Physicians have many ways of influencing medical decisions made by the parents of children in their care.
Certain studies can be cited in support of what the physician desires, and studies pointing in a different direction can be ignored. Directive, emotive, and exaggerated language can be used to manipulate, especially when the likely outcomes of various options are under discussion. Numbers can be used in a similar way: Should a consult focus on the two-thirds of patients who have poor outcomes—or on the one-third who have good ones?
These forms of manipulation are a persistent concern in clinical ethics, and they present themselves in dramatic fashion when medical teams discuss disability.
Sometimes the desire of a physician to achieve the outcome he wants is so strong that he will engage in deceptive practices called “slow coding” or “show coding.” The physician agrees with the parents that everything possible will be done for their child (“full code”)—but in reality the physician and medical team will not engage in aggressive treatment. This practice is defended by some ethicists today, and is often justified by the physician’s personal judgment that the life of a particular child is not worth saving.
Most often it is done on the down-low. Physicians are good at avoiding public scrutiny of their actions generally, and in these kinds of cases in particular. Decisions to refuse to treat a child because of a disability are distorted by euphemistic references to “mercifully” removing or foregoing “burdensome” or “extraordinary” treatments.
To be clear: The distinctions between life-sustaining treatment that is morally required and that which may be foregone—pioneered by the Catholic moral theology in the late Middle Ages and early Modern period—are essential in these cases. Personally, I take a wide view of what kinds of things might make life-sustaining treatments extraordinary, even arguing that Catholic social teaching requires expense to be one of the factors considered.
But the principle of never aiming at the death of an innocent person—whether by action or omission—must remain absolutely exceptionless. This is what the dignity of the person requires, especially if one wishes to protect vulnerable populations who are at risk of being marginalized by those who find them inconvenient. And given the checkered history of Western medicine when it comes to the value of the disabled, we must take care to be certain that this principle is enforced in the clinic.
Enter the current row over Alfie Evans. At first glance, it may seem that this case has much in common with last year’s debate over Charlie Gard. And indeed, there are important similarities.
Like Charlie, Alfie has what appears to be a neurodegenerative disease, from which his UK doctors believe he will never recover. Like Charlie’s doctors, Alfie’s doctors believe that the damage to his brain means that his life is no longer worth sustaining, and they have recommended that his ventilator be withdrawn so that he can die—in his own best interests. Like Charlie, Alfie has the support of many people around the world, including Pope Francis, who want his life to be sustained. Indeed, Alfie has been made an Italian citizen, and Italy has volunteered to transport him to the Vatican’s Bambino Hospital—at no cost to the UK’s National Health Service. (This afternoon, a British judge dismissed the parents’ latest appeal of the court order preventing Alfie’s departure to Rome.)
There are some important differences between the cases, however. Charlie’s disorder, though rare and poorly understood, was actually diagnosed. Alfie’s has not been. Charlie had been treated comprehensively by multiple kinds of medical teams, but Alfie has been seen almost exclusively by an acute care medical team. Physicians generally rate the value of the lives of their disabled patients lower than the patients do themselves, but acute care physicians, with their near-constant exposure to horrific conditions without seeing longer-term outcomes, are particularly prone to this kind of bias.
But perhaps the most important difference between the cases is that when UK authorities ordered Alfie’s life support withdrawn, he did not die. At the time of this writing, he has been breathing on his own for nearly two days.
In response to this remarkable turn of events, it appears that Alfie’s medical team is giving him some water and oxygen (not enough, according to some reports), but they are also apparently denying him typical levels of nutrition.
This procedure can in no way plausibly be described as foregoing burdensome or extraordinary treatment. Making sure that a disabled child has proper nutrition and hydration, especially when he cannot get it on his own, is not a medical act. It is basic human decency.
Let us not mince words. As with Charlie Gard before him, Alfie Evans’s death is being aimed by the very people whose vocation it is to help and protect him. The difference in Alfie’s case is that, because he has continued to breathe, the pretense of “removal of burdensome treatment” is patently absurd. In a situation that was no doubt distressing to those who hoped he would die, Alfie’s continuing to breathe has clarified the true object of the act of removing his ventilator.
Of course, as with Charlie before him, we had more than enough evidence to make such a judgment, even before Alfie was extubated. The primary judge who refused to allow Alfie to travel to Italy was concerned with Alfie’s brain damage, not with the burden of treatment. Alfie’s disability is likely to be profound, and thus, according to the judge, it is in Alfie’s best interests to die.
Given all that we still have to learn about the brain and its relationship to the functioning of a person, the judge may simply be wrong. In a separate case, a baby born with only 2 percent of normal brain tissue now, inexplicably, has a fully functioning brain. Case studies show that patients who lack a cerebral cortex may still know who they are, crack jokes, and recognize themselves in photographs. Some children born with hydranencephaly can laugh and cry, understand the difference between familiar people and strangers, and prefer certain kinds of music.
It may also be the case that the drugs in Alfie’s system have suppressed thalamic connections in the brain, thus giving the false impression that much of his brain is gone.
But even if we suppose the judge is correct, he and others are making the case that certain profoundly disabled children are unworthy of life. And when one combines Alfie’s case with that of Charlie Gard, the UK has now established the clear and frightening precedent that parents who have a different understanding of what kinds of lives are worth living may have their children taken from them and left to die—in the children’s own best interests.
As bad as this trend is, when it is combined with other trends in the developed secular West, one can see a clear logical path to its getting even worse.
We already see systematic ableism at work in the abortion rates of prenatal children with Down syndrome, with most Western countries eliminating these disabled individuals are a rate of between 70 and 90 percent. Belgium and the Netherlands have developed legal protocols to kill children after birth, often because of judgments about their quality of life. Many secular bioethicists have argued for actively killing disabled patients—a natural next step, since we are already aiming at their deaths by forgoing treatment.
Do the math. What logical impediment keeps a state from deciding that various kinds of disabled children are unworthy of life, taking them from their families by force, and aiming at their deaths—in the children’s own best interests?
The developed secular West now finds itself at one of the most serious crossroads we can imagine. Will we follow the logic of the moral and legal principles laid out in countries like the UK, Belgium, and the Netherlands? Or can we muster the moral will to challenge such principles directly and forcibly?
One of the most glorious moments for the Roman Catholic Church during the previous century was the direct and forceful condemnation by the German Bishops of the Nazi euthanasia program for the disabled. It is not a perfect historical analogy, but today the Church finds itself on the cusp of a similar moment. Will we once again be direct and forceful in defense of the vulnerable disabled who are at risk of being killed? Or will we capitulate to powerful institutions pushing a violent and ableist agenda that is at odds with our fundamental commitment—one required for our salvation—to see the face of Christ in disabled children?
Pope Francis has admirably been on the side of both Charlie Gard and Alfie Evans. The broader Catholic hierarchy, the UK bishops, and the men around Francis, however, seem cold and complacent, deferring to a medical and legal establishment that refers to the application of Catholic moral theology to these cases as “ridiculous emotive nonsense.”
Perhaps those who are not infected with the ableism of the developed secular West are in a better position to respond to such a charge. The Brazilian bishops, interestingly, have put out a video insisting that the UK government has a duty to use its resources to support those who most need it, and that Alfie’s life must be protected.
Indeed. Enough with the deference to the medical and legal establishment and its judgements about which lives are worth living. Now is a time for choosing. The most vulnerable require our clear and uncompromising support.
Charles C. Camosy is associate professor of theology at Fordham University and author of Too Expensive to Treat?—Finitude, Tragedy, and the Neonatal ICU.