Dying at home: What is needed? Findings from a nationwide retrospective cross-sectional online survey of bereaved people in Germany

Abstract

Abstract Objectives According to the “Last Year of Life in Cologne” study, 68% of patients with a serious and terminal illness wanted to die at home, but 42% died in hospital. Only 1 in 5 died at home. Most people want to spend their last days and hours at home, but the reality is that this is not always possible. Recommendations are needed on how best to support families to enable people to die at home – if this is their preferred place of death. Our aim was to identify the factors that make it possible for people to die at home and to analyze factors of dying at home. Methods Germany-wide quantitative cross-sectional online survey of bereaved adult relatives. Results The needs of 320 relatives of patients who wished to die at home were explored. Of these, 198 patients died at home and 122 did not. In the last 3 months of life, caregivers needed support in managing out-of-hours care (p < 0.001), financing (p = 0.012), preparing and organizing home care (both p < 0.001), communicating with the patient and medical staff (p = 0.012 and p = 0.009, respectively), and pain management (p < 0.001). Relatives whose next of kin did not die at home had higher needs, suggesting that these factors are key to home care of the dying. Significance of results The process of dying at home begins long before the actual dying phase. To minimize caregiver burden and improve symptom management, advanced home care plans are needed, with ongoing reassessment of family preferences and abilities.