Yu Ting, Li Yijing, Hu Ziyi, Liu Shanshan, Wang Cong, Chen Qian, Jiang Yan
Evidence-Based Nursing Research Laboratory, West China Hospital, Sichuan University/West China School of Nursing, Sichuan University, Chengdu, China.
Department of Nursing, West China Hospital, Sichuan University/West China School of Nursing, Sichuan University, Chengdu, China.
Int J Nurs Stud. 2025 Feb;162:104987. doi: 10.1016/j.ijnurstu.2024.104987. Epub 2024 Dec 16.
Surrogate decision-makers play a key role in determining whether end-of-life patients receive hospice care. There is a need to better understand families' experiences of surrogate decision-making in hospice care for end-of-life patients to provide a basis for developing targeted interventions, such as decision support tools or counseling, to help family members navigate the decision-making process.
The aim was to analyze and synthesize global qualitative data on family members' experiences of surrogate decision-making regarding whether to receive hospice care for end-of-life patients.
This was a systematic review of qualitative studies.
The PubMed, Web of Science, Cochrane Library, Embase, Cumulated Index to Nursing and Allied Health Literature, Chinese Biomedical Literature Service System, China National Knowledge Infrastructure, WanFang and China Science and Technology Journal databases were searched from inception to September 2024. Studies related to family members making surrogate decisions about whether to receive hospice care for end-of-life patients were included.
This review was guided by the Joanna Briggs Institute Manual for Systematic reviews of qualitative evidence. Two reviewers independently screened the studies and extracted the data. The eligible studies were assessed via the Joanna Briggs Institute critical appraisal instrument for qualitative research. Thematic synthesis was guided by the method developed by Thomas and Harden.
A total of nine studies were included. The synthesis of qualitative data resulted in three themes: (1) Decision motivation between rationality and emotion. The reasons surrogate decision-makers considered hospice care for patients involved multiple aspects and were a result of both objective and subjective factors. (2) Decision preparation stemmed from knowledge and experience. A knowledge-based foundation and experiential grounding were needed to ensure that surrogate decision-makers make informed decision. (3) Decision reflection through looking back and forward. Surrogate decision-makers expressed satisfaction with the decision to choose hospice care for patients, coupled with serious consideration of personal future end-of-life decisions.
Determining whether patients receive hospice care at end of life is complex for family members. This process begins with the coexistence of rational and emotional motives for decision-making, involves preparation for decision-making through the acquisition of knowledge and experience about hospice care, and culminates in reflection on the entire decision-making process. These findings underscore the importance of providing sufficient informational and emotional support to family decision-makers, which can improve decision-making and promote more compassionate end-of-life care. Future research should focus on developing effective strategies to strengthen these support systems.
A protocol was registered on the PROSPERO (CRD42024526197).
替代决策者在决定临终患者是否接受临终关怀方面起着关键作用。有必要更好地了解家庭成员在临终患者临终关怀替代决策方面的经历，以便为开发有针对性的干预措施（如决策支持工具或咨询服务）提供依据，帮助家庭成员应对决策过程。
旨在分析和综合关于家庭成员在决定临终患者是否接受临终关怀方面替代决策经历的全球定性数据。
这是一项对定性研究的系统评价。
检索了PubMed、科学引文索引、考克兰图书馆、Embase、护理学与健康相关文献累积索引、中国生物医学文献服务系统、中国知网、万方和中国科技期刊数据库，检索时间从建库至2024年9月。纳入了与家庭成员就是否为临终患者接受临终关怀做出替代决策相关的研究。
本综述以乔安娜·布里格斯循证卫生保健中心定性证据系统评价手册为指导。两名评审员独立筛选研究并提取数据。通过乔安娜·布里格斯循证卫生保健中心定性研究批判性评价工具对符合条件的研究进行评估。主题综合以托马斯和哈登开发的方法为指导。
共纳入9项研究。定性数据综合产生了三个主题：（1）理性与情感之间的决策动机。替代决策者考虑为患者提供临终关怀的原因涉及多个方面，是客观和主观因素共同作用的结果。（2）源于知识和经验的决策准备。需要有基于知识的基础和经验基础，以确保替代决策者做出明智的决策。（3）通过回顾与展望进行决策反思。替代决策者对为患者选择临终关怀的决定表示满意，同时认真考虑个人未来的临终决策。
对于家庭成员来说，决定患者在生命末期是否接受临终关怀是复杂的。这个过程始于决策动机中理性与情感的并存，涉及通过获取有关临终关怀的知识和经验来为决策做准备，并最终对整个决策过程进行反思。这些发现强调了为家庭决策者提供充分信息和情感支持的重要性，这可以改善决策并促进更具同情心的临终关怀。未来的研究应侧重于制定有效的策略来加强这些支持系统。
一项方案已在国际前瞻性系统评价注册库（CRD42024526197）上注册。
