Charlie Gard and difficult medical decisions

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.

It’s tragic.

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.

To Life,

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11 thoughts on “Charlie Gard and difficult medical decisions”

  1. You’re right that the internet lost its mind over the statement from the Vatican! But bioethics have become an extremely complex subject. Thank you for sharing.

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    1. Bioethics certainly get more complex as technology advances! But thankfully we don’t have to be experts to realize when people are going crazy needlessly. The people I’ve seen sharing “the Vatican sided with the State” type sentiment happen to be people who may not be familiar with end of life principles. It troubles me how quickly some people are to share emotionally explosive articles without taking the time to research if they’re true. I really hope this sad issue helps people to educate themselves more on end of life topics!

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    2. Bioethics can definitely be a sophisticated issue with our ever-developing technology. But the Catholic position on this is actually extremely clear. We cannot hasten death, but we do have to let people die naturally when means of keeping them alive are burdensome, extraordinary, and are unlikely to do anything but prolong what is naturally happening. That’s why I’ve found the emotionally-charged headlines so problematic, because many people seem to not understand that. As sad as this situation is, I hope we learn a bit from it!

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  2. This is so needed. I keep looking at the articles and the petitions floating around, thinking: “I do NOT know enough about this situation, or about the morality and ethics of this decision.” I’m so glad you shed some light on this. Praying for this poor family and sweet baby!

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  3. It’s so hard when the general public started taking sides, because we really have no idea what’s going on. We only have what the news agencies want to share with us. So our judgement is often skewed and biased.

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  4. Thanks for your piece–I think the question of parental rights is not one that I have seen addressed as here. Also, the ethics are a big part of the story (for me as a Catholic) and pointing people to the NCBC to learn more about this is great. I am familiar with NCBC and have 2 friends who have studied with them, but I think they are not very well-known even by most Catholics. I am no medical or ethical expert either. But from what I have read, including from a pro-life Catholic pediatrician familiar with this disease, the “experimental treatment” offered in the US offered a minuscule chance for improvement in Charlie’s condition and in no way would heal his profound brain damage. You said: “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. ” I don’t think anyone has said that the ‘one last treatment’ would “reasonably help and improve Charlie’s life”. The culture of death is strong and as Catholics, we are all too aware of the current flow to discard those who are ‘imperfect’. But in this case, it seems that perhaps ‘the state’ is trying to act (as best they can determine) in the best interests of Charlie by preventing him being used as a guinea pig for treatments that have the tiniest chance of helping him but almost certainly cause stress and pain. It is one thing for a competent adult to offer themselves up for invasive medical experiments that would not benefit them but would add to researchers’ knowledge of the disease. It is another thing to offer up a baby for such experimentation. The statement of the Pontifical Academy for Life said that the interests of the patient must be paramount, but adds “we must also accept the limits of medicine and […..] avoid aggressive medical procedures that are disproportionate to any expected results or excessively burdensome to the patient or the family.”

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    1. Thanks for stopping by, and the dialogue, Cynthia! The NCBC is not widely known as far as I can tell, but these topics aren’t hugely popular, so I guess that makes sense. Awesome that you’re familiar with them! I am not a doctor, so I can’t make a claim how likely the experimental treatment (nucleoside bypass therapy) was to help. However, I do know that it was not invasive (administered orally), and has worked for individuals with similar mitochondrial depletion syndromes. The enzyme (or I can’t remember exactly what it is) that would be administered is apparently found in breastmilk. With this all taken into account, I don’t think inhumanely using Charlie as a guinea pig is an issue here, as far as I know.

      We are not obligated to continue treatments that have little chance. But I don’t think people should be legally stopped from pursuing a treatment unless there is documentation of it actually being harmful. There is a big difference there, I think.

      You are absolutely right that we have to accept the limits of medical treatment. And the Catholic Church displays beautifully what valuing life from it’s beginning to natural end looks like. It’s difficult for the public, largely uneducated on specific medical conditions and enraged by provocative headlines, to see these issues clearly. So I hope that each of us can do our part to spread the actual facts when things like this come up! Thanks for stopping by, and I’m happy to hear your response if you’d like to continue the conversation.

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  5. So glad to have found this piece! It’s nice to read a clear, well thought out post on this case (as opposed to some rather uninformed, poorly titled, or just plain visceral reactions). I didn’t know of the NCBC as a resource, but I am glad to have learned about it! Thanks for this post and for adding to the conversation on Charlie Gard in a thoughtful way!

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