Bureaucracy won a major battle this week. The battleground was Britain rather than America, but the issue is a universal one, for the battle was over the central government's right to deprive a patient, in this case a baby, of medical treatment. It was also a battle by the state to deprive loving, non-abusive parents of the right to determine what's best for their child.
It was a battle no government should ever wage.
The parents of 11-month-old Charlie Gard finally surrendered this week in their fight to assert their rightful control over the little boy's medical care. The confounding question, and the outraging answer, is about why the parents' control was ever questioned. No one ever accused them of being bad parents. They neither abused their dying baby son nor tried to deprive him of care. They had not given their government cause to intervene and imprison him in a hospital, from which they were forbidden to remove him.
As Charlie's parents, they had what should be a universally understood right to determine his care, in consultation with doctors and with the benefit of outside medical opinions if that proved necessary.
They were deprived of that right after the boy was diagnosed with a rare mitochondrial disorder and admitted to the Great Ormond Street Hospital. At first, both his parents and his medical team wanted to allow him to receive an experimental treatment. But after his condition worsened due to a series of seizures, the hospital staff not only withdrew its support, but went to court to remove Charlie's life support in defiance of his parents' wishes. As the legal battle ground on — remember that saying about the wheels of justice turning slowly? — Charlie's parents were prevented from taking him elsewhere for treatment or even just to die in peace. And as time went by, his condition got worse.
There may have been no way to save Charlie's life. The treatment his parents wanted to try in the United States was a longshot. But given his situation, there was no harm in trying. As an increasing number of American states have recognized with "right to try" laws, a longshot is often the only shot, and it is better than nothing for those who would certainly otherwise die. Given Charlie's age, his parents should have been the default deciders about whether he would be better served rolling the dice in this way.
When people argue that healthcare is a human right, they are often making the case for taxpayer-financed healthcare on demand. But Gard's case illustrates the need to recognize a true right of the individual to seek and obtain care without government interference. The state's job, after all, is to protect life. Remember that the founding document of this country demands and takes as axiomatic the right to life, liberty, and the pursuit of happiness. All of a government's coercive power is supposed to be directed toward that end. It is a grotesque and dismaying violation of human rights for a government to prevent a patient from trying potentially lifesaving care where providers are willing to give it.
Death is part of life. Everyone dies. And the deaths of even the youngest patients can sometimes only be delayed, not prevented. When competent doctors encounter certain situations, they understand that they can do nothing better than provide palliative care and let nature take its course.
No one can fault Charlie's doctors for making such a determination in his case. But they are at fault for interfering with his parents' right to seek help elsewhere or to remove him, in collusion with a judiciary that overstepped its moral bounds and what should have been its legal limitations, too. It was a crime against Charlie's human rights and the Gards' parental rights. If Britain's laws or those of the United States need to be changed to prevent such a thing from happening again, they should be.