Charlie Gard: suffering fights autonomy

I felt awful about Charlie Gard’s case from the start. I know very little about paediatrics and these are just my thoughts as a person reading the paper, not some sort of medical opinion.

Today, the boy’s parents ended their legal fight for their ill baby that aimed to have him flown to the US for experimental treatment. Their reasoning was that it was too late for the process to work.

The poor boy was born with a rare inherited disease, a mitochondrial DNA depletion syndrome. The parents were sourcing funds to have Charlie treated in the US. The UK doctors looking after Charlie felt that it was in the baby’s best interest to have life support withdrawn. The courts sided with the doctors.

It seems that the doctors thought that the further suffering caused through unproven intervention won’t ultimately result in any improvement. I think it is safe to assume this has been incredibly difficult for them to begin with, then also given the media scrutiny and hate mail.

But the fact that the state was able to have the final word and endorse this child’s death against the parents’ wishes stills my blood.

Is there a moral difference between withdrawing treatment and active euthanasia? Euthanasia that isn’t legal in the UK? Euthanasia against the wishes of the family? Against the wishes of the parents?

Is life support different to all other treatments when it comes to euthanasia?

The courts’ judgement on this controversial case is equivalent to endorsing passive euthanasia: an act of omission that leads to death and this was against his parent’s wishes. Isn’t it a little brave new world?

Or is it madness to consider dragging a dying boy half around the globe for an experiment?

But isn’t it when the person is dying that the risks of all treatments are outweighed by the benefits?

The hospital states: “A world where only parents speak and decide for children is far from the world in which GOSH treats its patients”. [GOSH is Great Ormond Street Hospital in London]

How much autonomy did the parents have? Given the uber complex medical aspects of the case, could it be said that the parents lacked capacity to weigh in on this decision? That’s pretty brave new world too.

The parents are quoted as saying this: “This isn’t about us being selfish, keeping him alive because we can’t bear to let him go. It’s because if we did not fight for this chance, we will have to live with the ‘what if’ for ever”…

I wonder what the legacy of this case is going to be in practice.

UPD: Excellent, balanced article on the ethics of the Charlie Gard Case from the British Medical Journal

Published by

Dr Martina Feyzrakhmanova

I am into all things cerebral. Background: medical doctor, M.Sc. Finance, management consulting. But really, I love to write.

29 thoughts on “Charlie Gard: suffering fights autonomy”

  1. In healthcare, money is life. In many things, money is life, but especially in healthcare. What portion of decisions like this are based on wealthcare?

    “You WILL save my baby at whatever cost regardless of mine or anyone’s ability to pay for the treatment!”

    No one want’s to come out and say “No, sorry, you, we, the nation, the world can’t afford to spend a million dollars saving one child, when such funds could, instead save thousands.”

    Money may not be ethical, but it must be calculated in as a primary driver of life or death decisions. Sure it’s callous and borders on evil, but morality is not a coin. It’s a sliderule with dollar signs etched along is surface. Being realistic in such matters is a distinction no one will claim outright. But in the end, somebody does, usually by default.

    Liked by 2 people

      1. Well, hell! And still the courts had power over the process? That sounds unethical. But being completely ignorant of the case, I’m only responding with generalized perspective.

        Liked by 1 person

  2. In response to:

    https://wordpress.com/read/feeds/55803779/posts/1537341987

    “This isn’t about us being selfish, keeping him alive because we can’t bear to let him go. It’s because if we did not fight for this chance, we will have to live with the ‘what if’ for ever”…

    The above quote from Charlie Gard’s parents really got me wondering. After all, it’s very important we never discard anything said, and especially if it’s handed to us on a plate. The important point is whether or not these words have been suggested to them, or come via solicitors, doctors (in America) or whoever. If they’re original thoughts from Charlie’s parents then we cannot discount something said, whether it’s a negation or not, as being the motivation. In other words, when we have the courage to face the truth, we will see our motivations are always selfishly motivated. There is no wrong or right about this; it just is. It’s part of the human condition, and one of the reason we’re the ‘warriors,’ that Charlie’s parents described him as.

    Without selfishness we’d never have made it this far. I think we should all take a step back, and understand the pain parents of terminally ill children, go through. We’re then able to objectively see the simple truth: none of want to see a child die and will selfishly keep them alive at all costs. Once again there is no wrong or right. What we do seem to struggle with, is seeing clearly, what the best interest of the child are. The child cannot speak for itself, it can only look beautiful and needy. This is translated by the parents into a powerful emotional bond, that even the reality of terminal illness, will struggle to break.

    We, as a society, have, over time, become increasingly dependent on government, and the people that work for it. Any form of dependence weakens us to the point of being unable to make important decisions for ourselves. When young, and driven by our emotions, (heart over head) we’re unlikely to make decisions that are either rational or based on the wellbeing of someone else, especially a needy and beautiful child. Although needy and beautiful Charlie Gard was a very poorly child, and for all we know, his suffering could have been off any scale we could possibly judge. The ‘what if’ needed to be: what if this child is suffering intolerably? If there’s any question of this, we mustn’t prolong life. None of us ever ‘save’ lives we only ever prolong them.

    So when we choose to leave important decision to government, because we’re so weakened by dependence, it proves hard to suddenly, and selfishly decide, we want to change the rules to prolong a child’s life. If we want others to look after us, that’s exactly what they’ll do; the selfish motivation in this instant, is power. The dependent are powerless at the hands of government and those who work for them.

    We take back our power from government when we take out the confusion. Protecting the rights of a child can never necessarily mean keeping them alive at all costs. It’s probably an overused cliché, however, we never allow an animal to suffer unnecessarily, so why would we a child? Because we think human life is more important than that of an animal? Or is it because we love them enough to let them go?

    Reading that Charlie’s parents will now “let our beautiful little boy be with the angels” only goes to prove how far we’ve yet to travel, when it comes to loving our children. Absurd Magical Beliefs (AMB’s) have no place in child-rearing if we have any chance of making it further. It’s this kind of thinking that keeps us dependent on others (in this case doctors) who’ve been awarded power over us, and will continue to make decisions, on our behalf.

    Finally, it’s been suggested, the American doctor who offered to help, had a vested interest in the company that manufactured the drugs that would have supposedly prolong Charlie’s life. Once again we can see none of us are free from selfish motivations. The trick to all of this, is to change our understandings of the word selfish. When we have little consideration for the needs of other, we’re being self-centered, which is the reality of many people in the case of Charlie Gard. When we’re selfish we can very easily selfishly put the needs of other before our own, because this is a pleasurable thing to consider. Believe it or not, we can feel pleasure, when one of our own, is released from suffering.

    Liked by 1 person

    1. When you look at it like that, then you also have to consider the selfish motivations of the court and the doctors who asked for the withdrawal of life support. I am sure you understand what they are.

      I am quite surprised how people commenting on this are emphasising release from suffering as a greater good than life itself. It’s a slippery slope to begin with – but when you are going against the wishes of the family (which in this case approximate the wishes of the patient), that’s scary.

      And finally, it was unknowable how much pain baby Charlie was in and if he was at all.

      Liked by 1 person

      1. I’m not fully up on the case, so I can’t really comment. I don’t however see mercy killing as a slippery slope. It won’t increase death, just decrease suffering. Of course, the checks and balances must be firm, but if a person is of sound mind, and multiple doctors are of one mind, then helping them have dignity in dying is a moral duty.

        Liked by 1 person

      2. I wouldn’t call it a mercy killing, but yeah, I agree with you. However, in this case, the patient couldn’t voice their thoughts. The closest to that is the parents wishes. So the parents were against the ending of his life. And the American doctor was saying there is a chance. So it doesn’t fit under the “let them die peacefully” folder 😦

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      3. As far as I understood, he virtually didn’t have a brain left. Seems pretty straight forward. Not sure why, though, the hospital won’t release him to die at home. Like I said, i haven’t actually looked at the cases’s details.

        Liked by 1 person

      4. Yeah, I think at this point his scans look discouraging, but perhaps this was different months ago when the legal battle began. I think there is much we don’t know about the case, so I am concerned as to what kind of legacy this case will have

        Liked by 1 person

      5. So this case says: “if we, the learned doctors and lawyers, feel that a child is better off passing away than going through the suffering of having a final shot at treatment, no matter how unlikely it is to work, then we can disregard the wishes of their parents and let the child die”.

        Slide a little lower down the slope and you have: “We, your doctors and the state, feel that you are better off passing, so we can disregard your disagreement and withdraw treatment against your will”.

        I can extrapolate some more and make it altogether terrifying, but you can see what slope I am talking about

        Liked by 1 person

      6. feel that a child is better off passing away is thoroughly misleading. The way you worded it implies the child could live if some sort of care/treatment was administered. That wasn’t the case.

        Liked by 1 person

      7. Again, I don’t know enough about the case to comment on what the US doctor said, or didn’t say. I don’t think it’s helpful, though, to misrepresent what the UK doctors were saying/their position.

        Liked by 1 person

      8. A better way to represent it? The truth: the child is beyond all known treatment.

        And again, I don’t know what the legal arguments were, so i can’t comment on that aspect.

        The problem with the way you seem to be phrasing it is in implying the doctors/state choose the fate of someone. With all due respect, but that’s simply false.

        Liked by 1 person

      9. “The truth: the child is beyond all known treatment.” We don’t know the truth. All we have is opinion.

        You’re erring on the side of the UK doctor’s opinion and I am erring on the side of US doctor’s opinion. That’s absolutely fine.

        The point isn’t about what set of doctors were right. It’s the fact that the courts didn’t prioritise the paren’t views in a context of clinical ambiguity. (I know you think there wasn’t any ambiguity, but I think I’ve established that that’s debatable).

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      10. Opinion confirmed by MRI’s, right?

        Where was the ambiguity?

        Again, I apologise for not knowing the details of the case, but I’m almost certain doctors and nurses who’ve dedicated their lives to helping/saving children did not arrive at this point carelessly.

        Liked by 1 person

      11. As I understand, the MRIs that showed there was no hope were taken just recently. Prior to that, months ago, another doctor said that there was hope. I kind of feel that I keep saying that another set of doctors felt there was a chance and you keep telling me what the UK doctors thought. I don’t think the doctors were careless or that it was easy. I just don’t think that their opinion should have so blatantly overridden the wishes of the family in this situation.

        Liked by 1 person

      12. Apologies. But are you perhaps reading too much into what these ‘other’ doctors had said? I could be completely mistaken, but my understanding of the case was that some radical therapy was known to be in the States, but that doctor had never even seen the child.

        I’m ignorant on this matter, but why would a hospital refuse to release a child under their care for treatment?

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      13. Ah, no need to apologise, I am enjoying our little debate very much.

        Maybe I am reading too much into it, who knows. The way I see it, a respected neurologist familiarised himself with the case, although didn’t see the child, and offered hope.

        On a practical level, the poor boy had to be kept alive until now anyway, so why didn’t they just let him be treated elsewhere? The argument to minimise suffering kind of moves into the background because the boy was still on life support for all this time. Would the transport and therapy been that much of a burden in addition to everything that he was going through anyway? I doubt it. So yeah, I have the same question as you.

        Liked by 1 person

  3. It’s a strong topic. In euthanasia, the next of kin are usually given the choice (wherever legal). Mercy killing is still not legal in my country. I do empathise with the parents who wanted to do everything they possibly could to save their child. It’s tough to have courts override parents when it comes to a situation of life and death of their child. I congratulate you for tackling this topic in such an eloquent way.

    Liked by 1 person

  4. I am only qualified to comment because of spending time each day for months with my daughter, at GOSH, while they successfully battled to save my grandaughter Natasha’s life. Every minute each day, I saw striving for excellence being applied- it’s what the place is about. The parents have done all they possibly could for this beautiful little guy- it is for noone else to judge except the experts, who have thankfully been available. Parents are each unique- we have a duty to do our best within our experience, Connie and Chris have done this- people who think they could have done better don’t actually know- maybe they ould, but probably not. Thankfully, GOSH has done its very best, relying on all its expertise and experience. It seems that the legal system has also given its very best shot, so we can at least be proud that support has been supplied well. Great Ormond Street Hospital is all important- the statements it has made are on its website and should be read carefully. My heart goes out to all concerned, so sad.

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