Original Investigation
April 2016

Bereaved Caregiver Perspectives on the End-of-Life Experience of Patients With a Left Ventricular Assist Device

Author Affiliations
  • 1Section of Advanced Heart Failure and Transplantation, Division of Cardiology, University of Colorado School of Medicine, Aurora
  • 2Colorado Cardiovascular Outcomes Research Consortium, University of Colorado School of Medicine, Aurora
  • 3University of Colorado School of Nursing, Aurora
  • 5Birmingham/Atlanta Geriatric Research, Education, and Clinical Center, Department of Veterans Affairs, Birmingham VA Medical Center, Birmingham, Alabama
  • 6Center for Palliative and Supportive Care, University of Alabama at Birmingham
  • 4Division of General Internal Medicine, University of Colorado School of Medicine, Aurora

Copyright 2016 American Medical Association. All Rights Reserved. Applicable FARS/DFARS Restrictions Apply to Government Use.

JAMA Intern Med. 2016;176(4):534-539. doi:10.1001/jamainternmed.2015.8528

Importance  For patients and their loved ones, decisions regarding the end of life in the setting of chronic progressive illness are among the most complex in health care. Complicating these decisions are increasingly available, invasive, and potentially life-prolonging technologies such as the left ventricular assist device (LVAD).

Objective  To understand the experience of bereaved caregivers and patients at the end of life who have an LVAD.

Design, Setting, and Participants  Semistructured, in-depth interviews were conducted between September 10 and November 21, 2014, with 8 bereaved caregivers of patients with an LVAD who were recruited from a single institution. Data were analyzed from December 13, 2014, to February 18, 2015, using a mixed inductive and deductive approach.

Main Outcomes and Measures  Themes from semistructured interviews.

Results  The 8 caregivers (6 females) described 3 main themes that coalesced around feelings of confusion in the final weeks with their loved ones: (1) the process of death with an LVAD, (2) the legal and ethically permissible care of patients with an LVAD approaching death, and (3) fragmented integration of palliative and hospice care.

Conclusions and Relevance  Despite increasing use of LVADs in patients with advanced heart failure, bereaved caregivers of patients with an LVAD describe a high level of confusion at the end of life. There remains a need for the health care community to develop clear guidance on the management of patients with an LVAD at the end of life. Future work will focus on the educational process and the ideal timing and reiteration of such information to patients and families.