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{"work":{"id":117101495,"created_at":"2024-04-05T03:36:35.278-07:00","from_world_paper_id":252450602,"updated_at":"2024-11-25T11:39:14.014-08:00","_data":{"publisher":"SAGE Publishing","grobid_abstract":"Background: No guidelines exist regarding care for patients with advanced heart failure (HF) receiving hospice care while continuing advanced HF therapies such as left ventricular assist devices (LVADs) or continuous inotropes. Objective: We surveyed hospice providers in our tristate region to determine hospice demographics, current practices for care of patients with advanced HF, and perceived challenges of providing advanced HF therapies. Design: Cross-sectional survey of hospice clinical and administrative leaders. Results: Forty-six respondents representing 23 hospices completed the survey. Over half (27/ 46) held leadership administrative roles, and most (37/46) had more than 5 years of hospice experience. Although lack of experience and cost were cited as primary barriers to providing inotrope therapy in home hospice, about half of respondents (24/46) said they would manage inotropes. All participants said their respective hospices accept patients with implantable cardioverter-defibrillators; over half (28/46) said they accept patients with LVADs into hospice care. Lack of experience with LVADs was the most frequently cited barrier. Most participants were interested in training and support by an advanced HF program to facilitate hospice care of patients receiving these advanced therapies. General access to hospice services for patients with HF at their organization was considered adequate by 30 of 46 participants. Most (32/46) reported that referrals are made too late. Conclusions: Hospice specialists reported widely varied practice experiences caring for patients with HF receiving advanced therapies, noted specific challenges for care of these patients, and expressed a desire for targeted HF education.","publication_date":"2018,7,23","publication_name":"American Journal of Hospice and Palliative Medicine","grobid_abstract_attachment_id":"113049373"},"document_type":"paper","pre_hit_view_count_baseline":null,"quality":"high","language":"en","title":"Getting to the Heart of the Matter: A Regional Survey of Current Hospice Practices Caring for Patients With Heart Failure Receiving Advanced Therapies","broadcastable":false,"draft":null,"has_indexable_attachment":true,"indexable":true}}["work"]; window.loswp.workCoauthors = [203100834]; window.loswp.locale = "en"; window.loswp.countryCode = "SG"; window.loswp.cwvAbTestBucket = ""; window.loswp.designVariant = "ds_vanilla"; window.loswp.fullPageMobileSutdModalVariant = "control"; 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src="https://0.academia-photos.com/203100834/64115561/52432103/s65_hunter.groninger.png" />Hunter Groninger</a></div><div class="ds-work-card--detail"><p class="ds-work-card--detail ds2-5-body-sm">2018, American Journal of Hospice and Palliative Medicine</p></div><div class="ds-work-card--button-container"><button class="ds2-5-button js-swp-download-button" data-signup-modal="{"location":"continue-reading-button--work-card","attachmentId":113049373,"attachmentType":"pdf","workUrl":"https://www.academia.edu/117101495/Getting_to_the_Heart_of_the_Matter_A_Regional_Survey_of_Current_Hospice_Practices_Caring_for_Patients_With_Heart_Failure_Receiving_Advanced_Therapies"}">See full PDF</button><button class="ds2-5-button ds2-5-button--secondary js-swp-download-button" 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ds-top-related-works--container"><h2 class="ds-related-content--heading">Related papers</h2><div class="ds-related-work--container js-wsj-grid-card" data-collection-position="0" data-entity-id="57235208" data-sort-order="default"><a class="ds-related-work--title js-wsj-grid-card-title ds2-5-body-md ds2-5-body-link" href="https://www.academia.edu/57235208/Hospice_Care_for_Heart_Failure_Patients">Hospice Care for Heart Failure Patients</a><div class="ds-related-work--metadata"><a class="js-wsj-grid-card-author ds2-5-body-sm ds2-5-body-link" data-author-id="63025501" href="https://independent.academia.edu/TrueRyndes">True Ryndes</a></div><p class="ds-related-work--metadata ds2-5-body-xs">2005</p><div class="ds-related-work--ctas"><button class="ds2-5-text-link ds2-5-text-link--inline js-swp-download-button" data-signup-modal="{"location":"wsj-grid-card-download-pdf-modal","work_title":"Hospice Care for Heart Failure Patients","attachmentId":72232471,"attachmentType":"pdf","work_url":"https://www.academia.edu/57235208/Hospice_Care_for_Heart_Failure_Patients","alternativeTracking":true}"><span class="material-symbols-outlined" style="font-size: 18px" translate="no">download</span><span class="ds2-5-text-link__content">Download free PDF</span></button><a class="ds2-5-text-link ds2-5-text-link--inline js-wsj-grid-card-view-pdf" href="https://www.academia.edu/57235208/Hospice_Care_for_Heart_Failure_Patients"><span class="ds2-5-text-link__content">View PDF</span><span class="material-symbols-outlined" style="font-size: 18px" translate="no">chevron_right</span></a></div></div><div class="ds-related-work--container js-wsj-grid-card" data-collection-position="1" data-entity-id="109083425" data-sort-order="default"><a class="ds-related-work--title js-wsj-grid-card-title ds2-5-body-md ds2-5-body-link" href="https://www.academia.edu/109083425/Digital_USD_Doctor_of_Nursing_Practice_Final_Manuscripts_Theses_and_Dissertations_Creating_a_Palliative_Care_Referral_to_Improve_Quality_of_Life_in_Heart_Failure_Patients_CREATING_A_PALLIATIVE_CARE_REFERRAL_TO_IMPROVE_QUALITY_OF_LIFE_IN_HEART_FAILURE_PATIENTS">Digital USD Doctor of Nursing Practice Final Manuscripts Theses and Dissertations Creating a Palliative Care Referral to Improve Quality of Life in Heart Failure Patients CREATING A PALLIATIVE CARE REFERRAL TO IMPROVE QUALITY OF LIFE IN HEART FAILURE PATIENTS</a><div class="ds-related-work--metadata"><a class="js-wsj-grid-card-author ds2-5-body-sm ds2-5-body-link" data-author-id="48463656" href="https://sandiego.academia.edu/JosephBurkard">Joseph Burkard</a></div><div class="ds-related-work--ctas"><button class="ds2-5-text-link ds2-5-text-link--inline js-swp-download-button" data-signup-modal="{"location":"wsj-grid-card-download-pdf-modal","work_title":"Digital USD Doctor of Nursing Practice Final Manuscripts Theses and Dissertations Creating a Palliative Care Referral to Improve Quality of Life in Heart Failure Patients CREATING A PALLIATIVE CARE REFERRAL TO IMPROVE QUALITY OF LIFE IN HEART FAILURE PATIENTS","attachmentId":107309984,"attachmentType":"pdf","work_url":"https://www.academia.edu/109083425/Digital_USD_Doctor_of_Nursing_Practice_Final_Manuscripts_Theses_and_Dissertations_Creating_a_Palliative_Care_Referral_to_Improve_Quality_of_Life_in_Heart_Failure_Patients_CREATING_A_PALLIATIVE_CARE_REFERRAL_TO_IMPROVE_QUALITY_OF_LIFE_IN_HEART_FAILURE_PATIENTS","alternativeTracking":true}"><span class="material-symbols-outlined" style="font-size: 18px" translate="no">download</span><span class="ds2-5-text-link__content">Download free PDF</span></button><a class="ds2-5-text-link ds2-5-text-link--inline js-wsj-grid-card-view-pdf" href="https://www.academia.edu/109083425/Digital_USD_Doctor_of_Nursing_Practice_Final_Manuscripts_Theses_and_Dissertations_Creating_a_Palliative_Care_Referral_to_Improve_Quality_of_Life_in_Heart_Failure_Patients_CREATING_A_PALLIATIVE_CARE_REFERRAL_TO_IMPROVE_QUALITY_OF_LIFE_IN_HEART_FAILURE_PATIENTS"><span class="ds2-5-text-link__content">View PDF</span><span class="material-symbols-outlined" style="font-size: 18px" translate="no">chevron_right</span></a></div></div><div class="ds-related-work--container js-wsj-grid-card" data-collection-position="2" data-entity-id="6584915" data-sort-order="default"><a class="ds-related-work--title js-wsj-grid-card-title ds2-5-body-md ds2-5-body-link" href="https://www.academia.edu/6584915/Patient_Carer_and_Professional_Perspectives_on_Barriers_and_Facilitators_to_Quality_Care_in_Advanced_Heart_Failure"> Patient, Carer and Professional Perspectives on Barriers and Facilitators to Quality Care in Advanced Heart Failure </a><div class="ds-related-work--metadata"><a class="js-wsj-grid-card-author ds2-5-body-sm ds2-5-body-link" data-author-id="32636752" href="https://independent.academia.edu/SaraMacdonald2">Sara Macdonald</a><span>, </span><a class="js-wsj-grid-card-author ds2-5-body-sm ds2-5-body-link" data-author-id="15100" href="https://glasgow.academia.edu/FrancesMair">Frances Mair</a></div><p class="ds-related-work--metadata ds2-5-body-xs">Published in PLOS One 28 March 2014</p><p class="ds-related-work--abstract ds2-5-body-sm">"Background Those with advanced heart failure (HF) experience high levels of morbidity and mortality, similar to common cancers. However, there remains evidence of inequity of access to palliative care services compared to people with cancer. This study examines patient, carer, and professional perspectives on current management of advanced HF and barriers and facilitators to improved care. Methods Qualitative study involving semi-structured interviews and focus groups with advanced HF patients (n = 30), carers (n = 20), and professionals (n = 65). Data analysed using Normalisation Process Theory (NPT) as the underpinning conceptual framework. Findings Uncertainty is ubiquitous in accounts from advanced HF patients and their caregivers. This uncertainty relates to understanding of the implications of their diagnosis, appropriate treatments, and when and how to seek effective help. Health professionals agree this is a major problem but feel they lack knowledge, opportunities, or adequate support to improve the situation. Fragmented care with lack of coordination and poor communication makes life difficult. Poor understanding of the condition extends to the wider circle of carers and means that requests for help may not be perceived as legitimate, and those with advanced HF are not prioritised for social and financial supports. Patient and caregiver accounts of emergency care are uniformly poor. Managing polypharmacy and enduring concomitant side effects is a major burden, and the potential for rationalisation exists. This study has potential limitations because it was undertaken within a single geographical location within the United Kingdom. Conclusions Little progress is being made to improve care experiences for those with advanced HF. Even in the terminal stages, patients and caregivers are heavily and unnecessarily burdened by health care services that are poorly coordinated and offer fragmented care. There is evidence that these poor experiences could be improved to a large extent by simple organisational rather than complex clinical mechanisms."</p><div class="ds-related-work--ctas"><button class="ds2-5-text-link ds2-5-text-link--inline js-swp-download-button" data-signup-modal="{"location":"wsj-grid-card-download-pdf-modal","work_title":" Patient, Carer and Professional Perspectives on Barriers and Facilitators to Quality Care in Advanced Heart Failure ","attachmentId":34695222,"attachmentType":"pdf","work_url":"https://www.academia.edu/6584915/Patient_Carer_and_Professional_Perspectives_on_Barriers_and_Facilitators_to_Quality_Care_in_Advanced_Heart_Failure","alternativeTracking":true}"><span class="material-symbols-outlined" style="font-size: 18px" translate="no">download</span><span class="ds2-5-text-link__content">Download free PDF</span></button><a class="ds2-5-text-link ds2-5-text-link--inline js-wsj-grid-card-view-pdf" href="https://www.academia.edu/6584915/Patient_Carer_and_Professional_Perspectives_on_Barriers_and_Facilitators_to_Quality_Care_in_Advanced_Heart_Failure"><span class="ds2-5-text-link__content">View PDF</span><span class="material-symbols-outlined" style="font-size: 18px" translate="no">chevron_right</span></a></div></div><div class="ds-related-work--container js-wsj-grid-card" data-collection-position="3" data-entity-id="39318053" data-sort-order="default"><a class="ds-related-work--title js-wsj-grid-card-title ds2-5-body-md ds2-5-body-link" href="https://www.academia.edu/39318053/Hospice_Use_Among_Patients_with_Heart_Failure">Hospice Use Among Patients with Heart Failure</a><div class="ds-related-work--metadata"><a class="js-wsj-grid-card-author ds2-5-body-sm ds2-5-body-link" data-author-id="9090011" href="https://independent.academia.edu/CrossSarah">Sarah H Cross</a></div><p class="ds-related-work--metadata ds2-5-body-xs">Cardiac Failure Review, 2019</p><p class="ds-related-work--abstract ds2-5-body-sm">Despite its many benefits, hospice care is underused for patients with heart failure. This paper discusses the factors contributing to this underuse and offers recommendations to optimise use for patients with heart failure and proposes metrics to optimise quality of hospice care for this patient group.</p><div class="ds-related-work--ctas"><button class="ds2-5-text-link ds2-5-text-link--inline js-swp-download-button" data-signup-modal="{"location":"wsj-grid-card-download-pdf-modal","work_title":"Hospice Use Among Patients with Heart Failure","attachmentId":59456691,"attachmentType":"pdf","work_url":"https://www.academia.edu/39318053/Hospice_Use_Among_Patients_with_Heart_Failure","alternativeTracking":true}"><span class="material-symbols-outlined" style="font-size: 18px" translate="no">download</span><span class="ds2-5-text-link__content">Download free PDF</span></button><a class="ds2-5-text-link ds2-5-text-link--inline js-wsj-grid-card-view-pdf" href="https://www.academia.edu/39318053/Hospice_Use_Among_Patients_with_Heart_Failure"><span class="ds2-5-text-link__content">View PDF</span><span class="material-symbols-outlined" style="font-size: 18px" translate="no">chevron_right</span></a></div></div><div class="ds-related-work--container js-wsj-grid-card" data-collection-position="4" data-entity-id="24134048" data-sort-order="default"><a class="ds-related-work--title js-wsj-grid-card-title ds2-5-body-md ds2-5-body-link" href="https://www.academia.edu/24134048/Patient_and_family_members_perceptions_of_palliative_care_in_heart_failure">Patient and family members' perceptions of palliative care in heart failure</a><div class="ds-related-work--metadata"><a class="js-wsj-grid-card-author ds2-5-body-sm ds2-5-body-link" data-author-id="33210529" href="https://rochester.academia.edu/SallyNorton">Sally Norton</a></div><p class="ds-related-work--metadata ds2-5-body-xs">Heart & Lung: The Journal of Acute and Critical Care, 2013</p><div class="ds-related-work--ctas"><button class="ds2-5-text-link ds2-5-text-link--inline js-swp-download-button" data-signup-modal="{"location":"wsj-grid-card-download-pdf-modal","work_title":"Patient and family members' perceptions of palliative care in heart failure","attachmentId":44492182,"attachmentType":"pdf","work_url":"https://www.academia.edu/24134048/Patient_and_family_members_perceptions_of_palliative_care_in_heart_failure","alternativeTracking":true}"><span class="material-symbols-outlined" style="font-size: 18px" translate="no">download</span><span class="ds2-5-text-link__content">Download free PDF</span></button><a class="ds2-5-text-link ds2-5-text-link--inline js-wsj-grid-card-view-pdf" href="https://www.academia.edu/24134048/Patient_and_family_members_perceptions_of_palliative_care_in_heart_failure"><span class="ds2-5-text-link__content">View PDF</span><span class="material-symbols-outlined" style="font-size: 18px" translate="no">chevron_right</span></a></div></div><div class="ds-related-work--container js-wsj-grid-card" data-collection-position="5" data-entity-id="16651586" data-sort-order="default"><a class="ds-related-work--title js-wsj-grid-card-title ds2-5-body-md ds2-5-body-link" href="https://www.academia.edu/16651586/Palliative_care_in_heart_failure_a_position_statement_from_the_palliative_care_workshop_of_the_Heart_Failure_Association_of_the_European_Society_of_Cardiology">Palliative care in heart failure: a position statement from the palliative care workshop of the Heart Failure Association of the European Society of Cardiology</a><div class="ds-related-work--metadata"><a class="js-wsj-grid-card-author ds2-5-body-sm ds2-5-body-link" data-author-id="38973230" href="https://independent.academia.edu/KennethDickstein">Kenneth Dickstein</a><span>, </span><a class="js-wsj-grid-card-author ds2-5-body-sm ds2-5-body-link" data-author-id="36008184" href="https://independent.academia.edu/AntonisPitsis">Antonis Pitsis</a></div><p class="ds-related-work--metadata ds2-5-body-xs">European Journal of Heart Failure, 2009</p><div class="ds-related-work--ctas"><button class="ds2-5-text-link ds2-5-text-link--inline js-swp-download-button" data-signup-modal="{"location":"wsj-grid-card-download-pdf-modal","work_title":"Palliative care in heart failure: a position statement from the palliative care workshop of the Heart Failure Association of the European Society of Cardiology","attachmentId":39100914,"attachmentType":"pdf","work_url":"https://www.academia.edu/16651586/Palliative_care_in_heart_failure_a_position_statement_from_the_palliative_care_workshop_of_the_Heart_Failure_Association_of_the_European_Society_of_Cardiology","alternativeTracking":true}"><span class="material-symbols-outlined" style="font-size: 18px" translate="no">download</span><span class="ds2-5-text-link__content">Download free PDF</span></button><a class="ds2-5-text-link ds2-5-text-link--inline js-wsj-grid-card-view-pdf" href="https://www.academia.edu/16651586/Palliative_care_in_heart_failure_a_position_statement_from_the_palliative_care_workshop_of_the_Heart_Failure_Association_of_the_European_Society_of_Cardiology"><span class="ds2-5-text-link__content">View PDF</span><span class="material-symbols-outlined" style="font-size: 18px" translate="no">chevron_right</span></a></div></div><div class="ds-related-work--container js-wsj-grid-card" data-collection-position="6" data-entity-id="93126724" data-sort-order="default"><a class="ds-related-work--title js-wsj-grid-card-title ds2-5-body-md ds2-5-body-link" href="https://www.academia.edu/93126724/Supportive_Cardiology_Moving_Palliative_Care_Upstream_for_Patients_Living_with_Advanced_Heart_Failure">Supportive Cardiology: Moving Palliative Care Upstream for Patients Living with Advanced Heart Failure</a><div class="ds-related-work--metadata"><a class="js-wsj-grid-card-author ds2-5-body-sm ds2-5-body-link" data-author-id="250303484" href="https://independent.academia.edu/Uy%C3%AAnPh%E1%BA%A1m331">Uyên Phạm</a></div><p class="ds-related-work--metadata ds2-5-body-xs">Journal of palliative medicine, 2017</p><p class="ds-related-work--abstract ds2-5-body-sm">Heart failure (HF) affects ∼600,000 Canadians and is a chronic, life-limiting illness marked by exacerbations of distressing symptoms requiring acute medical management, typically sought in Canada&#39;s emergency departments. HF often has an unpredictable illness trajectory and is a chronic terminal illness with a poor prognosis. Patients living with advanced HF have difficulty in accessing palliative care (PC) supports, which can result in unnecessary suffering as their HF progresses and they near end of life (EOL). This is, in part, due to a lack of research, helping clinicians to identify patients who are approaching EOL. In addition, the unpredictable nature of illness progression often precludes access to most EOL resources in our current prognosis-dependent healthcare system. PC teams focus on optimizing quality of life through symptom management and ensure that care plans are congruent with patient and family preferences. A PC team was embedded into our institution&#39;s exis...</p><div class="ds-related-work--ctas"><button class="ds2-5-text-link ds2-5-text-link--inline js-swp-download-button" data-signup-modal="{"location":"wsj-grid-card-download-pdf-modal","work_title":"Supportive Cardiology: Moving Palliative Care Upstream for Patients Living with Advanced Heart Failure","attachmentId":95951020,"attachmentType":"pdf","work_url":"https://www.academia.edu/93126724/Supportive_Cardiology_Moving_Palliative_Care_Upstream_for_Patients_Living_with_Advanced_Heart_Failure","alternativeTracking":true}"><span class="material-symbols-outlined" style="font-size: 18px" translate="no">download</span><span class="ds2-5-text-link__content">Download free PDF</span></button><a class="ds2-5-text-link ds2-5-text-link--inline js-wsj-grid-card-view-pdf" href="https://www.academia.edu/93126724/Supportive_Cardiology_Moving_Palliative_Care_Upstream_for_Patients_Living_with_Advanced_Heart_Failure"><span 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