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Terminally ill infant's parents—not his doctors—should determine if his life is worth living

Via Instagram user charliesfight

By now, many of us are familiar with the case of Charlie Gard, a 10-month-old British boy suffering from a rare condition that has caused seizures and brain damage, leaving him unable to move his arms or legs, eat, or even breathe on his own. Although Charlie's disease has not been widely studied due to its rarity, most physicians have predicted that he will die of it. And the physicians in charge of Charlie's care have decided that it is not in Charlie's best interest to be treated any longer and want him taken off the ventilator.

Chris Gard and Connie Yates, Charlie's parents, disagree. They have raised more than $1.5 million dollars to transport him to the United States for experimental treatment, a move that has been welcomed by President Donald Trump. His seizures can be largely controlled by medication, and any pain or discomfort he might be feeling from artificial ventilation or the disease itself can be controlled by medication, including deep sedation.

But British and European Union courts alike have ruled against the parents, refusing their request to take Charlie to the United States for private treatment with private money. Because they have concluded it would offer Charlie no benefit, they say continued treatment would be a kind of abuse.

Understandably, the case has provoked people of good will to offer strong views on multiple sides of this complex case. That is because the moral questions it raises touch on some of the most fundamental values of a culture. One question that has come most prominently to the fore is: Who is qualified -- indeed, entitled -- to make decisions for a person such as Charlie, who cannot communicate? And what gives these surrogate decision-makers the authority to decide whether Charlie's life is worth living?

According to Britain and E.U., Charlie's physicians are the ones who should make these decisions. And this answer has a kind of intuitive appeal. After all, the medical team is with Charlie day in and day out. Team members most fully understand the medical facts of the case and have a great deal of authority and social credibility in Western culture: Indeed, polling shows that Americans trust members of the medical sciences to act in the public interest more than religious leaders, elected officials or business leaders.

But it is important to note, even when a disease or condition is well studied, that physicians regularly make profound mistakes. Indeed, the third-leading cause of death in the United States is medical error. An American named Art Estopinan, who has a 4-year-old son with a disease similar to Charlie's, has been making the media rounds recounting the fact that physicians originally told him to take his child home because he had two months to live. Charlie's physicians claim that they are much more certain about his case but Estopinan's point, that we just don't know a lot about this incredibly rare disease, is an important one.

But let us assume for the sake of argument that we know the physicians in Charlie's care have everything right about the diagnosis and prognosis. What moral information -- that is, about the right thing to do in Charlie's case -- follows from their findings?

None.

Nothing moral follows from mere medical facts. Judgments of the kind made above still need to be made. Are physicians, even with perfect medical knowledge, the best ones to make them?

Physicians rarely have serious training in ethics. But even if they do, why should a single physician's moral point of view -- or even that of a group of physicians -- be valued above all in this case?

The social location of physicians as people of privilege should make us skeptical about their moral judgments, especially if we have a moral preference to value the needs of the most vulnerable. Studies have found, for example, that physicians often rate the quality of life of their disabled parents worse than the patients do themselves. The same has been found to be the case with disabled or sick adolescents and their families, who rate their quality of life higher than medical health-care professionals, and in people living with ALS. And when doctors go about rating the quality of life of their patients, different doctors often come up with very different answers, meaning there isn't much scientific or consistent about their assessments -- although their personal views and experiences do factor in.

In other words, when we look at the problems facing very vulnerable people such as Charlie Gard, we should be cognizant that the moral assessments of physicians are coming from those who don't necessarily understand the disabled experience, and are prone to underestimating the quality of disabled people's lives.

What to do? Most of us can probably agree that parents ought to have extremely wide latitude in general when it comes to creating moral meaning for themselves and their families. It is their vision of the good that is used to determine how they will form and raise their child. The values used to shape the people these children will become are rightly the values of the parents.

This same latitude should be given when it comes to complex cases such as Charlie's. The values of the parents should be the ones used when making the decision, especially when they do not require the use of shared community resources. There is no basis for arbitrarily substituting the moral judgment of a physician -- and plenty of reasons not to.

By Charles C. Camosy, Washington Post

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