Perceptions of Bereaved Caregivers and Clinicians About End‐of‐Life Care for Patients With Destination Therapy Left Ventricular Assist Devices
Background Patients with left ventricular assist devices (LVADs) implanted as destination therapy may receive suboptimal preparation for and care at the end of life, but there is limited understanding of the reasons for these shortcomings. Exploring perceptions of individuals (caregivers and clinici...
| Main Authors: | , , , , , |
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| Format: | Article |
| Language: | English |
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Wiley
2021-08-01
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| Series: | Journal of the American Heart Association: Cardiovascular and Cerebrovascular Disease |
| Subjects: | |
| Online Access: | https://www.ahajournals.org/doi/10.1161/JAHA.121.020949 |
| _version_ | 1829116013013106688 |
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| author | Sarah Chuzi Adeboye Ogunseitan Kenzie A. Cameron Kathleen Grady Lauren Schulze Jane E. Wilcox |
| author_facet | Sarah Chuzi Adeboye Ogunseitan Kenzie A. Cameron Kathleen Grady Lauren Schulze Jane E. Wilcox |
| author_sort | Sarah Chuzi |
| collection | DOAJ |
| description | Background Patients with left ventricular assist devices (LVADs) implanted as destination therapy may receive suboptimal preparation for and care at the end of life, but there is limited understanding of the reasons for these shortcomings. Exploring perceptions of individuals (caregivers and clinicians) who are closely involved in the end‐of‐life experience with patients with destination therapy LVADs can help identify key opportunities for improving care. Methods and Results We conducted semistructured qualitative interviews with 7 bereaved caregivers of patients with destination therapy LVADs and 10 interdisciplinary LVAD clinicians. Interviews explored perceptions of preparing for end of life, communicating about end of life, and providing and receiving end‐of‐life care, and were analyzed using a 2‐step team‐based inductive approach to coding and analysis. Six themes pertaining to end‐of‐life experiences were derived: (1) timing end‐of‐life discussions in the setting of unpredictable illness trajectories, (2) prioritizing end‐of‐life preparation and decision‐making, (3) communicating uncertainty while providing support and hope, (4) lack of consensus on responsibility for end‐of‐life discussions, (5) perception of the LVAD team as invincible, and (6) divergent perceptions of LVAD withdrawal. Conclusions This study revealed 6 unique aspects of end‐of‐life care for patients with destination therapy LVADs as reported by clinicians and caregivers. Themes coalesced around communication, team‐based care, and challenges unique to patients with LVADs at end of life. Programmatic changes may address some aspects, including training clinicians in LVAD‐specific communication skills. Other aspects, such as standardizing the role of the palliative care team and developing practical interventions that enable timely advance care planning during LVAD care, will require multifaceted interventions. |
| first_indexed | 2024-12-12T16:27:40Z |
| format | Article |
| id | doaj.art-492a726a29bf4aa1830b6a161fe77100 |
| institution | Directory Open Access Journal |
| issn | 2047-9980 |
| language | English |
| last_indexed | 2024-12-12T16:27:40Z |
| publishDate | 2021-08-01 |
| publisher | Wiley |
| record_format | Article |
| series | Journal of the American Heart Association: Cardiovascular and Cerebrovascular Disease |
| spelling | doaj.art-492a726a29bf4aa1830b6a161fe771002022-12-22T00:18:51ZengWileyJournal of the American Heart Association: Cardiovascular and Cerebrovascular Disease2047-99802021-08-01101510.1161/JAHA.121.020949Perceptions of Bereaved Caregivers and Clinicians About End‐of‐Life Care for Patients With Destination Therapy Left Ventricular Assist DevicesSarah Chuzi0Adeboye Ogunseitan1Kenzie A. Cameron2Kathleen Grady3Lauren Schulze4Jane E. Wilcox5Division of Cardiology Department of Medicine Feinberg School of Medicine Northwestern University Chicago ILDivision of Hospital Medicine (Palliative Care) Department of Medicine Feinberg School of Medicine Northwestern University Chicago ILDivision of General Internal Medicine and Geriatrics Department of Medicine Feinberg School of Medicine Northwestern University Chicago ILDivision of Cardiology Department of Medicine Feinberg School of Medicine Northwestern University Chicago ILDivision of Cardiac Surgery Department of Surgery Feinberg School of Medicine Northwestern University Chicago ILDivision of Cardiology Department of Medicine Feinberg School of Medicine Northwestern University Chicago ILBackground Patients with left ventricular assist devices (LVADs) implanted as destination therapy may receive suboptimal preparation for and care at the end of life, but there is limited understanding of the reasons for these shortcomings. Exploring perceptions of individuals (caregivers and clinicians) who are closely involved in the end‐of‐life experience with patients with destination therapy LVADs can help identify key opportunities for improving care. Methods and Results We conducted semistructured qualitative interviews with 7 bereaved caregivers of patients with destination therapy LVADs and 10 interdisciplinary LVAD clinicians. Interviews explored perceptions of preparing for end of life, communicating about end of life, and providing and receiving end‐of‐life care, and were analyzed using a 2‐step team‐based inductive approach to coding and analysis. Six themes pertaining to end‐of‐life experiences were derived: (1) timing end‐of‐life discussions in the setting of unpredictable illness trajectories, (2) prioritizing end‐of‐life preparation and decision‐making, (3) communicating uncertainty while providing support and hope, (4) lack of consensus on responsibility for end‐of‐life discussions, (5) perception of the LVAD team as invincible, and (6) divergent perceptions of LVAD withdrawal. Conclusions This study revealed 6 unique aspects of end‐of‐life care for patients with destination therapy LVADs as reported by clinicians and caregivers. Themes coalesced around communication, team‐based care, and challenges unique to patients with LVADs at end of life. Programmatic changes may address some aspects, including training clinicians in LVAD‐specific communication skills. Other aspects, such as standardizing the role of the palliative care team and developing practical interventions that enable timely advance care planning during LVAD care, will require multifaceted interventions.https://www.ahajournals.org/doi/10.1161/JAHA.121.020949end‐of‐life carepalliative careventricular assist device |
| spellingShingle | Sarah Chuzi Adeboye Ogunseitan Kenzie A. Cameron Kathleen Grady Lauren Schulze Jane E. Wilcox Perceptions of Bereaved Caregivers and Clinicians About End‐of‐Life Care for Patients With Destination Therapy Left Ventricular Assist Devices Journal of the American Heart Association: Cardiovascular and Cerebrovascular Disease end‐of‐life care palliative care ventricular assist device |
| title | Perceptions of Bereaved Caregivers and Clinicians About End‐of‐Life Care for Patients With Destination Therapy Left Ventricular Assist Devices |
| title_full | Perceptions of Bereaved Caregivers and Clinicians About End‐of‐Life Care for Patients With Destination Therapy Left Ventricular Assist Devices |
| title_fullStr | Perceptions of Bereaved Caregivers and Clinicians About End‐of‐Life Care for Patients With Destination Therapy Left Ventricular Assist Devices |
| title_full_unstemmed | Perceptions of Bereaved Caregivers and Clinicians About End‐of‐Life Care for Patients With Destination Therapy Left Ventricular Assist Devices |
| title_short | Perceptions of Bereaved Caregivers and Clinicians About End‐of‐Life Care for Patients With Destination Therapy Left Ventricular Assist Devices |
| title_sort | perceptions of bereaved caregivers and clinicians about end of life care for patients with destination therapy left ventricular assist devices |
| topic | end‐of‐life care palliative care ventricular assist device |
| url | https://www.ahajournals.org/doi/10.1161/JAHA.121.020949 |
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