Issues Surrounding Surrogate Decision-Makers : From Discussions in the Working Group for the “Recommendations on Surrogate Decision-Makers in Medical Care and Support”

Abstract

  This study aimed to clarify ethical issues surrounding surrogate decision-making in Japanese medical institutions, based on discussions within a working group of the Japanese Association for Clinical Ethics. The working group developed four clinical vignettes (elderly person living alone, patient with a non-legal partner, emergency surgery, and semi-emergency surgery for a person with dementia) and conducted three online group discussions with 20 members from multiple professions. Meetings were audio-recorded, transcribed verbatim, and qualitatively analyzed by coding single-meaning units. We found substantial variation across institutions in the conditions and expected roles of hospital guarantors, who may be treated as financial guarantors, key persons, or de facto proxies. There was also wide variation in who is allowed to attend treatment decision-making meetings and how signatures on consent forms are interpreted, especially when patients lack decision-making capacity in emergency or semi-emergency situations. Participants emphasized that proxies should be chosen primarily for their understanding of the patient’s values and life, yet conflicts among family members and candidates frequently created ethical dilemmas. These findings highlight the need to clarify terminology and roles related to surrogate decision-makers and to develop flexible, transparent processes tailored to urgency and treatment goals.