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The sad case of Charlie Gard and the rights *and wrongs* of experimental treatment

By Dominic Wilkinson @Neonatalethics


In a blog post published yesterday, Julian Savulescu argues that Charlie Gard should have received the experimental treatment requested by his parents 6 months ago. He further argues that “we should be more aggressive about trials of therapy where there are no other good options”.

I have previously argued (in a blog and in an editorial in the Lancet) that the requested treatment is not in Charlie’s best interests. In a forthcoming paper (co-authored with John Paris, Jag Ahluwahlia, Brian Cummings and Michael Moreland), we compare the US and UK legal approaches to cases like this, and argue that the US approach is deeply flawed.

Here are four areas where I agree with Julian

  1. In retrospect, it would have been better for Charlie to have received the requested treatment 6 months ago than to have a protracted legal dispute (with continued treatment in intensive care anyway)
  2. We should generally allow patients who are dying or severely ill, without other available treatment, to try experimental treatment if that is something that they (or their family) strongly desire
  3. If experimental treatments are unaffordable in public health systems but patients are able to pay for them privately, or have crowd-sourced funding for them, they should be made available
  4. Experimental treatments should not be provided where the side effects make that treatment highly likely not to be in the patient’s interests.

However, despite these areas of common ground, I reach starkly different conclusions from Julian. In my view, the doctors were right to oppose experimental treatment for Charlie in January, the judges were right to decline the family’s request for treatment in April, and it would be deeply ethically problematic to provide the treatment now, notwithstanding the recent intervention of the US president and the Pope.

Why the different conclusions? Here are two core areas of disagreement

  1. When doctors opposed the family’s request for treatment in January they could not have predicted that 6 months and 4 court judgments later treatment would still be continuing. Why? While there has been intense media attention to this particular case, most cases like this never reach the public. It is, sadly, not uncommon, for children to be diagnosed with severe illness that medicine cannot cure or aid. Every day, in intensive care units up and down the country, medical teams and families reach decisions together that life-sustaining treatment is no longer helping a child and decide to withdraw treatment. In the majority of cases, the family and health professionals reach agreement about treatment. Where there is disagreement, that is usually able to be resolved with patience, careful communication, sometimes with second opinions or ethics committee review. It is only rarely that cases need to go to court. Where such cases have gone to court in the UK (as in this case) the judges have, on the whole, agreed with a professional determination that treatment is not in the child’s interests. It is deeply distressing, for Charlie, for his family, and for the professionals involved, that this disagreement has continued for so long. However, that was not inevitable.
  2. Experimental treatment for Charlie Gard is associated with significant side effects such that it is highly likely not to be in his interests to provide it. Some have noted that the requested treatment – nucleoside therapy, is taken orally, without significant side effects. However, that ignores the very substantial harms of life support itself – and the requirement to continue intensive care for months to see if the treatment were doing anything at all. Back in April I noted that “Being kept alive in intensive care is not pleasant. Although we do our best to provide pain relief, sedation, care and comfort to gravely ill children and babies, that ability is finite and imperfect. Children on long-term ventilation often appear uncomfortable at least part of the time. They have frequent needles and invasive procedures.” In Charlie’s case, there is the additional complication that he is paralysed and unable to indicate (except indirectly through changes in his heart beat or blood pressure) if or when he is in pain.

Here, there are different views about the balance of risks and benefits. Which is right? How should we decide? If there is reasonable disagreement about what would be in Charlie’s best interests, I accept (and have argued as much) that we should defer to parents’ views. But it isn’t clear to me that this is a question of reasonable disagreement (or dissensus). Lurking behind some of the recent public statements on this case are two unreasonable arguments

i. Parents should be the ultimate decision-makers about medical treatment for their child.

This is the US legal approach, and seems to be the basis of much US commentary on the Charlie Gard case. However, it is ethically misguided. It either assumes that parents are infallible and always make the best decisions for their child. Or it assumes that children are the property of their parents, who may make whatever decisions they like about them. But both of those are mistaken. We do not think that parents can make just any decision for their children. Even with the best intentions, parents can make foolish or unwise decisions. Where parents’ decisions run a significant risk of causing substantial harm the state has a duty to the child to intervene.

ii. It is never acceptable to withdraw or withhold medical treatment from a patient if continuing treatment could keep them alive.

This is the right-to-life view. It assumes that life is always a benefit. It ignores the substantial burdens of life-sustaining treatment and of illness. However, this view is not the official view of any of the world’s major religions, nor is it shared by most people when contemplating treatment for themselves.

All medical treatment has risks and benefits. Often it will be helpful, but sometimes it will do more harm than good.

When we are thinking about a child, it is absolutely clear that sometimes providing life-support, or continuing life support is not in the child’s best interests.

How might we decide whether experimental treatment is a reasonable option for a particular child? One important step is to seek the views of professionals with relevant expertise – those who know the medical details of a specific case and understand the science and evidence behind the proposed treatment. Second, or third or further opinions may be useful. Then an impartial arbiter (someone with no vested interest and no agenda) should listen carefully to the views of the experts as well as the parents, and make a determination about whether this treatment should be provided, or whether, actually, it has no realistic prospect of helping while risking serious harm for the child.

But that, of course, is exactly what has happened in the Charlie Gard case. Justice Francis in the Family division of the High court listened carefully and compassionately to the request of the family and weighed carefully the expert evidence. He reached the view then that this treatment was not in Charlie’s interests, and his judgment was then upheld in the Appeals court, the Supreme Court, and in the European Court of Human Rights.

We should be guided by parents’ views about medical treatment for their child. But not in every case, and not in this case. We should generally be willing to allow dying patients access to experimental treatment. But not in every case. Not in this case.


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9 Comment on this post

  1. This fails to address most of the arguments from the right-wing supporters of Charlie Gard. It does address one main right-wing theme, parents ownership of their children, but not the perceived threats to that ownership.

    Here’s a limited list of arguments that Dominic Wilkinson omitted from his post, on the basis of my limited sample of pro-Charlie twitter posts:

    1. The left is a death cult.

    2. Left-wing full-term abortion is wrong.

    3. The left wanted Charlie Gard aborted.

    4. The left opposes free choice and free will.

    5. Charlie Gard is a victim of a death panel.

    6. The left is inhumane.

    7. The US Democratic Party decided on Charlie’s death.

    8. Charlie Gard was sentenced to death by leftists.

    9. The EU did not show the same compassion to Charlie Gard, that it shows to migrants pouring into Europe.

    10. The EU sentenced Charlie Gard to death.

    11. The EU death sentence on Charlie Gard is hypocritical because it opposes the death penalty for convicted criminals.

    12. The EU has forced cultural suicide on the people of Europe.

    13. The liberal elite has destroyed our nationhood.

    14. The leftist goal of killing babies is inconsistent because the left wants to protect illegal immigrants.

    15. The EU seeks to destroy Europe as a fit home for European families.

    16. If Charlie Gard had been Muslim or black, he would not have been treated this way.

    17. Charlie Gard is treated this way because whites are now considered expendable.

    18. Charlie Gard’s treatment is part of a state strategy to remove control of children from their parents.

    19. Socialised medicine destroys individuals’ control of their own bodies.

    20. Theresa May took the decision that Charlie Gard should die.

    21 Theresa May’s decision to let Charlie Gard die is wrong, because she protects paedophiles.

    22. If the EU is not stopped, they will kill all the babies.

    23. The EU has a master plan to seize ownership of all children and babies under its control.

    24. Great Ormond Street Hospital is killing Charlie Gard to cover up medical incompetence.

    Many of these are quite rational, and would be considered by any reasonable and impartial tribunal which was adjudicating the case. Point 16 seems very accurate: if Charlie Gard was Muslim, there would be a left-wing campaign to save him, which even under a Conservative government would have a reasonable chance of success. I think there is also a reasonable suspicion of medical incompetence (point 26) given the evasive position of the hospital, and their odd relationship with the parents.

    Whether the left is a death cult, and so on, is a matter of opinion. That does not make beliefs derived from that position invalid, as beliefs.

    The key question here is: what does Dominic Wilkinson think of all this? I suspect he thinks it is all worthless nonsense, posted online by half-literate working-class people. Certainly many of his well-educated colleagues – lawyers, judges, MP’s, academics, researchers – do think like that. That may be the central problem, the elephant in the room: the arrogant dismissal of the fundamental values of millions of citizens.

    Anyone who knows anything about political theory, and looks at the Charlie Gard case, will see a classic case of populist revolt. From a political perspective, this is not really about baby Charlie, and not really about patient autonomy and so on. It’s about an elite which has great power over others, in some cases absolute power, and the fear and suspicion which that power engenders in its victims.

    1. You can’t accuse Dominic Wilkinson of ‘omitting’ these arguments from his post. He isn’t attempting to refute every ludicrous assertion made about the case. Almost none of these arguments are rational. I’m not sure how you can even judge whether there is medical incompetence – I’ve not read or heard anything to even hint at this.

      Whether the left is a death cult is a ‘matter of opinion’…? Really? That is an unsupportable statement, and it does make beliefs derived from the position invalid. It is true only in the trivial sense where everything is a matter of opinion. I believe that the Earth is spherical, and that Hitler was generally a bad person. But of course these are also ‘matters of opinion’ in the sense you use the phrase.

      I know something about political theory and I disagree that this is populist revolt. The Daily Mail comments on articles – often a useful barometer – are full of people supporting the decision of the hospital and the courts, while expressing profound sympathy for the parents and for Charlie. This is simply an incredibly difficult and emotive medical scenario that highlights polarities in the way people see issues. In fact one of the saddest things is the top-down political point-making (Trump, The Pope, etc) that has fortunately done little to dissuade the general public that the right decision has been reached.

      1. It’s up to Dominic Wilkinson to respond, and I don’t consider Josh Brostoff to be a proxy for him, but his comment does illustrate the issue I raised.

        There are no facts in politics, only value judgements, we operate in a post-truth political arena, and all beliefs are valid as beliefs. There are therefore no ‘ludicrous assertions’ as such, there are individuals who are hostile to others, usually reflecting an ideological, philosophical, social, ethnic, or religious divide. What Josh Brostoff describes as ‘ludicrous assertions’ are the heartfelt beliefs of people who suffer at the hands of the elite. They see in the Charlie Gard case a validation of their beliefs and world-view. Insulting them, and treating them with contempt, will not make them go away, or make them any less angry, frustrated and alienated. Sooner or later they will hit back, as they did already in the Brexit referendum.

        Their beliefs and perceptions must be accepted as facts, because they are already facts in politics. And yes, that applies to Flat Earth theory as well. One of the reasons why this theory has enjoyed a revival, is the frustration of populists at the continued contempt and condescension, which they suffer every day at the hands of the well-educated and the political class. I am not so naive as to think that the elite never manipulates populist opinions, but in general they are hostile to what might be called the ‘populist underclass’.

        So there are no ‘unsupportable statements’ either, because political statements of belief don’t need to be supported. If you believe the earth if flat, then that belief is the case, and the state must treat that belief as a valid belief. If you believe that the European Union should not execute little Charlie Gard, then that execution is a fact, and the state must take account of that fact. Beliefs do not need to be derived from ‘supportable’ statements, and its hard to see how a statement can be ‘supported’ if there is no consensus on it in the first place. Human beings are not identical clones.

        Unlike Dominic Wilkinson and Josh Brostoff, I have taken the trouble to think about the underlying political issues in this case, and possible policy options. I mentioned one of them in earlier comments: a referendum in Britain on whether Charlie Gard should live or die. I also mentioned the possibility of breaking up the British National Health Service, and replacing it by a polarised health care system with separate no-kill hospitals. Even without going that far, it would be helpful to offer patients an exemption from death panels. In the case of child patients, the parents would be offered exemption from death panels adjudicating on the life of their children. It would also be helpful if the UK held a referendum on whether EU execution decisions are valid in the UK. These are just some of the measures that could be considered.

        Now I know how people like Josh Brostoff will react to this: they will scream, or at least insist loudly, that there are no death panels, that the EU does not execute anyone, and so on. No doubt he will also insist that there are no chemtrails, no white genocide, no reptilians, that the UK is not under Sharia Law, and that the Protocols of the Elders of Zion are a forgery. That is how the well-educated see the world. But that’s not how the rest of the population sees it, at least a very significant section of the rest of the population. The elite respond to this with open contempt, and a strategy of political exclusion. This is not sustainable in the long run. Western elites must at some point make concessions to the existence of the populist underclass.

        1. Very interesting Paul. I think we are far from a debate in good faith here. You are right: I will deny the existence of death panels, white genocide and reptilian rulers (I do believe in reptiles, for the record). I do not believe the UK to be under Sharia Law or for there to be any truths about Jewish people to be found in the Protocols of the Elders of Zion.

          You seem to have a constructivist view of truth, whereas I find phrases such as “that’s my truth”, or “well it’s true for me” to be unhelpful outside of rhetoric and polemic. As the saying goes: you’re entitled to your own opinions, but not to your own facts.

          I would be interested if you would clarify your own views on death panels, EU executions, reptilians, UK under Sharia Law, Protocols of the Elders of Zion, and white genocide.

  2. With respect, the analysis even to a lay person fails to address why there is not reasonable disagreement between the parents and doctors in this case, that is, why it is unreasonable what the parents propose. The argument by GOSH is that the treatment would be futile. But others in the medical profession and research have indicated that there is a chance of some improvement for the child. If that is the case, then the only countervailing consideration is significant pain. The evidence by GOSH and in the post above refers principally to discomfort and a hypothesis about possible pain. That cannot be sufficient to conclude with any degree of satisfaction that the child will suffer significant harm upon receiving treatment. On this basis, it seems that the parents’ position is not unreasonable and, on the author’s own view, ought to be deferred to.

  3. Dominic Wilkinson

    Hi El El,

    You are right that there are some professionals who have offered treatment for Charlie, or have indicated that they believe it is not futile. This might be considered to represent reasonable disagreement, and therefore (along lines I have argued elsewhere) indicates that parents should have discretion about treatment.
    However, I am not convinced that this is ‘reasonable’ disagreement for two reasons.
    First, at least some of the offers of treatment (from US or Italy) appear to motivated by one of the two arguments labelled ‘unreasonable’ above. For example, if professionals are prepared to provide treatment in this case because they believe that parents should always have the final say in treatment – then for the reasons summarised (very briefly) above, we should discount their views. It is very clear that some US health professionals will always provide medical treatment and continued life support if parents request it (and can pay for it). If that were the motivation for offering treatment, that does not indicate reasonable disagreement about whether or not treatment is in Charlie’s interests.
    Second, at least some of the offers or support for treatment come from individuals who do not have relevant knowledge or experience of Charlie’s actual medical state. Many of his medical details are not in the public domain (appropriately so). The recent letter includes a number of professionals who do not specialise in providing intensive care (for example because they are scientists). (One of them, interviewed by the Daily Mail was quoted as saying “I haven’t seen Charlie and I’m a chemist, not a doctor. The key issue in this case is that the infant is on life support in intensive care (and has been so for more than 8 months).
    In the submission to the UK High Court this week, the barrister for Great Ormond Street was quoted as saying that the hospital were unable to find a single intensive care unit in the UK who were prepared to continue treatment for Charlie. That indicates the striking lack of disagreement amongst professionals with the relevant knowledge and experience.
    As far as a hypothesis about possible pain. Those who work in intensive care, as I do, and as the doctors at Great Ormond Street do, know all too well, that the things that we do to keep children alive are unpleasant, uncomfortable and frequently painful – notwithstanding our best efforts to alleviate children’s symptoms. In this case, one of the saddest features of Charlie’s illness is that he is paralysed, and unable to show outward signs if and when he is in pain.

  4. Dominic Wilkinson has not, so far, addressed any of the political and social issues in the Charlie Gard case, with the exception of parental ownership claims, which he simply dismissed. That suggests, to me at least, that he does not want to address most of them. No doubt he is a busy man, but it is obvious in this case that mutual incomprehension between the doctors, judges, and lawyers on one side, and the parents and public opinion on the other, is a significant factor. Hiding behind expertise, training, experience, and knowledge will not close the gap.

  5. Paul Treanor, if you really respected freedom and free will like you claim in your initial comment, you’d appreciate a system that is only trying to protect a little boy who cannot speak for himself from being treated like something less than a human being with autonomy. To protect him and his care from being directed by people who really aren’t involved and don’t know the facts of the case first hand. Dismissing a claim isn’t not addressing it. Many of the issues you brought up, that you say Dominic Wilkinson did not address reduce to the two ideas he references. Nobody is hiding behind expertise. It’s simply a fact that without medical knowledge, you really can’t make a judgment on whether or not an experimental treatment has any chance of working. Rather, you are the one who is hiding, behind this anti-“leftism” straw man and the pathos-heavy claims of “baby killing” that are the only way people seem to think they can show support for Charlie Gard. Holding a poster that says “Save Charlie” or “Medical Murder” won’t help and has no relevance for a boy who, to the best of anyone’s current knowledge really can’t be saved. The only real way to help is to try and reach better understanding of the motivations behind the doctors’ behavior in this case. If the “populists” would only listen, they’d see that the problem isn’t doctors. It’s that we just don’t know enough to cure everything yet. The best way to try and move forward is to keep on researching in the hopes that, one day, perhaps, no more kids will have to die so young of diseases like this. A better use of time than standing around protesting standard of care would be to petition for more funding for rare disease research. By the way, offering parents to be the option of abortion in light of such a awful illness is in no way trying to force them into aborting. It’s merely one of several options and the doctor’s job is to respect the patients wishes while informing them of all their options and the possible consequences of each.

    It does not matter anymore, who is right and who is wrong.
    Charlie Gard is going to die.
    His parents have given up the five month fight. Michio Hirano, a neurology professor at Columbia University Medical Center, who flew to England, stated that the window for treating Charlie had elapsed while Charlie’s fate was being decided by the Court.
    His parents in desperation wanted to take him to America to undergo an experimental treatment.
    The courts said “NO” despite the fact that The United States was willing to give the Gard family U.S. residency and a potential route to treatment. For Christ’s sake, even Pope Francis wanted Charley to travel to America.
    What did the Hospital and the System in England have to lose? Why not take that slim chance? According to them, Charlie is going to die anyway, so….. Why Not? Why Not? Why Not??????????
    In Britain, if a dispute arises, on how to how to treat a patient, it is decided by courts. In the U.S., the family makes that decision.
    They System and Great Ormond Street Hospital in London have decided that Charlie must die. What his parents think does not to seem to matter.
    If he died in America, fighting for his life, it would be more honorable than letting a total stranger pull the plug on his young life.
    The “Professionals” in England who arrived at this decision MUST ask themselves, “If I were Charlie, and knew I was going to die, and if, I got offered a remote, slender, unconventional life line, that may, or may not work; would I grab it?”

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