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 pediatric bioethics at the University of Missouri-Kansas City School of Medicine.
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.
“All the doctors agreed that (Jahi) met the criteria for being brain-dead,” Lantos said. “The courts said, ‘Yeah, we respect the doctors’ opinion, but if the parents want to pay for her treatment and take her to a different place, we’ll let ’em.’ And they did. And she is still alive.”
The more common situation in the US is “where the courts are ordering treatment,” he said.
It happens, for example, because of religious beliefs, when parents don’t want their child to get a blood transfusion. Or when parents refuse the standard, proven treatment in order to try an experimental treatment. In such situations, courts may step in and take protective custody and order the treatment, Lantos said.
American courts “don’t usually do the opposite and say that ‘parents who want to keep their child alive are making a decision contrary to the child’s interests, because the child would be better off dead, so we’re going to overrule the parents,’ ” he said. “Even when a child met the criteria for brain death,” the courts allowed the parents to seek care, he added.
One famous exception is the case of Terri Schiavo, a woman who suffered cardiac arrest resulting in brain damage in 1990. The US Supreme Court upheld her husband’s decision to withdraw life support, despite her parents’ objections. She died in 2005 at age 41.
Still, a key aspect of the Charlie Gard case is that there is no question of the parents “being loving, devoted, attentive, caring people,” Lantos said.
Sometimes, parents are not visiting their child frequently, are on drugs or are simply not showing themselves to be devoted, caring parents, Lantos said, “but in (the Charlie Gard) case, the judge went out of his way to praise the parents for their commitment and attentiveness.”
What most Americans found unusual “and perhaps radical about (the Charlie Gard) decision was, the family wasn’t asking the hospital to continue treatment or the National Health Service to pay for it. They said, ‘We have the money. We have a doctor in the US who’s willing to do it. Just let us go,’ ” Lantos said. “And the courts essentially said, ‘Nope, we’re not even going to let you go.’ “
English law, explained Fenton-Glynn, does not see parents as having the “right” to make decisions on behalf of their children. “The concept is called parental responsibility: That is, the parent has a responsibility to make decisions, to look after the child,” she said. “Parenthood doesn’t give them rights; parenthood gives them responsibilities.”
Discretion or rights?
Seema Shah, a lawyer and ethicist who is a faculty member at the Treuman Katz Center for Pediatric Bioethics at Seattle Children’s Research Institute, explained that US courts consider “parental discretion,” not parental responsibility.
American parents have “discretion to make decisions” on behalf of their children, Shah said, “up to the point where their decisions are going to cause harm to their children.”
Many Americans see it as their “right,” she said. Legally, though, US courts are following the same best-interest standard as the UK, but the way it works here, at least in practice, is that “courts are deferring to parents,” Shah said.
American courts recognize that parents have values and that parents understand their children, even if this does not give parents rights to do whatever they want, Shah explained.
Still, from state to state, “there’s a lot of variability in practice,” she said. It’s not so much a matter of differences in state laws, it’s more a matter of “different parents make different decisions, and courts and hospitals accommodate those more or less in different states,” she said.
So, although some children in the US are born with inherited diseases, just like Charlie, their lives look very different from his, Shah said. In America, these babies “receive care from hospitals willing to accommodate parents who want their children to live as long as possible — with their suffering minimized, of course,” she said.
“Wrenching” is how Shah describes Charlie’s case. A lot of detail has not been made public, such as “the pain doctors expect that Charlie’s in,” she said. “He’s likely sedated to the point where he’s not feeling a lot of pain. Still, the procedures he’s undergoing may be painful and unpleasant.”
Shah also believes the judge “might be worried about people taking advantage of desperate parents. The judge clearly struggled with this case.”
“When you look at these cases, what’s so hard is, we have to ask ourselves, ‘Should we let parents spend a lot of money to take a shot in the dark when the alternative is they will lose their child?’ And I don’t think there’s an easy answer to that question,” Shah said.
She noted that bioethics and legal principles collide when slow-moving courts must decide cases like Charlie’s. Meanwhile, “the child deteriorates,” she said. Lacking better processes to resolve disagreements, it’s “delay that makes the decision.”
‘A one in a zillion chance?’
“Therapeutic misperception” is at play in the Charlie Gard case, said Dr. Jeffrey P. Brosco, a professor of clinical pediatrics at the University of Miami Miller School of Medicine. He’s seen this in other bioethical cases and believes cases that closely resemble Charlie’s happen stateside all the time.
“Therapeutic misperception is the idea that if there’s something that could work, then it probably does work, and ‘Yes, I want to be involved with it, and I’m willing to take any chance,’ ” said Brosco. “That seems to be happening here. It certainly was portrayed that way by the courts. You ask a parent, ‘Do you want to take a one in a zillion chance?’ Most families would say ‘Yes.’ ”
Though Brosco does not know every detail, he believes from all that he has read that Charlie’s situation is one in which “no more good medical options exist. Where the only thing the medical team is doing, at this point, is causing more pain and suffering,” he worried.
“Whether it’s here, England or Europe, judges have to make these decisions sometimes,” Brosco said. To head off these situations in South Florida, he said, five hospital ethics committees have joined forces to form a single opinion, presenting a united front whenever a difficult decision must be made.
“It’s the whole community of providers that agrees there’s only one right thing to do,” Brosco said.
With different laws in different states and communities rising to the challenges they face, Lantos believes “the US is too diverse to generalize about.”
Still, when it comes to bioethical matters similar to the Charlie Gard case, “the state that’s been most in the public spotlight is Texas.”
‘Even in Texas’
In the 1990s, Baylor University bioethicist Rick Brody began to notice “some very disturbing cases,” said Amy McGuire, director of the Center for Medical Ethics and Health Policy at the Baylor College of Medicine.
The cases involved dying patients, where nothing medical could be done to improve their condition, McGuire explained. In each of these cases, a family member was requesting “continued aggressive life-sustaining treatments, things like multiple amputations,” she said. “Things that really the health care professionals felt were a violation of their professional integrity and obligation to their patients.”
Brody and other Baylor faculty put together a task force to devise an ethical approach to deal with such “futile care.”
They developed and published in 1996 a process-oriented approach: When health care providers believe that a patient request is medically inappropriate, a committee makes a decision. If the members decide that a procedure is futile, doctors can withdraw or refuse treatment against family wishes.
The policy evolved into the Texas Advance Directives Act, which won bipartisan support and was signed into law in 1999 by then-Gov. George W. Bush. A similar process-oriented policy was fashioned for guidelines written by the American Medical Association and published in 1999, McGuire said. The guidelines were not widely adopted by individual states, and recently, she said, the law has sparked controversy and a few unsuccessful challenges.
“Physicians don’t have an obligation to offer or to provide medical interventions that are not deemed to be medically inappropriate,” McGuire said, yet “all the time,” people request inappropriate services of doctors.
“For example, does a pediatrician have an obligation to give a baby or a child antibiotics when they’re fairly certain that the baby or child has a virus and not a bacterial infection, because the parents are saying, ‘I want an antibiotic; my kid is sick’?” McGuire asked. “If you provide medical services that are not medically indicated, there could be legal ramifications for that as well.”
The Texas Advance Directives Act amounts to a lot of hoops to jump through, Lantos said, but “even in Texas, if the parents found a hospital that would take a baby like Charlie Gard,” the child would probably be transferred.
“Our job as clinical ethicists is to try to help resolve those conflicts before it gets to the point of being so adversarial that nobody can make a decision and the courts have to get involved,” McGuire said. To prevent gridlock, clinical ethicists negotiate and identify goals of care and try to “come up with some sort of mediated solution that everybody can feel good about.”
These “incredibly difficult situations” are “best dealt with between family members and health care providers,” McGuire said. “We don’t want to encourage the politicizing of medical decision-making. I think that would be a very bad direction to go.”
The date when Charlie Gard’s life support will be switched off appears to be up in the air, as the hospital is allowing his parents to spend more time with their child. Meanwhile, support from some of the most powerful people in the world — Trump and the Pope — has buoyed Charlie’s parents.
“The support from the Pope and the President has given us hope. They are traditional men who believe in the family,” Yates said in a statement. “They believe in our case and understand why we believe it is right to continue fighting so hard to save Charlie.”
