Dying with A Destination Therapy Left Ventricular Assist Device: Perspectives, Perceptions, and Experiences of Bereaved Caregivers and Clinicians

Background Left ventricular assist devices implanted as destination therapy (DT LVADs) improve quality of life and survival but have significant morbidity and mortality. Although major guideline associations emphasize the importance of delivering comprehensive end-of-life care to patients with DT LVADs, studies suggest that these patients may receive suboptimal preparation for and care at the end of life. To address this unmet need, we sought to understand bereaved caregiver and clinician perspectives, perceptions, and experiences with end-of-life preparation and care for DT LVAD patients. Methods We conducted semi-structured, in-person interviews with bereaved caregivers and interdisciplinary VAD clinicians. Interviews were 30-90 minutes, audio-recorded, and transcribed verbatim. We used a 2-cycle team-based iterative inductive approach to coding and analysis. Results Seven caregivers (mean age 59, and primarily female, white, and spouses of deceased DT LVAD patients), and ten clinicians (2 advanced heart failure cardiologists, 2 cardiac surgeons, 2 nurse practitioner LVAD coordinators, 2 palliative care physicians, 1 cardiac psychologist, and 1 social worker; on average 9 years in practice; 50% female) were interviewed. Six major themes were derived from the interviews including 1) understanding the spectrum of living versus dying with an LVAD, 2) prioritizing end-of-life preparation and decision making, 3) communicating uncertainty while providing support, 4) divergent opinions concerning LVAD withdrawal, 5) perception of the LVAD team as invincible, and 6) providers’ struggle with defining roles pertaining to end of life (Table 1). Conclusions This study reveals six major aspects of care that clinicians and caregivers encounter for DT LVAD patients at end of life. Programmatic changes may address some aspects, including standardizing the LVAD withdrawal process with added psychological support for both caregivers and team members, incorporating advance care planning and end-of-life discussions into routine VAD care, and providing education to clinicians about communication in the setting of prognostic uncertainty.