Ethical considerations in patients with extracardiac or genetic anomalies

Patients with congenital heart disease (CHD) often have other comorbidities including extracardiac and genetic anomalies that can negatively impact their outcomes after cardiac surgery. In this chapter, we provide the historical context and describe an era when children with disabilities were denied life-saving procedures. We explore modern examples of trisomies 13 and 18 to show how, although attitudes towards some genetic anomalies have shifted, conflicts about others continue to arise. We discuss the use of the best interest standard, appropriate ethical justifications for not offering surgery, and how to balance justice and societal burdens when a child has significant extracardiac anomalies that may limit his or her lifespan appreciably and/or impact quality of life. Finally, we explore the perspectives of the clinician and the parents, the importance of shared decision-making, and acknowledge the important role of the parent in cases where complexity is high, and prognostication is difficult.