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Susan L. Mitchell, MD, MPH, FRCPC; Dan K. Kiely, MPH, MA; Mary Beth Hamel, MD, MPH

Arch Intern Med. 2004;164:321-326.

Background  Nursing homes are important providers of end-of-life care to persons with advanced dementia.

Methods  We used data from the Minimum Data Set (June 1, 1994, to December 31, 1997) to identify persons 65 years and older who died with advanced dementia (n = 1609) and terminal cancer (n = 883) within 1 year of admission to any New York State nursing home. Variables from the Minimum Data Set assessment completed within 120 days of death were used to describe and compare the end-of-life experiences of these 2 groups.

Results  At nursing home admission, only 1.1% of residents with advanced dementia were perceived to have a life expectancy of less than 6 months; however, 71.0% died within that period. Before death, 55.1% of demented residents had a do-not-resuscitate order, and 1.4% had a do-not-hospitalize order. Nonpalliative interventions were common among residents dying with advanced dementia: tube feeding, 25.0%; laboratory tests, 49.2%; restraints, 11.2%; and intravenous therapy, 10.1%. Residents with dementia were less likely than those with cancer to have directives limiting care but were more likely to experience burdensome interventions: do-not-resuscitate order (adjusted odds ratio [OR], 0.12; 95% confidence interval [CI], 0.09-0.16), do-not-hospitalize order (adjusted OR, 0.33; 95% CI, 0.16-0.66), tube feeding (adjusted OR, 2.21; 95% CI, 1.51-3.23), laboratory tests (adjusted OR, 2.53; 95% CI, 2.01-3.18), and restraints (adjusted OR, 1.79; 95% CI, 1.23-2.61). Distressing conditions common in advanced dementia included pressure ulcers (14.7%), constipation (13.7%), pain (11.5%), and shortness of breath (8.2%).

Conclusions  Nursing home residents dying with advanced dementia are not perceived as having a terminal condition, and most do not receive optimal palliative care. Management and educational strategies are needed to improve end-of-life care in advanced dementia.

From the Research and Training Institute, Hebrew Rehabilitation Center for Aged (Dr Mitchell and Mr Kiely), the Department of Medicine (Dr Mitchell and Mr Kiely), and the Division of General Medicine and Primary Care (Dr Hamel), Beth Israel Deaconess Medical Center, and the Division on Aging, Harvard Medical School (Dr Mitchell), Boston, Mass. The authors have no relevant financial interest in this article.

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