Bereaved caregiver perspectives on the end-of-life experience of patients with a left ventricular assist device

Colleen K. McIlvennan, Jacqueline Jones, Larry A. Allen, Keith M. Swetz, Carolyn Nowels, Daniel D. Matlock

Research output: Contribution to journalArticle

35 Citations (Scopus)

Abstract

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 interviewswere 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.

Original languageEnglish (US)
Pages (from-to)534-539
Number of pages6
JournalJAMA Internal Medicine
Volume176
Issue number4
DOIs
StatePublished - Apr 1 2016
Externally publishedYes

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Heart-Assist Devices
Caregivers
Confusion
Delivery of Health Care
Hospice Care
Palliative Care
Patient Care
Emotions
Chronic Disease
Heart Failure
Interviews
Technology

ASJC Scopus subject areas

  • Internal Medicine

Cite this

Bereaved caregiver perspectives on the end-of-life experience of patients with a left ventricular assist device. / McIlvennan, Colleen K.; Jones, Jacqueline; Allen, Larry A.; Swetz, Keith M.; Nowels, Carolyn; Matlock, Daniel D.

In: JAMA Internal Medicine, Vol. 176, No. 4, 01.04.2016, p. 534-539.

Research output: Contribution to journalArticle

McIlvennan, Colleen K. ; Jones, Jacqueline ; Allen, Larry A. ; Swetz, Keith M. ; Nowels, Carolyn ; Matlock, Daniel D. / Bereaved caregiver perspectives on the end-of-life experience of patients with a left ventricular assist device. In: JAMA Internal Medicine. 2016 ; Vol. 176, No. 4. pp. 534-539.
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