School of Medicine, Tongji University, Shanghai, People's Republic of China.
Delivery Room, Shanghai Tenth People's Hospital, School of Medicine, Tongji University, Shanghai, People's Republic of China.
Neuropsychol Rehabil. 2023 Oct;33(9):1582-1597. doi: 10.1080/09602011.2022.2116058. Epub 2022 Aug 30.
To explore and describe the experience of decision-making for patients with disorders of consciousness (DOC) from the perspectives of family surrogate decision-makers. A total of 21 face-to-face interviews with family surrogate decision-makers from a tertiary hospital in Shanghai, China were conducted from January 2021 to February 2021. Thematic analysis was used for data analysis. Four main themes were identified and were included in this study: (1) a tough choice between life and dignity, (2) a major responsibility for patient's voice, (3) complex considerations between ethics and morals, and (4) the importance of realistic basis. The surrogate decision-making of DOC patients in China has been affected by the Chinese cultural context and several practical roots. And the family surrogate decision-makers shared their experiences of trade-offs during the decision-making process. Moreover, family surrogate decision-makers realized their serious responsibility to make a decision that would be in the best interest of DOC patients.
从家庭代理人决策者的角度探索和描述意识障碍(DOC)患者的决策体验。2021 年 1 月至 2 月,在中国上海的一家三级医院对 21 名家庭代理人决策者进行了 21 次面对面访谈。使用主题分析进行数据分析。确定了四个主要主题,并包含在本研究中:(1)生命与尊严之间的艰难选择,(2)患者声音的主要责任,(3)伦理道德之间的复杂考虑,以及(4)现实基础的重要性。中国 DOC 患者的代理决策受到中国文化背景和几个实际根源的影响。家庭代理人决策者分享了他们在决策过程中权衡取舍的经验。此外,家庭代理人决策者意识到他们有责任做出符合 DOC 患者最佳利益的决策。