Informed Consent in Fetal Hypoplastic Left Heart Syndrome [BOOK CHAPTER]

Informed Consent in Fetal Hypoplastic Left Heart Syndrome [BOOK CHAPTER]
Constantine Mavroudis, Angira Patel, Rupali Gandhi
Bioethical Controversies in Pediatric Cardiology and Cardiac Surgery
Springer, 29 February 2020; pp 163-177
Abstract
Informed Consent in the setting of complex fetal congenital heart disease such as hypoplastic left heart syndrome involves many concerned individuals who include: the mother, the father, the obstetrician, the pediatric cardiologist, the pediatric cardiac surgeon, and many others. It is the duty of the physician to administer and perform informed consent under high risk pre- and postnatal circumstances that require high risk surgical options without which the newborn baby would most certainly die. We explore the intricate roll that physicians play in the informed consent process from prenatal to post-natal circumstances which include making decisions about pregnancy termination, comfort care, and staged palliation. Important considerations such as the importance of the woman’s bodily integrity, autonomy, and the ethics of comfort care are discussed with reference to other complex congenital heart lesions. We conclude that informed consent for HLHS decisions is best practiced by a multi-disciplinary organized approach that will allow comprehensive counseling by multiple care-givers in a timely fashion. Ultimately, the obstetrician/pediatric cardiologist team continue to be the primary physicians that assist with shared decision-making.

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