Learning From Charlie Gard

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.

A person with, say, an artificial heart is likewise “being kept alive by a machine.” Presumably nothing at all follows from this fact in isolation. And “going to die anyway” is the condition of everyone. It is notoriously difficult to determine who counts as “terminally ill,” especially when the person is not in the final stage of the dying process. (Charlie was pink, plump, and growing, right up until his life support was removed.) It is even more difficult to determine what import a person’s being in various stages of the dying process should have for ethical decisions about treatment.

A slightly more sophisticated argument from defenders of the UK decision was that a ventilator is considered “extraordinary” medical treatment, and as such may be removed or withheld. But such a judgment needs context. Medical aid in breathing is considered “ordinary” treatment (ethically required—even if fairly rare compared to other treatments) in some circumstances, and “extraordinary” treatment (ethically optional) in others. The distinction between ordinary and extraordinary is complex in some cases, but in general, a treatment is ordinary if it is effective and doesn’t impose an undue burden; it is extraordinary if its burden could reasonably be considered disproportionate to its benefit.

Did aiding Charlie Gard’s breathing with a ventilator constitute extraordinary medical treatment? The treatment was working as intended, and Charlie was, again, a pink, plump, and growing little boy. In a case where treatment is working so well, its burden would need to be substantial in order to be disproportionate.

The case I like to give my bioethics students to illustrate the point—not least because it was pivotal in the historical formulation of the ordinary/extraordinary distinction—is the battlefield amputation of a limb without pain medication, in order to save a soldier’s life. A soldier could refuse, as extraordinary treatment, even a life-saving amputation, in view of the horrific burden of the treatment. Note that such a solider, if he somehow managed to survive, would be elated; for he was not aiming at his own death, but rather choosing to forgo treatment he deemed too burdensome.

Back to Charlie. If Charlie had started breathing on his own last week when his ventilation was removed, the goals of those who had ordered the removal would have been thwarted. As Jana Bennett has pointed out, the judgment of Charlie’s physicians, his hospital, and the court was focused primarily on Charlie’s mental disability. That is, it was focused on whether his “brain function” could be “improved.” The judge in Charlie’s case justified his ruling by saying that “Charlie’s parents accept that his present quality of life is one that is not worth sustaining.” One of Charlie’s physicians said, “It could be argued that Charlie would derive no benefit from continued life.”

Those who held power over Charlie decided that his life was not worth living. They reached this judgment on the basis of his expected mental disability. They denied him treatment, and ordered his ventilator removed, not because of the burden of the treatment, but because of the burden of his life. In a cruel act proposed by doctors, approved by courts, cheered by the press, and blessed by certain high clerics, Charlie Gard was euthanized. It was euthanasia by omission, but it was euthanasia all the same.

This fact was not lost on Julian Savulescu, the Oxford ethicist and student of Peter Singer, who asked: If Charlie’s life is not worth living, why shouldn’t we directly kill him? The answer is uncomfortable for those who supported the UK decision. There is no moral difference between aiming at the deaths of infants like Charlie by omission and aiming at their deaths by direct action. No logical barrier prevents those who supported the UK’s decision from endorsing outright infanticide. This is precisely what many supporters of the direct killing of infants argued in an “infanticide symposium” published by the Journal of Medical Ethics in 2013.

How we come to view Charlie Gard’s case has direct import for how we will view the direct killing of infants, an ancient and barbaric practice that has been reintroduced in the Netherlands in deceptively civilized guise as the “Groningen protocol.” This protocol allows the killing of infants of less than one year of age; the victims are very often disabled.

In highlighting the dramatic stakes, however, the last thing we should do is ignore how personal issues like this are for many people. I’ve received moving notes in response to other pieces I’ve written on Charlie Gard—including from people who wondered whether, because of their decision to remove a ventilator for their child, they were guilty of euthanasia by omission.

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 and author of Too Expensive to Treat?—Finitude, Tragedy, and the Neonatal ICU.

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