Living bioethics, theories and children's consent to heart surgery

Priscilla Alderson; Deborah Bowman; Joe Brierley; Nathalie Dedieu; Martin J Elliott; Jonathan Montgomery; Hugo Wellesley

doi:10.1177/14777509221091086

Living bioethics, theories and children's consent to heart surgery

Clin Ethics. 2023 Dec;18(4):418-426. doi: 10.1177/14777509221091086. Epub 2022 Apr 7.

Authors

Priscilla Alderson¹, Deborah Bowman², Joe Brierley³, Nathalie Dedieu³, Martin J Elliott⁴, Jonathan Montgomery⁵, Hugo Wellesley³

Affiliations

¹ Social Research Institute, University College London, London, UK.
² Medical Ethics, St George's Hospital, London, UK.
³ Great Ormond Street Children's Hospital, London, UK.
⁴ Cardiothoracic Surgery, University College London, London, UK.
⁵ Faculty of Law, University College London, London, UK.

Abstract

Background: This analysis is about practical living bioethics and how law, ethics and sociology understand and respect children's consent to, or refusal of, elective heart surgery. Analysis of underlying theories and influences will contrast legalistic bioethics with living bioethics. In-depth philosophical analysis compares social science traditions of positivism, interpretivism, critical theory and functionalism and applies them to bioethics and childhood, to examine how living bioethics may be encouraged or discouraged. Illustrative examples are drawn from research interviews and observations in two London paediatric cardiac units. This paper is one of a series on how the multidisciplinary cardiac team members all contribute to the complex mosaic of care when preparing and supporting families' informed consent to surgery.

Results: The living bioethics of justice, care and respect for children and their consent depends on theories and practices, contexts and relationships. These can all be undermined by unseen influences: the history of adult-centric ethics; developmental psychology theories; legal and financial pressures that require consent to be defined as an adult contract; management systems and daily routines in healthcare that can intimidate families and staff; social inequalities. Mainstream theories in the clinical ethics literature markedly differ from the living bioethics in clinical practices.

Conclusion: We aim to contribute to raising standards of respectful paediatric bioethics and to showing the relevance of virtue and feminist ethics, childhood studies and children's rights.

Keywords: Philosophical aspects; bioethics and medical ethics; care for specific groups; clinical ethics; health care; health care quality; informed consent; minors; professional ethics in medicine; professional ethics in nursing.