The tragic tale of Charlie Gard, the baby who died in London last week a few days short of his first birthday after months of wrangling over his medical care, moved people around the world. But it also sparked a furious and highly politicized debate over both government-run medicine and right-to-life issues. The emotions are understandable; but as often happens in such debates, the facts can get lost in the fog of ideological war.
The circumstances of the case pose excruciating dilemmas. While Charlie seemed healthy at birth, about two months later he developed symptoms of illness. He was eventually diagnosed with a rare and fatal genetic condition that causes muscular degeneration. Only 15 other such cases are known.
Doctors at the Great Ormond Street Hospital for Children said they could do nothing. Eventually, the boy lost the ability to move or breathe on his own and was kept alive by a ventilator.
The parents, Chris Gard and Connie Yates, refused to give up hope. They did their own research and found an American neurologist, Michio Hirano of Columbia University Medical Center in Manhattan, who was working on an experimental therapy for the disease. Hirano agreed to treat Charlie, and the parents raised more than $1.5 million to bring the baby to the United States.
But the hospital intervened, saying the treatment was not in Charlie’s best interest because it could not help him and would only cause suffering. British courts, and then the European Court of Human Rights, sided with the doctors. Gard and Yates finally gave up, saying that too much time had been lost, and they agreed to have Charlie taken off life support.
Many Americans, especially pro-life conservatives, were outraged that two loving parents were being prevented from getting treatment for their dying child. In their view, Charlie was killed by the state, which cruelly dragged out the dispute over his treatment until he was beyond help.
Sen. Ted Cruz (R-Texas) asked on Twitter why government “should have power to decide who lives & dies.” Some said Charlie’s fate should be a warning about the dangers of government-run health care. To others, the courts’ argument that Charlie would be too impaired to derive any pleasure from life pointed to a dangerous assumption that life isn’t worth living if you’re disabled or even unhappy.
But other observers, including Melanie Phillips, a conservative columnist for the London Times, say this is a false narrative. Court documents, they say, showed Charlie was beyond help all along, that Hirano’s treatment was untested and that the doctor himself conceded there was only a vanishing chance of Charlie’s brain functions being restored to any meaningful degree. That the parents would latch on even to this sliver of hope is understandable. But Phillips is less charitable to Charlie’s self-appointed advocates, calling their efforts “a cruel and ignorant campaign.”
An editorial on the controversy in The Guardian, a left-wing British newspaper, asserted that children do not belong to their parents. To American conservatives, this is statism at its most horrifying. Yet Americans, too, recognize that parental authority does not include harming children or denying them necessary medical treatment. The situation becomes much more complicated when it’s the treatment that might do harm.
There are no perfect answers to these conflicts. Sometimes, doctors turn out to be wrong and parents turn out to be right. Modern medicine does wonders, but it also can hold out false promises and prolong suffering instead of saving life.
Debate on such cases will always be wrenching and emotional. But the least we can do is respect the facts.
Cathy Young is a contributing editor to Reason magazine.