Why Charlie Gard’s Case is a Cautionary Tale

Charlie and his parents. Photo credit Press Association.

The case of Charlie Gard is not a complex bioethics case study.  Besides the fact that he is a human being, not a case study, it is an egregious example of government overreach.  I would even consider the possibility that there is a coverup involved.  Intelligent people can disagree on when it’s appropriate to pull the plug on a seriously ill person who isn’t able to vocalize their wishes.  I personally would argue, heatedly, that care isn’t futile if all treatment options haven’t been exhausted, and in this case they haven’t.  However, to me, the fact that bioethics experts disagree on this point is disheartening, but it’s not the primary issue here.  The primary issue is that the state is allowed to determine that an innocent child must die, and his parents’ wishes are irrelevant.  And this isn’t in some third world dictatorship.  It’s Britain.  An advanced Western society that claims to support human rights worldwide.

THE CHARLIE GARD SCOUTING REPORT

As the world now knows, Charlie Gard is an 11-month-old infant with mitochondrial DNA depletion syndrome.  An experimental treatment in the US offers hope, though no guarantees, and his parents want to try this oral, non-invasive medication.  But British courts, supported by the European Court of Human Rights, has stripped their parental rights and decided the baby must “die with dignity.”

The Pain Argument Doesn’t Make Sense

One of the main arguments by the “medical experts” is that Charlie is in pain, and/or the transfer would cause him pain.  As this short editorial in the New York Times suggests, that argument doesn’t hold water.  If he is in pain, is he on pain medication? And if it’s the transfer that would cause him pain, why not give him a dose for the trip?  Or let the American doctors administer the treatment in the UK, as they have offered.  I personally would also argue that pain, even a lot of pain, is absolutely worth it for the opportunity for life, but that’s just me.  And as for suffering, have you heard these parents speak? It is 100% clear to me that they are not negligent in their duties as parents because they are “allowing their child to suffer.”  What an absurd and insulting suggestion!

Why Can’t He Go Home?

I understand that if the government is paying for the health care, they get a large say in when the situation is deemed futile.  That’s one of many reasons why I will never support a single payer system, but it should not apply in this case.  The parents aren’t asking the UK government to continue treating their child.  In fact, they want nothing more than to get the UK to stop treating their child, so that he can be transferred to the US.  Or Rome.  Or their house.  They have raised more than enough money to pay for the transfer, and two separate hospitals have offered to treat him for free.  British taxpayer dollars are not the issue.  So what is the issue? Why can he not leave the hospital, even to die at home?

A Cover-Up?

There are a lot of comments floating about on social media and in the British press suggesting that certain MRIs were ignored, and that the parents were being treated poorly by the hospital.  Why? These details don’t make sense.  I understand that it’s difficult for Theresa May to basically reject her country’s justice system, but there are too many unanswered questions when a child’s life hangs in the balance.  We can only hope that pressure from President Trump and the Pope, as well as the new information about the possibility of the US treatment being beneficial, will change her heart.

Why Do I Care About This?

Besides being furious that a little baby is being given a death sentence, I care about this case because I see it as a cautionary tale.  As an American, I recently celebrated July 4th, commemorating the US declaration of independence from the British.   One of my favorite patriotic songs is “God Bless the USA”, which includes the lyrics — “And I’m proud to be an American / Where at least I know I’m free.”  For now, we are free.  If one of my children were to — God forbid — have a serious illness, we would be able to make decisions about his/her care, including transferring hospitals and doctors if needed.  We could take him/her to another country if we believed a better treatment was available elsewhere.  But there are people, a lot of people, worldwide AND in the United States, who don’t believe in these freedoms.  They don’t believe parents should make the ultimate decisions for their children, and they prefer for the state to decide.  In fact, this article by the National Review has shown that similar situations have occurred in the United States, though none with the prisoner-in-the-hospital aspect.  That terrifies me.  And second, I know that the reason the United States has the potentially life-saving treatment this baby needs is because the more-or-less free market healthcare system we have is what allows doctors to develop such experimental treatments in the first place.  There’s a reason the US is the most advanced and innovative country on Earth, and it isn’t socialism.  I don’t want children in the United States or anywhere to go without healthcare, but a single payer system isn’t the answer.  Charlie Gard has proven that.

I’m praying for you, Charlie.