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.

Relational ethics of delirium care: Findings from a hospice ethnography

“…As described earlier, our previous paper about this study focused more on hospice care‐givers’ engagement with the family's moral experience of delirium (Wright et al., ). In that paper, we described how hospice care‐givers supported family members, at risk for being traumatized by their loved ones in delirium, by suggesting to them that the losses associated with delirium are ‘normal’ at the end of life.…”

Conversations about Death and Dying with Older People: An Ethnographic Study in Nursing Homes

“…In another example, the older person is rehashing the subject of death and dying without achieving a sense of closure and readiness for the end of life. This differs from the ideal of the good dying process [ 7 , 44 ] grounded in palliative care and the idea of providing a good death, drawing upon a culturally established framework of how dying should occur and be experienced. Equally, in our study, when the ANs experience behavior and communication from the residents that is not in accordance with an assumed good dying process, they may respond with distraction.…”

Improving delirium recognition and assessment for people receiving inpatient palliative care: a mixed methods meta-synthesis

“…For example, an ethnographic study of delirium practice in a Canadian hospice unit (Wright et al, 2015) reported that clinicians encouraged family members of dying patients with distressing delirious behaviors to think that they were no longer seeing the person they knew and loved, and even that they were to some extent "already dead" (p. 963). Clinicians believed that a helpful and compassionate strategy was to explain to a family that becoming "…withdrawn, confused, somnolent, or restless…" (p.962) was normal for a hospice patient (Wright et al, 2015). While these statements were intended to relieve a family's distress, they may also have had unintended and potentially harmful consequences.…”