Refusal of Representation in Advance Care Planning: A Case-Inspired Ethical Analysis

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...

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Κύριοι συγγραφείς: Peters, Andrew T. (Συγγραφέας) ; Hauser, Joshua M. (Συγγραφέας)
Τύπος μέσου: Ηλεκτρονική πηγή Άρθρο
Γλώσσα:Αγγλικά
Έλεγχος διαθεσιμότητας: HBZ Gateway
Journals Online & Print:
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Έκδοση: Wiley 2023
Στο/Στη: The Hastings Center report
Έτος: 2023, Τόμος: 53, Τεύχος: 2, Σελίδες: 3-8
Άλλες λέξεις-κλειδιά:B Advance Care Planning
B Veterans
B unrepresented patients
B surrogate decision-makers
B shared decision-making
B clinical ethics
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Περιγραφή
Σύνοψη: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.
ISSN:1552-146X
Περιλαμβάνει:Enthalten in: Hastings Center, The Hastings Center report
Persistent identifiers:DOI: 10.1002/hast.1468