title: 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.
  
  
  OBJECTIVE
  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.
  
  
  METHODS
  Ethnography.
  
  
  METHODS
  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 favor 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.
authors: University of Ottawa, Ottawa, ON, Canada davidwright@uottawa.ca.
authors: David Kenneth
authors: DK
authors: Wright
authors: University of Ottawa, Ottawa, ON, Canada.
authors: Susan
authors: S
authors: Brajtman
authors: University of Ottawa, Ottawa, ON, Canada.
authors: Betty
authors: B
authors: Cragg
authors: McGill University, Montreal, QC, Canada.
authors: Mary Ellen
authors: ME
authors: Macdonald
mesh_terms: D000884:Anthropology, Cultural; D001293:Attitude to Death; D002170:Canada; D017028:Caregivers / Q000523:psychology*; D003693:Delirium / Q000209:etiology / Q000523:psychology*; D005190:Family / Q000523:psychology*; D017051:Hospice Care / Q000379:methods / Q000592:standards*; D006801:Humans; D007407:Interviews as Topic; D019370:Observation; D011368:Professional-Family Relations; D019452:Terminally Ill / Q000523:psychology*
keywords: Delirium; ethics; ethnography; hospices; nursing; palliative care; qualitative research