Centre Hospitalier Intercommunal de Creteil, Newborn Intensive Care Unit, Department of Research in Ethics EA 1610 Studies on Science and Techniques, Paris-South University, Creteil, France.
PLoS One. 2011;6(12):e28633. doi: 10.1371/journal.pone.0028633. Epub 2011 Dec 14.
The importance of involving parents in the end-of-life decision-making-process (EOL DMP) for their child in the neonatal intensive care unit (NICU) is recognised by ethical guidelines in numerous countries. However, studies exploring parents' opinions on the type of involvement report conflicting results. This study sought to explore parents' experience of the EOL DMP for their child in the NICU.
The study used a retrospective longitudinal design with a qualitative analysis of parental experience 3 years after the death of their child in four NICUs in France. 53 face-to-face interviews and 80 telephone interviews were conducted with 164 individuals. Semi-structured interviews were conducted to explore how parents perceived their role in the decision process, what they valued about physicians' attitudes in this situation and whether their long-term emotional well being varied according to their perceived role in the EOL DMP.
Qualitative analysis identified four types of perceived role in the DMP: shared, medical, informed parental decision, and no decision. Shared DM was the most appreciated by parents. Medical DM was experienced as positive only when it was associated with communication. Informed parental DM was associated with feelings of anxiousness and abandonment. The physicians' attitudes that were perceived as helpful in the long term were explicit sharing of responsibility, clear expression of staff preferences, and respectful care and language toward the child.
Parents find it valuable to express their opinion in the EOL DMP of their child. Nonetheless, they do need continuous emotional support and an explicit share of the responsibility for the decision. As involvement preferences and associated feelings can vary, parents should be able to decide what role they want to play. However, our study suggests that fully autonomous decisions should be misadvised in these types of tragic choices.
许多国家的伦理准则都认识到让父母参与新生儿重症监护病房（NICU）中患儿的临终决策过程（EOL DMP）的重要性。然而，研究探索父母对参与类型的意见报告结果存在冲突。本研究旨在探讨父母在 NICU 中为孩子进行 EOL DMP 的体验。
该研究采用回顾性纵向设计，对法国 4 家 NICU 中 164 名个人的 164 名个体进行了 53 次面对面访谈和 80 次电话访谈，对父母的经历进行了 3 年的定性分析。半结构化访谈旨在探讨父母如何看待他们在决策过程中的角色，他们对医生在这种情况下的态度的重视程度，以及他们的长期情感幸福感是否因他们在 EOL DMP 中的感知角色而有所不同。
定性分析确定了 DMP 中的四种感知角色：共同、医疗、知情父母决策和无决策。共同决策最受父母欢迎。只有当医疗决策与沟通相关时，才会被视为积极的。知情父母决策会引起焦虑和被遗弃的感觉。从长远来看，被认为有帮助的医生态度是明确分担责任、明确表达员工偏好以及对孩子关怀和尊重的语言。
父母发现表达他们对孩子 EOL DMP 的意见很有价值。尽管如此，他们确实需要持续的情感支持和对决策的明确分担责任。由于参与偏好和相关感受可能会有所不同，父母应该能够决定他们想要扮演的角色。然而，我们的研究表明，在这些类型的悲剧性选择中，应避免完全自主的决策。
