Abstract:

Objective To explore the dilemmas faced by surrogate decision-makers of severe stroke patients in treatment decision-making，and to provide a basis for developing decision support strategies. Methods From April to December 2023，through phenomenological qualitative research with 16 surrogate decision-makers with severe stroke patients from ICU of the department of neurology in a tertiary hospital in Jing’an District, Shanghai. semi-structured in-depth interviews were used to examine the perceptions of decision-making on surrogate. Data were analyzed via Braun’s style of thematic analysis. Results 4 themes and 10 sub-themes were identified. Theme 1：negative emotional dilemmas（urgent decision-making leads to anxiety，fear，and unknown stroke trajectory increases the sense of uncertainty）. Theme 2：supportive environment dilemmas（lack of information support delays decision-making； lack of family support increases decision-making stress； insufficient economic support increases the burden of decision-making）. Theme 3：the dilemma of weighing the pros and cons（difficult trade-offs between risk and reward，tough decisions between reality and ethics，conflicting choices of life and dignity）. Theme 4：preference management dilemmas（practical difficulties in adhering to patient preferences，impediments to decision-making due to unknown patient preferences）. Conclusion Surrogate decision-makers of severe stroke patients face multiple decision-making dilemmas. Healthcare professionals should provide emotional support in multiple ways and comprehensive support to reduce the decision-making dilemmas experienced by surrogate decision-makers，as well as implement death education for surrogate decision-makers and promote advance care planning to reduce their decision-making stress.

Key words: Severe Stroke Patients, Family, Surrogate Decision-Making, Dilemmas in Decision-Making, Nursing Care, Qualitative Research

摘要：

目的 探究重症脑卒中患者家属在代理决策中面临的困境，为制订决策支持策略提供参考依据。方法 2023年4月—12月采用现象学研究方法，对上海市静安区某三级甲等医院神经内科重症监护室的16例重症脑卒中患者家属代理决策者进行半结构化深度访谈，运用Braun主题分析法进行资料分析。结果 提炼出4个主题和10个亚主题。①负性情绪困境：紧迫决策致使焦虑、恐惧；卒中轨迹未知导致的不确定感。②支持环境困境：信息支持匮乏致使决策延迟、家庭支持缺失加重决策压力、经济支持不足增添决策负担。③利弊权衡困境：风险-收益的困难权衡、现实-伦理的艰难抉择、生命-尊严的矛盾冲突。④偏好处理困境：依从患者偏好存在客观困难、未知患者偏好造成决策阻碍。结论 重症脑卒中患者家属在为患者进行临床决策时面临多重决策困境。医护人员应提供多途径情感指导及全方位辅助支持，以减轻脑卒中家属代理决策困境，同时需对家属代理决策者加强生死教育，并推广预立医疗照护计划，以减轻其决策压力。

关键词: 重症脑卒中, 家属, 代理决策, 决策困境, 护理, 质性研究