Family caregiver narratives of hospice death vigils

BMJ Support Palliat Care. 2024 Oct 23:spcare-2024-005128. doi: 10.1136/spcare-2024-005128. Online ahead of print.

Abstract

Background: Often, family members and friends gather around a dying hospice patient to say goodbye in what is known as a death vigil. The purpose of this study is to explore the stories and experiences of family caregivers of hospice patients who participated in death vigils.

Methods: Qualitative analysis of interviews with 50 hospice family caregivers explored the experiences and memories affiliated with death vigils. Grounded in the Hospice Use Model, a Framework Analysis method was used to analyse transcripts and identify themes to answer the research questions.

Results: Hospice family caregivers identified community resources, community health resources, hospice agency factors and individual patient and caregiver factors as impacting their participation in the death vigil and their memory of the experience.

Conclusions: Family members perceived and remembered both positive and negative experiences during their death vigil. Their narratives included recommendations for change in the death vigil, including advice for others going through the vigil, changes in operational and clinical care during the vigil and policy changes needed to improve the experience.

Keywords: Bereavement; Communication; End of life care; Hospice care; Palliative Care.