There’s a cliché that says that hard cases make bad law. Truth be told, there’s a whole list of things that make, or make for, bad law. Highly visible public protests make for bad law. Lack of measured thought makes for bad law. Journalistic pressure makes for bad law. And anything – anything – that uses a possessive proper noun makes for bad law. So even though the Alfie Evans case was not a hard one, legally speaking, a journalist shooting from the hip, in the wake of a highly visible public protest, to call for a new law named after an ill child does not fill one with confidence.
Enter stage right Fraser Nelson, who called last week for something that he called “Alfie’s law” in his column in the Telegraph. (The article is paywalled, but if you’ve institutional access, you can get it through LexisLibrary.) The climax of the piece is this:
[I]f the NHS could do no more for Alfie, should his parents have had the right to take up the offer of treatment elsewhere? At one point, a medic proposed that his undiagnosed condition be called “Alfie’s disease” in his honour. It would be better if the rights of parents in such tragic circumstances were to be protected by parliament, and the legislation called Alfie’s Law.
The run-up to his suggestion sees Nelson telling a story about a friend who developed colon cancer. With only the slimmest chance of survival, she heard about a course of action that offered her a tiny bit more hope:
Clarissa went to a clinic in Spain that offered an alternative treatment she didn’t really believe in – but she argued that a 1 per cent chance at life was better than 100 per cent chance of death. She wrote a list that I still have: Advantages of my current situation. She found no fewer than 23. At the top: “There is more room in my life for hope.”
I wrote about some of the weight that we expect hope to carry, and whether it can manage to carry it, in the summer, in the light of the Charlie Gard case. But I wouldn’t dismiss hope entirely; and of course I wouldn’t begrudge a person the right to try a promised treatment that I think probably useless, especially if all else has failed. By the sounds of it, Clarissa thought it probably useless, too – but I’d go along with her in thinking that something that’s probably useless is sometimes the less-bad or least-bad option all the same.
And yet, there’s a crucial difference between Clarissa’s case and Alfie Evans’s, which Nelson really should have noticed. It’s that Clarissa was an adult, and capable of deciding for herself what was worth trying, and what wasn’t, and what she was going to try anyway even if it wasn’t likely to be worth it. It’s a tenet of liberal thinking that, by and large, people should be able to pursue whatever projects they want, however daft they may be, so long as noone else is harmed, and so long as the reasoning behind that pursuit is authentically the agent’s own. The precise details of what counts as authenticity may differ between theorists, but the overall thrust of the liberal argument is going to be broadly the same no matter who is articulating it.
However, it is perfectly compatible with liberal thought to insist that it does not apply to children, and certainly not to 23-month-old children, because they lack the agency that liberalism sees as so important. Paternalism does not wrong them, because there is nothing else that can do the job of decisionmaking: there’s no problem with overriding autonomy when there is no autonomy to override. This is why the story about Clarissa is almost irrelevant to decisions about what we should think about Alfie Evans.
Almost, but not quite completely, irrelevant. Imagine someone were to say that Clarissa’s parents had rights to decide what kind of treatment she should receive. We would probably think that that would wrong her in some way. It wouldn’t matter whether we were Millian or Kantian here. She has an interest in being able to run her own life as she sees fit, and that interest is the source of her rights to do so. In the Alfie Evans case, there are also interests in play; and those interests may provide the basis of a rights claim. Quite obviously, his liberty or autonomy or ability to run his own life would not be the relevant interest, because at that age, one has none. Alfie did have a much clearer interest in his suffering being minimised. Were there the hope of a cure, then we might allow some short-term suffering for the sake of a longer-term benefit, rather as we allow the discomfort of an operation if it means the hole in the heart will be repaired. When there is no cure available – as was the case here – the interest is simply one of harm-minimisation. That’s Alfie’s right.
His parents also have interests. The question is whether those interests generate a right, and a right of the correct sort. Now, that interest cannot easily be one of self-determination, like Clarissa’s, because they’re making decisions on behalf of someone else. More plausibly, it’s going to have something to do with the nature of the parental bond. But this is where things get tricky. For example, their interest in not being distressed by their son’s death is not likely to yield a right to have him kept alive, and certainly not at all costs. It would be strange indeed to think that Smith’s being given burdensome and futile treatment is justified by Jones’s preference for it. Alternatively, they might have a right in their son not suffering – I’m not sure how one would make that out, but let’s allow that it could be done. But in that case, granted the medical judgement about what would cause more suffering, that wouldn’t generate a right to have interventionist treatment provided.
Neither is any other putative interest all that convincing. An interest simply in being able to decide for a child? Why would we say that that is in a person’s interest, let alone that it’s rights-generating? An interest in being able to decide what happens to one’s possessions? But that implies that a young child is the possession of the parents, which doesn’t seem correct. And even if that’s how the rights-claim does work, it’s not at all obvious that it’s going to trump Alfie’s claim not to suffer. (My cat is my possession; I don’t think I have the right to decide to let him suffer. So much the less for parents and their children.)
My concern is this: that Nelson is happy enough to say that the parents have rights. But that is taken as an article of faith, rather than argument. Moreover, it is possible that framing things in this way risks wronging the child, because he’s not considered Alfie’s rights.
The role of the parent is to protect the child: that is, I think, a prima facie defensible moral claim. The law in England reflects this moral claim; it gives parents the right – or what one might term a quasi-right – to decide what treatment to accept on behalf of their child insofar as that they are presumed to be the best judges of the child’s best interests. In other words, it’s not really the parents’ right at all, but the child’s right as expressed through the parents. And the presumption is rebuttable. Sometimes (negatively) parents do not act in the best interests of their children, and sometimes (positively) they act against those interests. Sometimes this is because the parents have been surrounded by, been given poor advice by, and been taken advantage of by, the unscrupulous and the unhinged. I wonder whether exactly that has happened in the Evans case.
Either way, though, the point is that parental “rights” are – morally – no such thing: we might call them rights for the sake of ease, but beneath the surface, they are not rights at all. That’s why I labelled them “quasi-rights” a moment ago. They’re better understood as duties or responsibilities. Parents have rights only to the extent that the child in their care has rights; their rights are a manifestation of the child’s rights: and those rights are built around an interest in being protected from unnecessary suffering. And that’s what Nelson’s column misses. He locates the rights with the parents. The child, curiously, is missing almost entirely from his consideration, except as the field on which parental rights are realised.
I think that that’s getting things precisely the wrong way around.
Others have made a similar mistake. Peter Saunders’ post over at the CMF blog is, for the most part, admirable – credit where it’s due: I think it’s the best thing he’s written in a long time, and it’s important to note that while the CLC has caught a lot of flack in this case, not every Christian organisation is saying the same thing – but he, too, succumbs to the mistake of framing his conclusion in terms of allowing parents to decide what to do, which makes it look as though they hold rights over the child, rather than on behalf of the child. The complaint that the intervention of the courts is paternalistic seems to me to be otiose, inasmuch as that infants require, and are not wronged by, paternalism (which, increasingly, I don’t think as bad as some would insist anyway).
In a short thread on Twitter, Andrew Brown strikes me as being perceptive:
The Alfie Evans case makes clear that what the Christian Legal Centre stands for above all is patriarchy in the most literal sense. They oppose children’s rights because these must be upheld by the state against a father’s judgment
— Andrew Brown (@seatrout) April 25, 2018
And there’re riches in Richard Ashcroft’s slightly longer thread, which tackles Nelson’s claim about what the NHS could do head-on:
It’s not a question of the NHS. It’s a question of the best interests of the child. There were extensive court hearings to work this out. So no, we don’t need a magical thinking law. https://t.co/xS47BrbsQf
— Richard Ashcroft (@qmulbioethics) April 28, 2018
What’s missing from Fraser Nelson’s column is the child whose plight ostensibly motivated it. And – as I said in my last post – I fear that court challenge after court challenge also contributes to the erasure of the child. Journalists shouldn’t build their columns on top of kids; and to do so in the cause of a law named after one of those kids is grimly ironic.