Little Charlie Gard has been sentenced to die by those who hold power over him in the United Kingdom.
He has an incredibly rare degenerative brain disease; indeed, there are only 16 known cases of it in the entire world. Charlie’s damaged brain requires him to have assistance in breathing and have seizures from time to time. He has brain activity, but he is unlikely to develop sophisticated mental capacities without a way to treat the disorder.
Charlie’s parents raised nearly two million dollars to take him to the United States for experimental treatment, but UK officials are refusing to let the parents do what they strongly believe to be in the best interests of their child.
In so many different ways, this decision is a classic example of Pope Francis’s now-famous image of “the throwaway culture.” If Charlie had the right kind of mental capacities, he would not be being discarded in this way. Sure, he’s dependent on a machine to live, but so are many of his fellow human beings, including anyone walking around with an artificial heart.
It is because of Charlie Gard’s mental disability that the UK government is aiming at his death. His vulnerable life had been determined by powerful others to be unworthy to be lived.
This makes a June 29 statement put out by the Pontifical Academy for Life in response to this decision quite puzzling. It has a focus, not on the fact that the UK is aiming at the death of a helpless, vulnerable, mentally disabled child, but on the Church’s teaching on ordinary and extraordinary means of treatment.
I’ve written a book on Catholic moral theology and social teaching when it comes to treatment of babies such as Charlie. There’s a good argument to be made that, because Charlie is likely not to benefit from the experimental and wildly expensive treatment, such treatment should be foregone, especially given the incredible need of other very sick children with easily treatable diseases.
But Catholic moral theology generally lets those closest to the goods in question decide how to weigh them, through what’s called “proportionate reason.” In this case, those closest to the goods involved are obviously the parents. If the money being used for the treatment were coming from the state this would be another matter, but the money Charlie’s parents raised came from private sources.
It is extremely odd that the Academy would not mention this in their statement. It is even more odd that they didn’t acknowledge that what has been decided by the UK authorities is, in fact, euthanasia.
According to the Church’s teaching, euthanasia is an act or an omission which by intention causes death.
It is, of course, perfectly legitimate to refuse to do something to save one’s life or that of another. One can choose not to cut one’s leg off on the battlefield, or refuse to travel to a great distance for cancer treatment, even if one foresees (but does not intend) that one will die without such treatment.
The Church has a centuries-long tradition of making these judgments, and the reasoning behind them proved foundational for contemporary secular thought on withholding or withdrawing life-sustaining treatment.
But this is very different from aiming at death by omission.
Consider this classic thought experiment in bioethics. Suppose an evil husband wants to kill his wife while she is in the bathtub in order to get life insurance money. But just as he is about to drop the toaster into the water he notices that she is already drowning. Happily, he refuses the easy rescue with the aim that she dies.
From the perspective of Catholic moral theology, there is no difference between his refusal to aid or his dropping the toaster in the water. Both aim at death.
How does this help us morally evaluate the decision of the UK to take Charlie Gard off of life-support? Consider what the aim of the act is.
Suppose, for instance, that when Charlie is taken off of life support he actually continues to breathe on his own and refuses to die. Will those who made the decision be pleased with this outcome? Of course not.
They made the judgment that the ventilator is not providing him a benefit. “Why?” one might ask. “Isn’t it keeping him alive?” Those who want the treatment withdrawn do not think Charlie’s life is a benefit to him. They think it is in his best interest to die.
The means by which the UK authorities will accomplish this goal? Removing the ventilator. An omission which by intention causes death. In other words, euthanasia.
Is it possible that Francis was also troubled by the Academy not calling out a decision for euthanasia? The pope responded just a few hours after the Academy released their statement. A rare second tweet of the day appeared, at first only in English, but then later in Italian:
To defend human life, above all when it is wounded by illness, is a duty of love that God entrusts to all.
— Pope Francis (@Pontifex) June 30, 2017
Not long after, the director of the Vatican press office added the following hashtag (again, to the English and Italian version of the Pope’s tweet) in an apparent attempt to let the world know who Francis was talking about:
— Greg Burke (@GregBurkeRome) July 1, 2017
If this was Francis’s and Burke’s attempt to signal discomfort with the Academy’s statement, they have good reason to do so. The statement isn’t, as some have argued, a “disgrace”. But in the midst of resisting the throwaway culture, the Church needed to be much more clear and prophetic.
That impression was only reinforced on Sunday, when the Press Office released a statement saying Francis is following the Charlie Gard case “with affection and emotion” and expressing the hope that “the desire of the parents to accompany and care for their own child to the end” will be respected.
Let’s hope that remains the stance of all Vatican departments, especially if the UK does decide to aim at Charlie’s death because of his mental disability.
Charles C. Camosy is Associate Professor of Theological and Social Ethics at Fordham University and author of Too Expensive to Treat? Finitude, Tragedy, and the Neonatal ICU