Decision-Making in Critically Ill Infants

描述（由申请人提供）：自新生儿科专业开始以来，关于哪些新生儿应该复苏以及复苏力度如何的伦理困境就一直存在。最初，这些决定是由医生单独做出的。在过去的40年里，父母参与共同决策变得越来越重要，有时甚至超过了医疗团队的权威。然而，对于父母和医疗服务提供者如何合作为病情最严重的婴儿做出决定，人们知之甚少。目前尚不清楚共同决策的伦理框架是如何在重症新生儿的护理中实现的。现有数据表明，这种合作充满了困难，可能会给所有参与者带来道德上的痛苦。这个建议的指导病人为导向的研究职业发展（K23）奖的目标是收集关于在婴儿危重疾病的背景下父母和提供者之间发生的决策过程的经验证据。我们将记录50个这样的父母和提供者之间的对话。我们将记录产前关于高危婴儿产房管理决策的讨论，以及产后关于限制或撤销维持生命治疗的讨论。使用定性和定量方法，我们将描述这些对话的内容和过程，并确定哪些元素与协作、共识和满意度相关。基于这些发现，我们将为父母设计一个沟通技巧干预。干预的目标是使危重婴儿的父母为与卫生保健提供者进行困难的对话做好准备。在奖励计划的最后阶段，我们将在一小群家长中试行这项干预措施，以确定其可行性。然后，我们将设计一个RO1来评估这种干预措施增强协作决策的能力。尽管医学和技术不断进步，但总会有一群婴儿出生在“生存能力的门槛”。我们预计，随着有关决策“最佳实践”的新问题的出现，这些婴儿的生物伦理原则和临床护理将继续共同发展。这项研究将提供独特的，直接的观察，发生在父母和卫生保健提供者之间的复杂的相互作用，因为他们为危重婴儿深思熟虑的困难决定。我们相信，了解这些相互作用可以帮助我们改善我们为这些家庭提供的照顾，可以增强父母-提供者的共识，可以减少父母的痛苦和决定的遗憾。

DESCRIPTION (provided by applicant): Ethical dilemmas about which newborns should be resuscitated-and how aggressively-have existed since the specialty of neonatology began. Initially, these decisions were made by the physician alone. In the past 40 years, parent participation in shared decision-making has become increasingly important, and at times, even surpasses the authority of the medical team. Yet relatively little is known about how parents and providers collaborate to make decisions for the sickest infants. It is unclear how ethical frameworks for shared decision- making are being actualized in the care of critically ill newborns. Existing data suggest that this collaboration is fraught with difficulty and can contribute to moral distress for all involved. The goal of this proposed Mentored Patient-Oriented Research Career Development (K23) award is to gather empirical evidence about the decision-making process that occurs between parents and providers in the context of an infant's critical illness. We will record 50 such conversations between parents and providers. We will record discussions in the prenatal period about decisions regarding delivery-room management for high risk infants, and postnatal discussions regarding limiting or withdrawing life-sustaining therapies. Using both qualitative and quantitative methods, we will describe the content and process of these dialogues and determine which elements are associated with collaboration, consensus, and satisfaction. Based on these findings, we will devise a communication skills intervention for parents. The goal of the intervention is to prepare parents of critically ill infants for difficult conversations with health care providers. We will pilot the intervention with a small group of parents for feasibility during the final phase of the Award period. We will then design an RO1 to evaluate the ability of this intervention to enhance collaborative decision-making. Despite advances in medicine and technology, there will always be a group of infants born at the "threshold of viability." We anticipate that bioethical principles and clinical care for these infants will continue to evolve together as new questions arise about the "best practices" for decision-making. This study will provide unique, direct observation of the complex interactions that occur between parents and health care providers as they deliberate difficult decisions for critically ill infants. We believe that understanding these interactions can help us to improve the care we provide these families, can enhance parent-provider consensus, and can decrease parental distress and decisional regret. PUBLIC HEALTH RELEVANCE: This project aims to understand how parents and health care providers work together to make decisions for infants who are at high risk of profound disability or death. We wish to identify ways to improve this collaboration, so that providers can better support families through these incredibly difficult experiences.