Abstract

This chapter focuses on the medical and ethical issues involved in decision-makingDecision-making for newbornsNewborn with severe disabilityDisability or impairmentImpairment. We begin by defining the conceptual terminology used in neonatology, distinguishing it from more general socialSocial terms such as “newbornNewborn.” We then move to a brief historical analysis of the Baby DoeBaby Doe rulings, the case law that lays the foundation for the model of shared medical decision-makingDecision-making currently operating in the US. We examine how these legal rulings reflect and support a changing culturalCultural landscape in medical decision-makingDecision-making and the emergence of the current model of “shared decision-makingDecision-making,” which is presented, both as an ethical ideal, and as a practical guide. We evaluate the use of the “best interestBest interest of the child” standard in resolving goalsGoals of care disagreements. We then analyze competing ethical priorities in two complex pediatric conditions: extreme prematurity and a serious congenital heart condition. The chapter concludes with recommendations for best practices in shared decision-makingDecision-making.