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Never Let an Ill Child Go to Waste

7 Jul, 17 | by Iain Brassington

The Charlie Gard saga is one about which I’ve been reluctant to say anything, not least because plenty of other people have said plenty elsewhere.  Sometimes they add heat, and sometimes they add light.

Beneath everything, the story is fairly simple: a small child is terribly ill; it is agreed by medical opinion that continued treatment is not only not in his best interests but would cause him positive harm; the courts have determined that the withdrawal of treatment is warranted.  One sympathises with his parents’ fight to keep treatment going – but it does not follow from that that their opinions should be determinative.  Indeed, the courts having decided that Charlie’s treatment should not be withdrawn immediately in order to allow his parents more time with him risks making the case about them, rather than about him.  If treatment is not medically warranted and actually is harmful, there may be something worrisome about continuing it anyway for the sake of his parents.  Their distress is not going to lessened by prolonging the child’s treatment, and even if it were, it is not the proper focus here.

So that’s my hot take on the story itself.  I don’t think it’s anything too radical.  Yet the coverage of the case has been, in places, something of a trainwreck.  Take, for example, this piece from the Chicago Tribune (with thanks to Charles Erin for the pointer).  It’s fascinating for just how much it manages to get wrong, and how mawkish it is, and for what it does with the story to such unpleasant ends.

Charlie’s parents, Connie Yates and Chris Gard, are fighting to bring their son to the U.S. for experimental treatment. They’ve raised $1.7 million on a crowdfunding website to do so.

But Charlie’s doctors, and the British courts, won’t let him go. Medical authorities argue that prolonging his life by keeping him on a ventilator could cause him pain. British authorities won’t even let the parents take him home to die.

Well, yes and no.  I mean, it’s true that Charlie won’t be travelling abroad for treatment, but the tone here is deeply misleading: it’s presented as a kind of custody battle, and it’s no such thing.  It’s about what’s in Charlie’s best interests.  “The authorities aren’t even letting him go home to die” is arguably a rather mendacious way of saying “Charlie really needs the kind of care that can’t be provided at home”.

The article continues:

A Vatican spokesman says Pope Francis also has followed the case, praying that the parents’ desire “to accompany and care for their own child to the end is not ignored.”

But, again, it’s not being ignored.  It’s simply that it’s not the only relevant consideration.  It might not even be all that relevant in the grand scheme of things.  Charlie’s interests are much more important.

And then Charlie’s case is weaponised.

You may find the British authorities outrageously heartless or merely humane in gauging that Charlie’s chances for survival, much less a productive life, are vanishingly slim.

Either way you may ask: Why does the British government have such wide authority over Charlie’s treatment? One big reason: Because the government funds a single-payer health system, picking up medical costs for British citizens. […]

Chris Gard and Connie Yates probably never thought they’d be in this predicament, arguing with the British government about whether they could take a child home to die.

Well, I don’t find it outrageously heartless.  I find it maybe a little emotionally disengaged, but being emotionally disengaged is a good thing in this sort of case, so I’m not outraged.  And let’s be clear: the British government does not have authority over Charlie’s treatment.  It simply doesn’t.  More: though I’ve been out of the UK for a few days, and so may have missed a statement, HMG has been laudably quiet on this case, and even Boris Johnson has managed to stumble into saying something sensible.  Lord knows it pains me to give the current government credit for not pandering to tabloid whataboutthechildrenism, but they haven’t, so I must.

Neither is this anything to do with a single-payer healthcare system like that provided by the NHS.  For sure, some decision has to be made about what treatments are worth spending money on; but multi-payer systems have to make that decision as well.  And the NHS does pay for some staggeringly expensive stuff.  Even if we allow that the way single-payer public health systems work means that there is rationing of who gets what… well, exactly the same applies to every other system, and rationing is not bad – it’s just a matter of the rational application of limited resources.  The US private insurance model is not a bottomless pit of funds either, of course: it results in people having no healthcare at all, or having to find tens of thousands of dollars for a comparatively trivial procedure.  Don’t for one moment pretend that it’s all milk and honey on your side, Chicago.  You know better than that.

Let’s press on:

We imagine many Americans reassure themselves that this country’s largely private system of health insurance would never be so dismissive of a parent’s right to make decisions about a child’s health care. Or deny a parent the right to take a child home to die.

Ugh.  There is no right to take a child home to die.  The right to decide about medical treatment on behalf of your children is rebuttable, on the assumption that parents have an insight into and are motivated by that child’s best interests.  If the parents’ decision is not in the child’s best interests… well, that’s too bad.  A child is not the possession of its parents.

Also, I had to stop reading for a bit there so that I could go and laugh loud and long at the implied idea of a generous and compassionate American private healthcare system.  I mean, really.

But this medical drama, no matter anyone’s opinion, foreshadows the difficult decisions to come if America converts its medical insurance system into a single-payer model. (Note that “single-payer” is a euphemism for government-controlled health spending and care.)

(The phrase “death panels” doesn’t actually appear in this article, but you know that it’s there in the background.  It’s probably been slid in as an acrostic somewhere.)

Now that Obamacare is faltering, talk of a single-payer national plan has surfaced anew in Democratic circles, notably California. In June, the Democrat-controlled state Senate passed a preliminary plan that would have covered all California residents, with no out-of-pocket costs, for an estimated $400 billion annually. That proposal evidently has died. For now.

On a national scale, single-payer would more than triple government health care spending, by $32 trillion over a decade, the Urban Institute estimates.

Obamacare is faltering only because the Orange One has whacked it across the back of the knees with a fire axe.  (Calling it “Obamacare” is telling, too: remember those Americans who supported the Affordable Care Act, but not Obamacare, even though Obamacare was simply a right-wing nickname for the ACA?)  Meanwhile, it might well be the case that government spending on healthcare would increase massively in the US under a single-payer scheme.  But Americans already spend more per head on healthcare than almost anyone else, and public spending would mean that private spending would fall.  Moreover, the economic rationale for a publicly funded health system is simple: people are more economically active when they’re alive than when they’re dead, and when they’re healthy.  When it comes to brass tacks, that’s what makes the NHS tick.

One more.

Single-payer advocates say such a system would be more cost-efficient. To the extent that’s true, it’s partly because single-payer systems often deny expensive, experimental treatments and drugs, forcing patients to pay out of pocket.

That is, NICE waits to see whether a treatment is cost-effective before approving it for rollout across the NHS.  Blimey.  Staggering, isn’t it?  Does that get in the way of experimental treatments?  Naaaaah.  They can be, and often are, provided before NICE has made them official.  The idea that you have to make a special case for something that’ll have unproven benefits is hardly nightmarish.

Oh, while we’re talking about experimental treatments, let me just draw your attention to an article in STATnews about Charlie Gard.

New York hospital said on Thursday that it has agreed to admit and treat the British baby at the center of a life-and-death debate after European courts ruled that he could be removed from life support against the wishes of his parents.

Do tell.

A Columbia physician, Dr. Michio Hirano, is developing an experimental therapy that has been used on at least one American patient with a similar but less severe mitochondrial disease. […]

The admission would occur, Columbia said, “provided that arrangements are made to safely transfer [Charlie] to our facility, legal hurdles are cleared, and we receive emergency approval from the FDA for an experimental treatment as appropriate.”

So the whizzo idea is that a seriously ill child should be sent to New York to receive treatment – no, not treatment, because what’s under consideration has only been used once before, on someone who had a different condition, with an outcome about which we’re not told – so “treatment” seems like the wrong word.  I’ll start again.

The whizzo idea is that a seriously ill child should be sent to New York to undergo a procedure of unknown effectiveness, of unknown safety, that has been used on almost two people before, that hasn’t even been approved as an experimental treatment procedure by the FDA.  Can’t see a problem there.

If Charlie cannot travel to New York, Columbia said, and if the FDA approves, “we will arrange shipment of the experimental drug to Great Ormond Street Hospital and advise their medical staff on administering it if they are willing to do so.”

Well, that’s all fine then.

Incidentally: STAT’s own website says that “We examine controversies and puncture hype”.  Ha.

 

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