Cheng Meijing, Fu Longwen, Qiu Xiang, Huang Xinyu, Luo Lan, Yu Cong, Gong Ni
Health and Social Care Research Center, School of Nursing, Jinan University, Guangzhou, China.
Clinical Medicine and Humanities Research Center, The Seventh Affiliated Hospital, Sun Yat-sen University, Shenzhen, China.
Patient Educ Couns. 2025 Sep;138:109219. doi: 10.1016/j.pec.2025.109219. Epub 2025 Jun 10.
To analyze challenges and complexities associated with Living Wills (LWs) under current medical regulations from the perspectives of diverse stakeholders, and to inform evidence-based strategies for improving LWs implementation in Asian and global contexts.
This phenomenological study conducted semi-structured interviews with stakeholders involved in the LWs making process in Shenzhen, China (July 2023-July 2024). A hybrid snowball-purposive sampling strategy was adopted. The data were analyzed using Rapid Qualitative Analysis and Colaizzi's phenomenological method.
Our study revealed key tensions in the process of making LWs among 36 stakeholders, including (potential) LWs makers, their family members, healthcare providers, legal professionals, social workers, and volunteers. Three themes emerged from the analysis, each comprising two subthemes: (1) Where to make Living Wills (Outside hospitals; Inside hospitals); (2) When to make Living Wills (Too early; Too late); (3) Who is involved in making end-of-life treatment decisions (Role of family members; Role of medical staff).
Significant discrepancies exist between legislative aims to uphold patients' autonomy and the implementation of LWs. Limited public awareness of LWs underscores the need for death educational initiatives. Given the observed dominance of familial and clinical stakeholders in the treatment decision-making process, developing standardized multidisciplinary communication models such as Advance Care Planning (ACP) is essential to facilitate LWs adoption.
Stakeholders should prioritize collaborative efforts to: (1) enhance public understanding of LWs and ACP; (2) protect patients' informed consent and autonomy; (3) improve LWs regulations and promote ACP models that align with Asian cultural contexts.
从不同利益相关者的角度分析现行医疗法规下生前预嘱（LWs）相关的挑战和复杂性，并为在亚洲及全球范围内改善生前预嘱的实施提供循证策略。
本现象学研究于2023年7月至2024年7月在中国深圳对参与生前预嘱制定过程的利益相关者进行了半结构化访谈。采用了混合滚雪球-目的抽样策略。数据采用快速定性分析和科莱齐现象学方法进行分析。
我们的研究揭示了36名利益相关者（包括生前预嘱的（潜在）制定者、其家庭成员、医疗服务提供者、法律专业人员、社会工作者和志愿者）在生前预嘱制定过程中的关键矛盾。分析得出三个主题，每个主题包含两个子主题：（1）在哪里制定生前预嘱（医院外；医院内）；（2）何时制定生前预嘱（太早；太晚）；（3）谁参与临终治疗决策（家庭成员的角色；医务人员的角色）。
维护患者自主权的立法目标与生前预嘱的实施之间存在显著差异。公众对生前预嘱的认知有限凸显了开展死亡教育倡议的必要性。鉴于在治疗决策过程中观察到家庭和临床利益相关者占主导地位，开发标准化的多学科沟通模式，如预先护理计划（ACP），对于促进生前预嘱的采用至关重要。
利益相关者应优先共同努力：（1）提高公众对生前预嘱和预先护理计划的理解；（2）保护患者的知情同意权和自主权；（3）完善生前预嘱法规，推广符合亚洲文化背景的预先护理计划模式。
