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'Who Is Silent Gives Consent': Power and Medical Decision-Making For

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'Who Is Silent Gives Consent': Power and Medical Decision-Making For ‘Who Is Silent Gives Consent’: Power And Medical Decision-Making For Children A thesis submitted to The University of Manchester for the degree of PhD in Bioethics and Medical Jurisprudence in the Faculty of Humanities 2011 Barry Lyons School of Law TABLE OF CONTENTS Page Abstract 5 Declaration & Copyright Statement 6 Acknowledgements 7 The Author 8 Table of Cases 9 Table of Statutes 11 PART I: INTRODUCTION Chapter 1 THE PROBLEM 12 2 ETHICAL & LEGAL BACKGROUND: CHILDREN, PARENTS & STATE 18 2.1 Children 18 2.2 Parents 22 2.2.1. Healthcare Decision-Making by Parents 29 2.2.2. The Special Nature of Healthcare Burdens 34 2.2.3. The Legitimacy of Parental Consent 38 2.3 State 44 2.3.1. State Intervention, Welfare and Competent Minors 46 2.3.2. Competence and Adolescence 48 3 LEGAL APPROACH: BEST INTERESTS 55 3.1 Introduction 55 3.2 The Best Interests Principle 56 3.3 Best Interests: Similar Cases, Different Outcome 59 3.4 In the Best Interests of the Child? 61 3.5 The Problem with Best Interests 65 3.6 Conclusions 68 4 PHILOSOPHICAL APPROACH: POWER 69 4.1 Bioethics, Conflict and Power 69 4.2 Conflict of Interests 72 4.3 Families and Power 74 4.4 State, Families and Power 76 4.5 Medical Power 77 4.6 Conclusions 78 5 OUTLINE OF SUBMITTED PAPERS 79 2 PART II: THE SUBMITTED ARTICLES 6 PAPER 1: OBLIGING CHILDREN 81 6.1 Introduction 81 6.2 Justifying Non-Beneficent Healthcare Interventions 84 6.3 The Nature of Obligations 89 6.4 The Legal Obligations of Children 90 6.5 Moral Obligations, Children and Healthcare 92 6.5.1. Moral Obligations to Family 92 6.5.2. Moral Obligations to Society 97 6.6 Obliging Children 101 6.7 The Calculus of Childhood Munificence 106 6.8 Conclusions 109 7 PAPER 2: EQUALITY AND RESEARCH ON CHILDREN 112 7.1 Introduction 112 7.2 Research on Children 114 7.3 Equality 116 7.4 Equality and Research 119 7.4.1. Age 120 7.4.2. Social Need 122 7.5 ‘Equalising’ Children 124 7.6 Conclusions 125 8 PAPER 3: ‘THE GOOD THAT IS INTERRED IN THEIR BONES’: 126 ARE THERE PROPERTY RIGHTS IN THE CHILD? 8.1 Introduction 127 8.2 Bone Marrow Donation by Minors 129 8.3 The Case of Sam 134 8.4 The Child in Trust 135 8.5 The Body is not Property? 138 8.5.1. Property in the Bodies of Children? 141 8.6 The Child as Property 143 8.7 Bone Marrow: Property in the Child? 148 8.8 The Problem of Commensurability 151 8.8.1. Property Does Not Have To Be Alienable 151 8.8.2. There may be Non-Economic Commensurability 152 8.8.3. Could There be Economic Commensurability? 153 8.9 Conclusions 154 9 PAPER 4: DYING TO BE RESPONSIBLE: 156 ADOLESCENCE, AUTONOMY AND RESPONSIBILITY 9.1 Introduction 156 9.2 The Bejing Rules and Adult Responsibility 159 9.3 Responsibility 160 9.4 Responsibility and Autonomy 163 9.5 A Brief History of Adolescent Autonomy 165 9.5.1. Specific Incapacity 170 9.5.2. Welfare 172 9.6 The Age of Criminal Responsibility 173 3 9.7 Responsibility: Adolescent Crime and Autonomy 176 9.8 Coherence and the Law 181 9.9 Conclusions 183 PART III 10 CONCLUSIONS 185 10.1 Children, Power and Inequality 186 10.1.1. Parents, Power and History 187 10.2 The Submitted Articles 190 10.2.1. Fairy Tales 191 10.3 Analysing Justifications 194 10.4 The Future 196 10.5 Concluding Remarks 197 Bibliography 199 Appendix: Published Papers 218 Word count of main text including footnotes: 78,046 4 ABSTRACT The University of Manchester Doctoral Programme in Bioethics and Medical Jurisprudence Barry Lyons 17 May 2011 ‘Who is Silent Gives Consent’: Power and Medical Decision-Making for Children This thesis seeks to examine how healthcare decisions are made for children, with a particular focus on situations where medical interventions that (1) are not intended to advance the medical welfare of the individual child (e.g. bone marrow donation and research without therapeutic intent involving young children), or (2) are contrary to the expressed will of the child (e.g. the imposition of life-saving treatment on adolescents who have refused it), are authorised by parents or the state. The authorisation of these procedures is contentious because they breach the child’s bodily integrity while either (a) lacking a clear therapeutic purpose with regard to that child, or (b) being imposed even though refused by a possibly competent adolescent. Their controversial nature has lead to attempts to justify these procedures, generally by the application of ideal-type adult-child relationship theories. The four papers at the core of this thesis examine these legitimising propositions but demonstrate that they are insufficiently robust to justify the acts in question. Instead, this thesis raises questions about inequality; about why it is deemed acceptable to take the tissue of the vulnerable incompetent but not the capable adult; or why it is appropriate to impose different tests of mental capacity on the adolescent and the adult, or of competence on the ‘criminal’ child and ‘innocent’ teenager. It is proposed that the reason that inequitable treatment can occur is because adults sit in a position of power and authority relative to children. Thus, the themes common to all four papers are power, inequality and fairness. There is also a focus on the use of language. It is argued that terms are used in academic debate about the imposition of unchosen healthcare burdens on vulnerable populations that lack clarity and transparency. If we hold that children are morally relevant beings deserving of respect then discussions about matters that concern them should take place using language that avoids obfuscation and the cloaking of adult interests. 5 DECLARATION No portion of the work referred to in the thesis has been submitted in support of an application for another degree or qualification of this or any other university or other institute of learning. COPYRIGHT STATEMENT i. The author of this thesis (including any appendices and/or schedules to this thesis) owns any copyright in it (the “Copyright”) and he has given The University of Manchester the right to use such Copyright for any administrative, promotional, educational and/or teaching purposes. ii. Copies of this thesis, either in full or in extracts, may be made only in accordance with the regulations of the John Rylands University Library of Manchester. Details of these regulations may be obtained from the Librarian. This page must form part of any such copies made. iii. The ownership of any patents, designs, trade marks and any and all other intellectual property rights except for the Copyright (the “Intellectual Property Rights”) and any reproductions of copyright works, for example graphs and tables (“Reproductions”), which may be described in this thesis, may not be owned by the author and may be owned by third parties. Such Intellectual Property Rights and Reproductions cannot and must not be made available for use without the prior written permission of the owner(s) of the relevant Intellectual Property Rights and/or Reproductions. iv. Further information on the conditions under which disclosure, publication and exploitation of this thesis, the Copyright and any Intellectual Property Rights and/or Reproductions described in it may take place is available from the Head of School of (insert name of school) (or the Vice-President) and the Dean of the Faculty of Life Sciences, for Faculty of Life Sciences’ candidates. 6 ACKNOWLEDGMENTS No thesis is written in isolation and this one is no exception. There are many people to whom I owe a debt of gratitude for their part in bringing my thesis to fruition. These include my colleagues at Our Lady’s Children’s Hospital, in particular Pat Doherty and David Mannion who supported my taking leave of absence in order to engage in this academic adventure. My extended family have been very encouraging throughout this time, and but for my parents-in-law, Ben and Maureen, perhaps I might never have pursued my interest in philosophy. To those who have read, commented and supervised my work I am especially appreciative: Matti Hayry, Tuija Takala, Charles Erin, David Gurnham and John Coggon. My two main supervisors, Iain Brassington and Margot Brazier have been inspirational, challenging me to think about things in a different way. I am very grateful for their help and teaching. I joined the Bioethics & Medical Jurisprudence programme as part of a cohort, and in some ways this thesis represents a collective effort. My fellow travellers have listened and commented on many aspects of this thesis, which has served to improve it greatly. The friendship of Maria de Jesus Arellano, Paul Snelling and especially Fionnuala Gough, my constant flying companion, has made engagement with the programme much more fun that it otherwise might have been. Finally, but most importantly, I am very thankful for the support and love of Caroline and Rory. They have endured, usually with good humour, my wandering around the house clutching a laptop, reading arcane texts and generally working unsociable hours when I might have been engaged in more family friendly activities. Without them being there to cheer me on none of this would have been possible. This thesis is dedicated to the memory of my mother, Eilis, who taught me to always look on the bright side. 7 THE AUTHOR My background training is in medicine, and prior to taking leave of absence to pursue a PhD, I was working in a children’s hospital in the specialties of paediatric anaesthesia and critical care medicine.
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