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Ethical Considerations in Patients with Extracardiac or Genetic Anomalies

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Bioethical Controversies in Pediatric Cardiology and Cardiac Surgery

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Abstract

Patients with congenital heart disease (CHD) often have other comorbidities including extracardiac and genetic anomalies that can negatively impact their outcomes after cardiac surgery. In this chapter, we provide the historical context and describe an era when children with disabilities were denied life-saving procedures. We explore modern examples of trisomies 13 and 18 to show how, although attitudes towards some genetic anomalies have shifted, conflicts about others continue to arise. We discuss the use of the best interest standard, appropriate ethical justifications for not offering surgery, and how to balance justice and societal burdens when a child has significant extracardiac anomalies that may limit his or her lifespan appreciably and/or impact quality of life. Finally, we explore the perspectives of the clinician and the parents, the importance of shared decision-making, and acknowledge the important role of the parent in cases where complexity is high, and prognostication is difficult.

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Author information

Authors and Affiliations

  1. Advocate Children’s Heart Institute, Advocate Children’s Hospital, Oak Lawn, IL, USA

    Rupali Gandhi

  2. Department of Pediatrics, Division of Pediatric Cardiology, Ann and Robert H. Lurie Children’s Hospital of Chicago, Northwestern University Feinberg School of Medicine, Chicago, IL, USA

    Angira Patel

Authors
  1. Rupali Gandhi
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  2. Angira Patel
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Correspondence to Rupali Gandhi .

Editor information

Editors and Affiliations

  1. Johns Hopkins All Children’s Hospital, Johns Hopkins University School of Medicine, St. Petersburg, FL, USA

    Constantine Mavroudis

  2. Rollins College, Winter Park, FL, USA

    J. Thomas Cook

  3. University of Pennsylvania, Philadelphia, PA, USA

    Constantine D. Mavroudis

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Gandhi, R., Patel, A. (2020). Ethical Considerations in Patients with Extracardiac or Genetic Anomalies. In: Mavroudis, C., Cook, J., Mavroudis, C. (eds) Bioethical Controversies in Pediatric Cardiology and Cardiac Surgery. Springer, Cham. https://doi.org/10.1007/978-3-030-35660-6_6

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  • DOI: https://doi.org/10.1007/978-3-030-35660-6_6

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  • Online ISBN: 978-3-030-35660-6

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