WASHINGTON — Every human heart breaks at the story of Charlie Gard, the terminally ill British infant whose parents are battling to bring him to the United States for treatment that is sure to prove futile.
But as tends to happen in these circumstances, individual tragedy is susceptible to being hijacked in service of a larger, sometimes misleading, point. So the terrible case of Charlie Gard serves both to raise difficult and important questions about the proper contours of parental rights — and to sound unwarranted alarms about the horrors of socialized medicine and the insidious arrival of death panels. Charlie is at once a dying child and an ideological football.
It was, then, just a matter of time before President Trump weighed in with a tweet: “If we can help little #CharlieGard ... we would be delighted to do so.” Somewhat ironic, given the president’s heedlessness about so many in distress around the world, not to mention the health of millions here. But the tweet was in keeping with Trump’s careful tending of a base that bristles at Big Government dictates and recoils at any perceived incursion on the right to life.
To back up, Charlie is an 11-month-old who suffers from mitochondrial DNA depletion syndrome, a rare condition that has left him blind and deaf, unable to move or breathe on his own. His parents have been fighting the London hospital where he has been since September for permission to bring him to the United States for treatment so experimental it has not even been tried on mice. Given Charlie’s extensive brain damage, prospects for improvement are beyond remote. British courts have refused to allow the treatment and ordered Charlie’s life support withdrawn.
Understandably, if not entirely rationally, Charlie’s parents are not prepared to surrender. “He literally has nothing to lose but potentially a healthier, happier life to gain,” Charlie’s mother, Connie Yates, wrote on a GoFundMe page that has raised more than $1.7 million.
To the American mind, the notion that Charlie’s parents lack the final say on their child’s care is repugnant. Certainly, U.S. courts intervene in situations where parents are withholding consent for critically needed medical care such as chemotherapy, but the idea of ordering parents to halt care for a dying child takes things a giant and troubling step further.
In the United Kingdom, the Children Act tilts power away from parents, stating that “the child’s welfare shall be the court’s paramount consideration.” Thus, the court in Charlie’s case acknowledged that “all other things being equal, the views of the parents will be respected and are likely to be determinative.”
But when medical authorities and parents disagree, the court ruled, “it is well recognized that parents ... may lose their objectivity and be willing to ‘try anything’, even if, when viewed objectively, their preferred option is not in a child’s best interests.” In such circumstances, “the best interests of the child must prevail and that must apply even to cases where parents, for the best of motives, hold on to some alternative view.”
It’s easy to see how Charlie’s story resonated, with his father’s anguished cry, “Our parental rights have been stripped away.” In such unimaginable circumstances, I believe I would let my child go gently. That is what the guardian appointed to represent Charlie concluded, too. But his parents made a different choice. Surely, they love their child no less than I love mine; maybe they are just fiercer fighters.
So I find myself ready to argue that these outsiders, the doctors and lawyers, should butt out. Then I start to worry about pain, and the court’s finding that “it is likely he is suffering it and at more than a low level.” As I said, these are challenging questions. It is wrong to understand Charlie’s case as a cartoonish conflict between loving parents on the one side and an overbearing bureaucratic state and its heartless doctors on the other.
And speaking of cartoonish conflict, conservative commentary about Charlie’s case seems determined to turn it into something it is not: The courts have not sentenced Charlie to death — an accident of genetics did. They did not deem his life not worth living — they recognized the reality that his death is inevitable.
Likewise, Charlie is not a cautionary tale about a single-payer system being unwilling to foot the bill for pricey care — if money were the issue, the hospital would be shooing him out the door — or about death panels deciding who deserves care. Those who use Charlie Gard as a political tool dishonor his too-short life.