Surrogate Decision Makers Need Better Preparation for Their Role: Advice from Experienced Surrogates

Abstract

Background:

Surrogate decision makers are required to make difficult end-of-life decisions with little preparation. Little is known about what surrogates may need to adequately prepare for their role, and few resources exist to prepare them.

Objective:

To explore experiences and advice from surrogates about how best to prepare for the surrogate role.

Design:

Semistructured focus groups.

Setting/Participants:

Sixty-nine participants were recruited through convenience sampling in San Francisco area hospitals, cancer support groups, and community centers for 13 focus groups. Surrogates were included if they were 18 years of age or older and reported having made medical decisions for others.

Measurements:

Qualitative thematic content analysis.

Results:

Forty participants reported making surrogate decisions for others: 6 were Spanish speaking, 22 were women, 16 were Black American, 11 Asian/Pacific Islander, 6 Latinx, and 7 White; 9 had limited health literacy. The majority (29, 73%) emphasized the importance of advance care planning (ACP) and expressed the desire for additional guidance. Five themes and advice were identified: (1) lack of, but needing, surrogates' own preparation and guidance (2) initiate ACP conversations, (3) learn patient's values and preferences, (4) communicate with clinicians and advocate for patients, and (5) make informed surrogate decisions.

Conclusion:

Experienced surrogate decision makers emphasized the importance of ACP and advised that surrogates need their own preparation to initiate ACP conversations, learn patients' values, advocate for patients, and make informed surrogate decisions. Future interventions should address these preparation topics to ease surrogate burden and decrease disparities in surrogate decision making.