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.
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.