Dying in hospital: Qualitative study among caregivers of terminally ill patients who are transferred to the emergency department

Introduction > Most people in France die in the hospital, even though a majority would like to die at home. These end-of-life hospital admissions sometimes occur in the emergency setting, in the hours preceding death. Objective > To understand the motives that incite main natural caregivers to transfer terminally ill patients at the end of life to the emergency department. Methods > A qualitative study was performed among caregivers of terminally ill patients receiving palliative care and living at home, and who died within 72 hours of being admitted to the emergency department of the University Hospital of Besancon, France. Results > Eight interviews were performed; average duration 48 minutes. The caregivers described the difficult conditions of daily life, characterised by marked anguish about what the future might hold. Although they were aware that the patient was approaching the end of life, the caregivers did not imagine the death at all. The transfer to the emergency department was considered as a logical event, occurring in the continuity of the home care, and was not in any way criticised, even long after death had occurred. Overall, the caregivers had a positive opinion of how the end-of-life accompaniment went. Discussion > Difficulty in imagining death at home is underpinned by its unpredictable nature, and by the accumulation of suffering and anguish in the caregiver. Hospital admission and medicalisationof death help to channel the caregiver's anguish. In order to improve end-of-life accompaniment, it is mandatory to make home management more reassuring for the patient and their family.