PARENTS OF CHARLIE GARD GIVE UP THEIR LEGAL BATTLE TO SAVE INFANT SON.

Government has no business in heartrending tale

The plight of British infant Charlie Gard has been big news south of the border, and little wonder. One of the few positive outcomes of the 2016 elections has been to force Republicans to consider collectivist approaches to healthcare funding that to them are ideologically anathema, but likely necessary to keep their constituents from rioting. You sometimes hear the term “single- payer” floating around. Health-care systems like Canada’s and Britain’s are getting positive notices.

Chris Gard and Connie Yates’ story, on the other hand, reads like something Sarah Palin would dream up to argue against socialized medicine. The parents of not- quite- one- year- old Charlie Gard wanted to pursue experimental, extremelong- shot treatment in the United States for their son’s almost certainly fatal genetic condition, called mitochondrial DNA depletion syndrome — on their own dime, using more than £1 million in crowdfunded donations. London’s Great Ormond Street Hospital wanted to turn off his ventilator. The courts sided with the hospital.

The treatment would almost certainly not work, Mr. Justice Francis ruled. ( The American doctor doesn’t disagree.) Charlie “can probably experience pain,” he concluded, and ought to be allowed to “die with dignity” — whatever that’s supposed to mean to an unconscious, brain- damaged baby. Charlie’s parents claim the hospital wouldn’t even allow them the dignity of spending his final hours at home, or at a hospice. And those hours now seem to be at hand. On Monday, Charlie’s parents abandoned their legal battle.

This always struck me as indefensible. And Britain can be a weird place when it comes to certain freedoms that Canadians and Americans consider fundamental. So I’ve been rather surprised at how many people on this side of the Atlantic seem to approve of the hospital’s and courts’ decisions.

In an excellent piece at Maclean’s, Alheli Picazo argued the case highlights various fallacies in the way we think about illness — the idea that Charlie is “fighting” and thus must be fought for, for example — and suggested his parents would be better off rejecting vanishingly faint hopes, accepting the inevitable and taking comfort in the “quality time” that would afford them.

“Those who suggest there is ‘ nothing to lose’ in seeking ‘ alternative’ treatments are not allowing themselves to see the intangible, irreplaceable ( positive) things that remain, all of which they forfeit to follow a mirage,” she wrote. “Yates and Gard are both victims of this dreadful, depressingly common, trap.”

Of this, I have no doubt. Human beings are lousy at coping rationally with all kinds of things, death most of all. Surely it does not follow, though, that human courts and human governments should be charged with solving the problem. Not to say any British court has misinterpreted any British law — it seems pretty cut and dried, for better or worse — but courts sometimes get things terribly wrong.

I’m reminded of Judge Gethin Edward’s 2015 ruling allowing a mother from Ontario’s New Credit First Nation to withhold chemotherapy from her leukemiaafflicted daughter, J. J., on grounds she had an “aboriginal right ( to) pursue traditional ( aboriginal) medicine.” It was shockingly incoherent. No one had questioned that right; the issue was withdrawing chemo. And the alternative quackery being pursued included a distinctly non- Indigenous variety peddled by a muchdiscredited Floridian con artist. ( The ruling was never appealed.)

There are few rights more fundamental than the right to raise your own children, absent extraordinary circumstances, and far too often, in all kinds of different ways, the government buggers it up. As such, I’ ll even entertain the idea that parents l ike J. J.’ s should be left alone. But when it comes to foregoing highprobability treatments when the alternative is all- butcertain death, I ultimately come down on the side of intervention: give the kid a chance to appreciate or rue the decision as an adult. By the same token, I can’t possibly support intervening to stop parents like Charlie’s from pursuing the most extraordinary and unlikely methods of saving the only life he’ll ever have.

Those who fetishize Britain’s National Health Service or Canadian medicare don’t like to admit it, but a properly run universal health care system is a ruthless, unfeeling enterprise. It involves telling people the government won’t pay for treatment X, Y or Z because the chances of success simply aren’t great enough to justify the cost to the public, even if the alternative might be death. It puts a price on human life. And while Canada’s health- care system could function vastly better than it does, that basic deal strikes me as entirely defensible — just so long as citizens are free to strike out on their own, or on their children’s behalf, if the state isn’t willing to foot the bill. The treatment Charlie Gard’s parents received strikes me as a serious breach of that very fundamental contract between government and the governed.

‘(CHARLIE) CAN PROBABLY EXPERIENCE PAIN’ ... AND OUGHT TO BE ALLOWED TO ‘DIE WITH DIGNITY.’