Medical Decision-Making on Behalf of Young Children

A Comparative Perspective

Imogen Goold, Cressida Auckland, Jonathan Herring, Imogen Goold, Cressida Auckland, Jonathan Herring

• Publisher: Hart Publishing
• Year: 2020
• Print ISBN: 9781509944545
• eBook ISBN: 9781509928583
• Edition: 1
• Topic: Law
• Subtopic: Comparative Law
• Index: Law

In the wake of the Charlie Gard and Alfie Evans cases, a wide-ranging international conversation was started regarding alternative thresholds for intervention and the different balances that can be made in weighing up the rights and interests of the child, the parent's rights and responsibilities and the role of medical professionals and the courts. This collection provides a comparative perspective on these issues by bringing together analysis from a range of jurisdictions across Europe, North and South America, Africa and Asia. Contextualising the differences and similarities, and drawing out the cultural and social values that inform the approach in different countries, this volume is highly valuable to scholars across jurisdictions, not only to inform their own local debate on how best to navigate such cases, but also to foster inter-jurisdictional debate on the issues. The book brings together commentators from the fields of law, medical ethics, and clinical medicine across the world, actively drawing on the view from the clinic as well as philosophical, legal and sociological perspectives on the crucial question of who should decide about the fate of a child suffering from a serious illness. In doing so, the collection offers comprehensive treatment of the key questions around whether the current best interests approach is still appropriate, and if not, what the alternatives are. It engages head-on with the concerns seen in both the academic and popular literature that there is a need to reconsider the orthodoxy in this area.

1

Introduction

IMOGEN GOOLD, CRESSIDA AUCKLAND AND JONATHAN HERRING

In recent years, a number of cases involving a dispute between parents and doctors over the continued treatment of a seriously ill child have come before the courts of England and Wales. The cases of Charlie Gard, Alfie Evans and Tafida Raqeeb all concerned an application by the treating hospital to confirm the lawfulness of no longer providing life-sustaining treatment to a child, all applications which the parents of the children strongly resisted. In Gard,¹ Charlie’s parents hoped to take him to the United States, where an alternative treating team were willing to trial an extremely experimental treatment which might have, if successful, extended his life and produced some improvement in his condition. In both Evans and Raqeeb meanwhile,² the parents wished to travel to Italy, where in each case, there was a hospital willing to perform a tracheotomy on the child and continue artificial ventilation to extend their life a little longer. Although all parties involved in the cases believed they were doing what was best for the child, agreement could not be reached between the parents and medical professionals. In the face of such disagreement, the English courts were clear that in disputes of this kind, wherever the welfare of a child is affected, they have the authority to make medical decisions on behalf of the child, on the basis of what they consider to be in the child’s best interests.³

The courts’ approach, while highly orthodox from a legal perspective, grabbed the attention of media from across the world, prompting a wide-ranging international conversation about when courts ought to be able to override the wishes of parents, and who should have the final say over a child’s medical treatment. Public feeling ran high at the time of both the Gard and Evans decisions, particularly following the court’s ruling in each case in favour of the medical team’s position. One reason for this was a fundamental disagreement about the authority of the state to intervene in private, family matters, and this was evident not just in England and Wales, but across the globe. Thousands marched in protest at the children’s treatment worldwide,⁴ while high-profile figures such as US President Donald Trump and Pope Francis openly condemned the decisions and offered to assist the parents in securing treatment for the children elsewhere. In Tafida Raqeeb’s case, the court took the view that continued life-sustaining treatment was in her best interests, and she was in fact permitted to be moved to Italy for this to be provided.

One interesting dimension to the international media’s response to the cases was the widespread speculation about whether or not a similar scenario could unfold in other countries.⁵ Much of the commentary, particularly in the United States, showed a propensity to regard the court’s treatment of the children in these cases as peculiarly British. Responses such as that of Father Tad Pacholczyk, Director of Education at the National Catholic Bioethics Center in the United States, were common:

In the US we don’t have the same kind of despotic hospital system that we see in Great Britain. Not only a hospital system, but a judicial system that seems to be weighed in the direction of not allowing parents to make decisions for their own children. … So, this kind of thing, in the US, we don’t see routinely.⁶

The reasons given by commentators for why these cases were unlikely to arise in their respective countries related not only to the difference in legal position (with many speculating that the ‘best interests’ standard did not apply in the same way elsewhere in the world), but also to the United Kingdom’s ‘despotic’ National Health System (as compared with privately funded systems),⁷ its ‘moral decline’⁸ and its lack of religious conviction.⁹ As one US commentator confidently expressed:

We do not yet have cases of children or incompetent adults being captured and detained in hospitals by force of law, and the breath-taking vehemence and sweep of the British court in the case of Alfie Evans is not going to happen here soon, especially in setting out the rights of parties in such cases. We are not there yet. Even with Obamacare, we do not yet have the comprehensive government-controlled medical system that provided the foundation for the decision in Alfie’s case. There is no national legally enforceable standard for the ‘best interests of the child’.¹⁰

Whether any of these factors really do give rise to a difference of approach is open to debate. However, it was speculation of this nature about how such cases might have unfolded in other countries that prompted us to produce this collection. Its purpose is twofold. Firstly, it seeks to examine the legal position of other jurisdictions and to explore whether similar situations have arisen elsewhere and how the courts in other countries have responded to them. Understanding how disputes of this kind play out in other countries is more than simply a question of what the legal position is in that jurisdiction. The likelihood of such a dispute emerging, the prospect of it being litigated and the court’s eventual resolution will all be influenced by numerous factors, and this collection seeks to explore what these are, including how a country’s medical culture, cultural heritage, religious conviction, and understanding of the role of the family and the state may all affect how disputes unfold. The book therefore brings together analyses from a range of jurisdictions across Europe, North and South America, Africa and Asia, in order to produce a volume that not only shows the breadth of approaches to this issue, but contextualises these differences and similarities by drawing out the cultural and social values that inform the approach in different countries.

Secondly, given both the opposition to the current law in England and Wales revealed by the public response to Gard and Evans, and the legislative efforts that have followed them (most notably the campaign for ‘Charlie’s Law’, which would permit the court to intervene in such cases only where the parent’s decision exposes their child to a risk of significant harm¹¹), there is clearly a need to critically appraise the current law. It is hoped that the experiences of other countries will provide a lens through which to evaluate the approach of the English courts, and to inform the UK’s approach to navigating this issue. There remains considerable debate across the globe over how to balance the rights and interests of the child with the responsibilities and authority of the parents; the role of medical professionals in such disputes; and the extent to which it is legitimate for the courts to intervene in private, familial decisions. Through exploring how different jurisdictions strike this balance and what thresholds for intervention they adopt, this collection therefore provides a framework for examining how the law of England and Wales should regulate disputes of this kind. This collection includes chapters from six continents, covering more than twenty-five jurisdictions, and it is hoped that this will be valuable for scholars not only in England, but across jurisdictions, to inform their own local debate on how best to navigate such cases, and to foster interjurisdictional debate on the issues.

¹Great Ormond Street Hospital v Yates and Gard [2017] EWHC 972 (Fam).

²Alder Hey Children’s NHS Foundation Trust v Mr Thomas Evans, Ms Kate James, Alfie Evans (A Child by his Guardian CAFCASS Legal) [2018] EWHC 953 (Fam); Raqeeb v Barts NHS Foundation Trust & Anors [2019] EWHC 2531 (Admin).

³In the matter of Charlie Gard (Permission to Appeal Hearing), Thursday 8 June 2017; Judgment of the UK Supreme Court in the Case of Charlie Gard, 19 June 2017, [13].

⁴R Bishop, ‘Alfie Evans’ Supporters Take to the Streets in Protests Worldwide over Parents’ Wishes Being Rejected by Courts’ Mirror (26 April 2018) www.mirror.co.uk/news/uk-news/people-across-london-northern-ireland-12433984.

⁵See eg S Scutti, ‘Could Charlie Gard’s Case Happen in the United States?’ CNN (6 July 2017) https://edition.cnn.com/2017/07/06/health/charlie-gard-us-laws/index.html; S Scott and R Armitage, ‘Charlie Gard: Could a Personal and Legal Tragedy of a Terminally Ill Baby Happen in Australia?’ ABC News (24 July 2017) www.abc.net.au/news/2017-07-24/could-a-charlie-gard-case-happen-in-australia/8735900; WJ Smith, ‘Charlie Gard Has Happened Here Too’ National Review (4 July 2017) www.nationalreview.com/corner/charlie-gard-has-happened-here-too/.

⁶S Foley, ‘Could an Alfie Evans Case Happen in the US?’ Relevant Radio (26 April 2018) https://relevantradio.com/2018/04/could-an-alfie-evans-case-happen-in-the-united-states/.

⁷ibid.

⁸J Cimmino, ‘Charlie Gard and the Moral Decline of Europe’ National Review (5 July 2017).

⁹D French, ‘Alfie Evans Foreshadows a Dark American Future’ National Review (26 April 2018) www.nationalreview.com/2018/04/alfie-evans-case-americas-future/.

¹⁰T Ascik, ‘Can an Alfie Evans Case Happen in the United States?’ The Imaginative Conservative (17 March 2018) https://theimaginativeconservative.org/2018/05/alfie-evans-case-united-states-thomas-ascik.html.

¹¹The Charlie Gard Foundation, ‘Charlie’s Law’, www.thecharliegardfoundation.org/charlies-law/.

2

Identifying Who and What, then How: Attending to the Role of the Decision-Maker in the Normative Debate about the Best Interests Standard

ROSALIND McDOUGALL

I.Introduction

Amongst countries, diverse approaches exist to the question of when the state should intervene in parental decisions. As the chapters in this collection demonstrate, one aspect of this diversity is the use of different key concepts to justify state intervention.¹ A central point of contention in some countries is the role of the concept of harm, and specifically whether a harm threshold should replace the best interests test as the appropriate approach to court intervention in parents’ medical decision-making for their children. In chapter 9, Francis and colleagues highlight this issue in the US context; in chapter 11, Goold and colleagues evaluate the merits of English courts moving to a harm threshold. In this chapter I explore recent debate about these concepts in the bioethics literature, to provide insights from an ethical perspective for the collection’s exploration of how different jurisdictions approach medical decision-making on behalf of young children.

Across jurisdictions, bioethics writing on conflicts between doctors and parents often implies that there should be the same decision-making standard for courts and clinicians. The recent ethical debate has primarily been framed as ‘best interests standard’ versus ‘harm threshold’, with an underlying assumption that one framework fits all.² In this chapter, I argue that by focusing on the decision-making standard, inadequate ethical ...

Table of contents

• Cover
• Title Page
• Table of Contents
• List of Contributors
• 1. Introduction
• 2. Identifying Who and What, then How: Attending to the Role of the Decision-Maker in the Normative Debate about the Best Interests Standard
• 3. Parental Rights, Best Interests and Significant Harm: Medical Decision-Making on Behalf of Children in Belgium
• 4. ‘Parental Rights’, ‘Best Interests’ and the Withdrawal of Life-Sustaining Medical Treatment of Children in Scotland: A Lack of Authority
• 5. Parental Decisions on their Children’s Medical Treatment in Switzerland
• 6. Medical Decision-Making on Behalf of Minors: The Hong Kong Context
• 7. Medical Decision-Making on Behalf of Children in China: A Multidimensional Analysis of Parental Authoritarianism
• 8. Parental Rights in Mexican Law
• 9. Decision-Making on Behalf of Children in the Research and Clinical Context: A United States Perspective
• 10. Withholding and Withdrawal of Life-Prolonging Treatment from Young Children in Israel
• 11. Medical Decision-Making on Behalf of Children in English and Welsh Law: A Child-Centred Best Interests Approach
• 12. Parental Rights, Best Interests and Significant Harms: Singapore and Malaysia Perspectives on Medical Decision-Making on Behalf of Children
• 13. Decisions about their Body: Children’s Rights and Parental Responsibility in Chile
• 14. Who has the Final Word? On Trust and Legal Uncertainty within the Swedish Healthcare System
• 15. Medical Decision-Making on Behalf of Children in Ireland
• 16. Decisionally Incapable Children and Medical Treatment Choices in Canada
• 17. Offering a Reasonable Future: Withdrawal of Life-Sustaining Treatment from Infants in French Law with Illustrations from a Parisian Neonatal Resuscitation Unit
• 18. Parental Responsibility and Medical Decision-Making in Southern Africa: A Comparative Analysis of South Africa and Botswana
• 19. Young Children and Healthcare Decisions in Spain: Who Decides?
• 20. Who Decides the Best Interests of the Child in the End-of-Life Process? A Look at the Peruvian and Argentine Reality
• 21. Reviewing Medical Decisions Concerning Infants within the Norwegian Healthcare System: A Public Law Approach
• 22. Children and Medical Decision-Making in Australia Post-Gard: A Possible Reformulation
• 23. Parental Authoritarianism and Medical Decision-Making in Thailand: The Need to Limit Parental Authority
• 24. Medical Decision-Making on Behalf of Critically Ill Minors in Greece
• 25. Making Decisions for Children in Healthcare and Medical Research: African Communal Responsibility or Individual Rights?
• 26. The Relevance of Cultural Competence to Resolving Disputes in Relation to Medical Decisions for Children
• 27. Legal and Cultural Differences in Medical Decision-Making on Behalf of Very Young Children
• Index
• Copyright Page