Bioethics for Neonatal Cardiac Care


Vanessa N. Madrigal, Department of Pediatrics, Division of Critical Care Medicine and Pediatric Ethics Program, Children's National Hospital, George Washington University, Washington, District of Columbia.
Dalia M. Feltman, NorthShore University HealthSystem Evanston Hospital, University of Chicago, Pritzker School of Medicine, Chicago, Illinois.
Steven R. Leuthner, Departments of Pediatrics and Bioethics, Division of Neonatology, Children's Wisconsin, Medical College of Wisconsin, Milwaukee, Wisconsin.
Roxanne Kirsch, Department of Critical Care, Division Cardiac Critical Care Medicine; Department of Bioethics, The Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada.
Rekha Hamilton, Mednax Inc. Cook Children's Medical Center, Fort Worth, Texas.
Deborah Dokken, Family Leader and Staff Member, Institute for Patient and Family-Centered Care, Bethesda, Maryland.
Jennifer Needle, Department of Pediatrics and the Center for Bioethics, University of Minnesota, Minneapolis, Minnesota.
Renee Boss, Department of Pediatrics, Johns Hopkins School of Medicine and Berman Institute of Bioethics, Baltimore, Maryland.
Efrat Lelkes, Department of Pediatrics, Divisions of Critical Care Medicine and Palliative Medicine, Bioethics, University of California San Francisco, San Francisco, California.
Brian Carter, Departments of Humanities and Pediatrics, Division of Neonatology and Bioethics Center, Children's Mercy Hospital, University of Missouri-Kansas City School of Medicine, Kansas City, Missouri.
Eduardo Macias, Department of Pediatrics, Division of Pediatric Cardiology. University Hospital, University of Texas, San Antonio, Texas.
Shazia Bhombal, Department of Pediatrics, Lucile Packard Children's Hospital. Stanford, Palo Alto, California.

Document Type

Journal Article

Publication Date







Suppl 2




BACKGROUND: Clinicians caring for neonates with congenital heart disease encounter challenges with ethical implications in daily practice and must have some basic fluency in ethical principles and practical applications. METHODS: Good ethical practice begins with a thorough understanding of the details and narrative of each individual case, examination via classic principles of bioethics, and further framing of that translation into practice. RESULTS: We explore some of these issues and expand awareness through the lens of a case presentation beginning with fetal considerations through end-of-life discussions. CONCLUSIONS: We include specific sections that bring attention to shared decision-making, research ethics, and outcomes reporting. We review empirical evidence and highlight recommendations.