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Does it matter who decides? Outcomes of surrogate decision-making for community-dwelling, cognitively impaired older adults near the end of life

Journal of Pain and Symptom Management December 1, 2021

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PAIR Center Research Team


CONTEXT: Cognitively impaired older adults frequently need surrogate decision-making near the end-of-life. It is unknown whether differences in the surrogate’s relationship to the decedent are associated with different end-of-life treatment choices.

OBJECTIVES: To describe differences in end-of-life care for community dwelling, cognitively impaired older adults when children and spouses are involved in decision-making.

METHODS: Retrospective observational study.

RESULTS: Among 742 community-dwelling adults with cognitive impairment (mild cognitive impairment or dementia) prior to death, children participated in end-of-life decisions for 615 patients (83%) and spouses participated in decisions for 258 patients (35%), with both children and spouses participating for 131 patients (18%). When controlling for demographic characteristics, decedents with only a spouse decision-maker were less likely to undergo a life-sustaining treatment than decedents with only children decision-makers (P < 0.05). There was no difference in the probability of in-hospital death or burdensome transfers across facilities across decedent-decision-maker relationships. Differences in rates of life-sustaining treatment were greater when we restricted to decedents with dementia.

CONCLUSION: Decedents with cognitive impairment or dementia were less likely to receive life-sustaining treatments when spouses versus children were involved with end-of-life treatment decisions but were no less likely to experience other measures of potentially burdensome end-of-life care.


National Institute of Aging


Micah Y Baum, Joseph J Gallo, Marie T Nolan, Kenneth M Langa, Scott D Halpern, Mario Macis, Lauren Hersch Nicholas