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.

National Institute of Health (NIH)
Eunice Kennedy Shriver National Institute of Child Health & Human Development (NICHD)
Mentored Patient-Oriented Research Career Development Award (K23)
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Study Section
Pediatrics Subcommittee (CHHD)
Program Officer
Jenkins, Tammara L
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Johns Hopkins University
Schools of Medicine
United States
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Boss, Renee; Nelson, Judith; Weissman, David et al. (2014) Integrating palliative care into the PICU: a report from the Improving Palliative Care in the ICU Advisory Board. Pediatr Crit Care Med 15:762-7