was like, you know, remember that storytelling thing that we had talked about? We should do it, but do it on Zoom. Because we were feeling totally disconnected and isolated and scared and grieving and like, all of the things. And so we put it together. We had, you know, it was a Monday night in June of 2020. We had, I think, 40 people log on to Zoom. It was like the most people we had seen in ages, even virtual. And our call was very simple. It was like, write about what you’re taking home with you at night, what you can’t stop thinking about. And we had these amazing stories. Like, you know, there were stories about what it was like to care for patients in the COVID ICU and dying of COVID and all of that, which were incredibly powerful. And then someone told a story, I’ll never forget it, of like, going back to the grocery store in person for the first time, and how totally bizarre it felt. So a lot of laughter, a lot of tears. And what we kept hearing from people afterwards was like, I felt so connected to everyone in a way that I haven’t felt in months. You need to keep doing this. So we did. And I think Alexis can kind of pick up the story from there, but that was kind of the sort of the birth of the palliative story. Exchange. We’re kind of a Covid baby. Alexis <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=848715">14:08</a> Yeah. And just to say it’s us. And Rachel Rush, who is a pediatric social. A palliative care social worker now at Colorado. So the three of us have really spearheaded this over time. And I think there’s some really beautiful parallels between your work, Emily, in terms of this idea of a love letter to clinicians. I think so much of the time, we’re trained to think of stories as patient stories and think about our impact on the stories. How are we hearing the stories? What are our biases? And I think overall, we lack the ability to truly sit with suffering together in medicine and palliative care, especially in the setting of COVID and caring for those that are dying. There aren’t a lot of institutions, places to turn to, to share and make meaning. One of my favorite quotes that we used in our article is one by Toni Morrison where she talks about, you know, narrative creates us at the moment that we’re. That we’re creating it. And so this idea of us creating the meaning in our work, like, what is the meaning of seeing all the suffering that we do? How do we take that home? How do we. How do we make any kind of sense of that together, was a beautiful thing that we’ve noticed for palliative care clinicians interprofessionally across the board. And so how we’ve done it since is we were either invited by particular institutions, like we’ve been to UCSF or the Palliative Care Fellowship in Toronto, or much larger conferences like the Memorial Sloan Kettering World Hospice Day. And we send a call out for storytellers. So it’s all volunteer. And rather than themes, we ask them, you know, what can’t you stop thinking about? What are you bringing home with you? What are you bringing to work with you? And really, our one rule is for it not to be a patient case. We really want it to be more inflect, more reflective. And then we have people sign up online, we create an order when we have more people than we can handle in an hour, an hour and a half. We just. We are really trying to be mindful of the breadth of experience people bring, you know, to be sure that we have chaplains telling stories, social workers, physicians, apps, et cetera. And then we try to vary the tone of stories. We ask people sort of overall, what’s the tone? So it’s not just overall sad and horrific. We try to have some balance between things, and then we take time in between to reflect as a group, and we set up sort of some community agreements and ground rules before we begin. And we’ve been sort of surveying folks over time and have really grown in our community and are sort of starting pilot sites across the country to start instituting sort of palliative story exchanges at different healthcare institutions, different divisions of palliative care. Eric <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=1011901">16:51</a> So I got a question. So it sounds like, Emily, am I correct right now, the nocturnists, you also not only ask for those stories, but you help kind of like a TED Talk a little bit, refine those stories over time. Is that right? Help build that story or more like the moth does. Edit the story of the moth. Alex <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=1030383">17:10</a> Yeah. Emily <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=1031975">17:11</a> For our live shows, our model was to do story development with the storytellers. And the storytellers told us universally that that was really valuable for them because that Toni Morrison quote is perfect. Like, sometimes you’re not really sure why you’re telling a story or what the story is really about. And so the story development process is half, you know, creative and editing, but it’s also kind of half therapy and just figuring out, like, what is it that you’re trying to say? So we recruited some amazing story coaches to help with that. And so for the live shows, by the time the person steps out on stage, they’ve gone through this really extensive story coaching process. But then when Covid hit, we couldn’t do the live shows anymore. So we started a different format which was much more unscripted, improvisational, spontaneous, and raw, which was our Covid audio diary series. In a similar vein to the work that the two of you are doing, we just said, send us a voice memo. Tell us who you are, where you are, and what’s going on today. And for the first three months of the pandemic, that very first wave, we got several hundred audio diaries from clinicians across the United States and stitched those together into this sort of audio verite documentary series, which we called Stories from a Pandemic. And since then, we’ve been playing a lot more with that more raw, improvisational voice memo format. There’s pros and cons, I think, to the scripting and the massaging and the shaping and the spontaneity. And it just depends on what the moment calls for, I suppose. Eric <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=1128915">18:48</a> Yeah. How do you think about that, Ricky? Ricky <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=1130443">18:50</a> For exchange, we focus on the storytelling and the story listening. And so we have everyone write their story down. And we’re very explicit that we don’t want them to focus on the performance of it. It’s really about sharing the story itself. So we want them to read the story. There’s no preamble. You know, there’s really lower the activation energy because we want to be as sort of participatory as we can be because we heard that from people, they were like, oh, I’m, you know, understandably, like, nervous about sharing my story, even though these are my close colleagues. And so we said, we’re just going to have you write it down. Like write it down and read the story. And that works really well. We have recently, for our larger events, and even not as large events, we have people send us their stories. We want to make sure. And we’ve never had this before, but there’s like nothing inappropriate there or that would be otherwise offensive or show any sort of bias because we think that could do real harm. And so we certainly don’t want to have a story that shares that. We’ve never had it. But in the process, we now sort of lightly, we don’t edit their story, but we give suggestions. And most of the time the suggestions are the same, which, you know, are. Get more personal. You know, like, this is great. And tell us more about what you’re feeling and your reaction to this. And then it’s amazing to see the stories, like, come alive when they’re read. Like, we now know the stories that are going to be told. And even so, there is so much power in hearing the storyteller read. Read the story. Eric <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=1224655">20:24</a> Yeah, I can imagine it’s this balance between kind of the raw feeling that’s coming out with an unedited story and a really good, polished story that just resonates with people. Alexis <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=1236275">20:36</a> Yeah. I think either way, the powerful part that we’ve noticed is when it gets more personal. Because I think again, that we get so good at telling other people’s stories. And I think that’s where a lot of the vicarious suffering occurs and happens is it’s like we’re not seeing where we are in that or where our family is or where our colleagues are. And I think we’re asking people to turn inward in a way that their training has never asked. And so it is interesting to think that the last few times we’ve given feedback, each time it’s like, where are you in this story? And can you bring that out? Eric <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=1271665">21:11</a> We can take this time to share stories. And I’m actually going to be the guinea pig, because I’d love to hear how you would approach this. Like, what does that style look like? So I’m going to start off with a pallavic story exchange style. I Actually wrote my story down. I’m not going to tell you what it is. Right. I don’t tell you what it is before. Ricky <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=1292513">21:32</a> No preamble. No preamble, preamble. Eric <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=1294585">21:34</a> Just jump into it. And I’d love to hear kind of what you do after that. So here’s my story. Alex came to my office excited to share the news that we would be all sharing a short story for this podcast. I was hesitant I put it off. I’m not sure why the stories are all there, but I guess it feels overwhelming to pick. Almost like describing a drop of water while standing in front of a raging waterfall. Should I share a story about the hospice patient whose cancer miraculously went away, but that meant we would have to send him back to his unsafe living environment where all of his other health issues would blossom? Maybe the alternative of the patient whose family hopes for a miracle in the face of certain death, for only that death to occur as anticipated by all. Or maybe the guilt I feel over not stopping a procedure that ended in a technical success but failed to achieve a patient’s goals. The more I think about the stories, the more they become like a drop of water in a waterfall, becoming indistinguishable for one another. I feel like a bad palliative care doctor for not keeping the stories distinct. I’m overwhelmed. I tell Alex I don’t have a story to share. What are you doing, Ricky? I see some handling. Ricky <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=1369105">22:49</a> We encourage people and I think on zoom, it’s so important, right? Even in person too, you want feedback as the storytel and it can be so affirming to them. So we encourage people like claps, snaps, jazz hands, like use the zoom. All the features, the floating. Eric <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=1385797">23:05</a> The interesting with zoom is I didn’t hear the snapping because I think zoom, actually. Ricky <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=1390845">23:10</a> Yeah, but you can see it. Eric <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=1394365">23:14</a> I don’t have my glasses on, so I just move it. Ricky <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=1397045">23:17</a> So we encourage people to use the chat and I think what we would do there, I mean, you know, Eric would. I love that story. And I think it really spoke to me and I think it speaks to that feeling that I have. And I imagine others do too. When we’re starting these story exchanges be like, what am I going to write about and what’s the story going to be? And there is that sort of sense of, on the one hand, I have all these stories to share, but where do I start and where do the details, they all blend together. And yet all of those examples you shared are ones that I think I feel viscerally as a palliative care. You know, inpatient palliative care, Doc. Like, I’ve had all of those experiences, and they’ve all sat with me, and so I loved how you. You mentioned them all. And then the idea of the drop and the waterfall was just perfect. And I’m wondering, like, the rest of the group, like, what were. What were your reactions to Eric’s story? Eric <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=1450729">24:10</a> And just pause right there. Ricky. Is this what you’re doing during the story exchange? Ricky <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=1454209">24:14</a> Exactly. Exactly. Eric <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=1455897">24:15</a> All right. Unpause. Keep on going. Ricky <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=1458635">24:18</a> Yeah. Alexis <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=1459075">24:19</a> And just to point out, like, we always model one of us as facilitators, what feedback could look like. I think when Alex came to ours in Montreal, you said something like that we show each other positive regard always. And that’s really what it’s about. We’re not critiquing each other’s stories. We’re not saying if it was good or bad. It’s really about what resonates, what’s universal here. Eric <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=1481365">24:41</a> And so that was my medical training is about telling me, is this a good or bad? And how can I improve? Alex <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=1486741">24:46</a> Yeah, I was going to share my feedback, which is, I think you failed the palliative story exchange. It’s supposed to be about one patient story. Eric <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=1497365">24:57</a> That’s what I need. I feel better now. Alex <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=1501005">25:01</a> I get kicked off the zoom. Eric <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=1503445">25:03</a> God, I needed that zeta maskism that medicine teaches us. Alex <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=1508895">25:08</a> I can. Eric <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=1509607">25:09</a> I can sleep tonight. Alexis <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=1515375">25:15</a> Shut down now I’m better. Eric <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=1519095">25:19</a> The world is back to normal. There you go. Alexis <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=1521903">25:21</a> Yeah. I did really feel when you said something like, I feel like a bad palliative care doctor to not keep them distinct. I feel like that after a week, I was just on service last week, and by the end of the week, thinking, you know, did I have an impact? Who. Who did I care for? Did their life, you know, in not remembering the details, it feels like somehow we’re saying that they didn’t matter, when in fact, they do matter, and they have mattered. And I. That really resonates with me that. Eric <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=1550323">25:50</a> That line that you said, Wonderful. I’m gonna pause real quick. Emily, for nocturnists, is there anything that happens after the story like this? Emily <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=1560695">26:00</a> Well, sometimes we go out and have drinks and food, so that happens. Eric <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=1567215">26:07</a> So there’s like a verbal clap sharing. That’s the feedback, but there’s no, like, exchange of thoughts, like, what’s happening here and what I got from Alex. Bad Eric. Emily <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=1580351">26:20</a> Yeah. At our live shows, there’s a backstage. And so we do nerdy theater exercises backstage to warm up our energy. We do Icebreakers. We get to know each Other, I think the. A cohort of storytellers who are performing that night build their own little mini community as storytellers. And I’ve seen, you know, people walk off stage after telling their story, like into the arms of another storyteller, and people telling each other how proud they are. And so I think there’s definitely a feeling of warmth and receptivity and support backstage from the cohort of storytellers, obviously from the audience, any family and friends who attended the show, colleagues, people, you know, often will have people approach them, them to offer reflections about the story. And then for many of the stories, we sit down weeks, even months after the story is performed to unpack the story further through a conversation. And so one of the formats of the nocturnist is you hear the 10 or 15 minute raw story clip from the stage up top, and then there’s a music break. And then we sit down and we kind of meta talk about the story and kind of just let the conversation be organic and go where it goes. So it’s kind of like the primary source and then the commentary. And so that’s been a really fun format. Eric <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=1662155">27:42</a> That’s awesome. And then I think what’s so cool. Alexis <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=1664683">27:44</a> Here is the overlap and the distinctness, you know, that there’s like this universal overlap of community building and vulnerability, and there’s a distinctness in terms of the format. And I just love that. I love that because it doesn’t mean that one is for one. Just the variety allows people in medicine to connect with the impact of their work in their life and vice versa. And there’s something really beautiful about that. Eric <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=1690695">28:10</a> And then, Ricky, how would you transition to the next story? Ricky <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=1693471">28:13</a> Yeah. So we would give time for reflection. Oftentimes the reflection naturally decrescendos. And then we’ll say, and now I’m going to pass it on to Alexis, who will introduce our next storyteller. Alex <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=1707529">28:27</a> Yeah, which is we’re going to do now we’re going to pass it on to Alexis, who is our next storyteller. Alexis <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=1713145">28:33</a> Introduce myself. All right. It was the kind of day that almost seemed made up. A clear cerulean blue with an angle of light that bounced off the gold State House dome. The contrast between this view and the drab hospital walls as I walked into my patient’s room was jarring. I’ll call my patient. Suresh. His lymphoma had relapsed, and palliative care was consulted to help with his symptoms. But despite the havoc cancer was causing, he had a warm, peaceful quality about him. He sat in his recliner by the window. After learning about his pain, I asked how he spent his days. His face immediately lit up. Suresh was a barge captain, a dangerous and thrilling profession that led him to transport goods across international waters. His eyes glistened as he described the joy he felt at sea. Mornings alone on the bow, feeling the salted breeze, calm nights on the deck, looking at the stars through the stunning darkness. The freedom he exuded was palpable. Having spent years of my childhood living in Japan and Hong Kong, my family’s entire home had crossed the Atlantic on cargo ships four times. Maybe Suresh had captain one. Every winter we hosted US Navy sailors who docked in Hong Kong for the holidays. I remember sharing stories of our adventures, who saw or ate what and where. I loved these times, the freedom of being somewhere new, the way our identities shift and expand as we grow and experience. When Suresh shared his stories of the ocean, I was back there, too. My mind returned to the stark hospital room, his temples sunk and his muscles in his legs narrowed as the cancer took over. Still, I could so easily conjure him as the robust man standing on the ship’s bow. The realization of all he’d lost. It hit me not just in the comparison of who he was earlier and now, but in the realization that we all sit so precariously at this threshold. I know who you are now is not the person you’ve been, I said to Suresh. With that, he reached out for my hand and started to cry. We looked at each other with a new understanding. I saw him not just as a frail patient, but as the person who embodied a full life, as someone strong enough to sail across the ocean. I see now that I saw myself in him. Maybe that’s what affirming someone’s dignity entails. To truly see their personhood means that we have to see our own aliveness reflected in theirs, and vice versa. It’s been over a year now since I took care of Cresh. A few times a year, my wife and I take our son to the harbor in South Boston to see the planes take off and the barges leave the shore filled with containers. And every single time I think of Cresh, I picture him sailing on the waves, free as he’ll ever be. Eric <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=1863435">31:03</a> That was beautiful. Okay, I’m gonna pause real quick. And now I’d like to hear from them. Like if this was a live nocturnist podcast. So you have a little bit of musical interlude, right? And then you said maybe a little sit down to discuss. Is that right? Emily <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=1882235">31:22</a> So thank you for sharing that story. It was beautiful. One thing I’m noticing is that the first two storytellers wrote their stories down and read them, and that’s wonderful. And it’s not the format that the nocturnist uses. So the nocturnus doesn’t script the stories word for word. People don’t read off a page. It’s. Think of it less as a literary reading and more like a theatrical performance in the form of a monologue, where the monologue is roughly outlined but not scripted word for word. So when a storyteller steps on stage, they might have a rough sense of where the story begins, where it ends, and what are the major beats. Narrative beats, kind of like the skeleton, I guess, of the story. But then it’s not until the moment and the night of that you fill out the skeleton with all the, you know, flesh. That analogy was more morbid than I meant for it to be. Alex <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=1942685">32:22</a> Geriatrics Palliative Care Podcast. Emily <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=1944461">32:24</a> There we go. Alex <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=1945021">32:25</a> Roll with it. Emily <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=1945533">32:25</a> Yeah, you’re not afraid. You’re not afraid of a good skeleton metaphor, but you did say that there’s. Eric <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=1950517">32:30</a> A little bit of sit down, like a conversation about the story afterwards. Emily <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=1955005">32:35</a> Well, let me finish about improv, and then I’ll get to the sit down. So the reason that we embrace this format is because it does allow for a little bit of feeling into the moment and that embodiment and, like, really tapping into what the audience needs and wants in that moment. So I’ve had certain stories that felt really serious in the coaching sessions and then weirdly came out, like, really comedic in a way that worked. And then stories that have been the opposite that have felt like they were a bit more playful and comedic, but then on the day of actually, the way it was received and the way the energy was in the room, it came out feeling a lot more serious. And so I think one thing we really like about not having it scripted word for word is the opportunity to kind of flex into that moment and just be present and kind of try that out. So that’s one difference. And then for the sit down, it’s not usually sit down on the stage that night in the theater at the show. It’s usually the show is the stories alone. And then weeks or months later, we’ll have a zoom conversation just like this, where I’ll sit down with the storyteller and we’ll say, you know, how was it for you to get up on stage and perform your story? And let’s talk about the story development. Process and let’s talk about your dad or whatever the topic was of the story. And it’s a bit of a longer form. So the container of a 10 to 15 minute live story is very specific. Like you don’t want to cram a whole life memoir into a 10 to 15 minute story. Like you really want to focus more on a moment, but the conversation is more spacious and so we can get a little bit more into the person’s life story and kind of go off on tangents. So that’s the format that we use. Eric <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=2057665">34:17</a> Fascinating. Alex <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=2058753">34:18</a> A quick comment, because we have to move on. We still have three stories left to go. As my prep work for each podcast, I do a quick Google search of people and Alexis, I saw that you identify as a writer, self identified as a writer. And I saw that shine through in your story. Eric <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=2071987">34:31</a> The colors. Alex <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=2072667">34:32</a> Yeah, Cerulean blue, the choice of words, the specific words that fit, set up the story about the sea and precariousness. The exact right word at that moment. And I think it’s interesting you identify as a writer, not a storyteller, per the comments that Emily was just making. And we should move on, I think, right? Eric <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=2096018">34:56</a> Yes. Emily’s yeah, Emily, I think you’re sharing the next story. Emily <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=2101794">35:01</a> Sounds good. So I didn’t write mine down. So I guess this is true to my promise for improvisation, but I wanted to make my story a little bit of a love letter to palliative care. I’m an internal medicine trained physician. I’m not a palliative care physician, although I still have thought about going down that route. But anyway, this is a story about palliative care and my mom. So my parents, I’m an only child and my parents were living in Florida, in Miami, which is where I grew up. And they were living in the house that I grew up in. And for about five years, my mom was declining from a dementia illness, we think something Parkinsonian. Maybe it was dementia with Lewy bodies, but. But not exactly sure. Some diagnostic uncertainty there. And so she was declining. And I lived in California, which was far away. So I would visit as much as I could and, you know, do my best to take care of her and advocate for her as I could. But then when Covid hit, I went a year without seeing my parents. And that was due to travel restrictions and things like that. And finally when we were able to travel again, I flew to Florida. I walked into my parents house and I came upon a scene that was really different than it had been in the past. And I just realized that There was a lot that had happened that I had missed. So the patio outside was completely overgrown with weeds. I had never seen that before. It was, you know, normally it was completely kept clean. And my mom was in really awful shape. She was more frail than before. She wasn’t eating. She didn’t want to get up out of bed or out of a chair. And my dad and a caregiver that was helping out were really trying to push her and persuade her to get up and just transfer into a different room at least every day. And she was starting to get more and more resistant to doing that. And then most upsetting was that she was having these pain episodes. And I still don’t really know what they were, but there were these kind of intermittent pain episodes where she had a lot of pain in her legs and it would last for like minutes. And she. There was a lot of grimacing. It was just really upsetting to see. And I turned to my dad and I said, I think mom needs palliative care. And he didn’t really know what that was. And she did have a primary care doctor. And I was trying to figure out what to do about engaging her. Actually, what I ended up doing first was I’ll never forget sitting on the couch next to my mom. And I called up my friend who is a palliative care doctor and described the situation. And I just remember he said, I think your mom needs something long acting. She needs like some methadone or something to get ahead of the pain. And then I asked the primary care doctor about methadone and she was like, I don’t do methadone. Which I don’t blame her. So anyway, long story short, I was able to call and get a palliative care team. It was a home based pallia program. It was all covered by my mom’s insurance. And they arrived one day. It was a multidisciplinary team. They came into the house. It was, I don’t want to say it felt like a party because obviously this was not a happy occasion, but it was just so nice to have some people and some energy in the house. It felt like there was some stagnation that had been happening in the house. There was a doctor, there was a nurse, there was a chaplain, there was a social worker and there was my dad and there was me and my husband and my mom. And I remember we were all sitting around the kitchen table and I just felt this feeling of relief, like it’s going to be okay. And they started to visit periodically. They got on Top of her pain. And right before I left Florida, I remember sitting on the couch next to my mom, and my husband was sitting on the floor watching TV just a few feet in front of us. And my mom liked my husband, but I don’t know, there had always been some distance between her and my husband. I think she. I’m an only child and kind of felt possessive over me and just didn’t love that. I was now, like, married and growing up and starting my own life. And I had always hoped to see some more warmth from my mom to my husband. And so I’m sitting on the couch, and she’s finally having her pain under control and feeling a bit better. And she looks at my husband, and my husband turns around and says something to her, and my mom looks at his face, and she goes, oh. And I’m like, what, mom? And she’s like, oh, oh. Like she’s having an epiphany or something. She’s like, your face, your face. And she looks at my husband’s face. She goes, your face. It’s so comforting. It’s like a bowl of soup. And my mom is not a poet. She doesn’t really speak in metaphor. But I knew exactly what she meant about a bowl of soup, because my husband does have this, like, really warm face. He’s got a beard. And then she kept going, and she was like. And not just any soup. Not like a thin, brothy, you know, chicken soup. It’s like a hearty soup, like a stew. And she just went on and on. And I had never heard her talk like this before, like, in metaphor also. It was just a really unusual outburst of love and affection for my husband, who had been so wonderful supporting me and supporting her and kind of being there. And it was just this really beautiful moment. And I feel like that moment would not have happened if the palliative care team hadn’t gotten everything in order. So several weeks later, my mom did end up passing and did so in a state of peace. And ever since, I’ve just been eternally grateful to the palliative care team and the palliative care discipline for what they did for my mom. So thanks to everybody listening who does this great work. Eric <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=2449755">40:49</a> Thank you. That was wonderful. Truly. On theme of the love letter for the for the Dr. Nest, I’m struck. Alex <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=2456533">40:56</a> By the complexity of emotions that you feel at that moment, that central moment in the story when your mom says that your husband’s face is comforting like a bowl of soup. You know, it’s both that, like, love that Impending loss that, like, wishing for more, that their relationship had been better. The humor, you know, and that strikes me that that’s one of the things that makes a great story great, is the sort of richness and complexity of those flavors in that story. Ricky <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=2484995">41:24</a> I also think, like, the unexpectedness, like, you know, I did not see it going in the direction of soup. And then when you named it Emily, it felt so right that it just. It was a beautiful way of tying this story together. Eric <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=2497963">41:37</a> I also like hearing the differences between the kind of telling the story without the piece of paper in front of you and telling the story with the piece of paper and kind of the differences and how that story arc is forming, how it sounds to the ear. Maybe we can try the paper again. Ricky, do you have the paper? Do you have a story to tell via pal story exchange style? Emily <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=2519365">41:59</a> Sure. Ricky <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=2519869">41:59</a> Okay. It was late on a Friday afternoon in December 2019. Dark and cold, but blissful in our pre pandemic ignorance. We had been following a woman who was in renal failure from refractory myeloma. She wasn’t a candidate for dialysis, and she was dying. Sam, my fellow, and I took the elevator upstairs to the hospital’s top floor. Both of us were just a few hours away from our winter vacations. My mind wandered. The patient’s daughter was sitting vigil by her bedside. Sam sat down in front of her on the foot of the bed. I took my usual seat on the trash can. The daughter was filled with anticipatory grief, regret, and anger. Sam did a beautiful job responding with empathy and complex reflections. I scribbled mostly illegible notes so that I could give her specific feedback. After we walked out, I briefly lost focus, daydreaming about my impending moments of solitude on the ski slopes. I zoned back in when the patient’s daughter told us. It had been a rough year. All of this with my mom, of course. And a friend got sick through instinct. We both did the palliative care head tilt. Mmm maneuver. And then my frog died. Frog died, I wrote, not really thinking about it. Perhaps a more experienced palliative care clinician would have leaned into it. Tell me more or I’m hearing that your frog is really important to you. What else feels important right now? We eventually moved on to the next topic. Missing an opportunity for connection, I suppose. We talked about the dying process and what she could expect for her mother. We hugged after we left the room. Sam turned to me. Did she say her frog died? Yep. We tried to debrief, but we really couldn’t do it. I’m not particularly proud of what happened next. Like a true research fellowship trained palliative care physician. That night I scoured pubmed for data on the efficacy of support frogs. And they don’t tell this story to poke fun at our patient’s daughter. Far from it. But it was an encounter that stayed with me in the years since. I’ve started to notice more and more support frog moments. Those moments that outside of a palliative care encounter, would seem totally outrageous. And yet when we’re in the middle of them, locked in and empathetic, they make perfect sense to us. And I think it’s okay to find the humor in our work. It’s okay, perhaps even necessary, to laugh a bit together at the occasional absurdity of what we all do as palliative care clinicians, particularly after the years we’ve all had, I think we could all use a support frog or two. Eric <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=2669555">44:29</a> That was fabulous. Alex <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=2671925">44:31</a> Speaking of Ricky. Alexis <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=2676205">44:36</a> I think it’s cool to point out that like the we, we also have done some live events at conferences and such, and I think what we found. We were worried about asking people to read their story, thinking would it be boring compared to more performative experiences? But I think a lot of people’s cadence and emotion comes up whether they’re reading in person or not. You know, audience members cry like you see a lot on Zoom and it can be connective, even for those who know and work together really closely. I think we always come out learning something new or something unexpected about those that we have felt close to already or those that we don’t even know. So I think that’s a cool similarity. Even though the format is different, you still feel a lot. Eric <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=2722385">45:22</a> Yeah. Well, I wonder, since we all had a chance to share a story, maybe Alex, instead of the song, you can end with your story. Alex <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=2731155">45:31</a> Sure. Here we go. And I’m going to violate the precept of no preamble. I shared this story with my wife, who’s my story developer. You know, vulnerable story, my writing. I share it with her and her first comment to me is, alex, you have to stop putting two spaces after the period. Yes, wholeheartedly agree. Eric <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=2751379">45:51</a> Apparently me and Alex cannot follow directions. Alex <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=2754563">45:54</a> No, we’re terrible. Eric <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=2755595">45:55</a> No preamble. Alex <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=2756781">45:56</a> Here’s my story. It’s called pronounced. The call from the hospice nurse came at 4:30 in the afternoon. Can you come over to the unit and pronounce? Alvin Thomas, have you called the family? I asked. I was only covering the hospice unit for the day. I didn’t know any of the patients, the nurse replied. No friends, no family. Pushed everyone away. Homeless, no one to call. I walked from my office to the hospice unit in the yellow sun of a fall San Francisco day. Room two, called the nurse. I closed the door behind me. His body lay on the hospital bed. Wispy gray hair, emaciated, scarred, quiet. I placed my stethoscope on his chest. Silence. I felt for a pulse. Absent. I shone a light in his eyes. Pupils were fixed. I squeezed a finger. Nothing. I thought of my son at daycare, how he’d squeezed him goodbye that morning. I hope Alvin Thomas had been loved. I hope he had been held by his mother, swaddled and hugged tight to her chest, rocked and sung to and loved unconditionally. I held his hand, squeezed a little. Time of death 4:45. Alexis <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=2827129">47:07</a> You’re going to make me cry here, Alex. Seriously, that was. Yeah, yeah. I mean, how can we all not think of our own kids here and those we love? Eric <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=2837875">47:17</a> Well, I want to thank all of you for joining on this podcast. Thank you for the stories. Thank you for the things that you’re doing so we can share these stories and hear other people’s stories too. Mockingly. I started off with the idea that medicine is about data and science, when in truth, it’s the stories that make meaning. So thank you for making so much meaning and thank you for being on this podcast. Ricky <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=2864013">47:44</a> Thanks for having us. Alexis <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=2865381">47:45</a> Thank you Emily thank you. Eric <a href="https://grain.com/share/recording/8a6d0b09-faf5-49b0-84be-88c8af81fb15/WMmD5JIF77HaQ8Fr09b1WXOK04kAmh4b2B2TMirY?referrer=docx&t=2868085">47:48</a> And thank you to all of our listeners for your continued support. </div> </div> </div></div><div class="vc_tta-panel" id="cme" data-vc-content=".vc_tta-panel-body"><div class="vc_tta-panel-heading"><h4 class="vc_tta-panel-title"><a href="#cme" data-vc-accordion data-vc-container=".vc_tta-container">CME</a></h4></div><div class="vc_tta-panel-body"> <div class="wpb_text_column wpb_content_element" > <div class="wpb_wrapper"> <h3>This episode is not CME eligible.</h3> </div> </div> </div></div></div></div></div></div></div></div></div></div> </div>The post <a href="https://geripal.org/stories-we-tell-each-other-to-heal-ricky-leiter-alexis-drutchas-emily-silverman/">Stories We Tell Each Other to Heal: Ricky Leiter, Alexis Drutchas, & Emily Silverman</a> appeared first on <a href="https://geripal.org">A Geriatrics and Palliative Care Podcast for Every Healthcare Professional</a>. ]]></content:encoded> </item> <item> <title>Coping with Serious Illness: Danielle Chammas and Amanda Moment</title> <link>https://geripal.org/coping-with-serious-illness-danielle-chammas-and-amanda-moment/</link> <dc:creator><![CDATA[Alex Smith]]></dc:creator> <pubDate>Thu, 21 Nov 2024 08:00:41 +0000</pubDate> <category><![CDATA[All Posts]]></category> <category><![CDATA[End-of-Life]]></category> <category><![CDATA[CME Eligible]]></category> <category><![CDATA[Podcasts]]></category> <guid isPermaLink="false">https://geripal.org/?p=6976</guid> <description><![CDATA[The post <a href="https://geripal.org/coping-with-serious-illness-danielle-chammas-and-amanda-moment/">Coping with Serious Illness: Danielle Chammas and Amanda Moment</a> appeared first on <a href="https://geripal.org">A Geriatrics and Palliative Care Podcast for Every Healthcare Professional</a>. ]]></description> <content:encoded><![CDATA[<div class="wpb-content-wrapper"><div class="vc_row wpb_row vc_row-fluid wpex-relative no-bottom-margins"><div class="wpb_column vc_column_container vc_col-sm-12"><div class="vc_column-inner"><div class="wpb_wrapper"> <div class="wpb_raw_code wpb_raw_html wpb_content_element vc_custom_1732138468630" > <div class="wpb_wrapper"> <iframe title="Libsyn Player" style="border: none" src="//html5-player.libsyn.com/embed/episode/id/34044701/height/90/theme/custom/thumbnail/yes/direction/backward/render-playlist/no/custom-color/00548f/" height="90" width="100%" scrolling="no" allowfullscreen webkitallowfullscreen mozallowfullscreen oallowfullscreen msallowfullscreen></iframe> </div> </div> <div class="vc_tta-container" data-vc-action="collapse"><div class="vc_general vc_tta vc_tta-tabs vc_tta-color-sky vc_tta-style-flat vc_tta-shape-square vc_tta-spacing-1 vc_tta-o-no-fill vc_tta-tabs-position-top vc_tta-controls-align-left"><div class="vc_tta-tabs-container"><ul class="vc_tta-tabs-list"><li class="vc_tta-tab vc_active" data-vc-tab><a href="#summary" data-vc-tabs data-vc-container=".vc_tta">Summary</a></li><li class="vc_tta-tab" data-vc-tab><a href="#transcript" data-vc-tabs data-vc-container=".vc_tta">Transcript</a></li><li class="vc_tta-tab" data-vc-tab><a href="#cme" data-vc-tabs data-vc-container=".vc_tta">CME</a></li></ul></div><div class="vc_tta-panels-container"><div class="vc_tta-panels"><div class="vc_tta-panel vc_active" id="summary" data-vc-content=".vc_tta-panel-body"><div class="vc_tta-panel-heading"><h4 class="vc_tta-panel-title"><a href="#summary" data-vc-accordion data-vc-container=".vc_tta-container">Summary</a></h4></div><div class="vc_tta-panel-body"> <div class="wpb_text_column wpb_content_element" > <div class="wpb_wrapper"> Denial. Substance use. Venting. Positive reframing. Humor. Acceptance. All of these are ways we cope with stressful situations. Some we may consider healthy or unhealthy coping strategies, but are they really that easy to categorize? Isn’t it more important to ask whether a particular coping behavior is adaptive or not for a particular person,in a particular time or situation? We are going to tackle this question and so many more about coping on this week’s podcast with <a href="https://www.ucsfhealth.org/providers/dr-danielle-chammas">Dani Chammas</a>, a recurring GeriPal guest, psychiatrist, and palliative care doc at UCSF, and <a href="https://pallcare.hms.harvard.edu/faculty/node/74">Amanda Moment</a>, a Palliative Care Social Worker at Brigham and Women’s Cancer Center. There are so many take-home points for me on this podcast, including this one on a framework for assessing coping in serious illness: <ol> <li style="font-weight: 400;" aria-level="1">nonjudgmentally observe their coping</li> <li style="font-weight: 400;" aria-level="1">wonder about the impacts of their coping</li> <li style="font-weight: 400;" aria-level="1">prioritize helping patients maintain their psychological integrity</li> <li style="font-weight: 400;" aria-level="1">mindfully think through how we can serve their coping in ways that they can tolerate, always calibrating based on the person, the moment, and the setting in front of us.</li> </ol> Here are some more resources we’ve discussed in the podcast <ul> <li style="font-weight: 400;" aria-level="1">Dani’s NEJM article on coping: “<a href="https://www.nejm.org/doi/abs/10.1056/NEJMp2402142">Should I Laugh at That? Coping in the Setting of Serious Illness</a>”</li> <li style="font-weight: 400;" aria-level="1">Dani’s GeriPal podcast with us on “<a href="https://geripal.org/improving-serious-illness-communication-by-formulations/">Improving Serious Illness Communication By Developing Formulations</a>”</li> <li style="font-weight: 400;" aria-level="1">A great journal article on “<a href="https://journals.sagepub.com/doi/10.1177/10499091241300614">Formulation in Palliative Care: Elevating Our Potential for Therapeutic Communication</a>”</li> <li style="font-weight: 400;" aria-level="1">A study on how palliative care may work by enhancing patients’ ability to access adaptive coping – “<a href="https://ascopubs.org/doi/10.1200/JCO.2017.73.7221">Role of Patient Coping Strategies in Understanding the Effects of Early Palliative Care on Quality of Life and Mood</a></li> </ul>   ** NOTE: To claim CME credit for this episode, <a href="https://geripal.org/coping-with-serious-illness-danielle-chammas-and-amanda-moment/#cme">click here</a> **   <hr /> </div> </div> </div></div><div class="vc_tta-panel" id="transcript" data-vc-content=".vc_tta-panel-body"><div class="vc_tta-panel-heading"><h4 class="vc_tta-panel-title"><a href="#transcript" data-vc-accordion data-vc-container=".vc_tta-container">Transcript</a></h4></div><div class="vc_tta-panel-body"> <div class="wpb_text_column wpb_content_element" > <div class="wpb_wrapper"> Eric <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=9745">00:09</a> Welcome to the GeriPal Podcast. This is Eric Widera. Alex <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=12857">00:12</a> This is Alex Smith. Eric <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=14017">00:14</a> And Alex, who do we have with us today? Alex <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=15945">00:15</a> We are delighted to welcome back Dani Chammas, who is a psychiatrist and palliative care doc at UCSF in the division of palliative medicine. Dani, welcome back to GeriPal. Dani <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=25417">00:25</a> Excited to be back. Alex <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=26913">00:26</a> And we’re delayed to welcome Amanda Moment, who is a palliative care social worker at the Brigham and Women’s Hospital in Boston. Amanda, welcome to GeriPal. Amanda <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=35593">00:35</a> Thanks for having me. Eric <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=37145">00:37</a> We are going to talk about coping and part of this came up from, and we’ll get into it, a New England Journal piece that Dani wrote. Should I laugh at that? Coping in the setting of serious illness. But before we jump into that topic, which is a pretty hefty topic, Dani, I think you have a song request for Alex. Dani <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=57035">00:57</a> Indeed, I’m going to request It’s Okay by Nightbirde. Eric <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=61035">01:01</a> Why did you pick this song by this song? Dani <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=65035">01:05</a> I love this song as a piece of art, but I also chose it because the artist was a young woman who wrote and sang this song during her journey with terminal cancer, and she has since died. But the song lives on, and it was, in my opinion, a big piece of her unique coping to create and share this song. So it felt very fitting to just today’s discussion. Eric <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=86583">01:26</a> How did you find this song? This is not on pop radio, right? Dani <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=91575">01:31</a> I didn’t know I was gonna get out in this early. I watch America’s Got Talent with my children, and Nightbirde auditioned with this song and got Simon Cowell’s Golden Buzzer. And my kids love watching the moment when the glitter falls on her face. So we watched it a lot of times. Eric <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=110207">01:50</a> Oh, wow. Dani <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=111705">01:51</a> Yeah. Alex <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=112273">01:52</a> I watched American Idol for years, my wife and I. I have to say, I watched this video of America’s Got Talent and I was bawling. My wife was like, what’s going on over there? Eric <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=124793">02:04</a> It’s like, oh, garlic. It’s the onions. This is great. [laughter] Alex <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=130929">02:10</a> So here’s a little bit. Alex <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=140875">02:20</a> (singing) Eric <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=205095">03:25</a> Thank you, Alex. Nice song, Dani. Alex <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=208271">03:28</a> Thank you. Beautiful choice. Dani <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=210063">03:30</a> Thanks. Yeah, I could feel the America’s Got Talent glitter dropping on us. [laughter] Eric <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=218055">03:38</a> All right, Dani, I’ve got a question. So you just published not too long ago. I forget when it was New England Journal. Should I laugh at that? Coping in the setting of a serious illness about a patient encounter you had with somebody who used an. A coping style that we see not infrequently. Do you want to describe kind of in your own words again? You probably haven’t read in a while what that patient encounter was like. Dani <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=246087">04:06</a> Yeah, yeah. I. I remember it well because on paper it was very sad case. Young man, terminal cancer coming in for the first time. And I remember reading the chart and expecting heaviness. Expecting a lot of heaviness. It’s really hard for us all when someone so young is going to die. And he came in and started cracking jokes, these dark humor, pseudo appropriate, pseudo inappropriate jokes from the start. And I was taken aback. And then he was just so cracking up at how taken aback I was. And so he kept them coming. Eric <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=285991">04:45</a> And what was his sticker? What did his sticker say again? Dani <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=288999">04:48</a> It was mist. He gave me stickers that said it was metastasized when I got here. Yeah. Or the first thing he said when I met, he was like, what’s the difference between my dad and cancer? I was like, what? He was like, well, at least my dad didn’t beat me. And I was, like, so taken aback. It was not what I was expecting to see in the room. And I was wondering, like, what do I do right now? Do I. Do I laugh with him? I’m a pretty. You guys know me. I love to joke, like, I could go down this rabbit hole, but is that going to be in service of him, or is that going to really be colluding with something that’s not in service of him? And so the narrative piece is really the process of, in my own mind, trying to verbalize how I assess somebody’s coping and how I decide in the moment how I’m going to relate to it. Eric <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=337411">05:37</a> Yeah. And that’s the whole point of this podcast. So hopefully we’ll walk through that narrative. But maybe for listeners like me, I struggle in actually defining what coping is. It’s one of those words that we say a lot, but I am not sure I completely understand what I am saying when I use that word. Amanda, what is coping? Amanda <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=365005">06:05</a> Well, Dani and I have been talking a lot about how coping is basically everything that we see in terms of how people express their reactions to what’s happening in front of them. Coping is something that we see our patients do. Coping is something that we do as we’re taking care of people and as we’re moving through the world. So kind of all of the behaviors that we see, it’s some form of coping. And there’s a lot of thoughts that people have about, you know, what is adaptive coping, what is kind of maladaptive coping. And we can talk a little bit about that, but it’s basically someone’s reaction to what’s happening in front of them and all the ways that it manifests. Dani <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=409405">06:49</a> Too simple or too simplistic. But really, when I think about coping, it’s just like, how do we deal? Right. Like, how do we help ourselves maintain psychological integrity in the face of the stressors that we have to manage? Alex <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=424805">07:04</a> And you use the words adaptive and maladaptive. And just to put that in plain English for our listeners, is that like good coping and bad coping, healthy and unhealthy? Coping, healthy and unhealthy. That’s probably better. Amanda <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=438075">07:18</a> Yeah. And I think a lot of people, they come from their own lens when they’re identifying whether they think that someone else is coping is healthy or unhealthy. And so it’s, you know, it’s something that is an incredibly subjective thing. But I think because we only view it from our own lenses, we think we’re saying something objective when it’s incredibly subjective as we’re identifying it. So trying to kind of build language for how are we assessing that coping. Dani <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=466311">07:46</a> Yeah. I would say, though, one of my hopes for this time together is that we take ourselves outside of this false dichotomy, that coping is good or bad, that there’s a right or wrong way to cope with serious illness because it’s just not the case. Right. We can ask ourselves, is it serving the patient? How is it serving the patient? How is it hindering the patient? There are ways that we can assess coping, but I think that this idea that people are doing it right, right or wrong really gets us into trouble. Because like Amanda said, everything we see is coping. Everything. Right. Somebody writes a beautiful poem. Coping. Somebody shouts at my front Desk staff because they’re pissed off about their appointment time. Coping, it is all coping. And it just helps me to let go of good and bad and remind myself the person in front of me is doing the best that they can with the resources, internal and external they have available to them to deal with the circumstances they’ve been dealt. Eric <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=528735">08:48</a> But aren’t there some bad ones? Like denial is. What is it? Alex <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=534575">08:54</a> Denial is not just a river in Egypt. Dani <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=537855">08:57</a> Listen. But sometimes denial serves people. Amanda <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=542415">09:02</a> Sometimes it can be really healthy to not dwell on something that you have no control over. Say so say you are waiting for scan results to come back and you got a day between today and tomorrow where you don’t have your scan results. And in that time period, avoidance and kind of denial of engaging with hard things in that time period might be really healthy. It might be a way for you to cope and get through that time period without completely falling apart or not being yet ready to confront a reality. So I don’t think that denial by itself is positive or negative. Kind of, to Dani’s point, is it sort serving somebody in the moment that it’s happening? Dani <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=587527">09:47</a> And I might get in trouble for saying this about math. Oh, no. I’m scared to say it, but I am going to say it anyways. Eric <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=595975">09:55</a> This is for our TikTok, so you can do it a little dance as you describe the benefits of meth. Dani <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=601711">10:01</a> About meth. About meth. No. So I know the thing is, coping serves a purpose. It’s there for a reason. Whether we think there might be more adaptive coping we can get somebody in contact to or not, it’s there for a reason. There’s a reason the person is using the math. It’s got a function. And so we don’t want to take a sledgehammer to what’s keeping people intact. Even if it’s something that we don’t think is the best for them, we want to respect what it does and then we can think through, okay, how’s it serving? How’s it hindering? Can I adjust it? Alex <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=636865">10:36</a> So for each person, that particular coping mechanism may be a mixture. There may be ways in which it’s healthy for them and there may be ways in which it’s hindering or harmful to them. Dani <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=648357">10:48</a> Yeah, right on, Alex. And if I were to one up that I would say that that ratio changes both depending on time and depending on circumstance. And so we see a lot of people who their coping is that they’re doers, they just have to do. And when they’re in their treatment phase, that’s really serving them. They’re doing. They’re doing. They know which. The clinical trials and the this and that. And then, you know, the. They’ve got it all, the infusions and this, that. And then we see them on the other side of treatment when they’re in remission, and it’s just not serving them anymore. Right. They kind of come apart in that space because with nothing to do, they have to really look at what’s going on with them. So it can be different over time, and it can be different over circumstance. If you like to compartmentalize, well, gosh, when you’re going to Disneyland with your kids for a memorable trip, compartmentalize, put that cancer in the box and take pictures with Mickey. But if we’re going to have a family meeting, that’s a different circumstance. We’re going to have to be able to open the box. So help serves and hinders in everybody. And that balance changes based on time and circumstance. Eric <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=718035">11:58</a> So going back to the case that you presented at the start, so you’re seeing this person use a whole lot of humor. Dani <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=725931">12:05</a> Yeah. Eric <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=726923">12:06</a> What did you do? Dani <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=728955">12:08</a> Okay, so internally, this was the question in my head, is it serving? Is it hindering? Because a part of me worried, are we about to use humor for an hour together to avoid talking about the fact that this young man’s going to die or not? And so I let him educate me. I sort of called out the coping. I said, you know, I don’t usually start my appointments in laughter. And it seems like humor has been really important for you. And he kind of described that it has been important. And I said, what led you here? Like, how do we end up here? And he looked at me and he said, Dr. D. Because he didn’t call me Dr. Shaw. He said, Dr. D, this story isn’t going to end in a rainbow. This story isn’t going to end well. My only choice is to make the rainbow right now. And then I knew, and then I knew that he is using this humor to deal with the truth of his illness, not to avoid it. He gets where this is going. And so I let myself laugh with him. And my goodness, did we laugh together. And I think that’s why by the end of the appointment, we were able to go to equally deep places that were pretty dark and pretty heavy together. Amanda <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=798315">13:18</a> I was going to say, like to build on that, too. To your point, Alex, about the denial piece, it’s. It’s amazing how often when we’re taking care of somebody in the hospital, if you have Say, you know, a family member who is not showing up for visits with the medical team or who is. Is so fiercely pushing back on discussions about how sick somebody is. It’s often assigned to us that they absolute understand it and that’s why they’re pushing back on it so heavily that that’s actually a sign that people have awareness and insight and how they’re choosing to cope with it looks this way, but they wouldn’t have to push so hard if they didn’t know what they were pushing against. Alex <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=843375">14:03</a> I like that it kind of flips it on its head the way we think about it. Eric <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=847175">14:07</a> Yeah. It’s kind of like when I think about miracles, I used to always worry, oh man, they’re just in denial. But then you recognize eventually over time, oh wait, we’re in prognostic agreement. Like it would take a miracle. Dani <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=861017">14:21</a> A miracle, yeah, that’s right. It’s not in the capacities of what we can do medically. Yeah. Oh, I was just going to say the other piece because we talked about then holding. If we conceptualize everything as coping, it helps us hold empathy. It helps us empathize with the person regardless of how they’re behaving. And I think that the other thing that we can hold empathy for is that when you have a serious illness, it will stress your ability to engage with your normal coping more for some, less for others. But it takes a toll on our ability to hit our adaptive coping. And we see this all the time on a micro level in our normal lives. Stress makes us cope worse. My 4 year old is a beast. Putting her shoes on in the morning every day. She wants her socks one way, she wants the shoes one way. If I’m rested, if I’m calm, if I’m regulated, I can take a deep breath, I can tell myself, you know what, Dani, one day you’re going to miss her at this age. One day and I’ll work with her. But if I’m overwhelmed, if I’m stressed, if I’m not regulated, I might pick up those shoes, throw them out the front door and walk away. Because it’s the best that I have to offer her in that moment. And so if we take a step back and think about the level of stress that people experience managing a serious illness, I think it helps us have grace with the fact that even the coping that we’re seeing might be very different from what we would have seen had we known them earlier in their lives. Alex <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=952815">15:52</a> Yeah. Our ability to cope is seriously tested and stressed in the setting of serious illness. And all that comes with it. Eric <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=962999">16:02</a> Well, is it our ability to cope because we’re coping, right. I’m hearing we’re coping no matter what. We’re just using different coping styles under different stresses. Amanda <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=972495">16:12</a> Like what we can access sometimes narrows when we’re under stress. So we may have a broad range of things that we can access in our day to day lives and then sometimes under stress that can narrow. So like I have, I have, I do inpatient work. So I have people who, you know, on in their normal lives, they go hiking, they do yoga, they like to swim, you know, and suddenly they’re hospitalized for weeks at a time and they can’t the kind of coping that they normally would. So they’re having to draw on aspects of coping that they very rarely had to cultivate, you know, or may have only done for periods of time that were much shorter than that. So oftentimes people are having to build new coping techniques at a time when their resources are lower. Dani <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=1018875">16:58</a> So it’s logistically true, Right. Sometimes that we lose the capacity and then it’s emotionally true. Right. Sometimes like, you know, yes, throwing the shoes out the door and walking away is coping. That’s how I managed without screaming at my 4 year old who was coping. But I wasn’t able to take a deep breath and be in a Zen place. There was less in the repertoire that I could touch. Alex <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=1040208">17:20</a> Yeah, not as healthy. Potentially harmful elements of that coping mechanism for your relationship with your four year old. I want to ask about how you determine that sort of mixture of healthy versus unhealthy or whatever terms we want to use is for each patient. And Dani, you just flat out like basically asked this patient called it out and spoke to the moment. And I don’t usually start my patient encounters with humor. How can our listeners probe and get a better understanding for that patient in front of them whether this coping style is adaptive or maladaptive or the mixture they’re in. Dani <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=1084455">18:04</a> I’ll take this one, but I know I’m going to sound like a broken record with Alex and Eric. Eric <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=1089335">18:09</a> Is it going to be formulation, holding space? Dani <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=1093103">18:13</a> Yes, formulation, holding space or countertransfer? Eric, you got it. It’s formulation really. It’s formulation. And it’s a hard question to answer because we formulate using different data with different patience. So sometimes my patient is my biggest ally in formulating and I can go back into. Alex <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=1119479">18:39</a> Some of our listeners remarkably may not have heard your prior episodes. Dani <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=1123351">18:43</a> That’s true. Alex <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=1124343">18:44</a> What is formulation? Eric <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=1125951">18:45</a> Formulation. Dani <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=1126991">18:46</a> Some of the listeners haven’t heard my prior Episodes. But Eric and Alex. Eric <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=1131535">18:51</a> Yeah, Alex, what is formulation? Dani <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=1133407">18:53</a> What is formulation? Eric <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=1136055">18:56</a> Eric said it. Alex <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=1136943">18:56</a> I said, holdings, space. Dani <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=1140705">19:00</a> I’ll. I’ll take you off the hook only because I love you. So formulation is essentially, it’s our assessment of what is under the surface for the thoughts, behaviors, feelings that we’re seeing on the surface for our patients. So it’s the why. It’s our hypothesis, our theory, our framework for understanding the psychological why behind what is manifesting on the surface for somebody. Eric <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=1169291">19:29</a> So when the person comes in with stickers, they’re using humor. The question Dani is asking is, why? Why? Why am I seeing this behavior? Dani <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=1180395">19:40</a> Well, and so, and I had a piece of it, right? I’m like, okay, they’re using this to cope. But I wanted to go farther into the why, right? Why are they using it to cope? Like how? Like, what is it serving? What is it hindering? Are they using it to tolerate their situation? Are they using it to stay in the weeds and not look at their situation? And so we ask ourselves that. And sometimes our data comes from the patient. Sometimes it comes from just our intuitive sense of what’s going on. Sometimes it comes from our idt. Thank goodness we have an idt, and we can keep each other in check and think about these things together. Amanda <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=1221515">20:21</a> I think family members are a lot of how we make formulations about how people are coping. Because sometimes my patients are really ill and it’s hard to get much of a history from them. And so sometimes it’s the family members saying, prior to illness, here’s how he or she coped prior to illness, here’s what things looked like. And so we really kind of pull in a lot of data both from what we’re seeing in front of us and from people who’ve known the patient for a lot longer. Dani <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=1250483">20:50</a> Yeah, like if you take, for example, Eric and Alex, a patient who is just asking questions, questions, questions, questions. What about the Billy? What about the this? What about the that? You can’t get out the room. There’s so many questions. That’s a form of coping. We’ve all agreed everything we see is a form of coping and we can formulate what is behind that. Well, maybe they’re an engineer and understanding makes them feel rooted. And the more that we can help them understand and have a sense of control, the better that they’re going to be able to traverse what is being asked for them. Well, gosh, then I’m going to lean into that coping. I will do things that give them control. Say, here’s a notebook I want you to take it and write down your questions as they come up, like a literal form of notebook. Write down your questions for me. I’m going to come back at this time tomorrow. As much information and control I can give, I’m going to give because I think that this coping is helping them stay rooted. But take that same behavior and let’s say it’s somebody else. And the whole team’s been trying to tell them this, Your husband’s going to die. This doesn’t look good. And. And the wife doesn’t want to think about it, doesn’t want to hear it. So instead she’s like, but what about the Billy? I saw the Billy. Well, that went down by one. And I want you to answer this. And you’re like, oh, gosh, she’s trying to avoid the big picture. And you try to go big picture. And she says, no, I heard that there’s a clinical trial at the Mayo Clinic, and I’m wondering about this. And so you get the sense that these questions, even though they’re coping, even though they’re keeping her psychologically intact, aren’t serving her. They’re not helping her do the work, you know, she needs to do to get where you have to get. And so then you might lean away from it, and you have to calibrate again. We don’t take a sledgehammer to it. We don’t want to crumble her to pieces. So you calibrate how much she can tolerate you leaning away and what you can do. So you start to wonder with her. You know, gosh, there’s a lot of moving pieces going on. Like, I wonder what your hopes are. I wonder what your fears are. And she gets back to the details, and you lean away again, like. But you’re not, like, ripping her out of it, but you’re calibrating based on your assessment what you want to do with it. Eric <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=1378855">22:58</a> I mean, a. That sounds like just amazing palliative care, and it also sounds like a skill that’s probably also very hard to teach during a palliative care fellowship. Eric <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=1391815">23:11</a> Well, go ahead, Annie. Dani <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=1392847">23:12</a> Well, I was gonna say. I love that you say this, though, because we have. So we have these original Temel studies that said our presence. Palliative care’s presence early on does something good, right? It improves outcomes. And there have been subsequent studies by Greer. Amanda, you might know the literature better than me, but what they found is that one of the most meaningful ways that palliative care presence improves outcomes is that we help patients access adaptive coping yeah. So we’re doing it. I think you’re right, though. We’re not. We don’t have the spotlight on it. We haven’t thought deeply about what it is we’re doing that’s helping with this. Eric <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=1431201">23:51</a> No address. Empathy Nurse. Acronym insert. You must be frustrated here. Dani <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=1438201">23:58</a> You want to get me in trouble, Eric, you always get me in trouble when you put me on a rant about my feelings about acronyms. Eric <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=1444081">24:04</a> So I’m going to go back to the Jennifer Tomel study. The part that I loved about that study is that there was a qualitative study that came out afterwards looking at what did they do, like what was in that syringe in the Jennifer Tamil big New England Journal study. And if you look what they did early on, the very first things were relationship rapport building and how was somebody coping with their illness? So is this fundamental part about how people are coping, and I am not sure how much we’re teaching trainees, if anything, in palliative care, like to really dive into that coping part. Hell, I couldn’t even answer how to define coping. What do you think, Amanda? Amanda <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=1491345">24:51</a> Yeah, I mean, I think so as an idt, kind of member of the team. That’s often what I’m honing in on when I’m working with trainees is what kind of coping are you seeing? Because, you know, especially if I’m working with an MD fellow, they may be thinking, you know, in really complex ways about how do we get this person’s pain under control? How do we get this nausea better? And a lot of what I’m talking to the fellows that I work with about is what are you seeing in the room? What do you think is happening in the room? What are you seeing in terms of the relationship between this patient and their family? What are you seeing in terms of how we as a team are interacting with them? How much do you think we understand and have replacement rapport with them? So these are the kinds of things that I’m talking, you know, to our fellows about. And I. I think it’s a part of. It’s a part of some of the learning, but maybe not as explicit a part of the learning as it. As it needs to be. Dani <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=1545917">25:45</a> Amanda, imagine if every fellow, as you know, they write their pain assessment and their nausea assessment, if every note had a coping assessment and they had to take the time to think through it. Because I agree with you, Erica, it’s foundational. Some would argue it’s the most meaningful thing we do. Why aren’t we explicitly. Eric <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=1564005">26:04</a> Yeah. And it was one of the seven major themes from the Jennifer Temel study and what they did early on in the disease trajectory, again, they did not address advanced care planning on that. Like, first part of their visits, they addressed how people are coping. Alex <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=1578261">26:18</a> Yeah. And when we asked Jennifer Temel and we asked Vicki Jackson, we asked. Well, we actually. We will ask Vicki Jackson. I think we’re having her on a forthcoming podcast. We asked Areej Al Jawahari, what’s the secret sauce in these palliative care interventions? They all said they think it’s coping. And Joe Greer is going to be on as well in a forthcoming podcast. And so now the question is, how do we unpack that coping? What is it? How is it that palliative care clinicians are accessing, inquiring, probing, boosting, supporting, giving resources to people to engage in more healthy coping or expand their repertoire of their ability to cope? Those are all kind of fundamental questions. Dani <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=1625005">27:05</a> I think the repertoire idea, too. Sorry, Eric, I’m jumping in. But I love the expand the repertoire idea because if we do decide that something isn’t serving, you don’t want to take something away if you don’t have a replacement on the other side. Right. There’s some kind of glue that’s helping keep somebody together. If you’re going to remove it, you better have a new adhesive. And so we do need to build it. And one of the beautiful things about palliative care is that sometimes we’re the replacement. Like, sometimes our accompaniment is the coping. That somebody is. I have a patient right now. She gets so sad when she goes to social gatherings, because anytime somebody says something to her that feels invalidating, like, they say, oh, how are you doing? But she has cancer. So she’s like, why’d they ask me that question? Or even if they’re too intense, like, oh, you must be in a rough spot. And she’s like, no, I’m still a person. Every time they make a misstep, it hurts too much for her. So her coping was that she stopped going to social gatherings. That was it. That’s what she could do. And I wanted to get her out back to social gatherings. I had to give her something new. So now the strategy that we use together is she goes whenever they say something irritating, she pictures me in her head rolling my eyes with her, having a laugh. She writes it down in a little sticky note on her phone, and she saves it for her next appointment. And at the next appointment, she’s like, let me read you the bloopers reel. And we Laugh about it. But because of that, she’s able to go to these social gatherings again. Amanda <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=1715617">28:35</a> So we all need a little Dani in our heads. Dani <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=1720705">28:40</a> One part of me, not all. Eric <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=1722297">28:42</a> Well, it is interesting too, because Alex used the word healthy coping and it sounds like healthy coping. I’m getting this. Like, healthy coping is not necessarily a thing. Right? So I can imagine I just delivered some bad news and somebody is using acceptance as they’re coping. You know what I recognize, you know, I’m going to die. It’s okay. I don’t need any treatment. Like, just let me go peacefully. That’s most important. I go back. But, but, sir, you just have high blood pressure. Like, this is. You’re not going to die from this. Like, so acceptance could be not the best coping mechanism in all forms of bad news or how we deliver things. Dani <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=1768111">29:28</a> Oh, my goodness. Imagine if a patient came and said, like, my boss is, you know, sexually harassing me. You would not accept. You would not think acceptance was the most adaptive coping. And that’s why I like to use the word adaptive, because it changes based on person situation. You wouldn’t think that the most adaptive coping. Amanda <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=1785875">29:45</a> That’s why context is so critical for coping. Context is important for a lot of reasons. So is how someone’s coping, is it serving them in the context of, say, their illness? Context also can be other things. Coping is also. It also happens within a person’s family system, whatever role they play in their family system. So if they are usually the one person who always handles everything for their family and then they get an illness, they’re going to handle it, you know, because it’s the role they’re used to playing within their family system. And sometimes it’s really hard for people to break out of those roles when they are encountering illness. It’s also culturally contextualized. So you have someone who comes from a particular cultural background, and coping may be very common in that cultural background. You can’t divorce coping from context. So when we think about our learners, when we think about us as providers trying to assess coping and engage with coping, we always have to make sure that we’re thinking about multiple layers of context. Eric <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=1853747">30:53</a> I love that too, because like in the last week, my coping style has been avoidant when it comes to news. Yeah, we just had a big election if people didn’t know. So I just, I have tuned out. I just listen to music now on my ride in and out. I don’t listen to like NPR or anything. It’s just avoidant. But that’s just with this one aspect of my life, I just cannot. One day I plan to listen to news again, but right now, I think it’s the right thing for me. I actually feel pretty good with it. It’s probably at some point gonna be not so good if I completely tune out of the entire world, but. Dani <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=1894163">31:34</a> Yeah, that’s right. Amanda <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=1896195">31:36</a> That’s right. In this moment in time, in this context that is serving you. Eric <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=1900291">31:40</a> Yeah. Alex <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=1901115">31:41</a> I remember Susan Block when I was a fellow at Brigham Women’s Hospital. And Dana Farber, she said one of her teaching sessions, you know, there are some patients who are so fragile, and the only coping support they have is denial. Don’t take that away from them because they may crumble psychologically when you pull that away. And that’s sort of. We talk about doing a lot of prognosis. I do a lot of prognosis research. We talk in palliative care a lot about prognostic disclosure, prognostic awareness. And there are cases in which we probably shouldn’t push too hard there because we may undermine that sole support. And until we get to a place where we can provide more supports, we need to get them through. Dani <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=1953575">32:33</a> And does you want to talk about talking about talking about it? Amanda <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=1956335">32:36</a> Yeah. So a lot of times when we’re in sensitive territory, one of the most kind of therapeutic ways in is to talk about talking. So rather than delving directly into content, talking about the idea that I think, you know, I’m feeling like it might be time to have a conversation maybe about what’s the head, or maybe about what’s worrying you, or maybe about what’s worrying us as your medical team. How would you feel if we were to have a conversation like that? Who would you want to be there? How would we need to put some guardrails in place to make sure that you felt safe enough to have some of these conversations or at what point? This is one of my favorite questions to ask when someone says, no, I don’t want to talk about that right now. You know, how would you know when it would be time to talk about that? At what point would you imagine a conversation like that could be helpful? And then you start building a roadmap, you together with the person you’re working with, so that when you enter into that sensitive space, you’re doing it together, you’re doing it in a partnership, and you’re doing it with parameters already created. Eric <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=2022945">33:42</a> I love that. Alex <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=2023977">33:43</a> I love the talking about talking about it. Eric <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=2026745">33:46</a> Yeah. It takes invitation. That whole idea of inviting people in the conversation, one step so much better. And deeper. Amanda <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=2035435">33:55</a> I was talking to someone today whose wife is doing poorly, getting sicker and sicker. And today was a day of getting scans. And when we sat down, it was pretty tearful. And I said, you know, some people in this circumstance want to think a little bit about the what ifs. What if the scan comes back and the news isn’t good? What if, you know, what if I have to start thinking about how to talk to my kids about what’s going on here. There are other people who say, in this time of uncertainty for these next few hours, I think I just need to avoid the worst case scenarios and just wait for the information to come back. And if the information comes back, then I can make a decision about which way I want to go. He said, I think that second one is me. I don’t know that I’m ready to move into the what ifs just yet, but I think if I get this data back, I think I’ll know whether it’s time or not. So we talked about talking. We set some parameters, and we talked about how he would know when it was time. So now we have an agreed upon kind of plan to move forward together if by tomorrow he has that data. Dani <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=2102775">35:02</a> The beauty, too, is, I think, Amanda, now you brought us into this domain of tools, right? Talking about, talking about it is a tool. And what, you know, medical practice assessment precedes plan. And so that’s why we wouldn’t talk about talking about it with everybody. Some people would feel really like, babied and kind of belittled that we did it like that. But that’s why it’s so foundational to have a formulation that roots us into why we’re choosing the tools, the communication tools, the interventions that we’re choosing. Where is it coming from? I had someone run a case by me just this week, and they said, the patient said to me, I know I’m going to die. I’ve put that in a small box. And I put the box down here at the base of my skull and I’ve closed it and I’d like to leave it there. And the person who was coming to me for consultation said, well, how do I get them to open up the box? And my first question was, why? Like, why do you want them to open up the box? And I’m not saying it would be right or wrong to open up the box, but they hadn’t thought through it. Did they want to open up the box because of something in them, as the clinician, some idea they had about what palliative care should look like, what coping should look like, or was there a formulation about the patient, whether they felt like opening the box would be helpful? Because I couldn’t really advise them one way or the other until we had gotten to that point. I have strategies for opening it, I have strategies for keeping it closed. Right. But we have to understand why we’re choosing to do what we’re doing and who it’s in service of. Eric <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=2189105">36:29</a> So in that situation, hypothetically, if Dani or Amanda were in the room, what would you your next step after the person said, I’m going to put this right here in the back of my head. Amanda <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=2201605">36:41</a> So part of what I think about when you’re at that assessment point about how might this be serving, how might this not be? Sometimes I will say to people, it sounds like having that box back here feels like a safe way to be. It feels like it’s helping you kind of get through your day to day stuff. Are there things that are important for you to be thinking about or talking about that keeping it in the box is preventing you from getting to like, are there important conversations? Is there work that would be important for you to do that we’re not tending to because the box is closed back here. That’s more kind of talking about talking without totally being explicit about it. But it’s trying to understand, is there anything you’d be doing differently? If we have this box out and we were looking at things and some people will say, no, look, I’ve already done my will, I’ve already told my kids, I want you to take this piece of furniture and I want you to take the other one. So putting it back here means it’s helping keep my anxiety about death in check. But there’s nothing concrete I would need to do by pulling that box out. There are other people who say, yeah, there are things that would be important to me, but it’s not time to look at those yet. And those may be the scenarios in which you might be able to kind of expand that toolkit a little bit with somebody about how and when that work would be important to get to. I don’t know, Dani, if you have other thoughts about that. Dani <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=2285949">38:05</a> Well, I was going to say with this specific case, with this trainee, they got at the. The trainee essentially said, I want to fill out the advance directive with them. But as we looked further into it, the trainee felt like the template for doing an advanced directive that we in medicine had taught him because we do like algorithms and templates, was that he needed to open up like the feelings, the hopes, the fears. We taught him to do hopes and fears. He was trying to do what we told him to do. And so. So I was like, well, let’s throw that template out of the window for this patient. You just need the advance directive. You know, that he knows he’s dying, so go there and make it really transactional. All right. I know you want to keep it in the box. Let’s keep it in the box. I just have to check through a couple things with you to make sure everything’s aligned the way you would want it, and then we can move on. Would you want this? Yeah. No. Yeah. And do it. But we know why we’re doing it, right? It’s not like we’re doing it because we want to avoid going to those feelings, which you can imagine a clinician doing, getting super logistical, because they don’t want to go there. We’re doing it because we think it’s in service of this patient. That’s where we left it. I’ll have to tell you how it turns out when I hear back. Eric <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=2355569">39:15</a> I love it, too, because there’s. There’s no necessarily right answer here. Like, there’s no ABIM test we could take that says, oh, option B is clearly the correct answer on this board test. Is that you. You’re coming up with an idea of what may be the underlying reasons. Maybe you’re inquiring, what, what, like why. Why does he feel it’s so important to keep this under a lockbox in the back of his brain? And then you’re coming out like, what do I want to do with this information? Is this adaptive? It Is it not? Is it helping him in this current situation? Is it not? And then thinking about next steps, where do we go from here? Does that sound right? Dani <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=2395955">39:55</a> Yeah. Amanda <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=2396555">39:56</a> And I think also being mindful, especially when we are. When somebody’s in the medical system, we are one of a tapestry of providers that people are working with. It also may be that they’ve opened that box with five other people and they just don’t want to open it with the sixth, you know, So I think also kind of keeping in mind that we are. We’re one point of interaction with people in a larger. In a larger network. Dani <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=2423447">40:23</a> I’m going to channel my inner Amanda moment right now and give you wisdom that she’s dropped on me and pretend that it’s my own. But I think the other. The other thing to remember is that we are people in the room, too. Like, we have our own coping styles, and that can really help us and get in the way if we’re not in touch with that. So, you know, I, for example, humor is one of my copings. It’s so easy for me to go there. And that’s why there’s a ton of laughter in my clinic, really. It’s one of the most powerful ways I palliate. And I have to be careful not to get in trouble. Right. I have to be careful not to accidentally collude in a case where humor isn’t working so well for somebody or if there’s a couple. Right. Oftentimes we really relate to the way one person in the couple copes and not so much the other one. And we do the relationship a disservice by leaning too much into relating to one or the other. So it almost feels a little bit like love languages. You know, we all have love languages. These are our coping languages. And when there’s there aligned, there’s pros and cons. We can go there together. We can. In a good way or in a not so good way. And when they’re not aligned, there’s pros and cons. I know some colleagues who, if that patient had come in cracking jokes, it would have been a very uncomfortable room. Humor isn’t their go to coping. Like, it would have felt strange. Alex <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=2511725">41:51</a> I’m getting. This is so complicated. Like, you know, people have many different coping styles and each coping mechanism that they have to employ may have maybe adaptive for them and maladaptive in different proportions. And that they may be able to access some of these under some circumstances, but not stressful circumstances, that there’s a dyadic interaction with the provider, who also has their own coping styles that may relate, resonate, or have dissonance with the style of the patient or the caregiver or the couple. To get even more complicated. This is complicated. Couldn’t we just come up with on the spot a mnemonic like Cope that it summarizes. Dani <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=2556059">42:36</a> You had me. You had me. My mouth was ready to say, you pretty much nailed it. And then you lost me. Eric <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=2565459">42:45</a> I was going to say, can we just make a drug to. Alex <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=2568465">42:48</a> That’s right. Eric <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=2570145">42:50</a> Cobaminumab. Alex <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=2572905">42:52</a> It’s gotta be some sort of benzo. Dani <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=2575145">42:55</a> No, I mean, I mean, if I were to paraphrase what you said, because you did nail it. What you said is humanity is complicated. And you’re right, humanity is complicated and we do it ourselves and we do our patients a disservice if we try to pretend that it’s not. And I’m not going to say anything more about mnemonics. But I was baiting you. I know you, you were. You’re just trying. But I do think, I do think your point also, Eric, is right. There’s not one way, there’s not one answer. We can’t give you a. This is what you do with denial. I actually tried to write a paper about the different. I was like, I want to define the different coping mechanisms for palliative care so they know what’s projective identification, they know it’s denial. They know this. And the journal said, as long as you say what to do with each one. I’m sorry, I have a hard line there. Like, I can’t go there. And eventually we, like agreed to part ways because they want us to know what to do. But you, we. There’s no one right answer. But there is a consistent way of approaching, which I think you guys are both getting at, right? You non judgmentally observe someone’s coping. You wonder about the impacts of those coping. You prioritize maintaining their psychological integrity above all else. And then you mindfully think through how to serve their coping in ways that they can tolerate, that are calibrated based on person, moment and setting. Amanda <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=2658445">44:18</a> And I will put in a plug too, for the importance of understanding our own coping. What are we comfortable with? What are we not, to Dani’s point about love languages, what’s our coping language that we feel most at ease with? Because we are likely to see someone who has a coping mechanism that’s different from ours as maladaptive coping, quote, unquote. And so understanding what ours is is the first step because we’re the lens through which we see our patients and their coping. So I want to put in a plug for that. Eric <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=2691497">44:51</a> And is that like when you’re under stress, what are. Because I have all of these different coping styles like the ones you go to under stress or how should I think about that, Amanda? Dani <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=2702561">45:02</a> Well, let me turn it on you really quick though and give you one more quiz because this is a word we’ve spoken about. There’s a psychological word behind this. Eric <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=2711809">45:11</a> Counter transference. Dani <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=2713041">45:13</a> Yes. Eric, you’re on fire today. Yeah, countertransference. A little bit of what Amanda is talking about is countertransference. When somebody doesn’t cope the way that we would want them to cope, we experience countertransference. And yeah, there’s a range of how we cope, but there are certain crayons that are in our crayon box and there are certain crayons that aren’t So I can’t tell you which of your crayons you’re going to pull on, but I can tell you avoidance. Eric <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=2741823">45:41</a> Avoidance. It’s mostly avoidance. It’s different shades of avoidance in my. Dani <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=2746303">45:46</a> Crayon box have a total different. My. My mom’s cousin, our family is Lebanese. This gets at Amanda’s point about culture. My mom’s cousin had cancer, and they literally did not tell the woman she had cancer at all once she died believing that she had an infection that she was going to get better from. And my family thinks this was a huge success. They do this a lot in Lebanon. And they were like, she wasn’t even scared and Americanized doctor that I am, I was mortified. I was like, this is so wrong. I had a huge countertransference to it because it was so far from my crayon box of what I thought was in the realm of acceptable coping. And I need to do a lot of looking within to understand, like, okay, where are the hard lines? What’s coming from me? What’s coming from them? Amanda, you could probably go deeper into countertransference than I ever could. Amanda <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=2800653">46:40</a> But no, I mean, I think it’s foundational to how we enter any of the spaces where we meet patients. And one of the things that we talk about is you can look for where countertransference is coming up, where you are practicing differently or having kind of strong reactions to people in rooms. And, you know, I think about our families who are maybe kind of loud grievers. You know, we have some families who, you know, context wise, culturally, you know, grieving loudly as a part of the process. And in our kind of like Western medical world, you know, a lot of people feel really uncomfortable with that and feel like, let’s get that behind closed doors. Like, they’re out in the hallway crying. Like, let’s get that behind closed doors. And so, once again, that’s our discomfort. This is a family that’s grieving in the way that feels right to them, but that’s our discomfort. So recognizing when we have our own flares of discomfort that often comes from a place of countertransference. Eric <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=2862025">47:42</a> Well, we could go on for hours, I think. I thought that was brilliant. We’re going to have some show notes, so we’re going to have a link to the Formulation podcast that we did. Dani actually just published a great paper on Formulation two, which we’ll have a link. Dani <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=2876473">47:56</a> Amanda was an author on that. Eric <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=2877921">47:57</a> Amanda was an author, too. Great. That was a fantastic paper. I had to read it twice to Understand what? Like the full concept. So I’m finally getting it, Dani. I am getting it. So we’ll have links to this on our show. Notes. Check out the website. Amanda, Dani, thank you for being on the podcast. Before we end, I think Alex, what’s the song called again? Dani <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=2897935">48:17</a> It’s okay is the song. Eric <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=2899671">48:19</a> It’s okay. Alex <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=2907775">48:27</a> I moved to California in the summertime I changed my name Thinking it would change my mind Alex <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=2921425">48:41</a> I thought that all my problems they would stay behind I was a stick of dynamite and it was just a matter of time oh, dang. Oh, my Now I can’t hide Said I knew my myself But I guess I lied it’s okay it’s okay it’s okay it’s okay if you’re lost we’re all a little lost it’s all right it’s okay it’s okay it’s okay it’s okay if you’re lost we’re all a little lost it’s all right it’s all right it’s all right it’s all right it’s all right it’s all right. Eric <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=2971905">49:31</a> Wonderful. Amanda, Dani, thank you for being on the podcast. Dani <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=2976105">49:36</a> Thanks for having us. Eric <a href="https://grain.com/share/recording/54282899-ae97-41e6-8b2f-f3557cd9ff8d/2rfRGTOFDDTOgsTSdB1Ct4EcJzEVYGM3QP2UuMyr?referrer=docx&t=2978105">49:38</a> And to all of our listeners, thank you for your continued support. </div> </div> </div></div><div class="vc_tta-panel" id="cme" data-vc-content=".vc_tta-panel-body"><div class="vc_tta-panel-heading"><h4 class="vc_tta-panel-title"><a href="#cme" data-vc-accordion data-vc-container=".vc_tta-container">CME</a></h4></div><div class="vc_tta-panel-body"> <div class="wpb_text_column wpb_content_element" > <div class="wpb_wrapper"> <h3 style="text-align: center;">***** Claim your CME credit for this episode! *****</h3> Claim your CME credit for EP335 “Coping with Serious Illness” <a href="https://ww2.highmarksce.com/ucsf/index.cfm?do=ip.claimCreditApp&eventID=13907">https://ww2.highmarksce.com/ucsf/index.cfm?do=ip.claimCreditApp&eventID=13907</a> Note: If you have not already registered for the annual CME subscription (cost is $100 for a year’s worth of CME podcasts), you can register here <a href="https://cme-reg.configio.com/pd/3315?code=6PhHcL752r">https://cme-reg.configio.com/pd/3315?code=6PhHcL752r</a> For more info on the CME credit, go to <a href="https://geripal.org/cme/">https://geripal.org/cme/</a> Disclosures: Moderators Drs. Widera and Smith have no relationships to disclose. Guests Danielle Chammas and Amanda Moment have no relationships to disclose. Accreditation In support of improving patient care, UCSF Office of CME is jointly accredited by the Accreditation Council for Continuing Medical Education (ACCME), the Accreditation Council for Pharmacy Education (ACPE), and the American Nurses Credentialing Center (ANCC), to provide continuing education for the healthcare team. Designation University of California, San Francisco, designates this enduring material for a maximum of 0.75 AMA PRA Category 1 credit(s)™. Physicians should claim only the credit commensurate with the extent of their participation in the activity. MOC Successful completion of this CME activity, which includes participation in the evaluation component, enables the participant to earn up to 0.75 MOC points per podcast in the American Board of Internal Medicine’s (ABIM) Maintenance of Certification (MOC) program. It is the CME activity provider’s responsibility to submit participant completion information to ACCME for the purpose of granting ABIM MOC credit. ABIM MOC credit will be offered to subscribers in November, 2024. Subscribers will claim MOC credit by completing an evaluation with self-reflection questions. For any MOC questions, please email <a href="mailto:moc@ucsf.edu">moc@ucsf.edu</a>. </div> </div> </div></div></div></div></div></div></div></div></div></div> </div>The post <a href="https://geripal.org/coping-with-serious-illness-danielle-chammas-and-amanda-moment/">Coping with Serious Illness: Danielle Chammas and Amanda Moment</a> appeared first on <a href="https://geripal.org">A Geriatrics and Palliative Care Podcast for Every Healthcare Professional</a>. ]]></content:encoded> </item> </channel> </rss>