Charlie Gard, the experts and one last chance to heal

In the case of Charlie Gard, the dying British infant whose parents are being denied the right to attempt a long-shot treatment despite having a willing doctor and the money to pay for it, there is a hard question and an easy one.

The hard question is when medical interventions become too extreme and pointless, when illness and death should be allowed to take their course.

The easy question, whose answer makes the case a moral travesty, is who should decide the hard question: doctors and judges, or Charlie’s mother and father.

Much of the confusion around the case reflects a mistaken leap between the two questions. Because the first one is so difficult, some people assume, the second one must be complicated, too. Because one can doubt the wisdom of the parents’ desired course — they have raised more than $1 million to pay for a treatment never attempted with this exact condition, for a child whose brain may have suffered irreversible damage — one must accept the possibility that they should be overruled by Charlie’s doctors and the courts.

This leap is dangerously mistaken for several reasons. The obvious ones first: The rights of parents are essential to a free society’s architecture, and fathers and mothers are far more likely than any other party to have their child’s best interests at heart. To intervene on behalf of experts against the family is sometimes necessary but always dangerous, fraught with totalitarian temptations to which the modern West is not immune.

There is no sign that such intervention is necessary in this case. Trying one last-ditch treatment at an American hospital may be futile, but it’s hardly outrageous — and would be no more outrageous if the Gards had raised money to take Charlie to Lourdes or to some New Age site. To overrule parental judgment should require not merely disagreement but real evidence of cruelty or incapacity — something nobody claims is present with the Gards.

There is, yes, a great deal of costly overtreatment in Western medicine. But there are also countless diseases where progress is agonizingly slow or nonexistent, myriad conditions where the official wisdom might be as mistaken as federal diet guidelines always prove to be, and many mysteries that medical science, for all its genius, has not solved.

Anyone who has been touched by a disease too rare to be adequately studied, knows that in the worst of situations an expert consensus only takes you so far. In the end, you alone have to decide, on information at once imperfect and personal, in the knowledge that all your choices may be bad. And in this dark territory, it is a mix of hope and desperation that leads to breakthroughs and to cures.

If a cure is someday found for Charlie’s condition, it may well happen because somebody, somebodies, tried things that the experts said would never work.

It is for that future’s sake, as well as for the sake of their rights as Charlie’s parents, that the Gards should be allowed to try one last time to heal their baby son.

Editor’s note: On Monday, after this column was posted, Charlie’s parents, Chris Gard and Connie Yates, ended their legal fight to take their son to the U.S.