"Fresh hope" from US for Charlie Gard?

While world leaders debate the fate of an infant on a ventilator, a New York hospital wants to throw him a potential lifeline — if both the US and UK governments will allow it. The Guardian reports this morning that New York Presbyterian and Columbia University’s Irving Medical Center have volunteered to admit Charlie Gard to administer experimental treatment to reverse his life-threatening condition, if the FDA approves it. Alternately, they will ship the necessary drugs to the UK if they promise to administer it:

The US hospital said it would treat Charlie with an experimental drug pending approval from the Food and Drug Administration (FDA), a government regulator.

It said it had “agreed to admit and evaluate Charlie, provided that arrangements are made to safely transfer him to our facility, legal hurdles are cleared, and we receive emergency approval from the FDA for an experimental treatment as appropriate”.

It added: “Alternatively, if approved by the FDA, we will arrange shipment of the experimental drug to Great Ormond Street hospital and advise their medical staff on administering it if they are willing to do so.”

That’s a lot of government approval just on this side of the Atlantic. The UK’s National Health Service has stuck foursquare behind Great Ormond Street Hospital’s refusal to allow Charlie to be taken anywhere else for any kind of treatment, so the alternative does not appear likely to be accepted either. However, it does put additional pressure on Theresa May’s government to explain why NHS and the hospital are so determined to prevent any other options from being exercised by the parents, who understandably want to see if they can save their son’s life.

What’s not as understandable is why so many institutions seem lined up against their choice. Ethicists have lectured about quality of life considerations, even within Catholic circles, which reflects the odd split at the Vatican over the past week on the Charlie Gard case. Michael Redinger wrote at the Jesuit magazine America that when the experts line up in a case like this, opposing their conclusions risks making life an “idol” rather than viewed in perspective to other “goods”:

To this point, readers might reasonably conclude that if Charlie’s mechanical ventilation helps maintain him so that either he experiences an acceptable quality of life in the eyes of his parents or if his suffering is tolerable on a temporary basis until he is able to access a potentially beneficial experimental treatment, then his parents’ wish to keep him alive ought to be respected.

There are, however, medical treatments that fall outside of the ordinary and extraordinary frameworks. One category includes those treatments that are termed futile or, more accurately, “nonbeneficial,” and it has been an increasing focus of both secular and Catholic medical ethics. Physicians are not obligated to offer treatments that, in their medical expertise, have no reasonable chance of success or in which the harms so far exceed the potential benefits that it becomes inhumane to provide them. To do so violates the ancient maxim to “first, do no harm.” …

The Bishops’ Conference for England and Wales, the Pontifical Academy for Life and Pope Francis have not contradicted the E.C.H.R.’s decision to deny Charlie prolonged life support in order to receive experimental treatment. While expressing sympathy and prayerful support for the Gard family, their public statements have acknowledged that at times medicine is powerless to cure terminal illness. None of these church leaders insisted on continuing artificial life support at all costs, nor did they argue against the proper role of the state to either protect the best interests of children or to resolve disputes between patients, their families and their physicians.

The tragic case of Charlie Gard is one in which some well-intentioned members of the pro-life community reflexively leapt to the defense of the Gard family. In doing so, they unfortunately failed to recognize the nuances of Catholic teaching on end-of-life care. When life is valued so highly relative to other goods, its pursuit becomes detrimental. In effect, life itself becomes an idol.

There are a couple of problems with this analysis. First off, Redinger’s not quite accurate on Francis’ position, about which more later. Second, there are physicians who want to treat Charlie, and the parents want to exercise that option before consigning their son to death, and use privately raised funds to pay for it. They aren’t being forced to do anything, but are being prevented from having access to the patient. It’s the physicians in the hospital that currently holds Charlie that won’t allow it, in defiance of the parents’ wishes, rather than having those services demanded of them. There are no indications that the ventilator is making Charlie’s life so permanently miserable that he can’t be medicated to tolerate it better while those final options are explored. It’s odd that a Catholic ethicist sees “quality of life” as a greater good than life itself, and the pursuit of the latter as an idol rather than the assembled institutions preventing parental choice of a potential treatment.

Edward Pentin reports that Cardinal Carlo Caffarra, the founding president of the Pontifical John Paul II Institute for Studies on Marriage and the Family, has a far different ethical perspective on the Charlie Gard case. The thrust of the courts and the commentary consigns people to being children of human institutions, not children of God, Caffarra argues, and have surrendered to the “culture of death”:

“We have come to the end of the road of the culture of death.”

“It is now public institutions, the courts, who decide if a child has, or hasn’t, the right to live — even against the will of the parents,” he said, adding: “We are the children of institutions, and we owe our lives to them? The poor West: it has rejected God and his paternity and now finds itself entrusted to bureaucracy! Charlie’s [guardian] angel always sees the face of the Father (cf. Mt 18:10).”

Cardinal Caffarra exhorted the authorities to “stop it, in the name of God. Otherwise, I say to you with Jesus: ‘It would be better for you if a millstone were hung round your neck and you were cast into the depths of the sea.’ (cf. Lk 17:2).”

Pentin also reports that the Italian medical association has strenuously objected to the restraints on the parents and the depiction of Charlie’s case:

It recognizes “clinical situations in which the insistence on practicing medical and surgical interventions and treatments is not reasonable, or because it is totally irrelevant to the support of a life that is now ending, or because they are the cause of unnecessary suffering.”

But it adds that Charlie’s illness “is not terminal,” nor are ventilation, feeding and artificial hydration “so hard for him to recommend suspension” as the rulings state.

Why, then, the association asks, should a “seriously ill child be killed in advance of taking away the care he needs?”

“The justification for the irreversible death sentence inflicted upon Charlie is that this would be his ‘best interests,’” it continues, but behind this decision is “a mental attitude that is polluting the roots of medical practice, legislation and widespread sentiment: the idea that human beings, with a low quality of life, have a lower dignity and worth than others, and that it is unreasonable to waste on them valuable resources that could be destined elsewhere. It is the ‘throw-away’ culture of which the Charlie case has become a tragic symbol.”

So what of this last-ditch effort from New York’s medical community? If that fails to move the May government to remove Charlie from NHS custody, then perhaps Pope Francis might up the ante even further by providing Charlie with Vatican residency:

Pope Francis reportedly wants to hand terminally-ill Charlie Gard a Vatican passport so he can be flown to Italy for treatment.

Sources suggest court rulings preventing him from leaving hospital can be “overcome” if the 11-month-old baby becomes a Vatican City citizen. …

One Vatican source told the Sun : “It would be unprecedented if citizenship was granted to Charlie, but it is being investigated. Legal parameters are preventing him from being moved and treated overseas. If that can be overcome, then so be it.”

That doesn’t sound as though the pontiff is just going along with the ECHR, does it? May had better act soon, if she’s going to act at all.