Terminal care for persons with advanced dementia in the nursing home and home care settings

Many older persons with advanced dementia receive terminal care in nursing homes, others remain in the community with home care services.

To describe and compare the end-of-life experience of persons dying with advanced dementia in the nursing home and home care settings.

Retrospective cohort study.

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).

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.

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).

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.