Terminal Care for Persons with Advanced Dementia in the Nursing Home and Home Care Settings

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Abstract
Background: Many older persons with advanced dementia receive terminal care in nursing homes, others remain in the community with home care services. Objectives: To describe and compare the end-of-life experience of persons dying with advanced dementia in the nursing home and home care settings. Design: Retrospective cohort study. Setting/Subjects: Persons 65 years or older with advanced dementia who died within 1 year of admission to either a nursing home in Michigan between July 1, 1998 until December 31, 2000 (n = 2730), or the state's publicly funded home and community-based services from October 1, 1998 until December 31, 2001 (n = 290). Measurements: Data were derived from the Minimum Data Set (MDS)-Nursing home Version 2.0 for the institutionalized sample, and the MDS-Home Care for the community-based sample. Variables from the MDS assessment completed within 180 days of death were used to describe the end-of-life experiences of these two groups. Results: Nursing home residents dying with advanced dementia were older, had greater functional impairment, and more behavior problems compared to home care clients. Few subjects in the nursing home (10.3%) and home care (15.6%) cohorts were perceived to have less than 6 months to live. Only 5.7% of nursing home residents and 10.7% home care clients were referred to hospice. Hospitalizations were frequent: nursing home, 43.7%; home care, 31.5%. Pain and shortness of breath were common in both settings. End-of-life variables independently associated with nursing home versus home care included: hospice (adjusted odds ratio [AOR] 0.26, 95% confidence interval [CI], 0.16–0.43), life expectancy less than 6 months (AOR 0.31; 95% CI, 0.20–0.48), advance directives (AOR, 1.48; 95% CI, 1.11–1.96), pain (AOR, 0.38; 95% CI, 0.29–0.50), shortness of breath (AOR 0.20; 95% CI (0.13-0.28), and oxygen therapy (AOR, 2.47; 95% CI, 1.51–4.05). Conclusions: Persons dying with advanced dementia admitted to nursing homes have different characteristics compared to those admitted to home care services. Their end-of-life experiences also differ in these two sites of care. However, palliative care was not optimal in either setting.