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The Charlie Gard case is heartbreaking, but society cant shun its experts | Gaby Hinsliff

The public realm cant function without trust, says Guardian columnist Gaby Hinsliff

Your children are not your children.

They are the sons and daughters of Lifes longing for itself.

They come through you but not from you,

And though they are with you they belong not to you.

Those are the opening lines of Khalil Gibrans poem On Children, and they are sometimes spoken at the funeral of a child which is where, some decades ago now, I first heard them. But they came to mind this week reading about the case of Charlie Gard, the desperately sick baby whose parents have lost a long court battle against having his ventilator turned off. For in a sense, both case and poem are about the same question: to whom do our children ultimately belong, and when is it right for loving parents to let go?

People everywhere will understand why Charlies poor distraught parents, Connie Yates and Chris Gard, are not yetready to do so; why they have clungto the belief that an unproven treatment available in America might somehow work miracles, even when hisdoctors concluded otherwise.

And if all else were equal, the compassionate thing surely would have been to let them try it, if only for the comfort of knowing they did everything they could. If all else were equal, it might not matter that the doctor offering this experimental treatment admitted to the judge that it had a vanishingly small chance of working, or that it hasnt even been tested on mice with Charlies specific form of mitochondrial disorder, let alone children with it. If all else were equal, we could simply accept that this is something his parents needed to do.

But all else is not equal. Charlies doctors at Great Ormond Street hospital testified that he was likely to be in pain; that further treatment would not simply be futile, but could cause further suffering; and that they felt it was ethically and professionally wrong to prolong his life artificially. You can only weep for all concerned in what the supreme court called this desperately painful case, in which the intensity of the parents feelings are so entirely understandable. But it is Charlie who is the patient, the one to whom doctors must do no harm, and in British law, the childs interest always comes before the parents. In this narrow legal sense, children are with you but they do not belong to you: they belong ultimately only to themselves.

None of which, however, deters Donald Trump from wading in where angels fear to tread. The US president broke off from a row about demolishing publicly funded healthcare in his own country long enough to tweet that if we can do anything to help little Charlie Gard we would be delighted to do so. Nigel Farage swiftly followed suit, arguing that this decision should simply be up to the parents, even as Theresa May backed the hospitals right to proceed in Charlies best interests, supported by the courts.

The popes intervention, offering Charlie the services of a Vatican-run hospital, was in some ways more understandable; the Catholic church officially believes in miracles, and habitually rejects scientific evidence where it threatens that belief. But there is something more shocking about politicians interfering in a legal process founded on ensuring childrens voices are heard, and hampering the best efforts of doctors caught in an impossible situation. Populists thrive on pushing the belief that experts arent to be believed, the establishment isnt to be trusted, and your opinion is as good as some stupid judges; it is precisely this belief that everything is broken that allows them into power. But those who have squandered public trust themselves should beware the consequences of undermining it in others.

For trust is at the heart of this. The decision to stop active treatment and allow a child to slip away can never be anything but agonising. But given a relationship of trust between doctors and parents, it can usually be made by mutual consent. This case came to court only because his parents did not accept the professional opinion of Charlies doctors, supported as the courts found it was by an expert team from Barcelona, four British doctors asked for a second opinion and a fifth instructed by the parents. And unfortunately, professional judgments are by their nature almost impossible to prove conclusively right or wrong, except retrospectively. In the end even the supreme courts deliberations come down to a leap of faith: do you trust the medical experts, or not?

Without trust, medicine is useless. Every time you buy so much as a pack of paracetamol, you place your trust in the factory process that made it. Every routine vaccination means trusting that the nurse measured the dose correctly. Every time you rush a wailing baby to the doctor and are told its just teething, you have to trust that they havent missed something serious. And you have to do so knowing that no matter how good their training, nurses and doctors can occasionally be mistaken, ornegligent, or even in very rare circumstances, malevolent. Like anyone else in public life, doctors have a moral responsibility to earn that trust, by identifying and eliminating their own failings.

But without a basic willingness to trust, were all back in the dark ages; unable to allow anyone else to do anything for us, bound by the limits of our own lack of knowledge. Without a belief that experts are, if not infallible, generally more reliable than people with no idea what theyre talking about, medicine cant function. But nor can science, the rule of law, or government itself. And social trust, as the behavioural economist and former Downing Street adviser David Halpern used to argue, is the glue holding the public realm together; people who dont trust others behave badly, because they expect nothing better in return.

Sadly, its hard to see a happy ending to Charlie Gards story. His parents deserve nothing but our sympathy, having only tried to do what anyone might do in heartbreaking circumstances.

But the same is surely true of those Great Ormond Street staff whose lifeswork is saving the children other hospitals cant, and of the courts forced to exercise such a latter-day judgment of Solomon. Every childs life is sacred. Butso, in its desiccated and less emotionally appealing way, is the legal and ethical framework that exists to protect them. We devalue it at our peril.

Read more: https://www.theguardian.com/commentisfree/2017/jul/06/charlie-gard-heartbreaking-society-cant-shun-experts

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