Alternative treatment for seriously ill child not in his best interests

7 June 2017 by Rosalind English

Yates and Anor v Great Ormond Street for Children [2017] EWCA Civ 410, 23 May 2017 – read judgment

On Thursday 8 June the Supreme Court will be asked to grant permission to appeal in this case of a seriously ill 9 month old child whose parents wish to take him to the USA for experimental treatment that may slow his deterioration.

The human issues are all over the press – this post will concentrate on the legal arguments in the Courts below, including the very recently published judgment of the Court of Appeal.

Perhaps the most interesting question in this case is not the statutory or human rights background, but the issue of jurisdiction. The court has as part of its inherent jurisdiction to rule on the child’s fate on the basis of his best interests. The appellants were arguing that this was not the test; that the question at the core of the consideration was that of “serious harm”. The parents argue that

the hospital’s application to prevent the delivery of a therapy which it did not, itself, intend to provide, was outside its powers as a public authority, and the court had no jurisdiction to uphold the hospital’s position.

Legal and Factual Background

Charlie Gard is a nine month old baby in intensive care. He suffers from a rare mitochondrial disease which has caused life threatening brain damage. The mutation causes the deterioration and death of fuel-giving mitochondrial cells in every part of the patient’s body, depriving him of the essential energy for living. He is not able to breathe without a ventilator. The condition has also affected his main organs and he is unable to move. Brain scans show no sign of a sleep-wake cycle, a sign of severe brain atrophy.  Although the parents accept that in his current circumstances his quality of life is not sustaining, they have raised funds for treatment in the United States known as “nucleoside therapy”. This is a treatment that has not been clinically trialled or proven in animal tests, but which purports to replace the energy-supplying function of the mitochondrial cells through a form of nutrition. It has achieved a positive outcome for some patients with a different form of the disease than that suffered by Charlie Gard.

In the High Court doctors representing his care team argued that this therapy was not a viable option and therefore would not be in the baby’s best interests. The judge agreed and ordered withdrawal of all treatment except for palliative care.

Before the Court of Appeal, the parents argued that the judge had erred by relying on the “best interests” test alone. They put forward a novel argument based on the case of King (A Child), Re [2014] EWHC 2964 (Fam). This was the “Proton therapy” case which received much media attention when the parents, against a court order, took their child to Spain to receive a specialist form of radiation treatment for cancer. They were pursued by the authorities and arrested. However, having later raised funds to take him for treatment in Prague, there was no more opposition to their actions (the treatment they were seeking was available in the UK, but it was very expensive).

The appellants in this case relied on King to argue that intervention to prevent a parent from pursuing a positive treatment plan for their child should only be permissible where the court was satisfied that the treatment was likely to cause the child “significant harm”. Furthermore, they maintained that the hospital’s application to prevent the delivery of a therapy which it did not, itself, intend to provide, was outside its powers as a public authority, and the court had no jurisdiction to uphold the hospital’s position.

It was also argued on behalf of the parents that the withdrawal of life-sustaining treatment would involve a “massive” impact on their rights to private and family life under Article 8. This right, it was submitted, was at the core of this case, and nothing short of “significant harm” should override the parents’ legitimate choice of treatment.

The Court of Appeal dismissed the parents’ appeal.

Reasoning behind the Court’s decision

This case could be distinguished from King. There, the parents had objected to a proposed course of treatment on the basis that they had a preferred alternative whose efficacy was established. The court was therefore acting within its powers to allow the parents to make their choice. The instant case was different in that the evidence before the court showed that taking the child to the US for nucleoside therapy would provide no benefit and do nothing other than extend his suffering. “Significant harm” does not import a threshold to decisions concerning the medical treatment for children. It is a concept within the criteria of the Children Act 1989 and to the need to establish belief in the likelihood of significant harm before a local authority may bring an application under that jurisdiction. A court can only order that a child be placed in care if it is suffering, or likely to suffer significant harm at the hands of its parents or harm beyond parental control (Section 100). There was no statutory requirement for a hospital to go through the s.100 “hoop”. The sole principle was still the “best interests of the child”.

The court’s task was to determine the child’s best interests without evaluating the reasonableness of the parents’ case, and without introducing any other factor or filter. It had to evaluate the detail of each treatment option from the child’s perspective. A child’s best interests included an expectation that decisions about the length and quality of their life would be taken by the parent entrusted with their care. However, it was ultimately the judge who had to choose the best course.

Nor had the hospital acted outside its powers in bringing an application for a declaration as to its proposed treatment plan. The wider issue of the US therapy had been raised by the parents, not by the hospital. There was no question of the hospital having forced its opinion on the parents and having thereafter sought the sanction of the court. The judge’s order resulted from a child-focused, court-led evaluation of the baby’s best interests. The fact that the merits of the US therapy represented a large part of the evaluation demonstrated that the judge had regarded the parents’ views as an important part of the process.

As to the human rights arguments, McFarlane LJ observed  that the order under challenge resulted from a

100 per cent, child focused, court-led evaluation where the one issue was whether or not the therapy was in the child’s best interests. The fact that as part of that evaluation the court’s evidential focus was largely on the merits of nucleoside therapy, notwithstanding the very clear views of the hospital and the limited benefit Dr I himself was able to identify, demonstrates that the judge regarded the views of Charlie’s parents as an important part of the process upon which he was engaged.

It followed that McFarlane LJ did not consider that the appeals, supported as they were by the human rights arguments, had established any basis for overturning the judge’s decision.

Comment

In the context, the outcome of this appeal and the one to come before the Supreme Court tomorrow is foreseeable. But the question at its core is at what point the law should enter the child/patient relationship. It rightly stays its hand before the foetus is viable. But after that it is at least arguable that more weight should be given to the interests of the parents, particularly where the alternative treatment is viable, even if not available in the UK.

It does not take great creativity to imagine a case where, for example, somatic gene therapy happens to be available in the United States or some other jurisdiction with comparable clinical and ethic standards to this country, which is not available here, and the parents effectively face a court injunction which imposes the clinical view of the domestic medical authorities on the family. In such a case the court’s inherent jurisdiction to consider where the best interests of a child lies might become a more contentious issue.