Charlie Gard

Friday 14th July 2017

The case of baby Charlie Gard is one of those seemingly intractable moral issue that arise from time to time and or which we crave some kind of Solomon like wisdom to put us out of our misery. If you’re anything like me, just considering creates a mental state somewhere between muddled thinking and down-right panic.

Charlie suffers from the snappily named infantile onset encephalomyopathic mitochondrial DNA depletion syndrome, happily short-handed to ‘MDDS’.

Here’s what’s going on:
(The summary below is lifted from this page, posted by the interestingly achronised GOSH (Great Ormond Street Hospital – although Good Sense of Humour might be equally appropriate).

Charlie’s brain, muscle and ability to breathe are all severely affected. In addition, Charlie has congenital deafness and a severe epilepsy disorder. Charlie’s heart, liver and kidneys are also affected.

Charlie has severe progressive muscle weakness and cannot move his arms or legs or breathe unaided.1

Charlie’s eyelids cannot stay open and his eyes point in different directions because of muscular weakness. Charlie’s retina would struggle to develop and his brainwaves suggest that he is not going to be able to lay down normal visual patterns that should be learned at an early age. Eyesight is not something you’re born with, it develops over time.

In short – Charlie is screwed – all reason tells us that. However, contrary to what the Enlightenment would have us believe, we are not just rational beings. As the advertising industry knows all too well – we emotional beings as well; in fact, the empirical evidence suggests that we are more often emotional than rational and this is precisely what’s happening here. Charlie Gard’s plight drives straight to our existential core. Do we have the right to play god? Does the social group have the right to trample all over the wishes of parents? At what point, if any, do we just pull the plug?

For the sake of the record UK law says we do. Broadly speaking, if, in the opinion of the law (as interpreted by the sitting judge), Charlie’s best interests are served by not continuing with treatment then that is what must happen. Harsh though it may seem to the emotional beings that lurks within us, no amount of hand-wringing from his parents or raging from pro-lifers can save him. It’s all down to that uncomfortable truth; cost benefits – the Utilitarians would have grasped this from the outset.

There are many examples of how this works but one that sticks in my mind particularly was the arguments that arose around a thing called the Automatic Train Protection (ATP). ATP is a system which is designed to automatically apply the brakes should the driver either have failed to do so at a signal requiring it or if for some reason they are incapable of doing so. The debate in the UK really heated up following the Paddington rail crash in London (aka Ladbroke Grove train crash) in 1999 in which 31 people died from the impact and subsequent fire. A public enquiry found that had ATP been deployed then the crash would not have happened.

But here’s the thing – someone somewhere in a darkened room within Britain’s recently privatised rail network had made a nasty little actuarial calculation. Taking over all cost of the system and dividing by the average total number of deaths on the rail network, it just wasn’t worth it. Travelling by train is pretty damn safe. There are always catastrophes that skew the figures but in the 18 years since 31 perished at Ladbroke Grove total deaths have been less than 50 – or, as the acturists would like to say, an average of 2.77 per year.

Here’s the numbers from the relevant decade (1990s). When estimating the value of investing in road safety the UK government calculated the price of a human life at £860,000. The cost of implementing ATP was around £6bn pounds which put the cost per life at £14m – £13.14m too high. Unsurprisingly ATP was not implemented.

We can be fairly certain that these kind of sums are done in NHS Trusts up and down the country on a regular basis. Is this treatment or drug worth the life it saves? All too often, as with ATP, the answer is no. Tough for the terminally ill cancer patient robbed of a few extra months by the hospitals refusal to administer a drug costing over a £100 per dose, tough for the relatives of those who died at Ladbroke Grove and as tough as hell for the parents of Charlie Gard.

But it’s not just about pounds and pence however useful this reductionist argument might be. No discussion of this sort is complete without a consideration of the social costs – setting the sums aside, is this what we want? Or, more properly, is this what we need? If we measure the value of our decisions by the common good the monetary argument recedes.

So, what social benefits are there to keeping Charlie Gard alive? It has to be said that, for a brief while at least, it would sooth the collective conscience. Our hands will not be stained with Charlie’s blood, we shall not be mired by the guilt of his death. We will also be able to rejoice in the pleasure of giving some desperately distressed parents what they want. But will we have done good?

If, as seems the likely outcome, Charlie is allowed to slip away peacefully, with the best possible palliative care for him and the best possible pastoral care for his parents, is this not a better result?

In the end surely yes. The moral arguments around the right to life must not preclude, in certain circumstances, the right to end it – or perhaps better put, the right not to preserve it. The absolute arguments of the pro-lifers are of no use to us here; life at any cost does not serve the common good. If, in the end peace comes from being reconciled to the truth then we must accept that we shall, at first be angry, then in denial, then depressed before emerging the other side.

As social animals acting socially means not only having to take unpalatable decisions for the common good but ensuring that those who might suffer from these decisions are cared for. There is a certain nobility in Chris and Connie’s stance which is hard to gainsay, but by denying themselves access to the truth of Charlie’s condition they are denying themselves the chance of ever being reconciled to it. It is our collective responsibility to help them and the best help will come not from emotional, crowd-pleasing outbursts from Donald Trump, nor from dogmatic proclamations from the Pope but by enbuing them with a sense that, whilst we feel their pain, their well-being and the greater good will have been served by letting Charlie go.

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Martin Roberts

Martin Roberts is the founder of TTSLP.

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