Great Ormond Street Hospital v Yates  EWHC 1909 (Fam) (24 July 2017)
In a high-profile dispute between the parents of a terminally ill child and doctors at the Great Ormond Street Hospital over the child’s course of treatment, the UK High Court found that the best interests of the child require that he not be given experimental medical treatment and instead be taken off life support.
Charlie Gard was born with an extremely rare medical condition called mitochondrial DNA depletion syndrome (MDDS). The condition caused severe physical and cognitive debilitation. As a result, Charlie suffered from congenital deafness, severe epilepsy, and could not move his arms or legs or breathe without the assistance of a ventilator. Charlie’s parents and doctors agreed that his prognosis was so dire that life support should be withdrawn unless treatment were available.
Before Charlie's life support was withdrawn, Charlie’s parents became aware of an experimental treatment, called “nucleoside treatment”. Nucleoside treatment had been successfully used to alleviate the condition of those suffering from a different, less severe form of MDDS which only affects the muscles. However, Charlie’s condition also affected his brain, and at this stage nucleoside treatment had not yet been tested on laboratory animals suffering from Charlie’s form of MDDS, let alone humans. There was no evidence to suggest that nucleoside treatment would have any effect on Charlie’s condition. And if it did, the treatment would not be able to cure Charlie’s condition, only halt any further muscle or cognitive debilitation.
Despite the limited prospects of success, Charlie’s parents had been in correspondence with a doctor in the US, Dr Hirano, who suggested that nucleoside treatment was of possible benefit to Charlie’s condition and that it was reasonable to attempt the treatment given Charlie’s dire prognosis.
Before a decision could be made about whether to proceed with the treatment, Charlie suffered a series of severe seizures and his cognitive condition seriously deteriorated. His doctors at the hospital agreed that as a result of the brain damage that Charlie had suffered, nucleoside treatment was almost entirely futile. Although it was unclear whether Charlie could feel pain, the medical team believed that the possibility of prolonged suffering outweighed the miniscule chance of benefit from the treatment. Charlie’s medical team advocated for him to be withdrawn from life support and allowed to “die with dignity”.
Charlie’s parents did not believe that Charlie’s condition was as extreme as his doctors maintained, and were of the view that he should be offered nucleoside treatment. Charlie’s mother was adamant that Charlie had a clear sleep/wake cycle, contrary to the opinion of his doctors, and cited this as evidence that Charlie’s cognitive deterioration was not so far advanced that treatment would be of no benefit.
Since Charlie’s parents and the hospital were at odds as to Charlie's treatment and care, the hospital referred the matter to the UK High Court.
Great Ormond Street Hospital v Yates is the final decision in a series of litigation in UK courts, and the European Court of Human Rights, concerning Charlie Gard and the dispute between the clinicians at Royal Ormond Street Hospital and Charlie’s parents as to what treatment and care was in Charlie’s best interests. At every stage, the courts agreed with the hospital that the withdrawal of treatment was in Charlie’s best interests.
Under UK law parents with parental responsibility have the power to give consent for their child to undergo medical treatment if their child lacks the capacity to consent. This is the same under Australian law. However, a court has the power to override parental consent in the exercise of its independent and objective judgment in the child’s best interests.
At first instance, Justice Francis of the High Court held that although there is a strong presumption that a child’s best interests require the preservation of life, it was rebutted in Charlie’s case: the medical consensus was that Charlie’s quality of life was not one that should be sustained without hope of improvement. Justice Francis found in favour of the hospital, observing that there was a consensus from all of the consultants and doctors who had examined Charlie that nucleoside treatment was futile, and that it would not be in Charlie’s best interests to receive such treatment.
Charlie’s parents appealed Justice Francis’ decision to the Court of Appeal on the basis that he had erred in relying on the “best interests” test alone, and in not considering whether there was a risk of significant harm. The Court of Appeal upheld the decision of Justice Francis and in doing so, rejected the notion that the High Court may only interfere with a parent’s choice of medical treatment if the child is likely to suffer harm as a result. Further, the court affirmed that when considering a child’s best interests, the court’s perspective is independent from that of the parents. The court held that to proceed with nucleoside treatment would expose Charlie to the possibility of continued pain, suffering and distress for only a negligible prospect of benefit.
Consequently, Charlie’s parents sought permission to appeal this decision to the Supreme Court. This time Charlie’s parents emphasised their parental rights under Article 8 of the Convention, arguing that they may only be interfered with if there were to be a risk of “significant harm” to the child. The Supreme Court rejected their application, emphasising that the welfare of the child is to be the paramount consideration. The court then observed that even if the “best interests” test was replaced by the test for “significant harm”, Charlie Gard would likely suffer harm if his suffering were prolonged.
On appeal to the European Court of Human Rights, the parents argued that the decisions of the lower courts violated the rights to life, liberty and respect for private and family life under the European Convention on Human Rights. The court dismissed the appeal, noting that individual states are granted a degree of latitude in their response to sensitive moral and ethical issues, such as whether to offer highly experimental medical treatment. The court noted that its role is merely to examine whether the decision was made “in accordance with the law” and with respect to a legitimate aim under the Convention.
In this final decision, the hospital sought an order affirming the declarations made by Justice Francis at first instance. Justice Francis reheard the matter and, since no “compelling new evidence” was available, reaffirmed his original declarations that it was in Charlie’s best interests for artificial ventilation to be withdrawn and palliative care provided.
Decisions about the withdrawal of life-sustaining treatment are some of the most controversial decisions made in the health care context. The case of Charlie Gard received significant international attention, even eliciting comments from the Pope and the United States’ President Donald Trump. The case raised important questions about the scope of parental responsibility. Namely, whether parents have a right to make medical decisions for their seriously ill children, the extent to which parental autonomy trumps clinical perspectives about the futility of treatment, and the extent that courts are willing to intrude upon parental responsibility.
In Australia, as in the UK, disputes between parents and doctors over the medical care of children are rare. When they do occur, the legal principles applicable are identical to those applicable in the UK: both the common law and statutory regime dictate that courts are the final decision makers with respect to the course of treatment which should be administered and, when exercising this power, the paramount consideration is the child in question’s best interests.
Although the UK courts never explicitly referred to the rights of Charlie Gard, in his first judgment Justice Francis noted that the term “best interests” is used in its widest sense, balancing all considerations that are relevant to the welfare of a child, whether medical, social or emotional. In addition, both the High Court and Court of Appeal accepted that under the common law test there is a strong presumption in favour of a course of treatment that prolongs life, which in effect serves a crucial protective function in relation to a child’s right to life.
Furthermore, the decision illustrates that the rights of the child to the enjoyment of family life may have a role in the court’s determination of best interests. Although the test of best interests is objective, and independent from the views of parents, Justice Francis noted that the views of parents may be of relevance where they provide insight into the “value to the child of the child/parent relationship”. Therefore, although the courts are not directly required to take into consideration the rights of the child, those rights will necessarily be of relevance to the question of a child’s best interests.
The final decision by Justice Francis of the UK High Court can be found here.
The decision by the European Court of Human Rights can be found here.
Kevin Cui is a General Member of the Melbourne University Law Review.