Last summer, as the Charlie Gard saga was unfolding, was a slightly strange time to be a bioethicist. Perhaps fortuitously, I was out of the country as matters began to gather pace; I was able to post a couple of blog posts (like this and this), but could generally keep my head down until I’d had time to work out clearly what was what. Eventually, I felt that the time was right to respond to requests from the media for comment. Dominic Wilkinson did sterling work on that front, too. I’d like to think that, between us, we did a pretty good job (he better than I, for sure) of explaining what the moral and legal arguments were, and which were the stronger ones.
Alfie Evans is a child whose position is, on the face of it, very similar to Charlie’s. I’m not going to rehearse the details of his case here. Suffice it to say that he is terribly unwell, and supported by a ventilator. The medical team treating him at Alder Hey hospital in Liverpool has decided the further treatment would not be in his best interests. This is disputed by his parents. As a result, his case has been heard on multiple occasions at all levels of the legal system: it’s been to the Supreme Court twice. Today (as I write this on the evening of the 23rd), the European Court of Human Rights rejected Alfie’s parents’ latest petition.
From what I can tell from the media coverage and the court reports, the decision to withdraw treatment from Alfie is wholly defensible. I would not support his parents’ ongoing legal battle; I think that they should drop it, and that by not doing so, they risk prolonging their son’s suffering. I take it as a given that this is not their intention.
On that front, then, there’s not a great deal to say. But.
There have been reports of supporters of Alfie protesting outside the hospital, which has made things intimidating to other patients and medical staff. There’s a Facebook status update doing the rounds from a woman who claims to have a child in Alder Hey – and why would anyone doubt her? – who reports that there’re people suggesting that Alfie’s supporters should set off fire alarms in the hospital. The BBC has reported that people have tried to storm the hospital. (As several people have asked: What would they do then?)
And, ramping up the weirdness, as I write this – it’s a touch before 9pm now – I learn that the Italian government has granted citizenship to Alfie… for some reason. There have been offers from Italian doctors to keep Alfie on a ventilator, so presumably the idea would be that, as an Italian citizen, he’d be protected by Italian law. But I’m struggling to make sense of this, what with him being in Liverpool. Whatever Italian law has to say on the matter of withdrawing treatment is moot; and – as reiterated in the Court of Appeal last Monday – the Courts are satisfied that the withdrawal of treatment and provision of palliative care should take place at Alder Hey (see paras 21 and 25, and passim).
I’m also a touch curious about how Italian citizenship law would work here anyway. The law itself is visible here. Most of the criteria have to do with descent, marriage, or residence. However, Article 9.2* says this:
By decree of the President of the Republic, having heard the Council of State and following a decision by the Council of Ministers, upon a proposal of the Minister for the Interior, in consultation with the Ministry for Foreign Affairs, citizenship may be granted to aliens where they have rendered an outstanding service to Italy, or where an exceptional interest of the State exists.
I take it as read that Alfie has not rendered an outstanding service to Italy. It must be, then, that it is in the exceptional interest of the Republic that he be a citizen. But what interest could that possibly be? A state might have an interest in protecting its citizens abroad, but it’s hard to see how it might have an interest in making them citizens in the first place. And would the same interest be found in any and every seriously ill or imperilled child? This would be important to know for the refugees who’re still being picked up from the Mediterranean and some of whom at least wind up on Italian soil.
Or… and stick with me on this… it might be that the relevant ministers have seen an opportunity here. They know that offering Alfie citizenship won’t make any difference; its therefore an easy win for them politically. They look magnanimous, leaping to the aid of a dying youngster. Nothing at all will happen to the dying youngster in question, of course, but the gesture has still been made. The Italian elections having been held three weeks ago is a slight wrinkle in the theory – it’s not like there’s electoral capital to be gained – but I don’t have the imagination right now to come up with another explanation.
If there’s anyone out there with expertise on Italian politics and immigration law, please do drop me a line; I’m baffled.
Where’m I going with this?
OK: look. The legal question is straightforward, as is demonstrated by the lack of difficulty the courts at all levels have had in ruling that treatment may and should be withdrawn. The moral question is also straightforward, I would contend. If there is a risk that Alfie is suffering, treatment should be withdrawn; if it is doing him no particular good, there’s no reason to keep it, and so it should be withdrawn on pain of being arbitrary (and, to be blunt, to release resources).
Medical ethics is primarily about the moral standards incumbent upon medical professionals. But I don’t see why it should be about that entirely. It’s also about more general moral reactions to medical possibilities and procedures, and about the moral evaluation of the context in which medicine happens. So I don’t think that I’m stepping out of line from the aims of this blog (whatever they are – I think we’re still making them up as we go) by expressing this stuff.
My worry here is that, even more than in the Gard case, what we see here is a child being bounced around to satisfy the desires of a number of adults, most of whom have nothing at all to do with him beyond membership of a couple of Facebook groups. I’m reluctant to criticise Alfie’s parents, because – though I think they’re terribly mistaken – they’re clearly committed to their son. Those outside the hospital, on the other hand, are much more open to criticism. I’ll go further. There is something grotesque about the protests, and about the Italian move. Mawkish. Saccharine, but with a threatening undertone. It’s horrible, irrational, indefensible, and – for want of a better word – nuts. It would be a morally better world without these responses. But, I suppose, even their protests have something at their core that is not wholly without merit. These are people who do care, notwithstanding that they’re showing it in a deeply counterproductive way.
Lowest of the low, though, are politicians who’re weaponising the case, whether they be in Italy, or here. Tory MP Edward Leigh has just tweeted this:
A UK hospital is holding an Italian citizen hostage and intends to deprive him of life-giving treatment against the wishes of his parents. @BorisJohnson & @foreignoffice must act quickly to let Alfie live. https://t.co/rJtMBGXhzs @ItalyinUK #AlfieEvans #AlfiesArmy
— Sir Edward Leigh MP (@EdwardLeighMP) April 23, 2018
I’ve taken a screenshot, for when – almost inevitably – the tweet is deleted. In the meantime, let’s just satisfy ourselves by pointing out that his intervention is either culpably misinformed (on the basis that MPs have a duty to think before they tweet) or culpably duplicitous; and either way, it’s utterly contemptible. And when there are stories of staff and patients at a hospital facing physical intimidation, it’s dangerous, too.
*Thanks to Stanley Johnson for the pointer.