Does it Matter Who Decides? Outcomes of Surrogate Decision-Making for Community-Dwelling, Cognitively Impaired Older Adults Near the End of Life

J Pain Symptom Manage. 2021 Dec;62(6):1126-1134. doi: 10.1016/j.jpainsymman.2021.06.009. Epub 2021 Jun 19.

Abstract

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.

Keywords: Surrogate decision-making; end-of-life decisions; family.

Publication types

  • Observational Study
  • Research Support, N.I.H., Extramural

MeSH terms

  • Aged
  • Child
  • Death
  • Decision Making
  • Hospital Mortality
  • Humans
  • Independent Living*
  • Terminal Care* / psychology