World Report

Doing what we should, not what we can
The Charlie Gard case highlights the dangers of what the Pope calls a ‘technocratic paradigm’, writes Austen Ivereigh

Even as the fate of the baby Charlie Gard again hangs in the balance there is healthy discussion and disagreement about his tragic case among Catholics who might normally agree on other matters. Yet I want to suggest that, despite these differences, we share a common concern.  

But first, I struggle to grasp how some believe that the court-ordered removal of Charlie’s ventilator is euthanasia as defined by Catholic teaching. 

Charlie Gard is terminally ill; whatever happens, he has just months to live. He has no energy in his little body, and depends on the ventilator to survive at all. The fact that the hospital wants to return to court to consider an 11th-hour offer of new treatment surely demonstrates that it doesn’t desire his death.

His parents, incidentally, do not regard his current condition as acceptable, which is why they have desperately sought treatment. The hospital, having explored the option of nucleoside therapy, have concluded that such treatments – including the experimental one offered by a US neurologist – would be futile and of no benefit. The courts, having considered the evidence, have sided with the hospital.

The hospital has been granted permission to switch off the life support. The question is whether the respirator constitutes ordinary (that is, necessary and justified) intervention, or extraordinary (that is, burdensome and futile) treatment, in the distinction drawn by St John Paul II’s classic Evangelium Vitae.

Best interests

This is an ethical determination that depends on clinical judgements, which of course can be debated. But my point has been that the hospital and the courts in reaching the second conclusion have followed a reasoning in line with Evangelium Vitae, and that is the view of the bishops of England and Wales and the Pontifical Academy for Life.

As Michael Redinger, an expert in this area, points out in America: “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.”

Still, pro-lifers will continue to disagree, because there is evidence to make the case either way, and the clinical facts can always be disputed. The Catholic bioethics institute in Oxford, the Anscombe Centre – a place not just of great scientific expertise, but also firm, and prophetic, pro-life witness – has a thoughtful analysis that finds in favour of my view.

But it flags a few disturbing arguments in some of the court judgments that could be used to back suspicions that there is a determination involved here about the worth or otherwise of a disabled life.

But overall, the narrative of a euthanasia-minded state forcing its decision on a heroic pro-life couple fails wholly to capture the painstaking care the doctors and judges have sought to take, both to find treatments for Charlie and to save his life. The fact that the hospital returned to court this week to consider a treatment being offered by the Vatican surely demonstrates that.

But whatever happens, it is not too early to stand back and identify the reason we are debating this question at all. Behind the Charlie Gard tragedy is the challenge of technology, and with it the “technocratic paradigm” that Pope Francis – following his master Romano Guardini – identifies as the temptation of the age.

Charles Camosy, who has written expertly on this question, observes that in our time “a secular medical ethics is becoming more and more comfortable with directly aiming at the death of infants like Charlie”. While I don’t think this is what is happening in this case, the trend is real: Just consider Holland and Belgium, which regularly euthanise disabled babies.

But there is another challenge we have to grapple with: the capacity for technology to prolong life in ways that are burdensome or vitalist. Charlie’s parents were able to raise $2m (€1.7m) for experimental, blue-sky treatment in the United States – and we admire them for it.

But when the neurologist offering that treatment admitted in evidence that it would not benefit the baby, the reaction of many people was: “But surely it’s worth a try?”

Many believed that the determination of the parents to “give it a shot” should have trumped the hospitals’ and the courts’ view that it would not be in Charlie’s interest. Judging by my Twitter timeline, huge numbers of people are frankly outraged that the State should have interposed itself in this way.

But is this not the technocratic paradigm – the idea that if we can, we should? That where the power lies, we should use it?

The technocratic paradigm is a temptation precisely because it offers to reach a good end (in this case, life) by powerful means. It is a mentality that rejects limitation and failure, that chafes at the restriction of possibility.

I am not – God knows – claiming Charlie’s parents have that mentality. They just want to save their son. But much that surrounds this case – the YouTube video, the crowdfunding, the outrage directed against doctors, judges and church leaders – carries more than a whiff of it.

That’s why the words of Archbishop Peter Smith on May 1, echoed by the Pontifical Academy for Life, that while always acting humanely in the interests of the sick person, we have to “recognise the limitations of what can be done”, were so important.

It struck at the heart of the hubris of medical technology. Because we can doesn’t mean we should. Because the means exist doesn’t mean we should reach for them. We must discern – in this case, what is in the best interests of a vulnerable baby.

The classic temptation Satan offers Man is to refuse to acknowledge and accept the truth of our reality, the limits of our nature. (Which is why God chose to defeat Satan through the Incarnation.)

But the temptation remains. As well as being a source of liberation and salvation, technology offers a locus classicus of that urge to flee our limits.

Mentality

It is obvious in the mentality of the Dutch euthaniser and the eugenicists: To reject the apparently ugly reality of disability and deformity by killing off human beings that fail to make the grade.

But it is also a mentality that seeks to prolong life at all costs, to impose experimental treatments on a dying baby, to rage against the passing of a tiny life by clutching at the straws of technology.

Camosy sees in the Charlie Gard case the danger of the first. I see the danger of the second. He is indignant that the hospital and the courts have overridden the parents. I am glad that they have stepped in to impose limits in the interests of the baby.

But whoever is correct in our reading of this case, in another sense we are, surely, both right to detect in our time a twin threat to an ethic of God-givenness and life. One thing’s for sure: there’ll be plenty more such cases in the future.

 

Austen Ivereigh is the author of The Great Reformer: Pope Francis and the Making of a Radical Pope.