Preparing Surrogates for Decision-Making: Development and Pilot Testing of Prepare for Their Care

Lingsheng Li; Brookelle H Li; Clarissa Ferguson; Jana Powell; Aiesha M Volow; Jasmine Santoyo-Olsson; Heather A Harris; Anne Kinderman; Patricia Levenberg; Judy Long; Alexander Smith; Alexia M Torke; Deborah E Barnes; Rebecca L Sudore

doi:10.1016/j.jpainsymman.2024.12.026

Preparing Surrogates for Decision-Making: Development and Pilot Testing of Prepare for Their Care

J Pain Symptom Manage. 2025 Jan 7:S0885-3924(25)00002-8. doi: 10.1016/j.jpainsymman.2024.12.026. Online ahead of print.

Affiliations

¹ Division of Geriatrics (L.L., B.H.L., C.F., J.P., J.S.O., P.L., A.S., D.E.B., R.L.S.), Department of Medicine, University of California, San Francisco, California, USA. Electronic address: Lingsheng.li@ucsf.edu.
² Division of Geriatrics (L.L., B.H.L., C.F., J.P., J.S.O., P.L., A.S., D.E.B., R.L.S.), Department of Medicine, University of California, San Francisco, California, USA.
³ Division of Palliative Care (H.A.H.), Department of Medicine, Alameda Health System, Alameda, California, USA.
⁴ Division of Palliative Medicine (A.K., J.L.), Department of Medicine, University of California, San Francisco, California, USA.
⁵ Division of Geriatrics (L.L., B.H.L., C.F., J.P., J.S.O., P.L., A.S., D.E.B., R.L.S.), Department of Medicine, University of California, San Francisco, California, USA; San Francisco Veterans Affairs Health Care System (A.S., R.L.S.), San Francisco, California, USA.
⁶ Division of General Internal Medicine and Geriatrics (A.M.T.), Indiana University School of Medicine, Indianapolis, Indiana, USA.
⁷ Division of Geriatrics (L.L., B.H.L., C.F., J.P., J.S.O., P.L., A.S., D.E.B., R.L.S.), Department of Medicine, University of California, San Francisco, California, USA; Department of Psychiatry and Behavioral Sciences (D.E.B.), University of California, San Francisco, California, USA; Department of Epidemiology & Biostatistics (D.E.B.), University of California, San Francisco, California, USA.

PMID: 39788302
DOI: 10.1016/j.jpainsymman.2024.12.026

Abstract

Context: Surrogate decision-makers have expressed the need for better preparation around communication and medical decision-making.

Objectives: This mixed-methods feasibility study aimed to assess the feasibility and usability of an online program to prepare surrogates for their role.

Methods: We developed a 2-part program for surrogates called PREPARE For THEIR Care with a diverse group of Community Advisory Board members and caregivers recruited from the National Patient Advocacy Foundation. We conducted pilot testing of the program with caregivers. Using validated surveys, we assessed the feasibility and usability of the program and measured pre-to-post Advance Care Planning (ACP) Engagement among caregiver participants.

Results: Of the 26 pilot participants, mean age was 52 ± 12.7 years; 27% were men, 4% were nonbinary, 27% identified as Asian, 27% Black, 11% Multi-Racial, and 35% White. Participants found the program to be informative, comprehensive, and easy to use. Ease-of-use was rated 9.6 ± 0.92 on a 10-point scale; and, on 5-point scales, comfort using the program was rated 4.8 ± 0.51, helpfulness 4.6 ± 0.65, and likelihood to recommend to others 4.7 ± 0.53. There was improvement comparing pre- and postsurveys in readiness to engage in ACP for others (4.23 ± 0.67) to 4.47 ± 0.73), P = 0.04) and for self (3.55 ± 1.36) to (3.89 ± 1.06), P = 0.02).

Conclusion: In this pilot study, the prepare for their care program resulted in high user satisfaction and improved pre-to-post surrogate readiness to engage in ACP. Larger trials are needed to evaluate the impact of the program on surrogate readiness and confidence.

Keywords: Surrogate decision maker; advance care planning; care planning continuum; surrogate preparation.