Could a Charlie Gard case happen in the U.S.?

The court battle over Charlie Gard, the famous British tot who died last Friday, has brought renewed attention to the debate between doctors and parents over the care of terminally ill and severely disabled children.

Charlie’s sad case, which played out in British and European courts and pitted the baby’s parents against hospital staff, raises a question for American parents: Could such a scenario happen in the United States?

The answer isn’t simple. Doctors and parents often disagree over treatment when a child is born with a terminal illness or slips into a coma.

Charlie died months after doctors diagnosed him with mitochondrial depletion syndrome, which eventually robbed him of his sight, hearing, and movement. Charlie’s condition was believed to be incurable, and doctors at Great Ormond Street Hospital in London decided they would remove the baby from life support.

Parents Chris Gard and Connie Yates fought in court to block the hospital’s decision and sought to take Charlie to the United States, where another doctor had offered an experimental treatment. But the hospital refused to release the child. The couple gave up their legal fight on July 24, after U.S. physician Michio Hirano told them it was too late to offer the experimental treatment.

“Had Charlie been given the treatment earlier, he would have had the potential to be a normal, healthy little boy,” Gard told media. “All we wanted to do was to take Charlie from one world-renowned hospital to another world-renowned hospital in the attempt to save his life and to be treated by the world leader of mitochondrial disease.”

Some American onlookers have blamed Britain’s socialized National Health Service for the London hospital’s staunch refusal to grant the parents’ wishes. In the United States, ethicists say parents typically have more control over their children’s healthcare decisions. But they warn that rising medical costs may lead the country in Britain’s direction.

According to Cheyn Onarecker, a physician and ethicist at the Center for Bioethics & Human Dignity, much has changed in the United States since the high-profile 1980s cases of Karen Quinlan and Nancy Cruzan, who both slipped into comas after separate accidents. Hospitals kept both women on life support for years while their families fought to disconnect them.

Now, Onarecker said, “families want ‘everything done’ for their loved one,” even when recovery looks grim. That, combined with the soaring costs of keeping patients on life support (costs that hospitals sometimes have to swallow when people can’t afford them), has increased the conflict between doctors and parents.

Still, he said, parents in the United States can “vote with their feet.”

Such was the case for parents of Ryan Nguyen, born six weeks premature in the fall of 1994. Asphyxiation before birth caused heart, kidney, bowel, and brain injuries his doctors thought too great to be worthy of treatment. His parents fought to keep him alive, and eventually were able to transfer him to a hospital in Portland, Ore., willing to treat him. Ryan died at age 4 from heart problems.

Similarly, the parents of Jahi McMath fought to keep their teenage daughter on life support after doctors in California declared her brain-dead. Jahi suffered a cardiac arrest at the age of 13 in 2013 following a tonsillectomy procedure to treat sleep apnea, and a court gave the hospital permission to remove her ventilator. But her parents were able to transfer the teen to a Catholic hospital in New Jersey and later to a home, where she remains on life support. (The hospital that originally treated her, UCSF Benioff Children’s Hospital in Oakland, Calif., stands by its original conclusion that Jahi is irreversibly brain-dead.)

In 2016, California doctors declared 2-year old Israel Stinson brain-dead, issued a death certificate, and sought to remove his life support. The toddler had suffered an asthma attack and gone unconscious. He eventually stopped breathing on his own. His parents were able to transfer him to a hospital in Guatemala, but Israel died after returning to the United States, where doctors removed his life support.

“If our government becomes more and more responsible for all of healthcare costs, we could definitely move to a place where parents are in the same situation as those in the U.K.,” Onarecker said. “The cost of care will take on an even greater role in dictating what treatments will be allowed, regardless of a parent’s decision. When you have limited resources, rationing is the only option.”

Sometimes, as in the cases of Simon Crosier and Abigail Allison, U.S. doctors haven’t bothered to consult the parents at all. In both cases, doctors issued a “do not resuscitate” (DNR) order on the severely disabled children’s medical charts without the parents’ knowledge or permission. The parents of Abigail, who had been diagnosed with Wolf-Hirschhorn syndrome, caught the move and convinced the doctor to reverse it.

But in the case of Simon, born in St. Louis with Trisomy 18, the parents discovered the DNR after it was too late: They watched in horror as their infant son took his last breaths while nurses refused to intervene. They later discovered that doctors had been giving their son “comfort feeds” instead of food to keep him alive.

Simon’s case led to the recent passage of “Simon’s Law” in Kansas, which went into effect last month. The law requires doctors to notify parents of a DNR order, and parents can refuse such an order. Under the law parents and patients also have the right to obtain a hospital’s policy on “denial of life-saving care.”

National Catholic Bioethics Center’s John Di Camillo said that while patients and parents should have the final say on treatment, medical expertise should be taken into account: Sometimes treatment does more harm than good and doesn’t really prolong a life.

In those cases, he said, “doctors in their conscience might say, ‘No, we don’t want to participate in this.’”

The key to honoring both medical expertise and parental authority, according to Christian Medical & Dental Associations CEO David Stevens, is to differentiate between “futile treatment” and “futile lives.”

“I’m all against doing futile treatments, and we don’t need to keep people on life-sustaining treatment when it is futile, I mean truly futile,” Stevens told me. “They’re comatose, they are in the midst of dying, and we’re just prolonging it with no benefit in sight.”

But ethical problems arise when doctors decide a life is no longer worth living because patients can’t feed themselves, clean themselves, or are in constant pain or a coma. Stevens thinks families should be allowed to consult an independent medical expert to determine if a treatment truly is futile, since doctors may jump to a conclusion based on their perception of a patient’s quality of life.

“They think, well, nobody would like a life like this,” he said. “You can see the psychology that has permeated our culture, that quality of life means I can do things that other people can do, and if you don’t have that then you’re better off dead.”

While rising medical costs may discourage hospitals from accepting risky patients, and doctors may increasingly give up on patients when they think their lives aren’t worth living, Onarecker and others expect to see a greater push for parental rights in the United States.

“I anticipate that stories like that of Charlie Gard will increase the number of state legislatures attempting to pass similar laws [to Simon’s Law],” Onarecker said. “No one wants a system where children suffer with no hope of improvement or recovery, but we certainly don’t want a system where the rights of a parent are trumped by the decisions of those who have much less at stake.”