Abstract 14926: What’s Missing? LVAD Patient and Caregiver Experiences With End-of-Life Planning
Introduction: The use of left ventricular assist devices (LVADs) continues to increase in patients with advanced heart disease. LVADs can extend and improve quality of life; nevertheless, some patients will ultimately die with the device in place. End-of-life (EOL) planning should begin before implantation and include specific plans related to device deactivation and EOL services such as palliative care (PC) or hospice. Poor device management at EOL may contribute to a decreased quality of death for patients and distress for family members.
Purpose: The purpose of this study was to examine the post-implantation experiences of patients with LVADs and their caregivers including: conversations about device deactivation, use of hospice services, and whether device deactivation occurred prior to death.
Methods: Patient-caregiver dyads (n=35) participated in a longitudinal study on the EOL needs of advanced heart failure patients living with an LVAD. During qualitative interviews, dyads were asked about their knowledge of device deactivation as part of advance care planning and their experiences with EOL services. After patients died, caregivers (n=6) were interviewed about device deactivation and EOL services prior to death. Chart reviews were conducted to determine use of EOL services.
Results: The majority of patients and caregivers had no discussions with health care providers concerning device deactivation at the time of implantation, throughout the illness trajectory, or as patients were actively dying. Only 60% of the patients (21/35) received a PC consult prior to implantation. Of the 6 LVAD patients who died, two were deactivated prior to death and three had PC or hospice only during the terminal admission (days to hours prior to death). Only one patient had ongoing PC and hospice support throughout the EOL.
Conclusions: Discussions concerning device deactivation should ideally occur at the time of implantation and continue through the EOL. PC services should be available throughout the trajectory. EOL services should transition with patients and caregivers across episodes of care. Current practice is less than optimal. By achieving these goals, healthcare providers can improve the quality of the death experience for patients and caregivers.
Author Disclosures: L. Kitko: Research Grant; Modest; American Heart Association. J.E. Hupcey: None. B. Birriel: None. W. Alonso: None.
- © 2016 by American Heart Association, Inc.