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Original Investigation |

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

Colleen K. McIlvennan, DNP, ANP1,2; Jacqueline Jones, PhD, RN3; Larry A. Allen, MD, MHS1,2; Keith M. Swetz, MD, MA5,6; Carolyn Nowels, MSPH4; Daniel D. Matlock, MD, MPH2,4
[+] 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
4Division of General Internal Medicine, University of Colorado School of Medicine, 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
JAMA Intern Med. 2016;176(4):534-539. doi:10.1001/jamainternmed.2015.8528.
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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.

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The American Medical Association is accredited by the Accreditation Council for Continuing Medical Education to provide continuing medical education for physicians. The AMA designates this journal-based CME activity for a maximum of 1 AMA PRA Category 1 CreditTM per course. Physicians should claim only the credit commensurate with the extent of their participation in the activity. Physicians who complete the CME course and score at least 80% correct on the quiz are eligible for AMA PRA Category 1 CreditTM.
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