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Charlie Gard and the experts

Editor’s note: The parents of Charlie Gard decided to end the court battle to try an experimental procedure for their son.

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 intuitively 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 close to 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. To overrule the parental judgment on how to handle an infant’s looming death should require not merely disagreement but real evidence of cruelty or incapacity – something nobody claims is present with the Gards.

To these basic moral considerations, two forward-looking issues should be added. The power of experts to deny treatments to people who – unlike the Gards – can’t pay for them is going to increase in a West whose governments will have to bear the lion’s share of an aging population’s medical bills.

But that fiscal necessity leads to two temptations. The first, and the most dangerous, is to regard illness as a costly problem to be solved, not just by the limiting of possible treatments, but by the active hastening of death. That way lies assisted suicide and not-exactly-voluntary euthanasia, which are becoming mainstream in some of Britain’s nearest neighbors, and whose long shadow darkens the Charlie Gard debate.

The second institutional temptation is not toward active wickedness but toward sclerosis, groupthink and stagnation. Establish an iron triangle of doctors, insurers and government boards, tell them they must establish predictable standards for what treatments will be covered, and they will inevitably resist many of the experiments through which medical progress advances. In which case it will become more necessary than ever to allow families and individuals the freedom to refuse the consensus, and to pay for more radical options if they can.

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.

Anyone who has watched a friend die young of cancer, who has battled a chronic illness, or who has been touched – like the Gards – by a disease too rare to be adequately studied, knows that in the worst of medical 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.

An extra treatment for poor Charlie Gard will probably not lead anywhere. But if a cure is someday found for his condition, it may well happen because somebody, or a succession of 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.

The writer is a New York Times columnist.

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