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Ethical considerations of transparency, informed consent, and nudging in a patient with paediatric aortic stenosis and symptomatic left ventricular endocardial fibroelastosis*

Published online by Cambridge University Press:  02 February 2017

Constantine D. Mavroudis ,
Thomas Cook ,
Jeffrey P. Jacobs  and
Constantine Mavroudis
Constantine D. Mavroudis*
Affiliation:
Department of Surgery, Division of Cardiothoracic Surgery, University of Pennsylvania School of Medicine, Philadelphia, Pennsylvania, United States of America
Thomas Cook
Affiliation:
Department of Philosophy, Rollins College, Winter Park, Florida, United States of America
Jeffrey P. Jacobs
Affiliation:
Division of Cardiovascular Surgery, Johns Hopkins All Children’s Heart Institute, Johns Hopkins All Children’s Hospital and Florida Hospital for Children, Saint Petersburg, Tampa, and Orlando, Florida, United States of America Department of Surgery, Division of Cardiac Surgery, Johns Hopkins University School of Medicine, Baltimore, Maryland, United States of America
Constantine Mavroudis
Affiliation:
Division of Cardiovascular Surgery, Johns Hopkins All Children’s Heart Institute, Johns Hopkins All Children’s Hospital and Florida Hospital for Children, Saint Petersburg, Tampa, and Orlando, Florida, United States of America Department of Surgery, Division of Cardiac Surgery, Johns Hopkins University School of Medicine, Baltimore, Maryland, United States of America
*
Correspondence to: C. Mavroudis, MD, Professor of Surgery, Johns Hopkins University School of Medicine, Site Director, Johns Hopkins Children’s Heart Surgery, Florida Hospital for Children, 2501 N. Orange Avenue, Suite 540, Orlando, FL 32804, United States of America. Tel: +407 303 3697; Fax: +407 303 3634; E-mail: constantine.mavroudis.md@flhosp.org.
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Abstract

A 9-year-old boy who was born with bicuspid aortic stenosis underwent two unsuccessful aortic valvuloplasty interventions, and by 2 years of age he developed restrictive cardiomyopathy caused by left ventricular endocardial fibroelastosis and diastolic dysfunction. The attending cardiologist referred the patient to a high-volume, high-profile congenital cardiac surgical programme 1000 miles away that has a team with considerable experience with left ventricular endocardial fibroelastosis resection and a reputation of achieving good results. Owing to problems with insurance coverage, the parents sought other options for the care of their child in their home state. Dr George Miller is a well-respected local congenital and paediatric cardiac surgeon with considerable experience with the Ross operation as well as with right ventricular endocardial fibroelastosis resection. When talking with Dr Miller, he implied that there is little difference between right ventricular endocardial fibroelastosis and left ventricular endocardial fibroelastosis resection, and stated that he would perform the operation with low mortality based on his overall experience. Dr Miller stated that the local institution could provide an equivalent surgical procedure with comparable outcomes, without the patient and family having to travel out of state. A fundamental dilemma that often arises in clinical surgical practice concerns the conduct of assessing and performing new procedures, especially in rare cases, for which the collective global experience is scant. Although Dr Miller has performed right ventricular endocardial fibroelastosis resection, this procedure differs from left ventricular endocardial fibroelastosis resection, and he cannot be sure that he will indeed be able to perform the procedure better than the high-volume surgeon. This ethical situation is best understood in terms of the principles of respect for patient autonomy, beneficence, non-maleficence, and justice. The tension between the imperatives of beneficence and the obligation to respect the autonomy of the patient by acting only with the patient’s best interest in mind is discussed.

Keywords

Medical ethicspatient rightsnudgingvirtueethics
Type
Original Articles
Information
Cardiology in the Young , Volume 26 , Special Issue 8: HeartWeek 2016 , December 2016 , pp. 1573 - 1580
Copyright
© Cambridge University Press 2017 

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Footnotes

*

Presented at the Johns Hopkins All Children’s Heart Institute 16th International Symposium on Congenital Heart Disease, Special Focus: Pediatric and Congenital Diseases of the Aorta, Co-Sponsor: The American Association for Thoracic Surgery, Saint Petersburg, Florida, United States of America, Saturday, 13 February, 2016 to Tuesday, 16 February, 2016.

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