Legal battle on doctors’ decision to switch off life support for sick child

In my autobiography, appropriately called “Nothing but the Truth,” I praised Britain for its commitment to individual freedom and its love for children and animals, views formulated when I stayed in the country from 1955 to 1960 to obtain my Fellowship in Surgery. Though some of the values have eroded over the years, these two qualities have endured.

To illustrate their penchant for individual freedom, I described my visit to  Hyde-Park to watch soap-box oratory. I saw a sizeable crowd there listening to a speaker, who was making disparaging remarks about Churchill. Offended by his comments against a distinguished war hero, I asked a policeman standing nearby. “Isn’t it time, you told the chap to shut up?”

“My job sir,” replied the police-man, adjusting his helmet, “is to see that you don’t disturb him!”

Last summer, while Marie and I were in the UK, I saw another example of this individual freedom and children’s right and since it involved an ill baby, I was highly interested in the matter. Information about the G20 meeting being held in Hamburg, held at the time was hogging the TV screen but images of Charlie Gard, an eleven month old baby with his life support and his distressed parents at Great Ormond Street Hospital (Gosh) for children in London, was constantly flashing on the screen.

Gosh was opened in 1852 with just ten beds and like Gertrude Garden Hospital in Nairobi, was the first hospital in the country to offer dedicated service to children only. Since then it has expanded beyond all recognition and has become a world leader in management of children’s illnesses. In 2004, it built a Patient Hotel to accommodate families of children admitted, a unique facility. 

Charlie was born on the 4th August 2016 with ‘mitochondrial deficiency syndrome’.

Mitochondrium is an essential part of every cell in our body, necessary for all activities and its deficiency leads to brain damage, causing unconsciousness and severe damage to muscles.  Charlie was admitted to Great Ormond Street Hospital in October, soon moved into ICU, put on a respirator because he could not breathe on his own and on life support. After a few months of this miserable existence and no hope of recovery, the doctors at the hospital decided to switch the life support off. All hell broke loose and the parents of Charlie took the matter to court because they believed that experimental nucleoside therapy in USA could help their son. The doctors argued that the treatment was experimental and Charlie’s mitochondrial deficiency would not benefit by this therapy and wanted Charlie to be allowed to die with dignity and not suffer any more pain. This became a tug of war between Charlie’s parents and the doctors. The parents insisted that Charlie was not in any pain and wondered why decision about their son was taken out of their hands and handed over to the doctors and courts. The social media went viral on the case and the whole drama was played in public, with the press and electronic media taking an active role. Many people on the other hand condemned the media’s involvement.

Connie and Chris, Charlie’s parents who lived at the hospital did two more things to promote their son’s cause. On 25th April, they contacted their MP, Ruth Cadbury who in turn begged the Secretary for Justice to intervene. The matter was brought up on prime-minister’s question time on a Wednesday and Theresa May commented. “No doctor wants to be in the terrible position where they have to make such heart-breaking decisions. I am confident that Gosh has and always will consider any offers or new information that has come forward with consideration of the wellbeing of a desperately ill child.” The parents appealed for funds and more than three million pounds was collected.

Charlie’s case successively went to high court, Court of Appeal, Supreme Court and finally to the European Court of Human Rights, where the judges unanimously gave judgment in favour of the doctors.

THE VERDICT

The verdict was given on 27th June. Everyone thought that the fight was over, the doctors prepared to switch the life support off.

The parents wanted their son to die at home. In the meantime, both Pope and President Trump offered the parents to take Charlie to Rome and USA respectively for free treatment and added their weight to the global support for Charlie’s case.

Critics wondered if they had studied the medical details or the legal rulings.

Then like a thunderbolt, on Saturday, the 8th of July, seven specialists in the USA announced that the experimental nucleoside treatment had made dramatic improvement in children, who had disease similar to Charlie’s. On hearing this new evidence, in all fairness, the medical team referred the matter to the High Court to reconsider it and give fresh judgment, despite their strong belief that this was not new evidence and Charlie would not derive any benefit.  They still believed that Charlie had catastrophic and irreversible brain damage and the experimental treatment would not only prove futile but prolong Charlie’s suffering. In contrast, Connie and Chris were not relenting and emboldened by this announcement they collected 350,000 signatures to save their son’s life and presented the petition to Gosh. As the petition was being presented, the mother came on TV and referring to her son’s case asked. “Suicide is illegal. Euthanasia is illegal. How can this be legal?”

In the meantime Breakfast Club, a programme I watch every day interviewed Prof Wilkinson, professor of Medical Ethics in Oxford live on BBC and he said. “It is important that as professionals we listen to parents despite the fact that they are reflecting their hopes and their wishes rather than the reality.”

When the case returned to High Court, it returned to the desk of Justice Francis, one of the three judges, who had previously ruled in favour of the hospital. Charlie’s lawyer asked the judge to withdraw but he refused and remarked, referring to tweets made by the Pope and Trump, “I will not base my judgment on tweets but on solid evidence and I want the parents to provide it soon.” During the hearing there was an altercation between the parents and the doctors who in their submission said that Charlie was in pain and they wanted to end it by withdrawing life support. Connie and Chris shouted, “When will you stop telling lies? Charlie is not in pain.” To muddy the waters further, a doctor in USA sent a video to the court when it met to assess the new evidence, saying that he had now understood how nucleoside therapy could help Charlie, who according to him had ten per cent chance of improvement with it. The medical team asserted that Charlie’s skull was not growing because his brain had suffered irreversible damage and was not developing. The parents  claimed that they were measuring it with a tape measure and it was growing. Justice Francis wanted the doctor in USA to fly to London and be joined by the doctor from Rome, Pope’s nominee, both to examine Charlie and jointly decide if nucleoside therapy would help him. He also ordered an impartial agency to measure Charlie’s skull and scan his brain.

Accordingly, Dr Michio Hirano, a neuroscientist from Columbia University medical centre in New-York flew into London on Sunday, 16th July and with the doctor from Bambino Hospital in Rome examined Charlie on Monday for five hours. The Gosh clinicians cooperated with them and showed them Charlie’s latest brain scans, with Charlie’s mother keeping a watching brief.

The transcript of their meeting was sent to Judge Francis. He decided to hear the case on Monday, the 24th July and give his judgment on the following day.

I was naturally eager to hear the court judgment. Instead, Charlie’s lawyer declared in court on Monday that his parents had given up the fight and had decided to withdraw the case. It was believed that Dr Hirano on examining Charlie and the brain scan said that time had run out for Charlie and he would not derive any benefit from the experimental nucleoside therapy. Justice Francis condemned the media, especially social media where people, who knew nothing registered their comments.  The parents made a very moving statement outside the court in front of the press gallery: “It is the hardest decision to let our son go and be with the angels. Mummy and Daddy love you. We are so sorry that we couldn’t save you. Charlie will not see his first birthday which falls on 4th August. His body, heart and soul may soon be gone but his spirit will live till eternity.”

The final battle hinged on whether Charlie would die at home, after the parents had precious last days with him and the doctors who claimed that there were practical difficulties in doing what the parents wished.

Judge Francis did not want to get involved further in this sensitive decision and asked the parties to find a compromise, which they did. It was decided that Charlie should be moved to hospice, where the life support could be switched off after a few hours.

For obvious reasons, all the dates in connection with procedure were kept secret.