How Bureaucracies Creep Into Life-and-Death Medical Decisions
Everyone who has been touched by the case of Charlie Gard is in a terrible position. This 11-month-old British boy, born with an extremely rare mitochondrial DNA disorder that has damaged his brain and left him unable to move his limbs, has been in a hospital for months. Now it appears he will never go home again, not even to die. His parents lost their fight in the British courts to bring him to the U.S. for an experimental treatment, and now they have been denied their request to let his family have his last hours at home.
It is all too common, and sad, to see desperate patients submitted to agonizing and useless treatments just to grasp some tiny, unlikely hope at life. And yet for adult patients, that is their right -- to choose the benefit of tiny hope, even knowing the high cost. For children, it is the right of parents to make that choice, not because the parents will always make the best decision, but because no one else cares so passionately for the welfare of a child. Even if you think that Charlie’s parents would be making a terrible mistake by taking him for experimental treatment, you should be troubled by the implications of government abrogating their right to make that mistake.
As I was pondering this case, another quite different piece of news came across my desk: The Journal of the American Medical Association published the results of two authors who modeled what would happen if measles vaccination rates dropped by even a small percentage. Their unhappy answer: “A 5% decline in MMR vaccine coverage in the United States would result in an estimated 3-fold increase in measles cases for children aged 2 to 11 years nationally every year, with an additional $2.1 million in public sector costs.”
This is worrying, because our target number of measles cases in the U.S. should be zero. Measles is a serious disease that can cause fatal complications like encephalitis. It is also preventable.
That’s why I support mandatory vaccination for any child who will go to public spaces like schools and airplanes and amusement parks, allowing exemptions only for medical reasons, or a sincere religious belief that can be demonstrated to extend beyond the desire to get your child out of being vaccinated. 1 Otherwise, the temptation to free ride on the parents who do vaccinate their children will become too large, and we will end up with endemic pockets of illness that we should have stomped out.
But of course that seems to be at odds with my position on Charlie Gard. Why am I willing to let parents make one decision, however ill-advised, and not the other?
Well, because one is a public health issue, and the other isn’t. Charlie’s condition is not contagious, and whatever happens to him, the medical decisions his parents make pose no threat to other people. Leaving your children unvaccinated has serious consequences for others, including death. One group at high risk because of unvaccinated children is infants who aren’t yet fully vaccinated themselves.
Infectious disease was the raison d'etre for the field of public health. While winning that battle did present some sacrifice of personal liberty -- not just vaccinations, but also bureaucrats deciding how your food had to be cooked and your water piped in and your waste disposed of and your abode ventilated -- the immense collective gains in health and lifespan were well worth it. Taken together these public health measures were responsible for more improvement in human health than anything else human beings have ever done. No, I'm not talking about the vast government insurance schemes now found in every rich country, nor even antibiotics, just homely old measures like vaccines and water treatment.
But that brings us back to the sad case of Charlie Gard, because the definition of public health has changed quite a lot since its inception. Now we’re just as likely to think of it as government provision of general health care, or government programs to stop people from doing things that hurt themselves.
And the more intimately the government becomes involved in the provision of general services, rather than simply stopping the spread of epidemics, the more intimate the decisions it will make. I’m not making the crude claim that the NHS wanted Charlie to die so taxpayers would spend less money treating him; I’m sure the doctors who begged the court to say “enough” thought that they were acting in little Charlie’s best interest. But when the government is in charge of providing all the health care, it will develop a whole set of policies and norms for deciding when it will not provide that health care. It cannot be otherwise; if they didn’t say "enough" at some point, doctors and patients would exhaust the entire national budget chasing futile hopes of life.
Britain directly provides health services to most of its citizens, and so its institutions are particularly advanced in this direction; it has an entire agency, the National Institute for Health Care Excellence, which decides which treatments are worth paying for based on a metric called quality adjusted life year. The ability to make coolly rational assessments of benefit, far removed from the desperation of individual patients, is the envy of health-care wonks everywhere. Obamacare’s Independent Payments Advisory Board, which is supposed to come into existence next year, is an attempt to move the U.S. in this direction.
As far as I know, the institute played no direct role in the decision about Charlie’s treatment; his parents had privately raised the funds needed to take him to the U.S. for treatment, and the battle in court was not about taxpayers' money, but about the risk that further treatment would harm Charlie rather than helping him. But the existence of such institutions has a more subtle effect: It establishes that statisticians and government officials are the proper authority over what treatments you may receive. And once we have accepted such a principle where it is obviously logical and necessary, it may be easier to abide its deployment in cases where it is unnecessary. This change in public values may simply be an inevitable side effect of getting the government into the health-care business.
The tragic irony of life is that no one gets out of it alive. The best we can do is to hope for a good death, and at some point, unless you die suddenly, a decision will have to be made about what that looks like. The more government is involved in regulating, subsidizing and providing health care, the more bureaucracy is likely to creep into that decision -- and the more willing we may become to accept the intrusion. Regardless of your opinion on national health-care systems, that’s one side effect we should fight.
Why would I exempt religious belief? Sidestepping tiresome arguments about whether religious belief deserves any special consideration by government, the practical fact is that the number of people whose religious beliefs require them to forgo this sort of medical care is very small, and therefore unlikely to compromise the wider benefits of "herd immunity." There is simply no reason to have what would be a very contentious fight about the status of religion in 2017 America. But parents should not simply be able to check a box to pretend they have a religious objection to vaccines. Those who qualify for this exemption would also be forgoing, say, medical treatment for themselves in case of illness.
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Philip Gray at firstname.lastname@example.org