Families' Experiences of Surrogate Decision-Making and Challenges of Shared Decision-Making: A Cross-Sectional Study

Family members who make surrogate decisions tend to be emotionally burdened and may have difficulty making decisions that fit the patient's wishes. It is unclear what support family members making surrogate decisions expect from health professionals. This study aims to clarify the information needed for surrogate decision-making and the support needs of healthcare professionals.

This cross-sectional study used questionnaires. Family members with experience in making surrogate decisions for treatments that affected the patient's life and prognosis were included. Participants were recruited using an online panel through a private research company in Japan. For the survey items, 60 participants were asked to specify one case in which they made a surrogate decision and describe the resources they used to support their decision-making. In addition, participants were assessed on a 10-point scale to determine their sense of satisfaction with the decision, whether the decision was per the patient's wishes, and their level of emotional burden. Knowledge and understanding of life-sustaining treatments were also investigated.

Family members tended to make decisions that were more aligned with the patient's desires than with theirs (P = 0.005). In addition, decisions that prioritized the patient's desires tended to result in higher levels of satisfaction after the decision was made (r = 0.349, P < 0.01). Family members who understood the treatment being given to the patient tended to experience lower psychological stress after the decision was made (r = -0.394, P < 0.01). The information that families considered important for making decisions on the patient's behalf included whether the patient would regain consciousness (70%) and the patient's age (66.7%).

The findings suggest that medical professionals should encourage family members to make decisions in keeping with the patient's wishes and provide the patient's information, including risk information, to help them understand the treatment. In addition, considering the mental stress and burden on family members, it is necessary to consider the process of discussion among family members while providing mental support to facilitate the decision-making process.