Meaning and practice of palliative care for nursing home residents with dementia at end of life

Objective: To describe the meaning and practice of palliative care (PC) for nursing home (NH) residents with dementia at end of life (EOL). Design: Concurrent mixed methods (quantitative retrospective chart review and qualitative field study). Setting: Three NHs with varying approaches to EOL care: in-house non-Medicare hospice, Medicare hospice by outside agency, and Medicare hospice by outside agency plus specialized staff and comfort care unit. Results: Resident's course fluctuated between curative and comfort care, with a noticeable increase in symptoms right before death. Hospice care was short. Most died of complications of dementia. Families found care decisions based on residents' uncertain disease course difficult. Conclusion The role of PC for NH residents with dementia at EOL is complex and poorly understood. As they are in a residential setting, decisions need to he made about how residents live, as well as how they die, thus balancing quality of living/comfort with disease management.