Abstract
Background
Family members who make surrogate decisions tend to be emotionally burdened and may have difficulty making decisions that fit the patient’s wishes. The specific kinds of support a family needs to receive from medical practitioners to make surrogate decisions are unclear. This study aimed to identify the information and support needs of families with experience in surrogate decision-making.
Methods
This cross-sectional study used questionnaires. Family members with experience 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, 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 in accordance with the patient’s wishes, and their level of emotional burden. Knowledge and understanding of life-sustaining treatments were also investigated.
Results
Sixty participants were included. Family members were significantly more likely to perceive that they made surrogate decisions in line with the patient’s wishes than with the family’s wishes (P = 0.04). In addition, the resources used when making surrogate decisions were often discussed among family members (n = 49, 81.7%).
There was also a strong need for easy-to-understand information regarding the multiple options for patient prognosis and treatment. However, regarding knowledge of life-sustaining treatments, understanding of assisted circulation devices was low (n = 26, 43.3%). Important values when making surrogate decisions include whether the patient has recovered consciousness, their age, and survival rate.
Conclusion
Family members tended to make surrogate decisions in line with patients’ wishes. Healthcare professionals must accurately communicate information, including multiple treatment options and prognoses so that family members can determine the best treatment for patients from various perspectives. There is also a need to take an interest in the process of family discussion and provide emotional support along with decision-making, considering the emotional stress on families.