Abstract
This chapter focuses on the medical and ethical issues involved in decision-making for newborns with severe disability or impairment. We begin by defining the conceptual terminology used in neonatology, distinguishing it from more general social terms such as “newborn.” We then move to a brief historical analysis of the Baby Doe rulings, the case law that lays the foundation for the model of shared medical decision-making currently operating in the US. We examine how these legal rulings reflect and support a changing cultural landscape in medical decision-making and the emergence of the current model of “shared decision-making,” which is presented, both as an ethical ideal, and as a practical guide. We evaluate the use of the “best interest of the child” standard in resolving goals 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-making.
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Notes
- 1.
Also known as Patau syndrome, is a chromosomal condition associated with severe intellectual disability and physical abnormalities.
- 2.
Also known as Edwards syndrome, is a condition that is caused by an error in cell division, known as meiotic disjunction.
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Further Reading
Adams R.C., S.E. Levy, COUNCIL ON CHILDREN WITH DISABILITIES. 2017. Shared decision-making and children with disabilities: pathways to consensus. Pediatrics 139(6): e20170956.https://doi.org/10.1542/peds.2017-0956.
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Devereaux, M., Marc-Aurele, K.L. (2022). Newborns with Severe Disability or Impairment. In: Nortjé, N., Bester, J.C. (eds) Pediatric Ethics: Theory and Practice . The International Library of Bioethics, vol 89. Springer, Cham. https://doi.org/10.1007/978-3-030-86182-7_17
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