Beyond Substituted Judgment: How Surrogates Navigate End-of-Life Decision-Making

Authors

  • Elizabeth K. Vig MD, MPH,

    1. From the *Division of Gerontology and Geriatric Medicine and Departments of Anthropology, §Medical History and Ethics, and Health Services, University of Washington, Seattle, WashingtonGeriatrics and Extended Care, Veterans Affairs Puget Sound Health Care System, Seattle, Washington
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  • Janelle S. Taylor PhD,

    1. From the *Division of Gerontology and Geriatric Medicine and Departments of Anthropology, §Medical History and Ethics, and Health Services, University of Washington, Seattle, WashingtonGeriatrics and Extended Care, Veterans Affairs Puget Sound Health Care System, Seattle, Washington
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  • Helene Starks PhD, MPH,

    1. From the *Division of Gerontology and Geriatric Medicine and Departments of Anthropology, §Medical History and Ethics, and Health Services, University of Washington, Seattle, WashingtonGeriatrics and Extended Care, Veterans Affairs Puget Sound Health Care System, Seattle, Washington
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  • Elizabeth K. Hopley BA,

    1. From the *Division of Gerontology and Geriatric Medicine and Departments of Anthropology, §Medical History and Ethics, and Health Services, University of Washington, Seattle, WashingtonGeriatrics and Extended Care, Veterans Affairs Puget Sound Health Care System, Seattle, Washington
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  • Kelly Fryer-Edwards PhD

    1. From the *Division of Gerontology and Geriatric Medicine and Departments of Anthropology, §Medical History and Ethics, and Health Services, University of Washington, Seattle, WashingtonGeriatrics and Extended Care, Veterans Affairs Puget Sound Health Care System, Seattle, Washington
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  • This material was presented in part at the annual meeting of the American Geriatrics Society, May 2003, Baltimore, Maryland, and the American Society for Bioethics and Humanities, October 2004, Philadelphia, Pennsylvania.

Address correspondence to Elizabeth Vig, MD, MPH, VA Puget Sound Health Care System, 1660 South Columbian Way (S-182-Ethics), Seattle, WA 98108. E-mail: vigster@u.washington.edu

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.

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