Yesterday little Charlie Gard’s parents made the incredibly difficult decision to not pursue medical treatment in the United States. The wrenching story of this stalwart family has captured the hearts of people all across the world.
For those unfamiliar with the details of this case, Charlie Gard is an eleven month old boy from the UK that suffers from a rare mitochondrial disease. For the past five months, Charlie has been at the center of an ongoing legal battle between his parents, Connie Yates and Chris Gard, and the medical staff of the Great Ormond Street Hospital. His parents have raised over $1.5 million to transfer him to the United States where specialists agreed to undergo an experimental treatment in hopes of saving his life. Tragically, for months the European court system stood in the way of Charlie’s parents securing this treatment for their son, despite acknowledging the exceptionally loving care they had shown him.
From the Pope to President Trump, millions have weighed in on the question that has underpinned this global debate: Does the opinion of government doctors supersede the authority of parents?
The Gard case has many nuances that make it different from other right to life cases. Still, a central issue runs through all of them: who has the right to make decisions on behalf of children? Where do parental rights begin and where do they end? Who decides the boundary lines of these rights? The government? Medical staff? Society at large?
If the will of Charlie’s parents had been considered five months ago — when they indicated they wanted Charlie to begin experimental treatment — we most likely would not be having this conversation today. Maybe Charlie would have thrived under the experimental treatment. Or maybe the treatment would have been ineffective. The injustice is that we will never know. And more importantly, neither will Charlie or his parents.
As Wesley Smith of the National Review writes, “UK law…gives ultimate decisional power in this kind of disputes to doctors. That is an unfortunate consequence of a centrally controlled healthcare system.” A system that based their determination regarding Charlie’s life on a value judgement – not a medical decision.
Short of a miracle – it looks like this precious little boy’s story might be coming to a close. We must let the questions that define this heart wrenching tragedy inform the way we approach healthcare in the United States.
Are we willing to entrust to the government — both state and federal — the power to make some of life’s most personal choices on our behalf? Do we want millions of Americans to be forced to rely upon a form of socialized medicine where bureaucrats determine what constitutes as “quality of life?”
Although we have few answers or words of comfort to offer Charlie Gard’s parents, we must be brave enough to ask ourselves the hard questions. What are we, as a nation, willing to tolerate when it comes to government interference in the lives of our loved ones? When is enough finally enough?