Janvier Annie, Barrington Keith, Farlow Barbara
Department of Pediatrics and Clinical Ethics, University of Montreal, Montreal, Quebec, Canada; Sainte-Justine Hospital, Montreal, Quebec, Canada.
Sainte-Justine Hospital, Montreal, Quebec, Canada; Department of Pediatrics, University of Montreal, Montreal, Quebec, Canada.
Semin Perinatol. 2014 Feb;38(1):38-46. doi: 10.1053/j.semperi.2013.07.007.
The nature and content of the conversations between the healthcare team and the parents concerning withholding or withdrawing of life-sustaining interventions for neonates vary greatly. These depend upon the status of the infant; for some neonates, death may be imminent, while other infants may be relatively stable, yet with a potential risk for surviving with severe disability. Healthcare providers also need to communicate with prospective parents before the birth of premature infants or neonates with uncertain outcomes. Many authors recommend that parents of fragile neonates receive detailed information about the potential outcomes of their children and the choices they have provided in an unbiased and empathetic manner. However, the exact manner this is to be achieved in clinical practice remains unclear. Parents and healthcare providers may have different values regarding the provision of life-sustaining interventions. However, parents base their decisions on many factors, not just probabilities. The role of emotions, regret, hope, quality of life, resilience, and relationships is rarely discussed. End-of-life discussions with parents should be individualized and personalized. This article suggests ways to personalize these conversations. The mnemonic "SOBPIE" may help providers have fruitful discussions: (1) What is the Situation? Is the baby imminently dying? Should withholding or withdrawing life-sustaining interventions be considered? (2) Opinions and options: personal biases of healthcare professionals and alternatives for patients. (3) Basic human interactions. (4) Parents: their story, their concerns, their needs, and their goals. (5) Information: meeting parental informational needs and providing balanced information. (6) Emotions: relational aspects of decision making which include the following: emotions, social supports, coping with uncertainty, adaptation, and resilience. In this paper, we consider some aspects of this complex process.
医疗团队与家长之间就新生儿生命维持干预措施的 withhold（ withhold 在此语境中可理解为“不实施”“ withhold 或 withdraw（ withdraw 可理解为“撤除”）进行的讨论，其性质和内容差异很大。这些取决于婴儿的状况；对于一些新生儿来说，死亡可能迫在眉睫，而其他婴儿可能相对稳定，但有存活并伴有严重残疾的潜在风险。医疗服务提供者还需要在早产或预后不确定的新生儿出生前与准父母进行沟通。许多作者建议，以公正且富有同理心的方式，向脆弱新生儿的父母提供有关其子女潜在预后以及他们所面临选择的详细信息。然而，在临床实践中究竟如何做到这一点仍不明确。家长和医疗服务提供者在提供生命维持干预措施方面可能有不同的价值观。然而，家长的决策基于多种因素，而不仅仅是概率。情感、遗憾、希望、生活质量、恢复力和人际关系等因素的作用很少被讨论。与家长进行的临终讨论应该个性化和个体化。本文提出了使这些对话个性化的方法。助记符“SOBPIE”可能有助于医疗服务提供者进行富有成效的讨论：（1）情况如何？婴儿是否即将死亡？是否应考虑不实施或撤除生命维持干预措施？（2）意见和选择：医疗专业人员的个人偏见以及患者的替代方案。（3）基本的人际互动。（4）家长：他们的故事、担忧、需求和目标。（5）信息：满足家长的信息需求并提供平衡的信息。（6）情感：决策的关系层面，包括以下方面：情感、社会支持、应对不确定性、适应和恢复力。在本文中，我们考虑了这个复杂过程的一些方面。
