Beyond Autonomy: Diversifying End-of-Life Decision-Making Approaches to Serve Patients and Families

Authors

  • Gary S. Winzelberg MD, MPH,

    1. From the *Division of Geriatric Medicine, School of Medicine, University of North Carolina at Chapel Hill, Chapel Hill, North CarolinaProgram on the Medical Encounter and Palliative Care, Duke University and Veterans Affairs Medical Center, Durham, North Carolina.
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  • Laura C. Hanson MD, MPH,

    1. From the *Division of Geriatric Medicine, School of Medicine, University of North Carolina at Chapel Hill, Chapel Hill, North CarolinaProgram on the Medical Encounter and Palliative Care, Duke University and Veterans Affairs Medical Center, Durham, North Carolina.
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  • James A. Tulsky MD

    1. From the *Division of Geriatric Medicine, School of Medicine, University of North Carolina at Chapel Hill, Chapel Hill, North CarolinaProgram on the Medical Encounter and Palliative Care, Duke University and Veterans Affairs Medical Center, Durham, North Carolina.
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  • Dr. Winzelberg is supported by a Brookdale National Fellowship and Carol Woods Retirement Community, Chapel Hill, North Carolina.

Address correspondence to Gary S. Winzelberg, MD, MPH, University of North Carolina at Chapel Hill, School of Medicine, Division of Geriatric Medicine, 141 MacNider Bldg, CB #7550, Chapel Hill, NC 27599. E-mail: garywinz@med.unc.edu

Abstract

Efforts to improve end-of-life decision-making quality have emphasized the principle of individual autonomy to better ensure that patients receive care consistent with their preferences. This principle has primarily been defined through court decisions during the past 3 decades as a patient's right to refuse medical technologies and avoid life-prolonging treatments. However, autonomy as traditionally defined only serves a small segment of dying patients. Patients might not value autonomy or consider autonomy important but define it differently than decision-making self-determination. Some patients also think in terms of their care goals rather than individual treatment preferences. Patients' functional and cognitive abilities, age, racial and ethnic backgrounds, and desire to avoid burdening loved ones may influence attitudes and definitions regarding autonomy. To improve end-of-life decision-making for an increasingly multicultural and aging population, the following priorities should be set: (1) Increase the flexibility of advance care planning and decision-making strategies used with capable patients to encompass diverse perceptions of autonomy; and (2) Improve communication between physicians and patients' families when patients lack decision-making capacity to facilitate decision-making and address families' emotional burdens. The goal of these priorities is to promote understanding of patients' and families' decision-making preferences and goals and to minimize decision-making burdens on families.

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