Beyond substituted judgment: How surrogates navigate end-of-life decision-making

Abstract

Objectives: To characterize how surrogates plan to make medical decisions for others.

Design: Descriptive study using semistructured qualitative interviews.

Setting: Surrogates were interviewed by telephone from their homes.

Participants: Fifty experienced surrogate decision-makers identified to make decisions for older, chronically ill veterans.

Measurements: Surrogates were asked to describe advance care planning conversations with loved ones and how they planned to make future medical decisions. Thematic content analysis was used to identify bases for decision-making.

Results: Surrogates described the motivators and the content of advance care planning conversations with loved ones. Surrogates described five bases for decision-making: (1) conversations (making decisions based on their knowledge of their loved ones' preferences), (2) relying on documents (referring to their loved ones' advance care directives), (3) shared experience (believing an "inner sense" would guide decisions because of shared lived experience with loved ones), (4) surrogates' own values and preferences about life, and (5) surrogates' network (enlisting the help of others).

Conclusion: Although ethicists and clinicians expect surrogates to use substituted judgment or patients' best interests when making decisions, these data indicate that many surrogates rely on other factors such as their own best interests or mutual interests of themselves and the patient or intend to base substituted judgments on documents with which they have little familiarity.