If you’ve been on social media lately, you’ve probably seen someone post about Charlie Gard, the 10 month old London resident who will most likely die soon due to infantile onset encephalomyopathy mitochondrial DNA depletion syndrome (MDDS). For us non-medical professionals, it’s a genetic disease where muscles and the brain progressively deteriorate and lose function, leading to death.
There’s only so much you can do in a situation like this. So Charlie’s parent’s wanted to bring him to the US to undergo an experimental treatment. They made a treatment plan with a leading expert and raised over a million pounds to cover expenses. Under their socialized medicine, though, Charlie’s specialists decided it would be in Charlie’s best interest to not pursue the experimental treatment and remove life support.
Charlie’s parents appealed, but lost their legal battle. They cannot take Charlie to the US or home to die naturally. The State has the final say.
Understandably so, many people are enraged at the State’s usurping of parental rights. I am too. I can only imagine how difficult it would be to receive such a diagnosis for your child, and then to be prevented from pursuing your last hope of treatment. So what’s the point in writing about this?
The Pontifical Academy for Life recently released a statement on this, and some people are losing their minds over it. So let’s clear a few things up:
The issue here is not the removal of life support – in this case, a ventilator. The issue is the State (using that term generally to refer to various local and national legal entities) usurping the parental right to pursue a treatment plan and decide, in consultation with specialists, if and when life support becomes burdensome and should be removed.
Removing life support is not always (though can be) equal to murder. Some of the headlines are absolutely ridiculous on this. Catholic bioethical standards are clear on ordinary versus extraordinary means of keeping individuals alive. We must take advantage of ordinary means of maintaining life. But we are not obligated to pursue extraordinary means of prolonging life when they “do not offer a reasonable hope of benefit, do entail an excessive burden, or do impose excessive expense on the family or the community”.
This is not something we as the public can decide for Charlie, as it’s a delicate line the medical professionals involved need to determine with the parents.
So when The Academy says: “we do . . . have to recognize the limitations of what can be done, while always acting humanely in the service of the sick person until the time of natural death occurs” – they’re absolutely right. Charlie’s doctors and parents seem to disagree about those limitations, unfortunately, which is where the problem exists.
It’s true that parents “must be helped to understand the unique difficulty of their situation”, as The Academy says. That doesn’t mean in this particular case the specialists or State were correct. It doesn’t mean the Vatican “sided with the State” as irresponsible journalists are titling their pieces. But I think we can all recognize that parents naturally would fight for their children. In some cases, they may fight beyond the time when a reasonable chance of recovery exists, which I think the Academy is making a point to recognize as a possibility in cases like this.
What can we gather from this?
Bioethics are extremely complicated. We know that any “act or omission that of itself or by intention causes death to alleviate suffering” is always morally wrong. So no, we shouldn’t advocate for “pulling the plug” to get it over with already. Life support should not be removed to hasten death.
From what I’ve read, that seems to be the problem here. The State seems to be hastening death when Charlie’s parents were prepared to pursue one last treatment that might have been able to reasonably help and improve Charlie’s life. The State is dead wrong to usurp parental rights, that’s for sure. But that’s the problem, not the removal of life support – which is a difficult decision we’re not qualified to make.
We need to be clear in our language, and try to understand this as best we can if we’re going to talk about it.
To learn more about issues like this, The National Catholic Bioethics Center is the best resource I know of to explore these kinds of bioethical issues. You can even email or call one of their ethicists for a consultation if you are facing an ethical dilemma or difficult medical decision.
If you’re left with questions still, let’s talk. And during this extremely difficult and tragic time, let’s pray for Charlie’s family and medical professionals.