TY - JOUR
T1 - Perceptions of bereaved caregivers and clinicians about end-of- life care for patients with destination therapy left ventricular assist devices
AU - Chuzi, Sarah
AU - Ogunseitan, Adeboye
AU - Cameron, Kenzie A.
AU - Grady, Kathleen
AU - Schulze, Lauren
AU - Wilcox, Jane E.
N1 - Funding Information:
This project was supported with funds from the Eleanor Wood Prince Grant Initiative of the Women’s Board of Northwestern Memorial Hospital (SP 49050).
Funding Information:
Dr Cameron has current funding from the American Heart Association and National Institutes of Health (NIH) (National Cancer Institute, National Institute on Aging [NIA], National Institute of Diabetes and Digestive and Kidney Diseases, and National Center for Advancing Translational Sciences). Dr Wilcox has received consulting/speaking honoraria from Medtronic, serves as a scientific consultant/advisory board member for Cytokinetics, and has current funding from the NIH. Dr Grady has received consulting fees from Amgen, speaker fees from the American Heart Association, and has current funding from the NIH (NIA and National Heart, Lung, and Blood Institute). The remaining authors have no disclosures to report.
Publisher Copyright:
© 2021 The Authors.
PY - 2021/8/3
Y1 - 2021/8/3
N2 - 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.
AB - 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.
KW - End-of-life care
KW - Palliative care
KW - Ventricular assist device
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U2 - 10.1161/JAHA.121.020949
DO - 10.1161/JAHA.121.020949
M3 - Article
C2 - 34308687
AN - SCOPUS:85112186727
SN - 2047-9980
VL - 10
JO - Journal of the American Heart Association
JF - Journal of the American Heart Association
IS - 15
M1 - e020949
ER -