Law, ethics, and emotion: the Charlie Gard case
BMJ 2017; 358 doi: https://doi.org/10.1136/bmj.j3152 (Published 04 July 2017) Cite this as: BMJ 2017;358:j3152
- Clare Dyer, legal correspondent, The BMJ
- claredyer4{at}gmail.com
A 10 month old baby lay in the intensive care unit at London’s Great Ormond Street Children’s Hospital, kept alive by a mechanical ventilator and fed by a tube. Unable to breathe unaided or move his arms and legs, he had epileptic seizures which, because he was unable to move, could be detected only by electroencephalography. His brain had severe damage.
Doctors at the hospital believed they could do no more for Charlie Gard, a baby with an exceptionally rare inherited disease, infantile onset encephalomyopathic mitochondrial DNA depletion syndrome (MDDS). Caused by mutations in a gene called RRM2B inherited from both his parents, the condition leads to severe depletion of mitochondrial DNA in his tissues. The clinicians treating him thought that he was in the final stage of the disease and that they were no longer serving his best interests by keeping him alive.
But Charlie’s parents, Chris Gard and Connie Yates, refused to give up. They found a professor of neurology at a mainstream medical centre in the United States who was willing to give him nucleoside therapy, an experimental treatment that has never been given to a patient with the RRM2B form of MDDS. And they raised more than £1.3m (€1.5m; $1.7m) through crowdfunding to take him there. Some 18 people around the world with a TK2 mutation, a less severe type of MDDS, have had some benefit from nucleoside therapy, but the condition had not affected their brains.
Nucleoside treatment
Back in January, the doctors treating Charlie had considered trying nucleoside treatment themselves and had drafted an ethics committee application. But after Charlie had several seizures, his parents were told that he had severe epileptic encephalopathy and that the treatment would be futile. Cue the start of a legal battle.
All the treating clinicians and the experts who gave evidence in the High Court agreed that the treatment, which cannot reverse existing brain damage, would not benefit Charlie. Even the US professor of neurology, who gave evidence by telephone link, conceded during the court hearing that Charlie was unlikely to benefit from the therapy, given his severe encephalopathy. But he added, “I would just like to offer what we can. It is unlikely to work, but the alternative is that he will pass away.”
Battles between parents and hospitals over children’s treatment are nothing new and hit the headlines regularly. But the fight over Charlie Gard’s treatment is unprecedented, both legally and in its coverage on social media. It has involved seven judges in three courts in the UK and seven more at the European Court of Human Rights in Strasbourg, which agreed that undergoing experimental treatment would “continue to cause Charlie significant harm.”
Keeping Charlie alive
On 11 April the High Court in London ruled that it would be in Charlie’s best interests to come off the ventilator, to have only palliative care, and not to have nucleoside treatment. But the declarations were put on hold through unsuccessful forays to the Court of Appeal, UK Supreme Court, and Strasbourg. The law says that doctors cannot be required to provide treatment that they consider to be against a patient’s best interests. Yet the successive stays have obliged doctors to continue keeping Charlie alive for months on artificial ventilation, against what they believe to be his best interests.
On 19 June, to enable the Strasbourg court to consider the case urgently, the UK Supreme Court extended the stay again “with considerable hesitation” until midnight on 10 July. “We three members of this court find ourselves in a situation which, so far as we can recall, we have never previously experienced,” said the court’s deputy president, Lady Hale. “By granting a stay, even of short duration, we would in some sense be complicit in directing a course of action which is contrary to Charlie’s best interests.”
She added, “Every day since 11 April 2017 the stays have obliged the hospital to take a course which, as is now clear beyond doubt or challenge, is not in the best interests of Charlie. The hospital finds itself in an acutely difficult ethical dilemma.”
Rights to private and family life
The case has challenged the established view that a judge, in weighing up parents’ and doctors’ conflicting views on treatment, must simply decide what is in the child’s best interests. That was the traditional path the case followed in the High Court. But when it went to the Court of Appeal, the parents’ new legal team, led by leading human rights lawyer Richard Gordon QC, mounted a new argument.
He contended that where the parents are proposing a viable treatment elsewhere, the state cannot interfere unless this puts the child at risk of significant harm. Withholding treatment when the parents have a legitimate contrary view favouring an alternative treatment would involve interference by the state with the parents’ right to private and family life “on a massive scale,” he argued. The courts rejected the argument.
During this legal process, Charlie’s doctors have kept on, as they must, keeping him alive, providing treatment that they believe is futile and causing him suffering. During a discussion last month at Serjeants’ Inn Chambers in London, led by several of the barristers in the case David Hicks, interim medical director at the hospital, asked: “Where does this leave the doctors at Great Ormond Street? My colleagues feel in a completely invidious situation. They are now required to provide treatment to a certain date which they do not agree with, while at the same time being told that they can’t be directed to give treatment, according to the law.
“They feel that they are at risk of being reported to their regulator, the General Medical Council, for changing treatment, sustaining treatment, or avoiding treatment ... They’ve experienced delay after delay in being able to do what they feel is the right thing in Charlie’s best interests.”
Parents v doctors: how do the courts decide?
The courts cannot order a doctor to carry out a particular treatment but can declare whether a treatment is lawful and in the child’s best interests, if a dispute arises and one party takes the case to court. The starting point in deciding where the child’s best interests lie is that there is a strong presumption in favour of preserving life. As the Court of Appeal put it in the case of Wyatt v Portsmouth NHS Trust in 2005:
“In our judgment, the intellectual milestones for the judge in a case such as the present are, therefore, simple, although the ultimate decision will frequently be extremely difficult. The judge must decide what is in the child's best interests. In making that decision, the welfare of the child is paramount, and the judge must look at the question from the assumed point of view of the child. There is a strong presumption in favour of a course of action which will prolong life, but that presumption is not irrebuttable. The term ‘best interests’ encompasses medical, emotional, and all other welfare issues.”
The court considers whether a treatment causes or will cause the child pain or suffering and whether the likely benefits outweigh the burdens of having the treatment. In Charlie Gard’s case, the treating doctors believe he is experiencing pain and suffering, which would continue while having nucleoside therapy. When, as in his case, the consensus of all the doctors who have examined him is that the treatment would be futile, there are no benefits to put on the scale.
Footnotes
Competing interests: I have read and understood BMJ policy on declaration of interests and have no relevant interests to declare.
Provenance and peer review: Commissioned; not externally peer reviewed.