Perceptions of Bereaved Caregivers and Clinicians About End‐of‐Life Care for Patients With Destination Therapy Left Ventricular Assist Devices

Abstract

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.

Keywords

• end‐of‐life care
• palliative care
• ventricular assist device