Decision-Making in Critically Ill Infants

描述(由申请人提供)：自从新生儿学专业开始以来，关于哪些新生儿应该被复苏-以及如何积极-的伦理困境一直存在。最初，这些决定是由医生独自做出的。在过去的40年里，家长参与共享决策变得越来越重要，有时甚至超越了医疗团队的权威。然而，关于父母和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，在重症新生儿的护理中，共享决策的伦理框架是如何实施的。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精神上的痛苦。这项拟议的以患者为导向的导师研究职业发展奖(K23)的目标是收集关于在婴儿危重疾病背景下父母和提供者之间发生的决策过程的经验证据。我们将录制50次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定的讨论，以及出生后关于限制或取消生命维持治疗的讨论。我们将使用定性和定量的方法，描述这些对话的内容和过程，并确定哪些要素与合作、共识和满意度有关。基于这些发现，我们将为家长设计一种沟通技能干预。干预的目标是让危重婴儿的父母为与医疗保健提供者进行艰难的对话做好准备。我们将在颁奖期的最后阶段与一小群家长一起进行干预试验，以确定可行性。然后，我们将设计RO1来评估这种干预增强协作决策的能力。尽管医学和技术都在进步，但总会有一群婴儿出生在“生存能力的门槛”。我们预计，随着决策的“最佳实践”出现新的问题，生命伦理原则和对这些婴儿的临床护理将继续一起发展。这项研究将为父母和医疗保健提供者之间发生的复杂互动提供独特的、直接的观察，因为他们为危重婴儿做出艰难的决定。我们相信，了解这些相互作用可以帮助我们改善对这些家庭的照顾，可以增强父母-提供者的共识，并可以减少父母的痛苦和决定后悔。 公共卫生相关性：该项目旨在了解父母和卫生保健提供者如何共同努力，为极有可能导致严重残疾或死亡的婴儿作出决定。我们希望找到改善这种合作的方法，以便提供者能够更好地支持家庭度过这些令人难以置信的困难经历。

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.