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Ethics, Conflict and Medical Treatment for Children from Disagreement to Dissensus

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Ethics, Conflict and Medical Treatment for Children from Disagreement to Dissensus Dominic Wilkinson • Julian Savulescu Author Manuscript Author Manuscript Author Manuscript Ethics, conflict and medical treatment for children From disagreement to dissensus Last Updated: September 4, 2018 Elsevier London (UK) Author Manuscript Author Manuscript Author Manuscript Elsevier, London (UK) © 2019, Elsevier Limited. All rights reserved. Creative Commons-Attribution-NoDerivs (CC-BY-ND). This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. Monographs, or book chapters, which are outputs of Wellcome Trust funding have been made freely available as part of the Wellcome Trust's open access policy International Standard Book Number-13: 9780702077838 International Standard Book Number-13: 9780702077821 International Standard Book Number-13: 9780702077814 The authors are grateful to Elsevier for granting permission to self-archive the author manuscript in PMC Bookshelf within six months of publication. NLM Citation: Wilkinson D, Savulescu J. Ethics, conflict and medical treatment for children: From disagreement to dissensus [Internet]. London (UK): Elsevier; 2018 Sep 4. iii Author Manuscript Author Manuscript Author Manuscript What should happen when doctors and parents disagree about what would be best for a child? When should courts become involved? Should life support be stopped against parents' wishes? The case of Charlie Gard, reached global attention in 2017. It led to widespread debate about the ethics of disagreements between doctors and parents, about the place of the law in such disputes, and about the variation in approach between different parts of the world. In this book, medical ethicists Dominic Wilkinson and Julian Savulescu critically examine the ethical questions at the heart of disputes about medical treatment for children. They use the Gard case as a springboard to a wider discussion about the rights of parents, the harms of treatment, and the vital issue of limited resources. They discuss other prominent UK and international cases of disagreement and conflict. From opposite sides of the debate Wilkinson and Savulescu provocatively outline the strongest arguments in favour of and against treatment. They analyse some of the distinctive and challenging features of treatment disputes in the 21st century and argue that disagreement about controversial ethical questions is both inevitable and desirable. They outline a series of lessons from the Gard case and propose a radical new “dissensus” framework for future cases of disagreement. iv Ethics, conflict and medical treatment for children Table of Contents Foreword 1 .................................................................................................................................................................................... v Foreword 2 .................................................................................................................................................................................... vii Preface............................................................................................................................................................................................ ix Author Manuscript Author Manuscript Author Manuscript Part 1 Disagreement.................................................................................................................................................................... 1 Chapter 1 The Charlie Gard case......................................................................................................................................... 3 PART 2 Agreement ........................................................................................................................................................................... 19 Chapter 2 Futility....................................................................................................................................................................... 21 Chapter 3 Best interests ........................................................................................................................................................... 31 Chapter 4 Resources ................................................................................................................................................................ 49 Chapter 5 Research.................................................................................................................................................................. 71 Chapter 6 Parents ..................................................................................................................................................................... 89 PART 3 Agreeing to Disagree ............................................................................................................................................... 101 Chapter 7 Dissensus and value pluralism............................................................................................................................103 Chapter 8 Embracing disagreement.....................................................................................................................................123 Chapter 9 Learning from Charlie Gard: What Should Be Done Next Time?..............................................................141 Acknowledgements...................................................................................................................................................................... 149 Appendix 1 Wilkinson’s view........................................................................................................................................................................... 151 Appendix 2 Savulescu’s view........................................................................................................................................................................... 159 v Foreword 1 In the field of bioethics, I am well known – some would say notorious – as a critic of the view that we should never intentionally take an innocent human life. Those who have heard about my views in bioethics often say that I am in favor of killing disabled babies. That’s not accurate. I hold that the parents of infants born with severe disabilities should consult with their doctors about the prospects for their child. Then, if the parents Author Manuscriptdecide that it is in Author Manuscriptthe best interests of their Author Manuscript child and their family for the infant to die, and the doctors consider this a reasonable decision, the doctors should be able lawfully to end the life of the child. At present, this is possible only in the Netherlands, and in very limited circumstances, in accordance with what is known as the Groningen Protocol. Why then, in the case of Charlie Gard – an infant with a rare genetic condition that has invariably led to death before the child’s first birthday – did I not support the doctors of Great Ormond Street Hospital? They went to court to prevent Charlie’s parents from taking him out of the London hospital and flying him to the United States for experimental treatment. The treatment, they told the court, had very little chance of saving Charlie’s life. Allowing him to be taken abroad would, the doctors thought, only prolong his suffering. Pope Francis was on the side of the parents – and so was I, in a blog I wrote with one of the co-authors of this book.1 No doubt some readers of that blog were surprised to find that I was on the same side of this issue as the pope. But the assumption that I would side with the doctors rather than with the parents overlooked an important factor that, in my discussions of euthanasia for severely infants, I have always insisted upon. It is for the parents to make the life or death decision for their child, unless their decision is manifestly contrary to the best interests of the child. The parents are the ones who will have to care for the child, if he or she survives. This is a view I have held for many years. Helga Kuhse and I defended it in our 1985 book Should the Baby Live? Over the intervening years, parents of severely disabled infants have reinforced my thinking on this question. Among the more memorable is a letter I received shortly after I arrived at Princeton University in 1999. My appointment was on the front page of the New York Times, thanks to protests by pro-life groups and a disability advocacy organization. The father of a severely handicapped child heard about the opposition to my views on euthanasia for severely disabled infants, and wrote: As the father of a severely handicapped son, I agree with you. He suffers from seizures every day, but the Catholic hospital that used extraordinary measures to keep his 24 week gestation, one pound, body alive without parental input does not care about him today. They got to play with their toys six years ago, and leave my family with the burden and David with the daily pain. I support parents who judge it best that their child should die, and want that death to be swift and humane; but for the same reason, I support parents who want their child to live, and want treatment that will give the child the best possible chance of survival. Not that the wishes of the parents override all other considerations. When it is clear that further treatment will cause the child pointless suffering because there
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