The European Court of Human Rights ruled Tuesday a hospital can discontinue life support to a baby suffering from a rare genetic disease.
Born in August, Charlie Gard has a rare genetic disorder known as mitochondrial DNA depletion syndrome. Caused by a genetic mutation, it leads to weakened muscles and organ dysfunction, among other symptoms, with a poor prognosis for most patients.
Charlie is on life support and has been in the intensive care unit at the Great Ormond Street Hospital for Children in London since October. His doctors wish to take him off life support, but his parents disagree.
Charlie’s parents, Chris Gard and Connie Yates, wanted the hospital to release Charlie into their custody so they can take him to the United States for an experimental treatment.
“The domestic courts concluded that it would be lawful for the hospital to withdraw life-sustaining treatment because it was likely that Charlie would suffer significant harm if his present suffering was prolonged without any realistic prospect of improvement and the experimental therapy would be of no effective benefit,” said a press release from the court announcing the decision.
Charlie’s parents appealed to the UK Supreme Court to decide the best interests of their child. After they lost the appeal, the 10-month-old was due to have his life support switched off at the end of the day June 13.
Gard and Yates then filed a request with the European Court of Human Rights, an international court based in Strasbourg, France, to consider the case.
The original ruling to provide life support until June 13 was extended by European Court of Human Rights initially for one week, until June 19. Rather than making a decision then, the court granted a three week-extension, until July 10, to allow for a more informed decision by the court. That extension ended Tuesday with the courts decision.
Disagreements on care
Under British law, parental responsibility includes the right to give consent for medical treatment, according to the British Medical Association.
However, parental rights are not absolute and, in cases in which doctors and parents disagree, the courts may exercise objective judgment in a child’s best interest.
In April, a judge tasked with ruling on the impasse between doctors and parents decided in favor of the Great Ormond Street Hospital doctors. In his decision, Justice Francis said life support treatment should end so Charlie could die with dignity.
The boy’s parents challenged the ruling in May, yet it was upheld by a Court of Appeal. Three Supreme Court justices later dismissed another challenge from the couple.
Since Charlie’s birth, “his condition has deteriorated seriously,” the UK Supreme Court stated in a decision June 8; his brain is severely affected, and “he cannot move his arms or legs or breathe unaided.”
On this basis, the court ruled the child’s life support should be switched off June 13, but the family appealed to the European court.
Charlie’s parents argued the UK courts gave insufficient weight to their own human rights and some of Charlie’s human rights in their decision-making, Wilson said.
After the European court’s ruling to extend the deadline while judges considered the case further, the Supreme Court told doctors it “would not be unlawful” to continue to provide life support.
After the extension, a Supreme Court hearing was requested by the government and the Great Ormond Street Hospital for Children, which did not know whether the Strasbourg court order was legally binding in the UK, Wilson explained.
“There was also a secondary issue, which was that (Great Ormond Street Hospital’s) legal representatives were concerned that, at present, doctors did not have sufficient legal clarity about what they can and can’t do if Charlie’s condition deteriorates,” Wilson said. “So, this court was also invited to consider whether any UK court and, if so, which court should handle that matter.”
Experimental science in US
Charlie’s parents had hoped to take their son to the US where a doctor had agreed to carry out an experimental treatment called nucleoside bypass therapy. As the parents explained in their fundraising efforts, the therapy is an oral medication that provides Charlie with naturally occurring compounds his body is not able to produce. In this way, the medicine might repair Charlie’s flawed mitochondrial genes.
According to bioethicist Julian Savulescu of the Oxford Uehiro Centre for Practical Ethics, the experimental therapy offers a very small chance of some improvement.
In fact, it has never been used to treat this form of mitochondrial DNA depletion syndrome, according to the British ruling, though it has proved beneficial to patients with a different form of the disease.
“We strongly feel, as his parents, that Charlie should get a chance to try these medications,” Gard and Yates wrote on their on their campaign website, Charlie’s Fight. “He literally has nothing to lose but potentially a healthier, happier life to gain.”
Parents are rightly at the “heart” of decisions made about life-sustaining treatment for critically ill children, noted Dominic Wilkinson, director of medical ethics at the Oxford Uehiro Centre.
“However, there are limits,” Wilkinson wrote in a recent editorial about Charlie’s case published in The Lancet, a medical journal. “Sadly, reluctantly, doctors and judges do sometimes conclude – and are justified in concluding – that slim chances of life are not always better than dying.”
Sometimes, the “best that medicine can do” – and the most ethical decision – is to provide comfort and to avoid painful and unhelpful medical treatments, he wrote.
The court said the decision was meticulous, noting they spoke with Charlie’s health care providers, independent experts, experts recommended by the family, and Charlie’s parents to inform the ruling. In the end, the press released said they determined “it was most likely Charlie was being exposed to continued pain, suffering and distress and that undergoing experimental treatment with no prospects of success would offer no benefit and continue to cause him significant harm.”