Charlie’s War

In March, I wrote a piece titled “The Unavoidable Realities of Healthcare” where I argued that the real problem of health policy is “who should decide.”

‘The question we should ask as a country is not: “Should care should be rationed?”; because care has to be rationed in one way or another. Rather, the questions we should ask are: “Who should be making these decisions?”—and—“By what criteria should they be made?” In a single-payer health system, the government does the rationing. Government boards, panels, and regulatory bodies decide which patients will receive priority spending. In a pure free-market system, the rationing is done by the market, based on whether someone can afford the care they need or want.’

Well, this week the British government answered that question for the NHS in a deafening judicial decision: sentencing a handicapped child to death against the will of his parents.

The case surrounds a 10-month-old, Charlie Gard, and his parents Chris Gard and Connie Yates. Charlie, born healthy, was diagnosed which rare genetic condition. Charlie’s parents raised £1.4 million to fly Charlie to the United States to undergo an experimental treatment[1].

However, the NHS physicians at Charlie’s hospital believed that the transfer & treatment would cause unnecessary suffering, and decided that the humane option was to end Charlie’s short life. Charlie’s parents disagreed.

The case was taken to the British Courts, which ruled in favor of the hospital- and ending Charlie’s life. The parents appealed the case up to the Europe Court of Human Rights- which confirmed the rulings of the lower courts. The Gard’s had their parental rights stripped from them by the government. Charlie’s life was ended on Friday evening.

This case has chilling implications. As Charlie’s parents, they were his guardians and empowered to make medical decisions for him. However, their will and legal authority were superseded by the hospital staff. What’s to say the state will not continue to encroach on its citizen’s rights- superseding not just parental rights but the medical power of attorney?

May the British State now decide that you do not have your wife’s or mother’s best interest in mind and that the humane option would actually be to allow her to die?

The state has no legitimate place to tell a parent their child is better off dead than alive. Outside of very narrow contexts- the state has no legitimate place to tell any individual that they are better off dead than alive.

In an emotional video the parents released in the wake of the court decision they said the following;

“We’ve been talking about what palliative care meant. One option was to let Charlie go home to die. We chose to take Charlie home to die. That is our last wish. We promised our little boy every single day that we would take him home…  Our parental rights have been stripped away. We can’t even take our own son home to die. We’ve been denied that. Our final wish if it all went against us can we take our little boy home to die and we are not allowed… They even said no to a hospice.”

The view advanced by the state is that a life of handicap and pain is not one worth living. That death is preferable to Charlie than to continue in his present state. That death is preferable to Charlie than a last-ditch effort at treatment in the United States. The state presumes to make this decision on Charlie’s behalf when he cannot advocate for himself. The state presumes to make this decision against the will of his parents- the guardians of Charlie’s well-being under all laws of God and men. The state’s view is an affront to every disabled person, every child born prematurely, everyone who has every fought for their life or the life of a loved one.

No free people should tolerate this. A people whose government tells them if their child should live or die is not a free. Doctors are not omniscient- not matter how highly they may think of themselves. Bureaucrats in massive healthcare organizations even less so. Doctors and health systems, “experts” of every stripe, make mistakes- which is why the ultimate authority over the welfare of a child must lie with the parents- not doctors, not social workers, not organs of the state.

 

[1] It is worth noting some of the realities here. Without delving too far into the science; the treatment is untested on this specific variant of mitochondrial disease. Uncharted territory combined with Charlie’s current condition made it exceedingly unlikely the treatment would be successful. Doctors in the United States testified in court and told the parents these facts. Charlie’s parents, with private dollars they had fundraised, still wanted to pursue the treatment regardless of the likelihood of success.

Image from Associated Press Handout

1 Comment

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s