Amalia Children's Hospital, Radboud Institute of Healthcare Sciences, Radboud University Medical Center, Nijmegen, Netherlands.
Oxford Uehiro Centre for Practical Ethics, Faculty of Philosophy, University of Oxford, Oxford, UK; Oxford Newborn Care Unit, John Radcliffe Hospital, Oxford University, Oxford, UK; Murdoch Children's Research Institute, Melbourne, VIC, Australia; Centre for Biomedical Ethics, National University of Singapore Yong Loo Lin School of Medicine, Singapore.
Lancet Child Adolesc Health. 2024 Mar;8(3):225-235. doi: 10.1016/S2352-4642(23)00267-5. Epub 2024 Jan 11.
Incorporating parental values in complex medical decisions for young children is important but challenging. In this Review, we explore what it means to incorporate parental values in complex paediatric and perinatal decisions. We provide a narrative overview of the paediatric, ethics, and medical decision-making literature, focusing on value-based and ethically complex decisions for children who are too young to express their own preferences. We explain key concepts and definitions, discuss paediatric-specific features, reflect on challenges in learning and expressing values for both parents and health-care providers, and provide recommendations for clinical practice. Decisional values are informed by global and external values and could relate to the child, the parents, and the whole family. These values should inform preferences and assure value-congruent choices. Additionally, parents might hold various meta values on the process of decision making itself. Complex decisions for young children are emotionally taxing, ethically difficult, and often surrounded by uncertainty. These contextual factors make it more likely that values and preferences are initially absent or unstable and need to be constructed or stabilised. Health-care professionals and parents should work together to construct and clarify values and incorporate them into personalised decisions for the child. An open communication style, with unbiased and tailored information in a supportive environment, is helpful. Dedicated training in communication and shared decision making could help to improve the incorporation of parental values in complex decisions for young children.
将父母的价值观纳入对幼儿的复杂医疗决策中非常重要，但也极具挑战性。在这篇综述中，我们探讨了在涉及儿童的复杂儿科和围产期决策中纳入父母价值观的含义。我们对儿科、伦理和医疗决策文献进行了叙述性综述，重点关注那些年龄太小而无法表达自身偏好的儿童的基于价值观和伦理复杂的决策。我们解释了关键概念和定义，讨论了儿科特有的特征，反思了父母和医疗保健提供者在学习和表达价值观方面的挑战，并为临床实践提供了建议。决策价值观受到全球和外部价值观的影响，可能与孩子、父母和整个家庭有关。这些价值观应该为偏好提供信息，并确保做出符合价值观的选择。此外，父母可能对决策过程本身持有各种元价值观。对于幼儿来说，复杂的决策既耗费情感，又具有伦理难度，而且往往充满不确定性。这些背景因素使得价值观和偏好最初可能缺失或不稳定，需要构建或稳定。医疗保健专业人员和父母应共同努力，构建和阐明价值观，并将其纳入针对儿童的个性化决策中。在支持性环境中提供公正和量身定制的信息的开放沟通方式会有所帮助。专门的沟通和共同决策培训可以帮助改善将父母价值观纳入幼儿复杂决策的情况。
