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Medical Futility in Paediatrics: Interdisciplinary and International Perspectives
Edited by Kartina A. Choong
ISBN 978-615-81353-0-6 Paperback, €48.00
eISBN 978-615-81353-1-3 Hardcover, €131.00
Volume 3 (August 2019)
This book addresses the issues and challenges raised by the high-profile cases of Charlie Gard and Alfie Evans. The individual chapters, which complement one other, were 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 following are among the key questions explored in the book. Is the courtroom an appropriate forum for resolving conflicts relating to medical futility in paediatrics? If so, should parental rights be protected by confining judicial powers only to cases where there is a risk of significant harm to the infant; or should the “best interests” test continue to be recognised as the “gold standard” for paediatric cases? If not, should mediation be used instead, but how well would this alternative method of dispute resolution work for medical futility conflicts? Further, should social media be deployed to garner support, and should outsiders who are not fully acquainted with the medical facts refrain from intervening? And, how are comparable situations likely to be managed in different countries? What lessons can be learned from them as well as from religious perspectives?
You can download some of the contents of this book in open access.
TABLE OF CONTENTS
Foreword by Michael Redfern QC
Notes on Contributors
Charlie Gard and Alfie Evans: Their Medico-Legal Journeys
Author(s): Kartina A. Choong
PART I. ISSUES AND CHALLENGES
CHAPTER 1. The Vexed Question of Best Interests in Decisions Relating to Infants and Medical Futility
Author(s): Jo SamantaAbstract:
Intractable disputes between doctors and parents relating to seriously ill infants are neither new, nor unusual. These tragic situations are invariably played out in very public arenas with potential repercussions for all parties concerned. The decision making standard employed by the courts is that of best interests, as objectively assessed by the court and taking all relevant matters into consideration. This chapter provides an examination and critique of the evolution of the best interests test when used in this area. It ends with a brief consideration of the possible role of mediation as a vehicle for alternative dispute resolution.
CHAPTER 2. Best Interests: The “Gold Standard” or a Gold Plating? Should Significant Harm be a Threshold Criterion in Paediatric Cases?
Author(s): William SeagrimAbstract:
As a yardstick in paediatric cases, best interests is branded the ‘gold standard’. Some commentators suggest that it insufficiently protects parents from state intervention, calling for an enabling significant harm threshold. In this chapter, I argue that such submissions are devoid of any legal basis and that, in any event, their undergirding justifications are misconceived. Inter alia, I suggest that comparisons to public children law are erroneous and that significant harm proponents overlook routine state interference with parental responsibility. I also argue that the consequences of a threshold are illogical and the gold standard’s detractors miscategorise as weakness its most precious attribute.
CHAPTER 3. Charlie’s Law: Clarifying the Legal Standard to be Used in Medical Decision-Making for Children
Author(s): Sarah SargentAbstract:
The case of Charlie Gard highlights an area of law which is in critical need of reform and clarification: which legal standard should be applied in medical decision-making situations for children, when there is an effort to override the wishes of the parents. Charlie’s Law would make clear the threshold is that of “significant harm” and not of “best interests,” ensuring more protection for parental wishes and reducing needless interference, amounting to an exercise of arbitrary paternalism, from medical treaters and courts. This chapter explores the significance and benefits of clearly establishing the “significant harm” threshold.
CHAPTER 4. Media Framing of “Medical Futility”: Flaming the Debate?
Author(s): Kim McGuireAbstract:
The cases of Charlie Gard and Alfie Evans in the UK have made public the difficult nature of “medical futility” cases. The media has undoubtedly played a significant role in this global dissemination. This chapter discusses interpretations of the media role, as both ‘negative’ and ‘positive.’ Arguably, for the families, media reporting enabled widening access to avenues of support. For the medical professionals it brought abuse and declining trust, partly due to partisan and limited access to information, and an emphasis upon emotive story telling. How these conflicting viewpoints can be ‘mediated’ and ‘moderated’ in the future will be discussed.
CHAPTER 5. Resource-intense Treatments in a Resource-finite Environment
Author(s): Richard Wai Ming LawAbstract:
Resource-intense medical treatments place significant financial burdens on healthcare systems especially in the provision of life sustaining care to critically unwell patients. Although decisions on whether to continue life sustaining treatments are typically based on medical need and likely clinical benefit, discussions on available resources and how they are best allocated remain relevant to healthcare professionals. The legal cases of Charlie Gard and Alfie Evans provide an important backdrop to the discourse on resource allocation. Both have successfully utilised medical crowdfunding to raise significant funds of their treatments. This chapter discusses the clinical and legal implications of limited resources and the nature of the impact that medical crowdfunding exerts on resource allocation.
CHAPTER 6. Citizenship at the Discretion of the State: Public Law Issues Regarding Evans’ Naturalisation
Author(s): Alejandra BotoAbstract:
On 24 April 2018 it was announced that Alfie Evans was granted Italian citizenship despite the absence of any Italian lineage. The decision seemed to be based on Article 9.2 of Italian Act number 91, 1992 which allows the conferral of citizenship by a discretionary governmental decision provided there is a special interest of the State. This chapter takes a close look at this provision, known as the privilege of naturalisation, focusing on public law issues such as equity and judicial review, offering also a comparative analysis.
CHAPTER 7. Contested Paediatric Palliative Care: A Church of England Perspective
Author(s): Brendan McCarthyAbstract:
Determining the best interests of children in the context of potentially futile medical intervention is highly complex and must be approached in a fully transparent manner, consistent with other areas of care. The Church of England views medical ethics through the prism of four cascading principles: affirmation of life, care of the vulnerable, creation of a caring and cohesive society, and respect for individuals. Human life is valued not only instrumentally and individualistically, but also inclusively and intrinsically. This does not make decision-making easier, but it does provide a principled, consistent guide for those entrusted with end of life care.
CHAPTER 8. The Dynamics of Clinical Judgment, Religious Conventions and Parental Responsibilities: An Islamic Perspective
Author(s): Mahmood Chandia, Abdulla al-ShamiAbstract:
This chapter aims to look at the debate from an Islamic legal (fiqh) perspective and present how Muslim parents could ensure that their attempt to discharge parental responsibility can become compatible with religious instruction, in a context where the value base to evaluate medical futility (i.e. to continue medical treatment or not), is determined by medics and the state, rather than any religious underpinning. To this end, this chapter aims to discuss the Islamic theory and practice on this subject: (1) What is the scope of parental rights and responsibilities in Islam (i.e. theory)?; and (2) How would Islamic fiqh (or legal formulations) guide parental thinking in such situations (i.e. practice)?
CHAPTER 9. Do Parents Have a Right to Determine Where a Child Patient Dies?
Author(s): Lisa CherkasskyAbstract:
This chapter will explore whether parents have the legal right to take their gravely ill child home to die in peace surrounded by family. Public anger surrounding the recent cases of Charlie Gard and Alfie Evans suggests that it is morally wrong to deprive parents of this final wish when medical treatment is futile and travel abroad for treatment has been ruled out. The judgments of Judge Francis (Gard) and Lady Justice King (Re C) will be examined to reveal the legal avenues available to parents of gravely ill children and whether their final wish to take their child home should be afforded more weight in futile cases.
PART II. INTERNATIONAL PERSPECTIVES
CHAPTER 10. Serving the Child’s “Best Interests” in Australia
Author(s): Roslyn JonesAbstract:
Australia joined with the rest of the world in observing and commenting on the controversial debate over the fate of Charlie Gard and Alfie Evans. How Australia may have responded given similar scenarios will be explored in a number of ways. These will include considering our existing legislation, summarising the case law of comparable matters and analysing these cases in terms of issues of quality of life, professional obligations, parental versus state control and the use or misuse of media and social media in these situations.
CHAPTER 11. Medical Futility in Czech Paediatrics: At the Edge of Law, Bioethics, and Medicine
Author(s): Helena KrejčíkováAbstract:
In the Czech Republic, public debates regarding end-of-life decisions have only recently started. With no explicit legislative recognition of medical futility, clinical practice relies predominantly on a vague statutory definition of proper care and two non-binding guidelines, aimed however at adult patients. The situation in paediatrics is further complicated by the complex and often ambiguous legal regulation related to the process of decision making. In her contribution, the author introduces the Czech legal framework and clinical practice, including a new document prepared by the Paediatric Palliative Care Working Group on providing life-sustaining care, which would apply in cases similar to those of Charlie Gard and Alfie Evans.
CHAPTER 12. The Application of End-of-Life Legislation to Minors in France
Author(s): Stephanie Rohlfing-DijouxAbstract:
This chapter explores how French Law would deal with legal problems relating to minors with incurable illnesses. In particular, the rules relating to therapeutic obstinacy, advanced directives and person of confidence would be examined. The question of how to conciliate the country’s special end-of-life legislation with the legal provisions concerning minors in family law and child protection law will be analysed, as will the fundamental rules on collective decision-making procedure in end-of-life situations.
CHAPTER 13. Patient Autonomy and Best Interests in End-of-Life Cases: A German Perspective
Author(s): Peter ElsnerAbstract:
The right to life is entrenched in the German Constitution mandating the state to abstain from unlawful incursions into human rights and to actively protect the enjoyment of human rights. Patient autonomy is derived from these basic rights. Maintaining or terminating medical support measures in end-of-life situation requires the patient’s consent which in minors may have to be decided by the courts based on the presumed will of the patient. Family values will have to be taken into account in establishing the presumed will of a child.
CHAPTER 14. Gard and Evans: A Reflection on What Might Happen in India
Author(s): Abhay Vaidya, Sourabhi SahakariAbstract:
Although Charlie Gard and Alfie Evans were treated in public hospitals where the costs of treatment were borne by the UK’s National Health Service (NHS), the management decisions were not influenced by cost implications, and health professionals acted in their patients’ best interests. By contrast, in a developing country such as India, very few government-funded hospitals match the resources of the NHS. Private healthcare is expensive, and socio-economic, cultural, religious, political and legal issues influence the treatment decisions. In this chapter, the authors analyse why the NHS is unique compared to developing countries such as India.
CHAPTER 15. Medical Futility and Parental Paternalism in Turkey
Author(s): Banu Buruk, Berna ArdaAbstract:
The concept of futility is mainly dependent on the following question: “who will describe which treatment is futile and which is not?” Problem arises when the physician’s authority and the parents’ autonomy stand opposite to each other. There are several unique reasons for such disagreements in communitarian “we societies” like Turkey: relatives’ paternalistic attitude, the social environment, lack of medical information, the effect of the internet, and certain national daily news. Decision-making is also affected by cultural interactions, and of course the urgency of the medical condition of the child.
CHAPTER 16. If We Can, Must We? Just Whose Best Interests Are We Talking About? Perspectives from the USA
Author(s): Vincent F. MaherAbstract:
The recent and tragic cases of Charlie Gard and Alfie Evans, each in the UK, and Jahi McMath in the USA, are proof positive that decisions made by individual clinicians or by teams in conference rooms or even in directives issued from the Court are neither immutable nor unchangeable. This chapter examines conflicts between clinicians and families, the role of social media and of the courts and concludes with recommendations about how to proceed in future similar cases.
Kartina A. Choong
Kartina A. Choong is a Reader in Medical Law and Ethics at the University of Central Lancashire, having previously held academic appointments at the Universities of Durham, Reading and Leeds Metropolitan. She obtained her Law degree from the University of Cardiff before qualifying as a Barrister (Honourable Society of Lincoln’s Inn, London). She holds Masters degrees in Healthcare Ethics and Applied Social Research from the University of Manchester, and in Islamic Studies from the University of Leeds. Her PhD in Medical Law was awarded by the University of Manchester. Her main areas of research interests, on which she has published widely, include medical futility, religiously- and culturally-sensitive end-of-life care, palliative care, medical mediation, professional liability, access to health records, consent and confidentiality. She is an Accredited Mediator and a Fellow of the UK Higher Education Academy.
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