Abstract
Purpose：This study aimed to clarify the experience of families involved in surrogate decision making regarding treatment on behalf of patients with acute stroke whose reduced level of consciousness makes confirming their wishes difficult. The study also aimed to obtain basic data for developing interventions that can prevent anxiety and depressive symptoms associated with surrogate decision making.
Methods：Semi-structured interviews were conducted with informed consent obtained from 7 family members of patients with stroke. Following qualitative and inductive analyses of the results, a structured crisis intervention was conducted based on crisis theory proposed by Aguilera and Messick.
Results：The following 7 categories were derived: “I was unsure of what was happening, but I prioritized life-saving measures and left decisions to the doctor,” “I made decisions that prioritized the suggestions of medical staff, while having concerns about the treatment methods,” “I realized I would have a new way of life and financial problems caused by the illness,” “I was conflicted as to whether the proxy decisions were in line with the patient’s wishes based on the prognosis of the illness,” “I anticipated having interpersonal relationships and interactions with medical professionals who could give me peace of mind,” “Support from people around me gave me peace of mind,” and “I attempted to reduce my anxiety in the midst of a chaotic situation.” These categories were divided into four groups: “highly stressful encounters,” “perception of events,” “social support,” and “restraint coping”.
Conclusion：The family members of patients with acute stroke made decisions that prioritized suggestions from medical professionals, while also expressing concern about the treatment method. They were concerned about their new way of life and financial issues associated with the patient having a stroke and surrogate decision making. They were also conflicted about making surrogate decisions that were in line with the patient’s wishes. They anticipated having interpersonal relationships and interactions with medical professionals who could give them peace of mind. In addition, the family members tried to adopt measures to reduce their anxiety despite their chaotic situation, while achieving peace of mind through support from others, such as relatives and friends. This experience was a determining factor in whether the family perceived events positively.
