Charlie Gard case decided on basis of evidence, not social media opinions, says judge
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US doctor gave evidence without examining Charlie and had a commercial interest in the proposed treatment, hospital says
The Charlie Gard decision could only be reached on the basis of medical evidence, not opinions expressed on social media, the judge in charge of the case said in his final ruling.
Mr Justice Francis first heard the case in April. He ruled then that the terminally ill 11-month-old baby, who has been on life support at Great Ormond Street Hospital for most of his short life, should be given palliative care only and allowed to die with dignity. This was in the child’s “best interests”, he said.
The decision was upheld by the Court of Appeal and by the Supreme Court. The European Court of Human Rights also found no criticism of the law or of the overall court process, praising the UK courts' "meticulous" approach.
Last week Francis J agreed to consider the case one last time after lawyers for Charlie’s parents submitted an application to set aside the original ruling. New evidence, they said, had since come to light of potentially beneficial treatment, which made the findings unsafe.
In a ruling yesterday in which he acknowledged the intense pressure that had built up around the case, Francis J said that throughout the proceedings he had remained faithful to the oath he had taken as a judge “to apply the law having heard and considered the evidence”.
Examining the short chronology of the case, which saw US president Donald Trump, the Pope, and prime minister Theresa May proffer their views, he said: “The world of social media doubtless has very many benefits but one of its pitfalls, I suggest, is that when cases such as this go viral, the watching world feels entitled to express opinions, whether or not they are evidence-based.”
One piece of evidence especially focused most of the attention. During the first set of proceedings, a US doctor said he would be prepared to provide nucleoside therapy. The treatment has been described as “pioneering” by supporters and merely as “experimental” by those less convinced. The treatment has not been tested on humans or even mice.
Dr Hirano had not seen Charlie when he first made the offer. He only travelled to London to examine Charlie when Francis J invited him to do so two weeks ago, following a videolink evidence session.
“It seems to me to be a remarkably simple proposition,” Francis J said, “that if a doctor is to give evidence to this court about the prospect of effective treatment in respect of a child whose future is being considered by the court, that Dr should see the patient before the court can sensibly rely upon his evidence.”
Nucleoside treatment considered
Charlie has been on artificial ventilation, nutrition, and hydration since birth and MRI scans conducted on his entire body two weeks ago showed that he had no muscle at all in places, and in others, that muscle had been replaced by fat.
Great Ormond Street Hospital considered nucleoside therapy at an earlier stage and applied for fast-track authorisation to use the drug despite the lack of testing. Before it could be granted, however, Charlie’s condition suddenly deteriorated to such an extent that doctors then no longer believed the treatment would result in any noticeable improvement and that it would be “futile”.
In a statement, the hospital said Charlie’s parents had been led to believe there would be a cure for Charlie’s condition. From the start, the prognosis for Charlie was “known to be bleak”, they said, but they nevertheless contacted experts around the world, including Dr Hirano to explore the possibility of experimental treatment. They stressed that the treatment had only had some success in children suffering from a different condition.
Professor Hirano, they noted, had not responded to an open invitation to examine Charlie until last week but merely provided written evidence to the British courts. He was also a co-signatory of the letter claiming new evidence was available.
It was “with increasing surprise and disappointment” that the hospital listened to the professor’s fresh evidence, the statement said. “Not only had he not visited the hospital to examine Charlie but in addition, he had not read Charlie’s contemporaneous medical records or viewed Charlie’s brain imaging or read all of the second opinions about Charlie’s condition, or even read the judge’s decision made on 11 April.”
There was further concern, the hospital said, that Hirano said “for the first time, whilst in the witness box, that he retains a financial interest in some of the NBT compounds he proposed prescribing for Charlie”.
Information provided by Hirano, they said, “gives no cause for optimism. Rather, it confirms that whilst NBT may well assist others in the future, it cannot and could not have assisted Charlie.”
Best interests
In a succinct ruling, Francis J also commented on several issues raised in the case, not least the “serious threats and abuse” aimed at some Great Ormond Street Hospital staff. It was “a disgrace”, he said, that doctors and nurses dedicated to the treatment of desperately sick children “should have been subjected to any form of abuse whatsoever and it is to be condemned”.
He also dismissed the suggestion that Charlie had been prevented from flying to the US by the NHS. It was his “duty,” he said, “to comment briefly on the absurd notion that appeared in recent days that Charlie has been a prisoner of the national Health Service or that the National Health Service has the power to decide Charlie’s fate”.
While parents made decisions on behalf of children most of the time, children have independent rights. In cases such as these, where neither the hospital nor the parents were unable to decide what is in the best interests of a child, doctors would apply to the court for the decision to be made by an independent judge. The child would also be represented separately and a guardian appointed to represent his interests, as was the case with Charlie.
The decision, he continued, would be made by reference to the child’s best interests, and the doctors’ application to the court had been “guided by that simple proposition”. In a final rebuke to “the many commentators who wish to opine on this case”, he pointed to the detailed reasoning in his April ruling that set out the issues and the legal principles that applied to the case.
In concluding remarks the judge commented – once again – that legal aid ought to be available to parents in such cases, as it is in care cases involving local authorities. Mediation, he also said, should be attempted too, even if the outcome is merely achieving “a greater understanding by the parties’ of each other’s position”.
Jean-Yves Gilg, editor-in-chief