Ethical Challenges at the Frontiers of Medical Care for Children with Congenital Heart Disease in the U.S

The past 8 decades have seen tremendous medical and technological advancements in the care of children with congenital heart disease (CHD). As with all medical care, there are boundaries of established practices, and at the frontiers of innovation we often encounter ethical challenges. This paper reviews the current ethical challenges that arise in the medical care of children with CHD. Ethical challenges are present at the individual, community, population, and system levels. This paper reviews three main categories of ethical challenges: (1) challenges of equity, including those based on social determinants of health, genetic differences, neurologic differences, and the impact on allocation of scarce resources; (2) challenges of decision-making, including team decision-making, shared decision-making, limits of parental authority, requests for life-prolonging therapies, and end-of-life decisions; and (3) challenges to the healthcare system, including costs, resource utilization, economic and research competition, and healthcare worker psychological distress. There will always be ethical challenges at the frontiers of our medical capabilities that have no easy solutions. Recognizing and acknowledging these ethical tensions is an important first step to overcome these challenges. Prioritizing healthcare equity, collaboration, transparency, and advocacy will help guide ethically sound decisions for the well-being of patients, families, healthcare providers, and the healthcare system as we continue to push the boundaries of what is possible.