Abstract
BACKGROUND: While advanced care planning (ACP) is recommended in dementia and cancer care, there are unique challenges in ACP for individuals with dementia, such as the insidious onset and progression of cognitive impairment, potentially leading to high-intensity care at the end of life (EOL) for this population. OBJECTIVE: To compare ACP completion and receipt of high-intensity care at the EOL between decedents with dementia versus cancer. DESIGN: Retrospective longitudinal cohort study. PARTICIPANTS: Participants of the U.S. Health and Retirement Study who died between 2000 and 2014 with dementia (n = 2099) and cancer (n = 1137). MAIN MEASURES: Completion of three types of ACP (living will, durable power of attorney for healthcare [DPOAH], discussions of preferences for EOL care) and three measures of EOL care intensity (in-hospital death, intensive care unit [ICU] care in the last 2 years of life, life support use in the last 2 years of life). KEY RESULTS: Use of living will was lower in dementia than in cancer (adjusted proportion, 49.9% vs. 56.9%; difference, - 7.0 percentage points [pp, 95% CI, - 13.3 to - 0.7]; p = 0.03). Use of DPOAH was similar between the two groups, but a lower proportion of decedents with dementia had discussed preferences compared to decedents with cancer (53.0% vs. 68.1%; - 15.1 pp [95% CI, - 19.3 to - 10.9]; p < 0.001). In-hospital death was higher in dementia than in cancer (29.5% vs. 19.8%; + 9.7 pp [95% CI, + 5.9 to + 13.5]; p < 0.001), although use of ICU care was lower (20.9% vs. 26.1%; - 5.2 pp [95% CI, - 9.8 to - 0.7]; p = 0.03). Use of life support was similar between the two groups. CONCLUSIONS: Individuals with dementia complete ACP less frequently and might be receiving higher-intensity EOL care than those with cancer. Interventions targeting individuals with dementia may be necessary to further improve EOL care for this population.