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Trump and Pope Weigh In on Case of U.K. Child on Life Support Trump and Pope Weigh In on Case of U.K. Child on Life Support
(about 5 hours later)
LONDON — Charlie Gard, who turns 11 months old on Tuesday, was born with an extremely rare genetic disease. He is blind and deaf, and he cannot breathe or move on his own. LONDON — Charlie Gard, who turns 11 months old on Tuesday, was born with an extremely rare genetic disease. He is blind and deaf, and he cannot breathe or move on his own. He suffers from persistent epileptic seizures.
The London hospital that is treating Charlie went to court to request permission to remove him from life support; his parents want to take him to the United States, where they believe that an experimental treatment has a chance — however remote — of saving his life. Now he is at the center of a global debate, drawing in the Vatican and President Trump, over what medical treatment, if any, he is entitled to receive, and who decides — his family, his doctors or the courts.
Three courts in Britain agreed with the hospital, as did the European Court of Human Rights, which last week rejected a request by the parents to hear the case, in which they had argued that the hospital was violating the boy’s right to life. “These terrible decisions have to be made all the time,” said Jonathan D. Moreno, a professor of ethics at the University of Pennsylvania. “It is very unusual for a case like this to explode on the global stage. They raise difficult moral and ethical questions.”
Pope Francis and President Trump have now also weighed in, adding another dimension to an extraordinarily difficult bioethical and legal matter that pits Britain’s medical and judicial establishment against the wishes of the child’s parents. The London hospital that is treating Charlie has asked permission to remove him from life support. His parents want to take him to the United States, where they believe an experimental treatment has a chance — however remote — of prolonging his life, even though the disease has no cure.
A Vatican spokesman, Greg Burke, told Vatican Radio on Sunday that the pope had been following the parents’ case “with affection and sadness” and praying “that their desire to accompany and care for their own child to the end is not ignored.” Three courts in Britain agreed with the hospital, as did the European Court of Human Rights, which last week rejected a last-ditch appeal by Charlie’s parents.
Mr. Trump, who was not known to have expressed a view on the matter previously, wrote on Twitter on Monday that if the United States could help, “we would be delighted to do so.” But Pope Francis and Mr. Trump have also weighed in, adding another dimension to an extraordinarily thorny bioethical and legal dispute that pits Britain’s medical and judicial establishment against the wishes of the child’s parents.
Both the pope and the president stopped short of criticizing the court rulings or the hospital. It was not clear if the views of the parents — who in recent days appeared to have accepted the finality of the decision — had changed in light of the new remarks. Judges in the case have acknowledged that the case highlights differences in law and medicine — and an American willingness to try anything, however unlikely the possibility of success — but have held that prolonging the infant’s life would be inhumane and unreasonable. The case echoes the one of Terri Schiavo, a Florida woman who was left in a persistent vegetative state after a cardiac arrest and was also the subject of a court battle.
Charlie was born on Aug. 4, 2016, with encephalomyopathic mitochondrial DNA depletion syndrome. He is thought to be one of only 16 children globally with the condition. A Vatican spokesman, Greg Burke, told Vatican Radio on Sunday that the pope had been following the parents’ case “with affection and sadness,” praying “that their desire to accompany and care for their own child to the end is not ignored.”
His parents, Connie Yates and Chris Gard, both in their 30s, have been waging a long and emotionally wrenching legal battle to keep him alive, and they have raised more than 1.3 million pounds, or about $1.7 million, to help finance experimental treatment in the United States. Mr. Trump, who was not known to have previously expressed a view on the matter, wrote on Twitter on Monday that if the United States could help, “we would be delighted to do so.”
Charlie has been treated at Great Ormond Street Hospital since October. The hospital said that it was acting in the child’s best interests. “When parents do not agree about a child’s future treatment, it is standard legal process to ask the courts to make a decision,” it said in a statement. Both the pope and the president stopped short of criticizing the court rulings or the hospital. Helen Aguirre Ferré, the director of the White House office of media affairs, said Mr. Trump had decided to speak out after he learned about “this heartbreaking situation.” Mr. Trump has not spoken with the family, she said, and does not want “to pressure them in any way.”
Three courts — the High Court on April 11, the Court of Appeal on May 25 and the Supreme Court of the United Kingdom on June 8 — sided with the hospital. The High Court ruled that Charlie would face significant harm if his suffering were to be prolonged without any realistic prospect of improvement. Moreover, it said the experimental therapy would not be effective. The British appellate courts agreed. “The president is just trying to be helpful if at all possible,” she added.
At that point, Charlie’s parents took the case to the European Court of Human Rights in Strasbourg, France, citing the European Convention on Human Rights, which protects the right to life, and arguing that the hospital was blocking access to life-sustaining treatment in the United States. Charlie was born on Aug. 4, 2016, with encephalomyopathic mitochondrial DNA depletion syndrome. He is thought to be one of only 16 children globally with the condition, the result of a genetic mutation.
The European court ruled that the British courts had taken under consideration the views of Charlie’s parents and of medical experts, and had concluded that “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.” Brendan Lee, the chairman of the department of molecular and human genetics at Baylor College of Medicine, who is not involved the case, said in a phone interview that mitochondrial depletion syndrome has no cure. “Treatments involve different types of vitamin supplementation, but none have been shown to definitively work through studies,” he said.
In some respects, the case recalls that of Terri Schiavo, a Florida woman who was left in a persistent vegetative state after a cardiac arrest. Her husband, who was her legal guardian, sought to have her feeding tube removed, but her parents disagreed, setting off a seven-year fight that ended in 2005 after courts ruled in the husband’s favor and life support was removed from Ms. Schiavo, 41. Charlie’s parents, Connie Yates and Chris Gard, both in their 30s, have been waging a long and wrenching legal battle to keep him alive. They have raised more than 1.3 million pounds, or about $1.7 million, to help finance experimental treatment in the United States. There is also an international campaign, with an online petition and there have been street protests in front of Buckingham Palace.
In that case, too, the pope (John Paul II) and the president (George W. Bush) weighed in — Mr. Bush signed an act of Congress allowing federal courts to intercede in the case — but their interventions did not affect the outcome. Charlie has been treated since October at Great Ormond Street Hospital, where doctors eventually decided that withdrawing life support was the only justifiable option. “Although Charlie’s parents have parental responsibility, overriding control is by law vested in the court exercising its independent and objective judgment in the child’s best interests,” the hospital said in a statement laying out its position.
For Charlie and his family, the decision by the European court appears to have brought an arduous legal journey to an end, though an international campaign has been waged, with an online petition and even street protests in front of Buckingham Palace, pleading with the authorities to reconsider. Siding with the hospital were the High Court, on April 11; the Court of Appeal, on May 25; and the Supreme Court of the United Kingdom, on June 8.
The hospital has not indicated when it would cut off life support. The High Court ruled that Charlie would face significant harm if his suffering were to be prolonged without any realistic prospect of improvement. Moreover, it said the experimental treatment, known as nucleoside therapy, would not be effective.
“Our thoughts are with Charlie’s parents on receipt of this news, which we know will be very distressing for them,” it said, adding that the court’s decision “marks the end of what has been a very difficult process.” It added, “There will be no rush by Great Ormond Street Hospital to change Charlie’s care, and any future treatment plans will involve careful planning and discussion.” Money is not at issue; an academic medical center in the United States has offered to provide the experimental treatment. But a neurologist at the hospital, who has offered to oversee the treatment, told the court by telephone: “I can understand the opinion that he is so severely affected by encephalopathy that any attempt at therapy would be futile. I agree that it is very unlikely that he will improve with that therapy.”
In a detailed statement laying out the ethical and medical justification for not allowing Charlie to travel to the United States, the hospital said there was no cure for his condition. It said it had concluded that the experimental treatment in the United States would “not improve Charlie’s quality of life.” Neither the hospital nor the neurologist was identified in court documents, and the White House has declined to identify either.
“One of the factors that influenced this decision was that Charlie’s brain was shown to be extensively damaged at a cellular level,” it said. “The clinician in the U.S. who is offering the treatment agrees that the experimental treatment will not reverse the brain damage that has already occurred.” The Court of Human Rights ruled last week that the British courts had acted appropriately in concluding that “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.”
Speaking to British journalists on Friday — before the pope and Mr. Trump weighed in — Ms. Yates said the family was making its final preparations. The case has drawn attention to important differences in legal systems.
“We are really grateful for all the support from the public at this extremely difficult time,” she said. “We’re making precious memories that we can treasure forever with very heavy hearts. Please respect our privacy while we prepare to say the final goodbye to our son Charlie.” Claire Fenton-Glynn, a legal scholar at the University of Cambridge who studies children’s rights, said that under British law, the courts were the final arbiter in medical disputes about the treatment of children.
She noted a 2001 case of conjoined twins, Jodie and Mary, who were born sharing an aorta. Separating the twins would lead to the death of the weaker twin; if they were not separated, both would die. A court ruled that the twins should be separated against the wishes of their parents; as expected, one died.
Courts in the United States are less inclined to get involved when there are disputes between parents and doctors, said Professor Moreno of the University of Pennsylvania, stressing that it was usually left to doctors, in consultation with parents, to decide on a child’s treatment.
He noted the case of Baby Jane Doe, who was born in 1983 with spina bifida and whose parents declined to approve surgery to prolong her life. That case led to a law, signed by President Ronald Reagan, that defined instances in which withholding medical treatment from infants could be considered child abuse, but also provided that in certain cases doctors and parents might choose to withhold treatment from seriously handicapped babies when such action would merely prolong dying.
G. Kevin Donovan, the director of the Pellegrino Center for Clinic Bioethics at Georgetown University Medical Center and a professor of pediatrics, said that in the United States, if parents insisted on continuing life-prolonging treatment against a doctor’s advice, the child would simply be transferred to another institution willing to comply with the parents’ wishes.
“It doesn’t seem to be a supportable position morally or ethically,” he said of the stance taken by the hospital in London, adding that what is legal and what is ethical are not always the same.
In the Schiavo case, her husband, who was her legal guardian, wanted to have her feeding tube removed, but her parents disagreed, setting off a seven-year fight that ended in 2005, after courts ruled in the husband’s favor. Life support was removed from Ms. Schiavo, who died at 41.
In that case, too, the pope, then John Paul II, and the president, George W. Bush, weighed in. Mr. Bush signed an act of Congress allowing federal courts to intercede in the case. But their interventions did not ultimately affect the outcome.
There was no immediate response to Mr. Trump’s statement from Charlie’s parents, who last week appeared to accept the finality of the courts’ rulings. Photographs of the couple sleeping with their sick child have circulated on social media recently.
“We are really grateful for all the support from the public at this extremely difficult time,” Ms. Yates said on Friday. “We’re making precious memories that we can treasure forever with very heavy hearts. Please respect our privacy while we prepare to say the final goodbye to our son Charlie.”
There was also no immediate reaction from the hospital.
“In Charlie’s case we have been discussing for many months how the withdrawal of treatment may work,” the hospital said. “There would be no rush for any action to be taken immediately.” It added that it would consult the family and that “discussions and planning in these situations usually take some days.”