Judge in Charlie Gard case confirms decision that terminally ill baby should be allowed to die

The decision follows further tests which revealed that the 11-month old was “beyond any help even from experimental treatment” and that it was in his best interest for him to be allowed to die.

The High Court heard that the boy’s parents Connie Yates and Chris Gard no longer opposed the previous declarations made.

Charlie’s best interests

On 11 April 2017, after a hearing which included oral evidence from a number of experts including an expert independently instructed by Charlie’s parents, who agreed with the experts from Great Ormond Street Hospital (GOSH), and having heard evidence from the parents themselves, Mr Justice Francis declared that it was not in Charlie’s best interests for artificial ventilation to continue to be provided to and it was therefore lawful to be withdrawn; it was lawful and in Charlie’s best interests for his treating clinicians to provide him with palliative care only; and that it was lawful and in Charlie’s best interests not to undergo nucleoside therapy.

The judge refused permission to appeal but the Court of Appeal granted permission on two new grounds which had not been argued in the High Court, but then dismissed the appeal and refused permission to appeal to the UK Supreme Court.

The parents appealed to the Supreme Court but their application for permission to appeal was dismissed by the justices, and a further appeal to the European Court of Human Rights was declared inadmissible.

New evidence

But within a few days of the decision of the court in Strasbourg, the parents’ solicitors wrote to GOSH asserting that there was “new evidence” and that there was a “duty” to refer the matter back to the court.

The evidence was that both a children’s hospital in Rome and a medical centre in the USA were willing to accept the transfer of Charlie to undergo treatment.

Dr Michio Hirano from the New York-based medical centre considered that, on the basis of new laboratory findings, the likelihood of a positive effect and benefits to Charlie of the proposed nucleoside therapy to be “markedly improved” compared to the views expressed in court, but the judge noted that in spite of these assertions Dr Hirano had still not seen Charlie and the proposed nucleoside therapy had not even been tried on mice with the same strain of mitochondrial disease from which Charlie suffers, let alone humans.

The letter continued to assert that the best interests assessment and declaration had been “overtaken by events” and were “potentially unsafe” and that the best interests assessment was now weighted significantly in favour of preserving Charlie’s life and providing the therapy.

Second hearing

By application dated 7 July 2017, GOSH asked the court to make orders affirming the declarations made in April, if necessary after hearing further evidence, and the matter came before Mr Justice Francis for a second hearing earlier this month.

Dr Hirano gave evidence to the court via video link and accepted an invitation from the judge to come to the hospital in London to see Charlie.

Mr Justice Francis said: “It seems to me to be a remarkably simple proposition 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. My task has always been to determine what is in Charlie’s best interests, not what benefit there could be to scientific research.

“From the outset of this second hearing, I made it clear that I could only change the decision that I made on 11 April on the basis of compelling new evidence… I also made it clear that I could only consider the case on the basis of evidence and not on the basis of partially informed or ill-informed opinion, however eminent the source of that opinion.

“When I became a judge, I took the same oath that all judges in England and Wales take and I promised to do right to all manner of people after the laws and usages of this Realm…. I have at all times endeavoured to remain faithful to that oath, to apply the law having heard and considered the evidence.”

Consensus

The court heard that Dr Hirano and other eminent practitioners both from GOSH and from around the world attended a multidisciplinary meeting last week and the view was taken that further scans needed to be carried out to establish whether the position that GOSH had maintained for some time was correct.

Further MRI scans were conducted of Charlie’s entire body and it transpired that in some places Charlie now has no muscle at all, and in other places there is significant replacement of muscle by fat.

In a written judgment, Mr Justice Francis said: “The parents have had to face the reality, almost impossible to contemplate; that Charlie is beyond any help even from experimental treatment and that it is in his best interests for him to be allowed to die. Given the consensus that now exists between parents, the treating doctors and even Dr Hirano, it is my very sad duty to confirm the declarations that I made in April this year, and I now formally do so. I do not make a mandatory order.”

The court thanked the medical experts who gave evidence and the staff at Great Ormond Street, who had worked tirelessly since last October to treat Charlie.

He also thanked the lawyers involved in the case, particularly those who worked with Charlie’s parents because they had given their services for free.

Mr Justice Francis also said it was his duty to comment on the “absurd notion” that Charlie was a prisoner of the National Health Service or that the NHS had the power to decide his fate.

“This is the antithesis of the truth,” he said, adding: “In this country children have rights independent of their parents. Almost all of the time parents make decisions about what is in the best interests of their children and so it should be. Just occasionally, however, there will be circumstances such as here where a hospital and parents are unable to decide what is in the best interests of a child who is a patient at that hospital. It is precisely because the hospital does not have power in respect of that child that this hospital makes an application to the court, to an independent judge, for a determination of what is in that child’s best interests.”

Finally, the judge mentioned the subject of mediation, saying that cases such as this should be subject to compulsory court led dispute resolution hearings, just as family cases in England are.