Faith & Culture / The Long Versions

When a Child Dies

Image: Pope Francis cradles an infant in Rome. (CC) Catholic Church of England and Wales.

In our increasingly post-mortal world, the death of a child is a tragic anomaly.

This is a credit to medical science in the late 20th and 21st centuries. Reach back no more than three or four generations, and you will find that most families, even the wealthiest and healthiest, were riddled with infant and child mortality.

But there is also something guttural about witnessing the death of a child, that even our ancestors would have felt. It is the feeling that death itself is something strange and terrible, and for death to visit children is not merely tragic, but repugnant. One may attribute this to the protective instinct, whereby any human may take dramatic risks to preserve the lives of infants and children. But in the faith context, we might also appeal to a spiritual sense: death itself is somehow evil, a perversion of the natural order, rather than a part of it.

It is, perhaps, from this Christian ethic of life and death that life becomes so highly prized. Among some Christians, there is an inclination to guard life “from conception to natural death”. And critically, what is prized there is life itself – an abstract spiritual good, independent from quality, function, and social participation.

One can argue whether this concept of life is accurate, but for our purposes let it suffice that it is there, and one reason why the case of Charlie Gard is hotly discussed among the religious, and particularly among Christians.

But before continuing, let us establish what Charlie Gard’s case is not about, as it is clouded by a flurry of misdirections, irrelevancies, accusations, and political posturing.

Socialised or single-payer healthcare.

If there’s anything that people of faith should kick into the long grass, it’s this.

Contrary to the suggestion of American Vice President Mike Pence and others, there is no evidence that Charlie Gard’s situation may be different if he was in the hands of a health service which relied more on private funding or user payments. One of the hospitals offering Charlie a chance at further medical treatment – the Bambino Gesú in Rome – is publicly funded and free at the point of use. There are simply too many factors which operate parallel to, or independently from, the source of a hospital’s funding.

For instance, a panel such as the one operating at the Great Ormond Street Hospital (GOSH), which is arguing for a removal of Charlie’s life support, could operate as such in a private system as well as in a public system. There is no particular reason why government control should imply that the Hospital make a decision one way or another, and the British and European courts could have compelled GOSH to act differently. A private hospital operating in the UK would have followed similar guidelines and would probably come to an identical decision.

Moreover, it is not a funding issue. GOSH has noted that they considered nucleoside treatment (which Charlie’s parents are now seeking elsewhere) and deemed it unviable.

I suspect the origin of this misconception is a conflation of the American legal principle of parental rights with the American health system, and a conflation of the UK legal principle of community rights with the UK health system. There are no necessary links here. One can easily find single-payer health systems which would allow a greater scope of parental choice than in Britain’s NHS. (There are also private systems which would not, but the scarcity of private systems in the developed world makes comparison difficult).

The Right to Life.

Since many defenders of Charlie’s parents’ position come from “pro-life” factions, it may be assumed – especially by outsiders – that Charlie’s right to treatment is a “Right to Life” issue.

The primacy of the Right to Life is affirmed by the European Declaration of Human Rights, and, I suspect, by any doctor at GOSH with an interest in ethics. Nobody wishes Charlie to die. Moreover, and most critically, nobody is suggesting Charlie is killed. The withdrawal of life support from a dying patient is not “Euthanasia” (to which the Catholic Church, for instance, objects).

Some of the confusion in Christian circles seems to proceed from Christian judgements on the artificial intake of food and water. It is a common Christian principle that artificial nourishment should be accepted and incorporated into treatment as a matter of course. However, Charlie’s non-ability to receive nourishment on his own is not a material issue in this particular debate. Charlie’s condition itself is terminal. The artificial nourishment is not of itself ensuring that Charlie lives. Thus, his death would be “natural” according to most Christian understandings. (It may be worth noting that Charlie is also receiving ventilation support and constant monitoring).

It is also a common Christian principle that utilitarian judgements should be avoided. This is a touchier subject, because UK medical, legal, and political language tends to be dominated by utilitarian ideals. GOSH’s public statements on the case throw up several utilitarian arguments which are not material to the Christian ethos, such as predictive judgements, the avoidance of pain and suffering as a primary objective, and the phrase “quality of life”. However, objecting to GOSH’s fundamental position on this basis represents a stubborn inability to understand that position: namely, that the nucleoside treatment proposed by his parents is unlikely to provide Charlie with any notable change to his condition. (I do not intend to make a judgement as to whether this position is right or wrong, only to note that this itself is not a position which is defensible only in a utilitarian structure, but one which is defensible by mainstream Christian ethical frameworks such as the directives of the US Conference of Catholic Bishops [56]). Christians should not assume that all judgements made with some utilitarian considerations are therefore bad.

It is particularly morally repugnant to characterise Charlie’s death, as envisioned by GOSH, as an act of murder, or to characterise the doctors and medical officials at GOSH as murderers. No moral or ethical universal, and certainly not the Right to Life, can justify this.

Christian moral imperatives which may insist on Charlie’s fate (one way or another).

There is a key difference between morality and ethics. The fact that Charlie Gard’s case has ethical parameters is not disputed. But in terms of Christian morality – namely, a right and a wrong according to a framework of sin and grace – the parameters are sketchy and misleading.

From a strictly orthodox perspective of Christian morality, there is no single requisite position on Charlie Gard. (This may be extensible to all natural law morality systems, but I will stick to what I know).

Why? Firstly, there is no widely accepted moral requisite that Charlie’s life is sustained or not, as noted above. Secondly, and perhaps more controversially, there is no widely accepted moral requisite regarding the overarching argument as to whether GOSH or Charlie’s parents have a final say on Charlie’s fate. It is correct that Christian morality highlights the rights of the family, and of the parent, above those of the hospital, state, or any other institution or body politic. But to run down that particular rabbit hole distracts from what is (in this case) the essential human right, that of Charlie Gard himself. When it comes to Charlie’s life and death, the transference of Charlie’s rights to his parents is not guaranteed by any mainstream Christian moral principle. There may be cultural principles – especially in America – but this is a different argument entirely.

Thus, how Charlie’s rights are interpreted – and who has the right to interpret them – is a question which, I suggest, should be discussed independently of moral principles and solely in the ethical sphere.

This is not to say that one could not form a moral argument regarding Charlie Gard, at least as an intellectual exercise, but one probably should not. An application of moral incumbency, either onto Charlie’s parents, GOSH, or the situation as a whole, has an air of judgement which seems inappropriate given the above considerations.

So, what is it about?

There are two main considerations:

(1) whether the nucleoside treatment is a reasonable response to Charlie’s condition, and
(2) who directs the actuation of Charlie’s rights when his own judgement is absented.

Though I have already outlined some of the difficulties regarding (1) above, it is worth noting that there are significant disagreements on this topic at the highest levels in the Christian faith. The Catholic Bishops’ Conference of England and Wales and The Vatican have taken a position backing that of GOSH. But Pope Francis quickly countered this with a statement of his own in support of the parents, prompting the involvement of Bambino Gesú. A day following Pope Francis’ statement, President Trump offered his own assistance, and the American Evangelical movement seized the opportunity to characterise the case as a Pro-Life issue (the limits of which I have outlined above). I do not particularly understand Evangelical theology, but I do believe there is a sophisticated argument from some Evangelical quarters for the proportionality of the nucleoside treatment, independent of other considerations.

On the other hand, American Evangelicals have also argued to the contrary in less urgent cases, which suggests to me that their arguments are more directed at (2). This makes sense to me, from my basic understanding of Evangelical principles. Those Christian traditions which prize the family above all other considerations will naturally see Charlie’s parents as the de facto actuators of Charlie’s rights, and thus, the prime – and perhaps sole – judges of Charlie’s fate. And, if Charlie were an American in the US, this would be the case.

Whether, in the case of a medical life-or-death situation, family members or doctors hold the final say is governed by a wide variety of legal and ethical principles. What is undisputed is that Charlie’s rights belong fundamentally to Charlie himself. Also undisputed is Charlie’s inability to exercise those rights, not merely due to his condition, but simply his age.

To most American observers, it seems obvious that a parent holds the cards in this situation, but this is simply not the case in UK law. I do not see how this makes UK law less moral (see above), and while there are persuasive arguments in favour of parental control, I would further argue that parental control does not invariably result in a promotion of the individual right to life. Some members of faith groups in the United States and elsewhere have proactively refused life-preserving treatment to children on this basis. This has been evident in the religious anti-vaxxer movement and fundamentalist Mormonism. Though such destructive tendencies are relatively rare in mainstream Christianity, it is worth recognising the dark side of parental rights. We do not, alas, live in a world where parents always act in the best interests of their children, and it is widely recognised (even in the US) that society has an obligation towards children which circumvents parents when necessary.

Under UK law, this aspect of social responsibility is greatly emphasised. One should not, as noted above, conflate this with “state control” or “the government”; my own libertarian ideals would have little time for any such thing, regardless of the ethical principles at stake. But it is probable that the courts will continue to back GOSH’s decision, and unless Charlie secures an exemption from UK law (such as via Vatican or American nationality, as has been proposed) it seems likely that he will die without receiving the proposed nucleoside treatment. As a legal or ethical principle, given all the above, I think it is important to state that, in a Catholic Christian understanding, this is not wrong. Neither, necessarily, is it right. It is ethically defensible and morally neutral, and that is all.

Desire

But there is another level to this argument which perhaps we miss, unless your name is Gard, or Pope Francis.

Pope Francis’ argument is not that of the Evangelicals. It is not a “Pro-Life” argument. It is not moral, nor ethical. Perhaps it is about human rights, but I suspect it appeals to something far deeper and more emotive.

Charlie’s life, in the faith understanding, is not a static entity. It did not begin with his birth, and it will not end with his death. Charlie’s life is the life of his soul, which is experienced in a dynamic union with his parents, his society, and his world. The fact that Charlie is unaware of such things does not make them irrelevant to his being. Even the most determined secularist recognises that we live in a system far beyond the understanding or control of any one of us. We are a people of relationship, who find meaning in love.

If one reads Pope Francis’ statement carefully, one can see that he does not, as some have, trumpet the rights of the parents to make a decision regarding their child. Those who see his comments in an identical current to principles of American law are missing the point. He does not use the language of right. Rather, he uses the language of desire, an errant but powerful emotion.

For many people of faith, desire is something to be avoided or shunned. But Francis is sensitive, in this instance, to the elusive grace of desire. Desire is the key to envy, lust, and – some might argue, in this case – a lack of prudential judgement. But it is also the key to love.

I suspect that if you asked Charlie’s parents what is right or wrong, they might not have a direct, well-reasoned reply. If you asked them what ethical principles inform their decisions, they might be positively disinterested. They are motivated simply by a desperate prayer, hoping for a miracle that might help them to share love with their son, to bring him into his world, and to fulfil their vocation as parents.

I like to think that, in their situation, I would take a more rational approach. There is love in this as well, perhaps, even, a greater love. But to be driven by such desire is as inarguably good as the greatest medical minds of Great Ormond Street.

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