“I Was Ready to Take Him Home”: Next-of-Kin's Accounts of Loved One's Death During Hospice and Palliative Care Discussions in Veterans Affairs Medical Centers

Abstract

This study explored next-of-kin's retrospective accounts of hospice and palliative care discussions for hospitalized veterans. In-depth, face-to-face interviews were used to generate narrative accounts of 78 next-of-kin's experience of their loved one's hospital care during the last days of the patient's life. One-third of participants reported taking part in a hospice or palliative care discussion during the patient's final hospitalization. In over one-half of those cases, the patients died before discharge or transfer to hospice or palliative care was accomplished. Hospice and palliative care discussions in the hospital setting shaped family perceptions of the patients’ care, directed family efforts in the days prior to death, and engendered anticipation of remaining quality time with the patient. Discussions about hospice or palliative care have meaning, emotional impact, practical effects, and unintended consequences for next-of-kin. Social workers in hospital settings can play a critical role in supporting family members through the hospice and palliative care discussion process and facilitate timely care transitions. They also can attend to the psychosocial concerns of family members, particularly when death occurs prior to discharge to hospice or transfer to an inpatient palliative care service.

KEYWORDS:

• hospice
• palliative care
• family
• bereavement

ACKNOWLEDGMENTS

The findings reported here are from the qualitative component of a larger study of end-of-life hospital care in VA settings, “Impact of An Intervention to Improve Care at Life's End in VA Medical Centers” (IIR 03-126, PI: KL Burgio, Co-PI: FA Bailey). The authors wish to thank the principal investigators, study coordinators, and pastoral care staff at each study site, as well as the next-of-kin of deceased veterans who shared their stories of their loved one's end-of-life care.