In the UK, when parents and doctors disagree, courts decide what is in the best interest of a child
English law is based on the concept of parental responsibility, not parental rights
A beautiful boy born 11 months ago is dying in London. The world watches as his parents battle to keep their child alive. Courts will not allow the hospital to release the baby, Charlie Gard, into the parents’ custody so they can travel to try an experimental treatment.
Across the ocean, many people are appalled or confused, and wondering: Could a similar situation happen in the United States?
“It’s an absolutely horrific situation,” said Claire Fenton-Glynn, a legal scholar at the University of Cambridge.
Yet according to some medical ethicists, similar cases happen all the time.
The case of Charlie Gard
Charlie was born with mitochondrial DNA depletion syndrome, a rare condition involving weakened muscles and organ dysfunction, among other symptoms. Because Charlie’s prognosis is so poor, his doctors at Great Ormond Street Hospital in London want to take him off life support. Charlie has no hope of surviving, they say, and he should be allowed to die in dignity.
Charlie’s parents, Chris Gard and Connie Yates, found a doctor in the United States who is offering an experimental treatment. They want the hospital to release their baby so they can take him to the United States.
The battle has gone to the courts.
“How do you decide what is in the best interest of the child? The only way to do that is to gather as much information as possible,” Fenton-Glynn said.
A judge talked to Charlie’s parents and Charlie’s doctors. The American doctor as well as independent experts were consulted. Generally, the courts “followed the same rules that they have always followed in relation to medical treatment for children,” Fenton-Glynn said.
“The parents’ advocate was saying the parents’ choice should be respected unless you can show that their choice would cause the child significant harm,” she said. That argument – despite its appeal to many Americans – fell on deaf ears in the UK, where Charlie’s best interests remained the solo concern.
The judges concluded that the experimental treatment would be “futile,” Fenton-Glynn said. “There’s no evidence that it would provide benefit to the child.”
Courts, including the UK Supreme Court and the European Court of Human Rights in France, agreed with the hospital. The European court ruled June 27 that the hospital could discontinue Charlie’s life support.
Since then, US President Donald Trump and Pope Francis have offered help to Charlie and his parents. A Vatican-owned pediatric hospital in Rome offered to bring the boy into its care. The London hospital told Vatican officials this week that it’s not able to legally transfer the child.
In the United Kingdom, when parents and doctors dispute what is appropriate medical care, “it is up to the court to decide – on a purely objective basis – what is in the best interest of the child,” Fenton-Glynn said.
‘Unlikely’ situation for the United States
Although a Charlie Gard case could happen in the United States, “it seems unlikely,” said Dr. John D. Lantos, director of Bioethics Center at Children’s Mercy Kansas City.
Similar cases in the US, such as Jahi McMath’s, tend to be resolved in favor of parental rights, he explained.
Jahi, a 13-year old-girl, entered Children’s Hospital Oakland in California in 2013 for a routine tonsillectomy. After that surgery, Jahi suffered cardiac arrest and excessive bleeding. She was placed on life support and soon declared legally brain-dead.