Systematic review: Individuals' goals for surrogate decision-making

Area of Science:

• Medical Ethics
• Health Law
• Patient Autonomy

Background:

• Many individuals become decisionally incapacitated without designating a healthcare surrogate.
• Understanding patient preferences for surrogate decision-making is critical for ethical medical practice.

Purpose of the Study:

• To evaluate how well current healthcare practices align with the decision-making goals of incapacitated individuals who did not appoint a surrogate.
• To identify the primary goals of patients regarding treatment decisions during periods of incapacity.

Main Methods:

• A systematic literature search was conducted across major databases (PubMed, Scopus, Embase, CINAHL, PsycINFO).
• Included studies provided quantitative or qualitative empirical data on adult preferences for treatment decision-making during incapacity.
• Data were synthesized from 14 qualitative and 26 quantitative articles, representing over 22,000 participants, primarily elderly or seriously ill.

Main Results:

• The majority of individuals prefer close family members to serve as surrogates, believing they best understand their treatment wishes.
• Patients also aim to minimize the emotional and practical burden on their families.
• There is considerable variation in how much autonomy individuals wish to grant their surrogates in making treatment choices.

Conclusions:

• Individuals prioritize family involvement, treatment consistency with personal preferences, and reduced family burden during decisional incapacity.
• Current practices often fall short, as surrogate decision-makers may struggle to ascertain patient wishes and experience significant distress.
• Clinicians should encourage patients to document treatment preferences and decision-making instructions to better align care with patient goals.