Abstract 334: Confusion: Bereaved Caregiver Perspectives on the End-of-Life Experience with a Left Ventricular Assist Device

Background: For patients and their loved ones, decisions at the end-of-life in the setting of chronic progressive illness are among the most complex in medicine. Complicating these decisions are increasingly available, invasive, and potentially life-prolonging technologies. One such technology is the left ventricular assist device (LVAD). Understanding the experience of dying with an LVAD can guide efforts to minimize distress for patients and their caregivers. Objective: To synthesize caregivers’ perspectives about the caregiver and patient experience with care transitions at end-of-life with LVAD. Methods: We conducted semi-structured, in-depth interviews with bereaved caregivers of patients with LVADs previously cared for at the University of Colorado. We excluded caregivers if the patient’s death had occurred greater than 3 years prior to the interview date. Data were analyzed using a mixed inductive and deductive approach. Results: Between September and November 2014, 8 bereaved caregivers were interviewed. Interview durations ranged from 31-65 minutes (mean=40). The majority (n=5) were widows of the patients; other caregivers included 2 friends and a mother. Caregivers described three main themes that coalesced around feelings of confusion in those final days and weeks with their loved ones: 1) confusion about the process of death with an LVAD: “[my daughter] said ‘You know Mom, he probably can't die. Even though he wants to. Because everything is keeping him going’”; 2) confusion about the legal and ethically permissible care of patients approaching death with an LVAD: “They don't actually turn it off until certain signs aren't there, ‘cause as long as there’s a chance you know? It would be considered murder.”; 3) confusion about the fragmented integration of palliative and hospice care: “He was bleeding again. And I didn't know what to do. I didn't know if we could take him to the ER? And I really didn't understand palliative care, in its entirety.” Conclusions: Despite increasing use of LVADs in patients with advanced heart failure, bereaved caregivers of LVAD patients describe a high level of confusion at the end of life: about the nature of the death, about the medical decisions to be made, and about the support services provided. There remains a need to develop LVAD-specific support for caregivers, as well as hospice and palliative care programs, to manage complex patient care needs at the end-of-life.