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After a months-long legal battle, the parents of British baby Charlie Gard have given up the fight to keep him alive.
Their lawyer Grant Armstrong told the UK High Court Monday that experts have said that the "window of opportunity no longer exists."
"For Charlie, it is too late ... treatment cannot offer a chance of success," he told the court.
Charlie's parents Chris Gard and Connie Yates made their decision following the latest medical reports and scans.
After withdrawal of medical support, Charlie Gard passed away a few days later.
Young Charlie suffered from a rare genetic disease called mitochondrial DNA depletion syndrome, which has made him incapable of moving on his own, or even of breathing without mechanical aids. He requires round-the-clock advanced medical care, which England's National Health Service has been providing at public expense since his birth.
There is no known treatment for Charlie's condition. However, there are a few highly experimental therapies which are available only in American labs; Charlie's desperate parents understandably wanted to try one. Being experimental, they are not covered by insurance, national or otherwise, but no matter; the parents managed to raise the necessary funds by a global donation drive.
That wasn't enough: Great Ormond Street Hospital, a world-famous children's hospital in London funded in large part by licensing profits of J.M. Barrie's story Peter Pan, sued the Gards to prevent them from removing their child from hospital care and taking him to a foreign county for treatment at their own expense. The doctors argued that the experimental treatments were unlikely to work, could at best only marginally improve Charlie's severe handicaps, and in general weren't worth the suffering and bother to a sick child. The judge agreed, Charlie stayed put, and his fate was sealed because of the delay.
This sad story has aroused fury across England and the world, as aghast parents look with horror on the possibility that their doctors and governments, sworn to protect their children, instead would fight to ensure their demise. If serious care decisions must be made about how an infant's medical needs are to be met, shouldn't it be the parents who make those decisions? In the eyes of big-state bureaucrats, apparently not: we all belong to the State, and must receive only what the State decides to grant us even if the parents are able to pay for the treatment.
Or so it's being argued, loudly. In reality, the public servants of the NHS are making what is not only a valid moral judgment, but is in fact the only moral decision they could make, given the responsibilities they have been assigned.
First, we need to understand how a single-payer national health care system, of the sort common throughout the Western world and which our own lefties want to foist on is, actually works. It is a government program from top to bottom, much like the military, entirely ruled over by professional bureaucrats and paid for, ultimately, as part of the national budget funded by general taxation and government borrowing.
As with the military, the bureaucrats present a requested budget which then gets tweaked by the politicians based on pressure from their constituents combined with traditional political logrolling. If a region could use a new hospital, it helps if their national legislator serves on a powerful committee, and so on ad nauseum.
But the health care isn't totally a slave to politics, either; the national system does have a legal obligation to at least attempt to serve everybody equally. It never works out precisely that way in practice but they have to try, and generally they do - within the confines of their budget.
As with all things governmental, each hospital has a macro-level budget; each department of that hospital has a budget; each doctor and nurse has a government-worker salary; and there are national budgets for buying this or that other medicine. Central planners decide how much of what will be needed where, and how much they are willing to pay.
Sometimes this works: national health systems tend to pay less for drugs because they negotiate with the drug companies as one entire country. If you wanted to sell a drug to the entire United Kingdom in one massive sale, you'd probably offer a pretty decent price.
Other times this doesn't work: national health care systems tend to run behind in adopting advanced technology, because it has to be available to everyone and that may not be affordable. And for budgeted departments, there is only so much time of specialists to go around, which is why Canadians and Brits wait far longer to see one:
The U.K (60%) and Canada (57%) had the highest numbers of persons who had to wait four weeks or more to get to see a specialist physician. In the U.S., only 23% reported a wait of four weeks or more for specialty care.
What does this have to do with Charlie Gard? Simple: the cost of his care came out of, and hugely drained, a particular budget.
How expensive is it to keep a seriously ill infant in a neonatal intensive care unit? The hospital won't say, but from their description of what they've done, it has to be well into the millions of dollars by now.
If you are a suffering parent, you aren't going to be counting the cost. But if you are the bureaucrat responsible for the care of thousands of sick children, it is your job to balance the charges of one sick child against all the other slightly-less-sick children you could heal with that money.
From the perspective of the government - which, remember, is exactly what a national health service is - some kinds of medical treatment are an excellent investment. Surgery on a child with a cleft palate or a broken leg will pay off enormously; a seriously handicapped child will be restored to full health and be able to lead a productive taxpaying life for decades to come.
Treatment for those already in their prime earning years can also be profitable - medication for diabetics can keep them from losing their feet to chronic damage, thus letting them remain on the job through a normal lifespan. Even a heart transplant can be at least a wash.
Charlie Gard's condition was incurable and his care had been costly, but with his condition, an end was clearly in sight: by all official medical knowledge, he would die within a year or two and the bills would end. The experimental therapy offered no chance that he would ever be cured, but did offer a chance of his continued survival.
That sounds good, but what does it mean for the hospital budget? At best, he would spend the rest of his life hooked up to expensive machines, consuming taxpayer dollars that could have gone to cure countless thousands of other equally innocent children.
Of course, the NHS staff are not monsters; they did provide treatment and comfort for Charlie for nearly a year, hoping for improvement in his condition. At some point, though, you do have to wonder: what is being achieved here, and at what cost?
Given that responsibility, you could have Mother Theresa, Pope John Paul II, and Billy Graham in charge of making the call, and these luminaries combined wouldn't be able to reach a better or more moral conclusion. With a strictly limited pile of money on one hand and a nearly unlimited line of ailing children on the other, we should not fault the bureaucrat who had to make an impossible decision.
Which is why we argue that single-payer health care systems, formed with the best of intentions and run mostly by decent, caring people, are nevertheless inherently evil - because they force fallible human beings to make the kind of decisions that flatly should not be made by any mortal.
This is a fairly new problem - it's only been in the last hundred years or so that most ailments even had an effective treatment, and only since the 1960s that medical technology became so vast, complex, powerful, and expensive as to cripple entire national budgets. When the NHS was founded after World War II, it might actually have been possible for a rich-ish nation to pay for treatment for everyone who needed it: There just weren't that many treatments available to anyone, and none of them carried the astronomical prices medical treatment carries today. That's no longer the case.
Unfortunately, having once established the principle that it is the job of the government to cure all ills, within a very specific politically-approved public budget, yet without publicly thinking about cost in any individual case, it is impossible and inhuman to decide where to stop.
This problem isn't unique to Britain. Here in the US, Nadya Suliman had six toddlers, but wanted more children because she "loves babies." She saved money from taxpayer-funded disability payments and purchased fertility treatments which resulted in her carrying eight babies at once. They were born prematurely, and the high-tech treatment of so many preemies cost the state of California at least a million dollars. Nor was that the end of the story: the welfare department now had another eight clients.
The medical treatment she paid for with her "own money" created a situation which was even more costly for the taxpayers than her life had already been. Similarly, the experimental treatment Charlie's parents wanted to try wouldn't have cured him, it would have "merely" prolonged his very expensive life at taxpayer expense.
These are extreme situations, but there are similar ones happening
every day:
Should the government pay millions for a liver transplant for a homeless wino who ruined the liver he was born with and has never contributed anything to society?
Should the taxpayers of one nation be required to cover the costs of whatever medical treatments is needed by foreign refugees or illegal immigrants who happen to make it through the doors of a hospital?
Should we all have to pay for every last possible lifesaving
therapy
on a 95-year-old dementia patient who cannot be cured and cannot stay
alive very much longer anyway, even though they worked hard their whole
life and contributed to the system for decades on end?
Britain routinely stops treating elderly law-abiding
taxpayers when doctors feel that they're starting to throw good money
after bad.
These issues are not unique to medical care, they afflict every area of government-provided services. Child protection workers routinely get involved in equally knotty questions and end up doing what's best for the budget. Educational personnel end up teaching whatever philosophy they prefer.
That is why these are all the wrong questions. We should not be asking them on behalf of people outside our immediate family, and we definitely should not require such answers of fallible human beings sitting behind a government desk.
Once upon a time we left these problems to God. Modern medical technology has given us more options as well as another nonhuman and equally omnipotent delegate: the invisible hand of Adam Smith. By allowing any person to purchase whatever medical care they can afford to pay for, or to persuade someone else to pay for on their behalf, we save everyone from the impossible moral conflicts of making conscious decisions of life or death in individual cases.
Will that make it so that everyone gets all the care they need? No - but no current system is able to do that either, because there is no end to the need for medical care. There's always one more test, one more procedure, one more opinion from one more doctor to be sought after, particularly since each additional intervention leads to more income for the medical providers.
It has to stop at some point no matter what we do. The question is - will that point be decided on by bureaucrats and judges that you have absolutely no control over? Or will it be decided by the depth of your pocketbook combined with the generosity of friends and strangers? At least you have some control over those, as shown by the Gard family's ability to persuade strangers to chip in for their child's treatment.
All of us should feel a deep and profound sense of sorrow for everyone involved in this sad tale. For Charlie Gard, whose short life was spent in pain and discomfort hooked up to machines he couldn't understand. For his parents, who had to watch their beloved baby suffer and die. For the doctors and nurses, who had to watch without being able to do anything to relieve that suffering - which is why most of them entered that profession in the first place.
And yes, for the bureaucrats, who had to make a decision no mortal man should ever be called upon for. We can't fix the first three - but for the last, there's still a chance to change the road we are on.