Cardiology in the Young

Part 2: Ethical Considerations Associated with Caring for Patients with Hypoplastic Left Heart Syndrome

Informed consent, bioethical equipoise, and hypoplastic left heart syndrome

Constantine Mavroudisa1a2 c1, Constantine D. Mavroudisa3, Ruth M. Farrella2, Marshall L. Jacobsa1, Jeffrey P. Jacobsa4 and Eric D. Kodisha2

a1 Department of Pediatric and Adult Congenital Heart Surgery, Center for Ethics, Humanities and Spiritual Care, Cleveland Clinic, Cleveland, Ohio, United States of America

a2 Department of Bioethics, Center for Ethics, Humanities and Spiritual Care, Cleveland Clinic, Cleveland, Ohio, United States of America

a3 Loyola University Chicago Stritch Medical School, Chicago, Illinois, United States of America

a4 Division of Thoracic and Cardiovascular Surgery, The Congenital Heart Institute of Florida (CHIF), All Children's Hospital, University of South Florida College of Medicine, Cardiac Surgical Associates of Florida (CSAoF), Saint Petersburg and Tampa, Florida, United States of America

Abstract

In utero diagnosis of complex progressive cardiac disease such as hypoplastic left heart syndrome presents a novel opportunity for antepartum, intrapartum, and neonatal management. The clinical possibilities and potential for differing outcomes challenge the mother–foetus dyad with regard to informed consent. Previous studies reveal that rates of termination of pregnancy for foetuses with hypoplastic left heart syndrome vary widely in the United States and Europe, leading us to surmise that informed consent may be practised differently. The purpose of this paper is to review the ethical considerations and physician responsibilities of informed consent as they relate to prenatal and postnatal patients with hypoplastic left heart syndrome. Special consideration is paid to the informed consent process as practised by the obstetrician, perinatologist, paediatric cardiologist, and paediatric cardiac surgeon as it relates to termination of pregnancy, comfort care, and surgical palliation. We will argue that informed consent as it relates to hypoplastic left heart syndrome is far from standardised and that there exists a state of bioethical equipoise concerning the extent and limits of its application in the current clinical setting.

(Online publication December 13 2011)

Correspondence:

c1 Correspondence to: Dr C. Mavroudis, MD, Department of Pediatric and Adult Congenital Heart Surgery, Cleveland Clinic Children's Hospital, 9500 Euclid Avenue/M41-02, Cleveland, Ohio 44195, United States of America. Tel: +1 216 636 5288; Fax: +1 216 636 5859; E-mail: mavrouc@ccf.org