Charlie Gard at Great Ormond Street Hospital in London. Photo courtesy of the family of Charlie Gard via Facebook

On the Charlie Gard case, the Roman Catholic Church needs to be clear and prophetic

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 causes 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 $2 million to take him to the United States for experimental treatment, but U.K. 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 illustration of our throwaway culture decried by Pope Francis.

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 U.K. 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 U.K. 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 forgone, 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 its statement. It is even more odd that the Academy didn’t acknowledge that what has been decided by the U.K. 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 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 U.K. 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 U.K. 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 its statement. A rare second tweet of the day appeared, at first only in English, but then later in Italian:

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:

If this was Francis’ 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 Vatican's 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 U.K. 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." This commentary was first published in Crux. Read the original article)

Comments

  1. “But Catholic moral theology generally lets those closest to the goods in question decide how to weigh them…”

    Unless there is a remote possibility someone may choose to do something which goes against their arbitrary dictates. Then they conceal information, deliberately misinform, undermine the rights or just plain ignore the wishes of the people involved. Actually trusting people to make their own decisions doesn’t ever factor into it.

    The author makes patently ridiculous analogies and stumps for a purely arbitrary position, by avoiding key facts. Since the baby can’t survive on its own, it is not simply a matter of going to the US for experimental treatment.

    You can’t just place him on a plane. You need medical equipment and personnel just to get him on a plane to survive the trip. This means diverting resources which could be used to save lives which are in far more immediate danger.

    As usual the Catholic Church believe medical expertise and informed opinions are to be subordinate to dogma.

  2. “Little Charlie Gard has been sentenced to die by those who hold power over him in the United Kingdom.”

    Partisan nonsense IMO.

    If you believe in a god who is responsible for our existence (however it happened) and you believe that this same god is all-powerful then your god is responsible for the child’s desperate situation and cares so little for the child that he doesn’t bother to fix the problem. Worse than that – if you believe that this same evil deity has foreknowledge he knew this situation would arise and enabled it; it not just passively permitted it – it enabled it.

    Little Charlie Gard was, like all of us, given no choice about being born to die. Tragically his inevitable death will not be preceded by a full, emotionally satisfying life. The fruits of science are not omnipotent, they are limited by the physical world. If you expect miracles from the scientific process your expectations are unrealistic. Sadly the oft-touted alternative which is both omnipotent and omnipresent either doesn’t exist or doesn’t care.

  3. I found myself thinking a lot about camosy’s column, since I almost never agree with him. And I kept coming back to two phrases: aiming at death, the throw away culture.

    And then I realized what the problem is: it’s camosy.

    This was posted elsewhere:

    Why do I have the feeling that all of the grandstanding in this matter is just that– grandstanding?

    Yes, the case of Charlie is tragic. No, the state should not interfere in the decisions of the parents. Yes, the parents are doing whatever they are doing with private funds…

    For now. But what happens when those private funds run out, as they will, as the religious control-bots find yet another, shall we say, more viable source of click bait and fundraising? Who will pay for Charlie then? Will it be the government, or the prolifers and the religious control freaks? Somehow, I don’t think the latter, but then, I’m a cynic about motivations. 43 years since Roe, billions of dollars and millions of man-hours spent on the political process fighting birth control and abortion and sex education, but not on free birth control. Not on responsible sex education, and helping mothers to term and making adoption services cheap and affordable. You’d almost wonder what they are thinking!

    Not that money is the only issue, though it certainly is an issue. But since we’re talking about money, what about Bibi Rosmaida, appearing in another article on these very pages, who is quite capable of living without life support and without flying to America…

    If only she could get enough to eat?

    What about the hundreds of thousands or millions of kids who every day face death by starvation, or the 21,000 who die every single day of a highly preventable death? Is it a coincidence that the vast majority of those children are brown and live in far away places without access to much in the way of publicity, while Charlie is a white child in one of the most fortunate countries on the world? The $1.7 million that Charlie’s parents have raised from private funds could save an awful lot of those children, very few of whom require life support and millions for experimental treatments, but just three square meals a day.

    but the religious control bots and the pro-lifers seem to be occupied elsewhere.

    One would almost think that this isn’t about the sanctity of life at all, but is about what it is always about: power, money, and dominion.

  4. Partisan religious nonsense, to be exact.

  5. At least two hospitals agreed to take full responsibility for the rest of this baby’s life. One in Rome and one in, I believe, NY.

  6. The Catholic Church offered to help, and a Catholic hospital agreed to take full financial responsibility, per the teachings of Jesus Christ. Did you or your church help, or hurt? If the parents want to accept help for their child elsewhere (and they do) it should be their choice – not yours, not the government’s. Not even if it gives you a “reason” too complain.

  7. They made a token gesture unlikely to mean much. The baby could not be moved without being hooked up to machines. Whether he would survive the effort is highly questionable. When it comes to medical issues, the people who know best are the doctors, medical experts. It was the parents who sought government intervention.

    The Church did neither help nor harm here. However their harm in the medical profession is well known and deserves to be reviled when referenced. The author whitewashed and misrepresented the Catholic Church’s actual stance when it comes to medical decisions.

  8. That’s good, but the same questions still apply.

  9. Again, a Catholic hospital, with doctors and medical experts offered help. What “harm in the medical profession” are you talking about? That’s news to me. A Catholic hospital will not provide killing services for pregnant women or terminal patients, if that’s what you mean. They don’t enforce extraordinary measures where the patient has a DNR, but they will not withhold ordinary measures in order to induce death. That’s no secret, they are moral but if someone doesn’t share those morals they are free to go to an unethical provider.

    As an aside, if I had listened to the doctors and medical experts I wouldn’t be alive today. I am not alone.

  10. Catholic hospitals have a nasty habit in other situations of overriding doctor patient relationship and notions of informed consent. Generally by letting dogma dictate what treatments are or are not available to patients. All done without regard to principles of medical necessity or professional ethics. There is no morality at play here. Simply adherence to arbitrary dictates at the expense of proper care.

    Despite your statement, they have withheld treatment to patients which have resulted in their death or exacerbating preventable harm.

    People seeking urgent care in a hospital do not have freedom to “shop around” for one which isn’t hamstrung by unethical practices like Catholic hospitals. Its made worse by their efforts to buy hospitals up and corner the market in some regions.

    As an aside, you defend hospitals but attack doctors and medical experts. You are lucky to be alive.

  11. Well, that’s a shatteringly dishonest article. Starting with the first sentence (the child is terminally ill and literally no one disputes this, so it was genes and not a court that sentenced him). The second is a flat out lie (it’s a mitochondrial disorder, not a brain disease). Then there’s all the omissions, misrepresentation, amd slander about his current condition (“occassional” seizures? no reference to the extent of the brain damage?) and the “treatment” (completely untested but maybe might slow progression of the underlying disease, with no prospect of healing the damage or the other progressive conditions caused by it).

    But I guess “they’re killing the disabled” plays better than “they don’t want to subject a fragile infant to extensive and potentially painful treatment that will, even in the most optimistic and unlikely scenario, only extend by a couple months his time as a deaf, blind, and immobile infant on a ventilator.”

    Still, there’s a few comandments against this propaganda piece.

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