By Charles C. Camosy, August 3, 2017

While sitting on hospital medical-ethics committees, I have sometimes worried that physicians are tempted, against the wishes of parents, to refuse or slow down life-sustaining treatment to an infant they think is better off dead. Outrageously, this does happen. (Clinicians call it “slow” or “show” coding.) But, fortunately, in the United States we almost always side with the moral judgment of the parents if the parents wish to seek further treatment. At least for now.

What made the Charlie Gard case different is that the UK medical team, hospital, and courts insisted that he be taken off his ventilator—despite the ethical judgment of his parents, and despite the willingness of medical teams in the US and Rome to provide an experimental treatment.

Charlie’s parents ultimately gave up their request to travel, judging that their boy’s condition had deteriorated to the point where the experimental treatment had no reasonable chance of success. Several months ago, when they initially made the request, the situation was different. At that time, Charlie still had relatively healthy (albeit weak) muscles and a fairly healthy brain for a child of his age. The prospects for treatment were brighter.

This, at least, was the judgment of many experts. Bambino Children’s Hospital in Rome said that the experimental therapy had a “strong scientific rationale,” and that there was a reasonable chance that it would have helped Charlie, if the UK had let him come to them sooner. The Bambino staff emphasized that Charlie’s disease, encephalomyopathic mitochondrial DNA depletion syndrome, is “ultra rare,” and that every case of it should be treated as “a unique story.”

But in the UK it was determined that the treatment should not be attempted. Indeed, it was judged that Charlie’s parents should be prevented by law from transferring him to a medical team that thought the treatment worth attempting. Implicit in this judgment is the view that the harm that would have been done to Charlie by his parents was so obvious and of such magnitude that the decision had to be taken out of their hands.
The ridiculousness of this claim rightly provoked outrage in the United States, Italy, and many other countries. Yet some observers supported the UK’s decision, with reasoning such as, “He’s just being kept alive by a machine!” or “He’s going to die anyway!”—as if some morally obvious conclusion followed from such declarations.
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Two things should be said. First, with so much data to consider and so many goods to be balanced, those who stand outside the decision are in no position to pronounce on the individual moral culpability of parents who make these choices. Second, as a rule, parents are the proper authorities for making decisions about care. Excepting cases of child abuse, we make space for families to pursue the good as they understand it.

Why did so many argue that Charlie’s doctors were the proper authorities for deciding whether or not he merited medical treatment? By dint of their profession, physicians still possess a generalized authority and social credibility. Polling shows that Americans trust members of the medical sciences to act in the public interest more than they trust religious leaders, elected officials, or business leaders.

But even when the condition is well studied, physicians regularly make serious mistakes. Indeed, the third-leading cause of death in the United States is medical error. Art Estopinan—who has a four-year-old son with a disease similar to Charlie’s—has helped inform judgments about the Charlie Gard case by relating the poignant story of physicians telling him to take his boy home because he had two months to live. Charlie’s physicians claimed that they were much more certain about Charlie’s case, but the point made by Estopinan (and Bambino hospital) stands. When physicians know so little about these ultra-rare diseases, it is reasonable for parents to be skeptical of sweeping judgements.

But for the sake of argument, let us assume that Charlie’s doctors got all the medical data correct and made a perfect prognosis. What moral conclusions follow from their findings? None.

Nothing moral follows from medical facts. Judgments about whether or not treatment is worth pursuing will have to be made. And physicians, even with perfect medical knowledge, are not the best persons to make them.

It is not only that physicians rarely have serious training in ethics. Like all of us, they have certain biases which come from their social location. They are better educated than the average patient, wealthier, possessed of greater freedoms and opportunities. Their privileged status often causes them to underrate the value of the lives of less fortunate people. Studies have found that physicians are profoundly ableist in judging the quality of life of their patients; they often discount the worth of the disabled.

It was the ethical judgments of Charlie’s physicians that kept Charlie from getting treatment when there was a reasonable chance it could benefit him. Charlie does not belong to his physicians. He belongs to his parents. And they to him.

Charlie Gard is a child of God who now sees that God face-to-face. That is his eternal legacy. But his temporal legacy may well be forcing Western medicine to face two disturbing trends: a return to “physician knows best,” coupled with a slouch toward euthanasia on the basis of disability.

Charles C. Camosy is associate professor of theology at Fordham University
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