A few days after our first child was born, our pediatrician commented at a check-up, “Isn’t it funny that last week you’d never even met Penelope, and now you’d lay down in front of a bus for her?” I recalled this as I followed the tragic story of 10-month-old Charlie Gard who suffers from a rare genetic condition. Britain’s National Health Service (NHS) determined that nothing could be done to save him, but his parents wanted to try an experimental treatment in the United States. His doctors did not believe this was in Charlie’s best interests, took the case to court, and won. His parents exhausted all their appeals last week and it appears Charlie will soon be taken off life support.
One friend posted, “I hope they can find peace in knowing they did all they can for their precious son.” Until I read this, I was having trouble expressing all that is wrong with the Gards’ plight. It’s hard to imagine a situation as befell Charlie’s parents happening in the United States. However, things are different in the United Kingdom. My friend’s comment requires the following qualification, “I hope they can find peace in knowing they did all their government permitted them to do for their precious son.”
Government has an important role in preventing abuse of the vulnerable in society. It’s also self-evident that there would have been long odds for Charlie’s treatment being successful, either completely or to any degree at all.
However, Charlie’s parents clearly held a strong belief that it was in the best interests of Charlie that they pursued this treatment. Tens of thousands of people who donated almost $2 million to help pay for it also seem to have sided with them. The NHS doctors, the institution itself, and the courts did not.
So the question becomes, who should decide what’s best for the child? In the absence of any evidence that Charlie’s parents want to intentionally do him harm or cause him needless suffering, they are in the best position to decide what is best, and they should be free to do so. Why should any government be permitted to deny parents the right to make this decision under these circumstances?
It goes without saying that government should prevent irresponsible parents from abusing their children, but there’s no evidence that is what Charlie’s parents were attempting to do. They appear to be caring, loving parents trying to do what they believe is right. This is a question about how society should decide between two firmly held sets of beliefs – Charlie’s parents’ and the government’s. Society should side with the parents, absent any malice or history of abuse.
This tragic situation also offers insights into the British health care model, i.e. universal health care. The National Health Service (NHS) doctors refused to release Charlie and took this case to the courts. And, the single payer model and one-size-fits-all approach to medicine are the very reason Charlie’s parents had no alternatives available to them in the U.K.
His parents disagreed with the advice they received and wanted options, but none was available. Because this condition is rare, no hospital in the U.K. has any alternative treatment options. There’s little incentive for them to devote the system’s scarce resources. Here in the U.S., treating uncommon or rare conditions can be a major point of differentiation for a hospital. Which, of course, is why they found one here.
The NHS doctors might be right and attempting treatment might be futile. But they bear no risk whatsoever in making that determination—by denying him the possibility of treatment, we’ll never know if Charlie’s parents were right or if the doctors were.
While it shouldn’t be a factor in the doctors’ or the Gard’s decision, it’s also worth noting that even if treatment in the U.S. were unsuccessful, society could very well have benefited from doctors attempting to treat Charlie. We might have gained some valuable insight into his condition that prevented future suffering from patients with his condition. This is the sort of benefit society reaps in a decentralized approach to health care, and one universal health care systems tend not to gain.
A final reason to be wary of government making decisions like this is where it might lead. Ian Tuttle summed it up well:
The precedent established by Charlie Gard’s case will metastasize, as similar decisions have. It will be made to apply to children with more-familiar illnesses and better prognoses; it will be used to dismiss the input of parents whose values and priorities when it comes to medical care and end-of-life issues do not align with those of the state; it may be used simply to clear beds for “worthier” patients in a health-care system with very limited resources. This, presumably, will be “compassionate,” too.
A universal health care system strips away the rights of individuals to make decisions that they believe to be in their or their children’s best interests. Chris Gard, who called his son a “trooper” and “soldier”, described their plight perfectly–“He will fight to the very end, but we’re not allowed to fight for him anymore.”
I would not be surprised if there is some radical egalitarianism involved here, too. Even though these parents have managed to secure the resources to try the experimental treatment for their son, not everyone would be in a position to do that. Allowing them to spend these resources in this way would set a dangerous precedent of some people getting a benefit that is not available to everyone. And if not everyone can have it, then no one can have it, no matter how hard they work for it. Despicable, really.