Gard and Yates v GOSH, the Guardian and the UK: reflections on the legal process and the legal principles

In this commentary I examine the litigation over the medical treatment of Charlie Gard from the High Court in April 2017 to the European Court of Human Rights and back to the High Court in July 2017. As is usual in cases of conflict between parents and clinicians over a child’s medical treatment, referred to court for determination, at the heart of the dispute were sincerely and strongly held differences of opinion as to what was best for Charlie. The process of trying to convince Charlie’s parents of the futility of their hope was prolonged by the legal process as the case proceeded through the appeal stages with the view of the treating clinicians agreed by the judge prevailing each time. In the July hearing, after the appeal process had been exhausted, Francis J made great efforts to resolve the dispute and mediate the conflict, whilst retaining judicial authority, but by this time the relationship between the parents and hospital was irretrievably broken. The protracted legal process was traumatic for Charlie’s parents, stressful for Charlie’s clinicians and nurses and required the judiciary to authorise his continued ventilation when it had been concluded that this was contrary to Charlie’s best interests. I argue that this case demonstrates clearer than any before that a comprehensive review is required of the principles and processes applicable to disputes over children’s medical treatment

Innovative therapy and the law: the novel issues raised by the case of Charlie Gard

The application by Great Ormond Street Hospital to court in respect of the future medical treatment of Charlie Gard was novel in that the Trust sought not only a declaration that it was lawful and in Charlie’s best interests to withdraw ventilation but further that it was not in Charlie’s best interests to be administered with an innovative therapy which had the effect of preventing a doctor in another hospital from administering it to him. It is not uncommon for parents to seek for novel, innovative, pioneering, or experimental treatment to be given to a seriously ill child although, to date, there have been few cases on this issue before the courts. Whilst parents are given a large degree of freedom to raise their children as they consider appropriate, limits have to be imposed upon what parents can demand their children are subjected to. All courts, from the Family Division of the High Court through the domestic appeal courts to the European Court of Human Rights and back to the Family Division of the High Court, affirmed the application of the best interests principle in such cases. In this article it is argued that the law should set those limits not merely according to the best interests of the individual child but also by whether the therapy is supported by a reasonable and competent body of professional opinion and in accordance with good medical practice

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 upon 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 upon a threshold for intervention but upon whether his parents had established that the therapy they wanted was a viable alternative therapeutic option. In the April hearing, Charlie’s parents relied upon 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

Children’s medical treatment decision-making: reform or review?

This article considers proposals to reform the law in response to recent high profile cases concerning the medical treatment of children, currently before Parliament in the Access to Palliative Care and Treatment of Children Bill 2019–21. It considers the proposed procedural change, to introduce a requirement for mediation before court proceedings, and argues that dispute resolution processes should be a matter of good practice rather than enshrined in law. It argues that the proposed substantive change to determination of best interests would not result in different outcomes because the best interests analysis co-exist with the legal and professional duties of doctors to children in their care. It argues that if there is to be reform of the law it needs to follow from a comprehensive review of all the issues in which the minimum standards imposed by law fit together with good practice standards and not in response to individual cases

'Leaving no stone unturned': contesting the medical care of a seriously ill child

Recent cases concerning disagreements over the medical treatment of a child with cancer prompt consideration of the effectiveness of the courts in the resolution of conflict over the best interests of a seriously ill child. With reference to studies of parents whose child has received treatment for cancer, this article explores parental experiences of the increased vulnerability and dependency of their child, intensification of the parenting role, loss of control and dependency upon healthcare professionals. With a lengthy treatment plan delivered by a multi-disciplinary team causing serious and distressing side-effects in the effort to save life, parental concerns can arise about their child’s care from which disputes over treatment develop. In their endeavours to secure the very best treatment for their child, ‘leaving no stone unturned’, parents may reject the advice of the treating team. This article examines recent cases concerned with the treatment of a child for cancer within the context of the wider body of case law in which a dispute has developed from a disagreement between parents and professionals over the medical treatment of a young and dependent child. It argues that if parents, determined to secure what they consider to be best for their child, cannot agree with the treating team they are unlikely to be persuaded that the judge knows what is best for their child and resist the imposition of the decision of the court. In such circumstances, court intervention may protect doctors from legal action but not protect the best interests of the child. It is argued that rather than emphasise, as the current legal framework does, the need for court orders in cases of disagreement, emphasis should be placed upon the legal duties of professionals to work together with parents to secure the best interests of the child and the responsibilities of the Trust to support both in this endeavour taking all possible steps to attempt to resolve the disagreement without the need for court intervention

Beyond best interests: a question of professional conscience?

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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

Our legal responsibility … to intervene on behalf of the child’: recognising public responsibilities for the medical treatment of children

This article argues for recognition of public responsibilities to protect the welfare of children with respect to decisions affecting their health and medical treatment. As the quote in the title of this article, from David Plank, the Director of Social Services responsible for bringing the case of Baby Alexandra before the courts, identifies, early cases concerning children’s medical treatment were brought by local authorities to determine responsibilities to protect the welfare of children. In cases such as Re B (1981), Re J (1990) and Re W (1992), the court was asked not only to determine the child’s best interests but also to clarify the duties of the local authority, Trust, court and child’s parents to the child. The respective duties established apply to all involved in cases brought before the courts on the question of a child’s future medical treatment, whether or not the child is in the care of the state. Recent cases concerning the medical treatment of seriously ill children have involved claims of parental authority to determine the care of their child. To the contrary, this article argues that court involvement is required when parents are disagreed with the child’s treating doctors over the child’s medical treatment because of public as well as parental and professional responsibilities for the welfare of all children

Vaccine-elicited human T cells recognizing conserved protein regions inhibit HIV-1

Virus diversity and escape from immune responses are the biggest challenges to the development of an effective vaccine against HIV-1. We hypothesized that T-cell vaccines targeting the most conserved regions of the HIV-1 proteome, which are common to most variants and bear fitness costs when mutated, will generate effectors that efficiently recognize and kill virus-infected cells early enough after transmission to potentially impact on HIV-1 replication and will do so more efficiently than whole protein-based T-cell vaccines. Here, we describe the first-ever administration of conserved immunogen vaccines vectored using prime-boost regimens of DNA, simian adenovirus and modified vaccinia virus Ankara to uninfected UK volunteers. The vaccine induced high levels of effector T cells that recognized virus-infected autologous CD4+ cells and inhibited HIV-1 replication by up to 5.79 log10. The virus inhibition was mediated by both Gag- and Pol- specific effector CD8+ T cells targeting epitopes that are typically subdominant in natural infection. These results provide proof of concept for using a vaccine to target T cells at conserved epitopes, showing that these T cells can control HIV-1 replication in vitro

Reconciling autonomy and beneficence in treatment decision-making for animal patients

This article explores how the concept of consent to medical treatment applies in the veterinary context, and aims to evaluate normative justifications for owner consent to treatment of animal patients. We trace the evolution of the test for valid consent in human health decision-making, against a backdrop of increased recognition of the importance of patient rights and a gradual judicial espousal of a doctrine of informed consent grounded in a particular understanding of autonomy. We argue that, notwithstanding the adoption of a similar discourse of informed consent in professional veterinary codes, notions of autonomy and informed consent are not easily transferrable to the veterinary medicine context, given inter alia the tripartite relationship between veterinary professional, owner and animal patient. We suggest that a more appropriate, albeit inexact, analogy may be drawn with paediatric practice which is premised on a similarly tripartite relationship and where decisions must be reached in the best interests of the child. However, acknowledging the legal status of animals as property and how consent to veterinary treatment is predicated on the animal owner’s willingness and ability to pay, we propose that the appropriate response is for veterinary professionals generally to accept the client’s choice, provided this is informed. Yet such client autonomy must be limited where animal welfare concerns exist, so that beneficence continues to play an important role in the veterinary context. We suggest that this ‘middle road’ should be reflected in professional veterinary guidance