TABLE OF CONTENTS Foreword by Michael Redfern QC i Preface iii Notes on Contributors vii Introduction Charlie Gard and Alfie Evans: Their Medico-Legal Journeys 2 Kartina A. Choong Part I: Issues and Challenges 1. The Vexed Question of Best Interests in Decisions Relating to Infants and Medical Futility 27 Jo Samanta 2. Best Interests: The “Gold Standard” or a Gold Plating? Should Significant Harm be a Threshold Criterion in Paediatric Cases? 51 William Seagrim 3. Charlie’s Law: Clarifying the Legal Standard to be Used in Medical Decision-Making for Children 78 Sarah Sargent 4. Media Framing of “Medical Futility”: Flaming the Debate? 95 Kim McGuire 5. Resource-intense Treatments in a Resource-finite Environment 116 Richard Wai Ming Law 6. Citizenship at the Discretion of the State: Public Law Issues Regarding Evans’ Naturalisation 143 Alejandra Boto 7. Contested Paediatric Palliative Care: A Church of England Perspective 163 Brendan McCarthy 8. The Dynamics of Clinical Judgment, Religious Conventions and Parental Responsibilities: An Islamic Perspective 176 Mahmood Chandia, Abdulla al-Shami 9. Do Parents Have a Right to Determine Where a Child Patient Dies? 189 Lisa Cherkassky Part II: International Perspectives 10. Serving the Child’s “Best Interests” in Australia 209 Roslyn Jones 11. Medical Futility in Czech Paediatrics: At the Edge of Law, Bioethics, and Medicine 233 Helena Krejčíková 12. The Application of End-of-Life Legislation to Minors in France 250 Stephanie Rohlfing-Dijoux 13. Patient Autonomy and Best Interests in End-of-Life Cases: A German Perspective 261 Peter Elsner 14. Gard and Evans: A Reflection on What Might Happen in India 270 Abhay Vaidya, Sourabhi Sahakari 15. Medical Futility and Parental Paternalism in Turkey 297 Banu Buruk, Berna Arda 16. If We Can, Must We? Just Whose Best Interests Are We Talking About? Perspectives from the USA 314 Vincent F. Maher Foreword This book addresses the disparate issues relating to the futility of further medical treatment on the one hand, and the treatment prefer- ences identified by the families which doctors regard as having no ther- apeutic benefit. These issues present legal, medical, moral, ethical, and social problems. The editor and authors seek to analyse the interests of the parties including outcomes in comparative legal systems against the yardstick of early alternative dispute resolution as opposed to protract- ed litigation. The cases of Charlie Gard and Alfie Evans in the UK and Jahi McMath in the USA raise critical issues. Each case was subjected to the full might, majesty, dominion, and power of the legal system in the UK, Europe, and the USA respectively. In the Charlie Gard and Alfie Evans cases, proceedings were commenced in the High Court, there was an appeal to the Court of Appeal, a further appeal to the Supreme Court, and finally a hearing in the European Court of Human Rights. In the case of Alfie Evans, this legal procedure was repeated more than once. Each step along the way was poured over by the media and the press. There was an absence of privacy for the families. The stories attracted worldwide public interest. The extensive publicity could hard- ly be said to be in the best interests of the children involved. This factor alone can lead to a breakdown of trust between the parties. The process throughout was adversarial, time consuming, and hugely expensive. The NHS’ costs were in excess of £420,000. NHS funding requires reallocation of scarce resources to legal action which otherwise would have funded medical care. Legal Aid is a similarly scarce resource and not readily available. Disparity in funding can also exacerbate mistrust between the parties. Families might have recourse to crowdfunding involving the promulgation of an appealing story in order to stimulate the funding of litigation. On this issue alone there is a balance to be struck between the best interests of the child and the significant harm argument. Fami- ly privacy is invaded by media and press attention. This invasion of Foreword by Michael Redfern QC privacy occurs at a time when privacy is vital in safeguarding the best interests of the children and their families. There is much to commend the ability of hospitals and doctors on the one hand and families on the other to mediate prior to recourse to litigation. Mediation can draw on the work of medical ethics commit- tees, legal, moral, social, and medical bodies in an effort to mediate and resolve the priorities of all the parties concerned in early course. This is infinitely preferable in most situations. Prolonged adversarial litigation is a huge burden and a source of ever-increasing levels of stress during the currency of the proceedings at a time when the converse should prevail. Recourse to protracted litigation should be a matter of last re- sort. There must be the highest standard of medical diagnosis identify- ing medical futility and a fully reasoned response to what might be re- garded as useless treatment. On the other hand, the realistic needs of families must be identified without their distress being fuelled by media frenzy and crowdfunding of legal costs. For this reason, although the recent changes introduced by the Mental Capacity (Amendments) Act 2019 may not be directly relevant for present purposes, the initiative to ascertain the wishes and feelings of patients who lack capacity signifies a positive attempt to improve family participation in decision-making about care and treatment whilst ensuring that those patients’ welfare remains the core concern. Enhanced collaboration between families and healthcare professionals can minimise the risk of protracted legal disputes. This wind of change has considerable application in paediatric care. The ability to resolve life’s most difficult and sensitive medical treatment of children requires the utmost care and consideration. This book confirms that there is a lot to be said for transforming lives to- gether when considering resource intensive treatment in a resource finite environment. Michael Redfern QC ii Preface The cases of Charlie Gard and Alfie Evans were among the most high-profile doctors-parents disputes in England and Wales in recent times. They were contested throughout the entire hierarchy of the domestic court system, and beyond, to the European Court of Human Rights. Appeal after appeal failed to reverse the respective court of first instance’s declarations that the continuation of ventilatory support and life-sustaining treatment were not in the infants’ best interests. Still, what is particularly noteworthy about the two cases is not just the debates that took place in the courtrooms. Few medical law cases have attracted as much global attention and even interventions from well- meaning individuals and institutions unconnected to the two infants. This book explores the issues and challenges posed by these and similar cases, both inside and outside the courtroom. It also examines how other jurisdictions would deal with comparable situations. The book consists of 17 chapters, written by scholars with expertise in law, medicine, medical ethics, theology, health policy and management, English literature, nursing, and history, from the UK, Australia, Canada, the Czech Republic, France, Germany, India, Spain, Turkey, and the USA. The introductory chapter sets the context for the book by documenting the chronology of medical events relating to the two infants, as accompanied by the legal arguments which were fielded and debated during their protracted courtroom battles. The subsequent 16 chapters are organised into 2 Parts. Part I takes an interdisciplinary look at the wide range of issues raised in the two cases, as well as medical futility in paediatrics generally. Part II sheds light on how these situations are likely to be managed in other jurisdictions. Part I begins with an important reminder from Jo Samanta that intractable disputes between doctors and parents relating to seriously ill infants are neither new, nor unusual. Her chapter examines the evolution of the best interests test when used in this area, and considers the possible role of mediation as a vehicle for alternative dispute Preface resolution. William Seagrim’s chapter defends the continued usage of the best interests test which, as a yardstick in paediatric cases, has been labelled the “gold standard.” He points out that although some commentators have suggested that it insufficiently protects parents from state intervention and have called instead for an enabling “significant harm” threshold, such submissions are devoid of any legal basis. The following chapter by Sarah Sargent offers a contrasting viewpoint. In her discussion of Charlie’s Law, she explores the significance and benefits of clearly establishing the “significant harm” threshold to ensure more protection for parental wishes and to reduce needless interference from healthcare professionals and the courts. Looking next at the role of the media in making public the difficult nature of medical futility cases, Kim McGuire discusses interpretations of the media role, as both “positive” and “negative.” Whilst for the families, media reporting widened access to avenues of support; for healthcare professionals, it brought abuse and declining trust. This chapter concludes by considering mediation as a means for expressing and resolving conflicting viewpoints outside the media gaze. Richard Law then identifies the extent to which resource-intense medical treatments place significant financial burdens on healthcare systems especially in the provision of life-sustaining care to critically unwell patients. His chapter analyses the clinical and legal implications of limited resources and the nature of the impact that medical crowdfunding exerts on resource allocation. The ensuing chapter by Alejandra Boto focuses on the reported conferral of Italian citizenship to Alfie Evans despite the apparent absence of an Italian lineage. Approaching the issue from a public law perspective, she discusses Italy’s legal provisions relating to the conferral of citizenship to foreign nationals and provides a comparative analysis with Spain.