Delirium as letting go: an ethnographic analysis of hospice care and family moral experience

Abstract

Background: Delirium is extremely common in dying patients, and appears to be a major threat to the family’s moral experience of a good death in end-of-life care. Aim: To illustrate one of the ways in which hospice caregivers conceptualize end-of-life delirium, and the significance of this conceptualization for the relationships that they form with patients’ families in the hospice setting. Design: Ethnography. Setting/participants: Ethnographic fieldwork was conducted at a nine-bed, freestanding residential hospice, located in a suburban community of eastern Canada. Data collection methods included 15 months of participant observation, 28 semi-structured audio-recorded interviews with hospice caregivers, and document analysis. Results: Hospice caregivers draw on a culturally established framework of normal dying to help families come to terms with clinical end-of-life phenomena, including delirium. By offering explanations about delirium as a natural feature of the dying process, hospice caregivers strive to protect for families the integrity of the good death ideal. Conclusions: Within hospice culture, there is usefulness to deemphasizing delirium as a pathological neuropsychiatric complication, in favour of acknowledging delirious changes as signs of normal dying. This has implications for how we understand the role of nurses and other caregivers with respect to delirium assessment and care, which to date has focused largely on practices of screening and management.