Symptom Experiences of Residents Dying in Assisted Living

Objectives: To identify the end-of-life symptom experiences of residents who died in assisted living, to describe family satisfaction with the end-of-life care, and to compare end-of-life symptom distress across 4 settings: assisted living, private home, nursing home, and hospital. Design: In-person interviews with family members of people aged 65 or older who had died 2 to 4 months earlier in an assisted-living facility. Symptom distress reports were compared with data from prior studies in other settings. Setting: A mixed urban-rural community in the Northwest. Participants: Twenty-five family members who self-identified as closely involved in the care or decision making for a relative who died in an assisted-living facility. Measurements: A 28-item interview guide composed of demographic questions, the modified Family Memorial Symptom Assessment Scale-Global Distress Index (FMSAS-GDI), and open-ended items describing the decedent's last days and family satisfaction with care and symptom management. Results: Symptoms experienced by at least 75% of decedents were lack of energy, loss of appetite, dry mouth, drowsiness, and pain. Symptom experiences in assisted living were comparable to those in other settings. Families overall were satisfied with end-of-life care in assisted living, but had concerns about communication among providers, inadequate monitoring of their decedent, and lack of staff knowledge specific to symptom management. Conclusion: Residents dying in assisted-living settings have similar symptom distress experiences as people dying in other, more studied settings. As residents and families alike overwhelmingly support resident deaths in their assisted living "home," policies, structures, and processes are needed to ensure that end-of-life care needs are met.