Meaning and Practice of Palliative Care for Nursing Home Residents With Dementia at End of Life

Abstract

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: Residents' 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 be made about how residents live, as well as how they die, thus balancing quality of living/comfort with disease management.