Jo Bridgeman

Caring for children with severe disabilities: boundaried and relational rights

This chapter focuses on the recent European Convention on Human Rights (ECHR) judgment in the case of Glass v UK , a landmark decision for the impact of Article 8 of the European Convention on Human Rights and Fundamental Freedoms on healthcare law demonstrating the importance of rights in the protection of this particularly vulnerable group of children. The authors concern in the chapter is the care of children with severe disabilities. Assessment of the best interests of the child remains a central determining principle in decisions about the treatment, non-treatment and withdrawal of treatment from children with severe disabilities. A relational concept of rights would embrace the realities of caring for children with severe disabilities and a wider range of factors relevant to their best interests. Keywords: children with severe disabilities; European Convention on Human Rights (ECHR); healthcare law

A response to 'Death and best interests'

In his article, ‘Death and best interests’, Baines advances two, related, propositions regarding the application of the best interests principle to decisions about the withdrawal of aggressive medical treatment from a critically-ill child in circumstances where the child would die shortly afterwards. First, that ‘there is no objective best interests test’ and, secondly, that best interests is not a coherent test by which to determine whether aggressive treatment should be withdrawn from a critically-ill child who would, as a consequence, die immediately afterwards. I will respond to each in turn. As a legal academic, not a medical practitioner or philosopher, my primary resource for analysis of these issues is the case law which establish the legal principles according to which decisions must be made on the wards, by parents with the support of health-care practitioners. I should, therefore, note that there are limited examples in the case law of treatment decisions concerning critically-ill children and even fewer examples concerning the withdrawal of aggressive treatment from critically-ill children. As Holman J noted in the concluding paragraph of the case referred to by Baines, An NHS Trust v MB, these cases are ‘fact specific decision[s] taken in the actual circumstances as they are for [the] child and today’. While decisions reached by the judges in the cases are particular to their facts, these cases offer the legal principles and framework for decision-making, which more usually occurs on the hospital wards. In most of the reported cases, NHS Trusts (on behalf of the treating doctors) seek a declaration of the court as to whether it is in the best interests of the child to withhold aggressive treatment in the event of the child suffering a critical episode or their condition deteriorating. Withdrawal of treatment from a critically-ill child was the issue before the court in each of the cases of C (a Baby), C (a minor) (medical treatment), the recent case which is the focus of the piece, An NHS Trust v MB, and the subsequent case of K (a minor). An NHS Trust v MB was the first occasion upon which the court had been asked to ‘approve that, against the will of the child’s parents, life support may be withdrawn or discontinued, with the predictable, inevitable and immediate death of a conscious child with sensory awareness and assumed normal cognition and no reliable evidence of any significant brain damage.’ As discussed later, the applicable legal principles, which are the same whether it is proposed to withdraw or withhold life-prolonging treatment, are those recently outlined by Hedley J and approved by Wall LJ in consideration of the treatment of Charlotte Wyatt. However, as these cases are fact-sensitive, it is those where withdrawal of treatment is proposed which provide more closely approximating examples by which to guide parents in their decision-making in accordance with the principles and framework established by the courts.

The Child’s Body

Our own experiences as children and our current relationships with children may appear to render theorizing about the child unnecessary. Childhood appears a natural and normal period through which we all pass in preparation for adulthood. In common sense understandings what identifies the child is physical and mental immaturity which gradually develops with the transition from newborn, to infant, toddler, child and adolescent. At any and all stages, the child is understood in relation to and in contrast with the adult: the child stands as ‘other’ to the adult norm. The adult is mature, rational and competent; the child immature, irrational and incompetent.

Editorial: Critically ill children and best interests

The law is clear as to whose responsibility it is to make decisions about the medical treatment of young children and the legal principles according to which those decisions are to be made. A small body of case law concerning decisions with respect to the provision, withholding and withdrawal of medical treatment have established the legal principles that are applied every day in decisionmaking about children’s health care across a range of treatments on hospital wards. As is well known, treatment decisions are made by the person(s) with parental responsibility, in the majority of cases the child’s parent(s), supported by the health-care team or, in the event that the treating doctors disagree with the parent’s decision, by a judge. The principle for determination is the best interests of the child which, as Waite LJ acknowledged in Re T, ‘is easily stated and universally applauded’ but, his Lordship acknowledged, ‘the present case illustrates, poignantly and dramatically, the difficulties that are encountered when trying to put it into practice’. In that case, the Court of Appeal were asked to determine whether a liver transplant operation was in the best interests of an 18-month-old child, C, who had been born with a liver defect (biliary atresia) for which he had previously, and unsuccessfully, undergone surgery. His parents had refused consent to the transplant operation believing that it was not in his best interests. The medical view was that C required a liver transplant if he was to live more than six months or a year and hence that it was in his best interests although medical opinion was divided as to whether they would perform the surgery against the wishes of the child’s parents. In their instructive and significant study of parents who had had to make a decision about the withdrawal of medical treatment from their child, Hazel McHaffie et al. identified ‘the critical issue’ to be the need for parents ‘to be personally persuaded that [withdrawal of treatment] is the best for their child’ in order that the decision reached was one that they could live with. Parents in the study accepted that there were limits to medical intervention:

A Woman’s Right to Choose?

The aim of this chapter is to look forward, 30 years after the Abortion Act 1967 became law, to identify the lessons which can be learnt for future abortion campaigning by looking back at the experiences of those 30 years. The discourse on abortion which has caught the public imagination in this time is the claim of ‘A Woman’s Right to Choose’: the slogan adopted by the women’s movement in the 1970s in campaigns seeking to defend existing abortion provision.1 This chapter considers the use of this slogan as an expression of ‘what women need’ and its place in a strategy for abortion campaigning into the next millennium.

A threshold of significant harm (F)or a viable alternative therapeutic option

This article critically examines the legal arguments presented on behalf of Charlie Gard’s parents, Connie Yates and Chris Gard, based on a threshold test of significant harm for intervention into the decisions made jointly by holders of parental responsibility. It argues that the legal basis of the argument, from the case of Ashya King, was tenuous. It sought to introduce different categories of cases concerning children’s medical treatment when, despite the inevitable factual distinctions between individual cases, the duty of the judge in all cases to determine the best interests of the child is firmly established by the case law. It argues that the focus should not have been on a threshold for intervention but on whether his parents had established that the therapy they wanted was a viable alternative therapeutic option. In the April hearing, Charlie’s parents relied on the offer of treatment from a US doctor; by July they had an independent panel of international experts supporting their case although by this time the medical evidence was that it was too late for Charlie. One of Charlie’s legacies for future disputes may be that his case highlighted the need for evidence as to whether the treatment parents want for their child is a viable alternative therapeutic option before a court can determine which therapeutic option is in the best interests of the child.

The provision of healthcare to young and dependent children: the principles, concepts and utility of the Children Act 1989

This article undertakes a thorough analysis of the case law concerned with the provision of healthcare to young and dependent children. It demonstrates how, despite the procedural changes introduced by the Children Act 1989 at an early stage in this body of case law, cases have continued to be brought to court by way of applications for the court to exercise its inherent jurisdiction or in wardship rather than using the orders introduced by the Act. In determining these cases, the court is focused upon its protective duty to the vulnerable but proceedings appear to be adversarial contests between the claims of adults to know what is best for the child in which the medical view normally prevails. Through consideration of the principles and concepts of the Children Act of parental responsibility, working together, the welfare principle and placing the child at the centre of care, this article demonstrates their utility, as yet to be fully realised, in relation to the responsibilities of parents, professionals, public authorities, and the courts concerned with the provision of healthcare to young and dependent children.

‘The right to responsible parents? Making decisions about the healthcare of young and dependent children'

This chapter explores Michael Freeman’s significant contribution to medical law and, specifically, to analysis of the legal regulation of healthcare decision-making on behalf of young and dependent children. Michael argued, in his commentary upon the earliest examples of the case law in this area, that important decisions about the healthcare of children must be subjected to principled, independent review. I examine the extent to which this has been achieved in recent cases. I then reflect upon the argument that Michael has made, that children have the right to responsible parents, in order to ask what, in the context of decisions about the health of children, it might mean to ‘act in a parentally responsible manner’.

Misunderstanding, threats, and fear, of the law in conflicts over children’s healthcare: in the matter of Ashya King [2014] EWHC 2964

This commentary critically examines the role of the law in the conflict over the post-operative care of five-year-old Ashya King. It argues that misunderstanding, threats, and fear of the law contributed to the deteriorating relationship between his parents and the professionals caring for him. The commentary analyses the judgment, in wardship proceedings, of Baker J arguing that too much weight was placed upon the responsibilities of Ashyas parents and an insufficient account provided of his best interests or of the principled basis for preferring innovative and, as yet, unproven therapy only available, privately funded, abroad to conventional treatment for a child with a life-threatening condition.