Refusal of Representation in Advance Care Planning

Unrepresented patients—people without capacity to make medical decisions who also lack a surrogate decision‐maker—form a large and vulnerable population within the United States health care system. The burden of unrepresentedness has rightly prompted widespread calls for more and better advance care planning, in which still‐healthy patients are encouraged to designate a surrogate decision‐maker and thus avoid the risk of becoming unrepresented. However, we observe that some patients, even with available social contacts and access to adequate advance care planning services, simply decline to name a surrogate decision‐maker. We propose a novel concept of “informed refusal of representation” (“IRR”) to characterize the position held by some such patients, who are often overlooked in prior work on unrepresentedness. We then discuss physicians’ ethical obligations in the face of such a refusal and avenues by which physicians can support patients without surrogates in receiving goal‐concordant care

Advance care planning · Decision maker · Economics · Environmental health · Face (sociological concept) · Health care · Management science · Palliative care · Political science · Population · Public relations · Sociology · Work (physics) · Ethics in medical practice · Law · Medicine · Nursing · Palliative Care and End-of-Life Issues · Patient Dignity and Privacy · Psychology

• The Physician as a Health Care Proxy

  Arti Rai, Mark Siegler et al.•The Hastings Center Report•1999

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• Who Are “Unrepresented” Patients and What Count as “Important” Medical Decisions for Them

  Open Access•David T Ozar•The AMA Journal of Ethic•2019

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• Feasibility of Advance Care Planning in Primary Care for Homeless Adults

  Open Access•Laura Kaplan-Weisman, Sara Sansone et al.•Journal of Aging and Health•2019

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