So the JME has – finally – published the paper by Brierley et al concerning withholding and withdrawal of futile treatment from children in the face of doctrinally-informed objections by the parents. It’s taken a while, but it’s there now.
The essence of the paper’s claim is pretty simply put: if parental preferences run contrary to the medical best interests of the child, then we shouldn’t be too hesitant when it comes to discounting those preferences. Or, as the paper’s conclusion has it:
Traditional mechanisms for resolution of end-of life disagreements based upon local cultural, secular or religious values [are] not infrequently unsuccessful. Protracted dialogue [is] often unable to resolve these differences, while the child [is] subject to pain and discomfort from invasive ventilation, suctioning and multiple injections. We suggest it is time to reconsider current ethical and legal structures and facilitate rapid default access to courts in such situations when the best interests of the child are compromised in expectation of the miraculous. [Emphasis mine – IB]
And this, it seems to me, seems fairly straightforward – albeit quite a limited claim about legal process.
Granted, there is a couple of niggles that one might have with the paper. For example, the authors concede that those parents most likely to object to decisions to end treatment are those from African Evangelical churches. But since members of those churches are more likely to be immigrants, or from other less privileged parts of the community, I wonder whether it’s religion that’s the main signifier here: it might equally well be class. Or it might be other things. (Mark Sheehan makes a similar point – that religion may be a red herring – in his commentary on the paper.) Either way, what counts is a fairly straightforward question about what we should do when it comes to deciding best interests in life-and-death situations. (Steve Clarke offers suggestions about what to do in his commentary.)
I wonder whether the appeal to torture and the Human Rights Act might be a bit of overkill in at least some cases, too.
But a bigger worry might have to with a paradox of publicity. The thought’s this: while it might well be desirable to “facilitate rapid default access to the courts” for the sake of the child’s interests, it might not necessarily be desirable for such a policy to be widely publicised. After all, if people fear that principles important to them may be overridden by medics (whose motives those parents may not completely understand) through the courts (which may be completely alien) – well, in that case, there’s a possibility that they’ll be less likely to seek professional treatment to begin with. Religion – and evangelical fundamentalism in particular – is not wholly devoid of its quack healers and shysters, as you might have noticed. So there may be a paradoxical situation in which a policy designed to protect the interests of some children may end up retarding the interests of at least some others.
Still: like I said, the paper’s central claim seems to me to be fairly straightforward. Straightforward enough for me to be more than a little puzzled by Christina Odone’s response to it in the Telegraph:
Are these parents’ hopes and prayers to be quashed because doctors know best? If they did, that might be an argument in their favour; but too many times they don’t. I have seen first-hand how several doctors’ prognosis was completely disproved; when my half brother Lorenzo was diagnosed with Adrenoleukodystrophy (ALD) the medical experts were unanimous that my parents should resign themselves to his death, within a year, maximum two.
But… but… well, yes, OK: sometimes a prognosis can be misjudged. That doesn’t undermine the idea that, generally speaking, doctors do know best – or better than parents, at least – what is in a child’s best interests. And even if doctors don’t have any greater insight – I’d expect that they did, what with them being doctors and all, but go with me for a moment – it wouldn’t follow that the parents’ views are the best place to look for answers about what to do. Oh, and, of course: anecdote ≠ evidence.
Instead, my parents believed in miracles – in this case, of their own making.
Oh. So that’s “miracles” in the sense of “not miracles”, then.
They studied every experiment that dealt with the myelin sheath – the bit of the brain affected by ALD – and discovered a therapy that had eluded the scientists all along. “Lorenzo’s Oil” may not be a “miracle” cure: it cannot restore functions where they have disappeared. But it does prevent the majority of pre-symptomatic children from developing the dread symptoms.
(Just as an aside, why would you administer anything to a child who was pre-symptomatic?)
That’s pretty miraculous, most parents would agree.
If my parents’ story is exceptional (enough to be turned into a Hollywood film) it is not the only time that parents’ prayers have triumphed over doctors’ prognoses (and that’s when the diagnoses are correct, which is not always). Doctors don’t like this kind of miracle, though. It shows them up. The only miraculous cures they believe in, or will tolerate, are those of their own devising.
That final sentence is simply paranoid, and the commenters on the piece do a nice job of taking her to pieces. And is there any evidence that it’s prayer that triumphed over prognosis? I mean, really? I’m willing to accept that sometimes prognoses are wrong; that there’s a lot about the well human body that we really don’t understand, and more about the ill body; and that all that might mean that people whom we expected to die don’t, and sometimes recover completely. That that shows the effectiveness of prayer, though… well, it doesn’t. (I was on a programme on BBC Radio Manchester a few months ago with a doctor who seemed to believe that unexpected recoveries demonstrated divine intervention. A doctor. Yikes.) But she admits herself that it wasn’t prayer that did the trick: it was research into myelin. I’m going to guess that none of the useful research had prayer as part of its methodology.
Just a hunch.
In fairness to the Telegraph, their news item about the paper, to which Odone is responding, is reasonably fair (though I wonder why it was by the religious affairs editor, rather than the health editor). Even the Daily Mail‘s coverage isn’t bad – certainly a lot better than it was last time the JME got mentioned there, in respect of The Paper Of Which We Do Not Speak. (You know the one. That one.)