Centre for Biomedical Ethics and Law, Faculty of Medicine, KU Leuven, Kapucijnenvoer 35, block D, box 7001, 3000, Leuven, Belgium.
Centre for Molecular and Vascular Biology, Faculty of Medicine, KU Leuven/UZ Leuven, Herestraat 49, 3000, Leuven, Belgium.
BMC Palliat Care. 2022 Jun 24;21(1):113. doi: 10.1186/s12904-022-01003-5.
With paediatric patients, deciding whether to withhold/withdraw life-sustaining treatments (LST) at the end of life is difficult and ethically sensitive. Little is understood about how and why physicians decide on withholding/withdrawing LST at the end of life in paediatric patients. In this study, we aimed to synthesise results from the literature on physicians' perceptions about decision-making when dealing with withholding/withdrawing life-sustaining treatments in paediatric patients.
We conducted a systematic review of empirical qualitative studies. Five electronic databases (Pubmed, Cinahl®, Embase®, Scopus®, Web of Science™) were exhaustively searched in order to identify articles published in English from inception through March 17, 2021. Analysis and synthesis were guided by the Qualitative Analysis Guide of Leuven.
Thirty publications met our criteria and were included for analysis. Overall, we found that physicians agreed to involve parents, and to a lesser extent, children in the decision-making process about withholding/withdrawing LST. Our analysis to identify conceptual schemes revealed that physicians divided their decision-making into three stages: (1) early preparation via advance care planning, (2) information giving and receiving, and (3) arriving at the final decision. Physicians considered advocating for the best interests of the child and of the parents as their major focus. We also identified moderating factors of decision-making, such as facilitators and barriers, specifically those related to physicians and parents that influenced physicians' decision-making.
By focusing on stakeholders, structure of the decision-making process, ethical values, and influencing factors, our analysis showed that physicians generally agreed to share the decision-making with parents and the child, especially for adolescents. Further research is required to better understand how to minimise the negative impact of barriers on the decision-making process (e.g., difficult involvement of children, lack of paediatric palliative care expertise, conflict with parents).
在儿科患者中，决定是否在生命末期停止/撤回生命支持治疗（LST）是困难且具有伦理敏感性的。人们对医生在儿科患者生命末期决定停止/撤回 LST 的方式和原因知之甚少。在这项研究中，我们旨在综合文献中关于医生在处理儿科患者停止/撤回生命支持治疗时决策的看法。
我们对经验性定性研究进行了系统综述。为了识别从成立到 2021 年 3 月 17 日发表的英文文章，我们彻底搜索了五个电子数据库（Pubmed、Cinahl®、Embase®、Scopus®、Web of Science™）。分析和综合受鲁汶定性分析指南的指导。
有 30 篇出版物符合我们的标准并被纳入分析。总体而言，我们发现医生同意让父母（在较小程度上是儿童）参与停止/撤回 LST 的决策过程。我们为识别概念方案进行的分析表明，医生将他们的决策分为三个阶段：（1）通过预先护理计划进行早期准备，（2）信息的给予和接收，以及（3）做出最终决定。医生认为倡导儿童和父母的最佳利益是他们的主要关注点。我们还确定了决策的调节因素，例如促进者和障碍，特别是那些与影响医生决策的医生和父母有关的促进者和障碍。
通过关注利益相关者、决策过程的结构、伦理价值观和影响因素，我们的分析表明，医生通常同意与父母和孩子共同决策，尤其是对于青少年。需要进一步研究以更好地理解如何最小化障碍对决策过程的负面影响（例如，儿童难以参与、缺乏儿科姑息治疗专业知识、与父母的冲突）。
