Charles C. Camosy writes on what we might learn from the recent case of Charlie Gard, a little boy whose parents were denied the right to care for him despite being emotionally, financially, and medically supported in wanting to try an experimental treatment for their son’s rare condition. Instead, British courts mandated that little 11-month old Charlie should die by removal of his ventilator for subjective judgments about the nature of his life as a disabled boy. Bobby Schindler visited with Charlie and his heroic parents, Chris Gard and Connie Yates, last month, so this case is particularly close to the Terri Schiavo Life & Hope Network and to me:
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 makes a point here that I made last week at the Napa Institute, which is basically this: physicians and medical experts carry legitimate authority based on their stature as bearers of important and specialized knowledge, and about objective medical realities—but too often that authority is cited as the basis for imposing subjective treatment decisions. That was certainly the case with Charlie Gard, and it’s the case for many patients and families in America who find out too late that their physician, or an institution’s ethics committee, can make a unilateral and life-ending decision without the consent of the person allegedly being cared for.