Decision Making for Patients With Severe Dementia Versus Normal Cognition Near the End of Life

Abstract

Background and Objectives The clinical progression of severe dementia frequently leads to situations where surrogate decision-makers must quickly make choices about potentially burdensome treatments that offer limited clinical benefit. We examined whether the number of decision-makers and their access to advance directives were related to treatment choice for patients with severe dementia in comparison to those with normal cognition. Research Design and Methods We retrospectively linked survey responses about end-of-life treatment decisions to Medicare claims for Health and Retirement Study respondents dying between 2002 – 2015 whose next-of-kin reported a need for surrogate decision-making. We estimated multivariable logistic regression models to study measures of aggressive care in the last 6 months of life; in-hospital death, burdensome transfers, and burdensome treatments. Results Compared to patients who were cognitively normal near the end-of-life (n=1,198), patients with severe dementia (n=722) were less likely to experience burdensome treatments (18% [95% CI 14 - 21] vs 32% [95% CI 29 - 35]), burdensome transfers (20% [95% CI 17-24] vs 30% [95% CI 27-33]), and in-hospital death (24% [95% CI 20-28] vs. 30% [95% CI 26-33]) when surrogates were involved. Rates of burdensome treatments, transfers, or in-hospital death for decedents with severe dementia did not vary with single versus multiple decision-makers or when decision-makers were informed by advance directives. However, among decedents with normal cognition, a single decision-maker informed by an advance directive was associated with the lowest rates of burdensome treatments and in-hospital death. Discussion and Implications Surrogate decision-makers made similar choices around end-of-life care for patients with severe dementia regardless of the number of decision-makers and availability of advance directives. However, both advance directives and single decision-makers were associated with less aggressive care for cognitively normal decedents.

How do surrogates make treatment decisions for patients with dementia: An experimental survey study

“…We found that patients with dementia received less aggressive EOL care than those without dementia, and advance directives were associated with less aggressive care in some circumstances. There were no consistent differences in outcomes depending on how many family members were involved with decision‐making and outcomes were similar when spouses, children, and mixed teams were responsible for EOL decisions (Baum et al., 2021; Nicholas et al., 2023).…”

How Do Surrogates Make Treatment Decisions for Patients with Dementia? An Experimental Survey Study

“…We found that patients with dementia received less aggressive EOL care than those without dementia, and advance directives were associated with less aggressive care in some circumstances. There were no consistent differences in outcomes depending on how many family members were involved with decisionmaking and outcomes were similar when spouses, children, and mixed teams were responsible for EOL decisions (Baum et al, 2021;Nicholas et al, 2023).…”