Charlie Gard: An Ethical Analysis of a Legal non-Problem

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For those with an internet connection and an interest in current affairs, the story of Charlie Gard been hard to avoid recently. A decent précis is available here; but it’s worth rehearsing.

Shortly after his birth, Charlie’s health began to deteriorate, and he was diagnosed with a terminal and incurable mitochondrial DNA depletion syndrome. By March 2017, Charlie needed artificial ventilation, and doctors at Great Ormond Street Children’s Hospital (GOSH) applied to the High Court for confirmation that removing that ventilation would be lawful, having judged that it was not in his best interests. This was contested by his parents, Chris Gard and Connie Yates; the High Court ruled in favour of GOSH. This was confirmed by the Supreme Court and the European Court of Human Rights. During all this time, Charlie remained ventilated.

In the High Court, Mr Justice Francis said that his decision was subject to revision should new evidence emerge favouring continued treatment; in July, Charlie’s parents returned to the High Court, claiming that Charlie might benefit from an experimental treatment being offered by Professor Michio Hirano of Columbia University. However, as proceedings advanced, it became clear that Hirano’s proposed treatment had never been used on patients like Charlie, that he had neither seen Charlie nor read his notes when he offered the treatment, and that he had a financial interest in that treatment. The position statement issued by GOSH on the 24th July barely hides the hospital’s legal team’s exasperation. On the 24th July, Charlie’s parents dropped their request for continued treatment. The details of Charlie’s palliative care were still disputed; his parents wanted it to be provided at home, with ventilation maintained for a few days. The High Court ruled against this on the 27th July. Charlie was moved to a hospice; his ventilator was removed, and he died on the 28th July, a few days before his first birthday.

The way this case has played out has not been pretty. Elements of the American media (this piece is one among many) and the political right wing used it to launch attacks on single-payer healthcare systems. Nigel Farage weighed in, complaining about the state taking away parental rights. From the left, Giles Fraser wrote that the case was being dealt with too rationally. None of these claims is justified, and many left-leaning people have been surprised to find themselves in agreement with Melanie Phillips on this matter.

Legally, the case was very straightforward. Under English law, when a patient is not competent to make decisions, they must be made on his behalf, in his best interests. Treatment can be provided only if it serves those interests. “Best interests” generally means medical best interests, but the patient’s values and beliefs also count. (Thus a blood transfusion might be in a Jehovah’s Witness’ best medical interests, but would not be given.) Since children – especially those who are only months old – do not have values or beliefs that can contribute to an assessment of best interests, medical best interests are overriding. Medical staff at GOSH held that continued treatment did not serve Charlie’s best interests, and should therefore be withdrawn. This is wholly in keeping with established norms. More, since being on a ventilator is burdensome in its own right, doctors have a positive reason not to ventilate unless it serves some greater purpose – a purpose lacking in Charlie’s case. Merely being alive is not sufficient.

The case was definitely not a case of euthanasia, despite what some have claimed (and others have – correctly – denied). Euthanasia requires the intention to end life, either by withdrawing treatment or administering one. Foreseeing that a life will end when treatment is withdrawn is not the same thing. This is reflected in law, and law probably gets things ethically correct. More, the law is also ethically correct to allow that life for life’s sake is not worth striving for. More importantly, perhaps, Charlie’s parents’ requests that ventilation be maintained were partially motivated by a desire for more time to say goodbye to him. Understandable though this may be, to have acceded to the request would potentially have sacrificed his interests on the altar of their desires.

So far so good. But it’s worth noting a few aspects of the case that have not received a huge amount of attention, but that are rather interesting.

  1. Parental Autonomy

Some of the commentary on the case has focused on the place of parental autonomy, and the right of parents to make decisions on behalf of their children. Shouldn’t it be parents who get to make the final decision on behalf of their children?

There’s a powerful emotional tug to this kind of position, but it’s uncompelling in the end. Importantly, autonomy means that one can refuse treatment, or choose between offered treatment options. There’s no autonomy-based right in English law to demand treatment, though (as confirmed in Burke). If the medical staff thinks reasonably that a course of treatment is not justified, that’s the end of the story. Whether that treatment is being requested on your own or someone else’s behalf matters not.

More, to the extent that there is such a thing as parental autonomy, it is limited in its scope. Children are not the possession of the parents, as Francis J was at pains to point out in paragraph 18 of his ruling. It is the best interests of the child that take precedence. Parents get to make decisions on the rebuttable assumption that they act in the child’s best interests. But if parents’ decisions are manifestly against the child’s best interest, then there will be a reason to discount them – maybe by going to court. In effect, parental autonomy allows them to choose between plausible alternatives – say, whether to go for treatment x, which has a certain success rate, or y, which has a higher success rate but is more burdensome in the short term. It won’t extend to demanding z, for which there is little evidence. In effect, it gives the freedom to acquiesce to expert judgement. It doesn’t supplant it.

A mistake about the nature of autonomy is what leads Jakob Cornides to suggest an analogy with education:

His parents, whom conventional wisdom would suppose to be best placed to speak for him, are clearly opposed to him being euthanized. […] An interesting question here: how can it be inferred that an 11-months-old child has opinions that differ from those held by the persons whose natural right is to educate him? Is he already so emancipated from them? Is it implied that their education is in fact a dangerous manipulation which would cause him to have different opinions than he “naturally” would have?

I leave the euthanasia claim to one side here, since Gard’s was not euthanasia case. What’s arguably more important is that educating their child is not the right of parents, but a duty. Their right stretches only as far as deciding what kind of education to pursue from a range of options. If the analogy with education is sound, we can bring this point back to decisions about medical treatment. More, we cannot infer that a child’s opinion is different from his parents’ because a child has no opinion; neither can we treat parental opinion as the child’s.

  1. Mediation

Several commentators have spoken about a role for mediation or another non-judicial form of decisionmaking in cases like this. There’s a lot to be said for this suggestion, and there are doubtless many cases in which disagreement between parents and medics about the best course of action is resolved amicably through mediation. The Gard case was unusual in that this proved impossible, despite GOSH having offered it, and that the dispute was played out in public.

Any mediation process likely would have been intended to ease communication between the parties, not to decide what to do. But this gives us insight into a major problem for mediation: there has to be a willingness from both parties to give ground. Absent that, it’s hard to see how judicial input can be avoided. Besides, mediated solutions still need some kind of enforceability; the Courts, or something appreciably like them, would have to be a background presence.

Vitally, as well as a willingness from both parties to give ground, for mediation to work there must be ground to give that will leave participants no worse off than they were at the start. In this way, a solution is constructed by the parties. Charlie’s case was not like that. Either treatment was medically warranted, or it wasn’t. There was nothing to mediate. (Indeed, if you think that x would be in Charlie’s best interests, then to be willing to do less than x seems like a dereliction of your principles and what you hold your duty to command.)

Mediation should be used when possible, ensuring that disputants understand each other and their situation to the greatest extent possible. But when it comes to decisions about whether to withdraw life-sustaining treatment from another person, it strikes me that mediation would be precisely the wrong tool.

  1. Experimental treatment

Michio Hirano’s proposal to use a novel procedure raises a deep problem in paediatric research ethics. Experimental treatments can rarely be said to serve someone’s best interests, otherwise they wouldn’t be experimental. A new treatment might be the best – but we can’t always say so. With adults, this needn’t present a big problem: “We could use established treatment p, or we could use promising treatment q, in which we can have less confidence. Which would you like to try?” It’s up to the patient to decide.

But with non-competent patients, that isn’t possible: as I just noted, we can’t say for sure that q is in the patient’s best interest, but acting in the patient’s best interests is required. There is no established treatment for Charlie’s condition, so maybe any treatment serves his interests – except that there is still a plausibility criterion to consider. There is a non-zero, but pitifully small, chance that chanting and crystals would work. Hirano’s procedure was more plausible than that, but judging whether something is plausible enough, granted the burdens of remaining in intensive care, is a tricky matter. The Courts clearly thought not: at paragraph 52 of its ruling, the ECtHR notes that under the terms of the Council of Europe’s Oviedo Convention, experimental treatment may be provided to incompetent patients, but that “authorisation […] may be withdrawn at any time in the best interests of the person concerned” (emphasis mine). The Court took no issue with the way that the domestic courts handled decisions about experimental treatment; and so the specification at paras 78 et seq that “Article 2 of the Convention cannot be interpreted as requiring access to unauthorised medicinal products for the terminally ill to be regulated in a particular way” confirmed the propriety of those courts’ decision.

This leaves us with a paradox. It is dubiously in a child’s best interest to receive experimental treatment, especially if there is an accepted treatment available. But progress is in everyone’s interest, and relies on new treatments being considered. Someone has to be given the experimental treatment; but not any particular person. (The same applies to innovative treatments in emergency medicine.) How to resolve this puzzle has provided any number of ethicists with material for a whole career’s worth of research.

But this is probably not a question for the Courts to address. Once again, the situation in the UK was found to be defensible from the perspective of the ECHR; and it probably stands scrutiny from a moral perspective too. This is not to deny that there is a reason to revisit the legal situation at some point; there is. But the situation as it stands is not evidently unjust.

Charlie Gard was a very unfortunate child. But not every misfortune indicates an injustice. It seems to me that the way the law was brought to bear on his case simply drew out his misfortune.

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Kevin Jon Heller says

August 9, 2017

I completely agree with the post, save for the following statement:

"Euthanasia requires the intention to end life, either by withdrawing treatment or administering one. Foreseeing that a life will end when treatment is withdrawn is not the same thing. This is reflected in law, and law probably gets things ethically correct."

I think this far too simple. In British criminal law, murder encompasses both direct intent (the subjective desire to kill) and oblique intent (acting with the knowledge that death is virtually certain to result). "[F]oreseeing that a life will end when treatment is withdrawn" is not murder only because the House of Lords held in Bland: (1) ending medical treatment is an omission, not an act; and (2) there is no duty of care toward a patient that omitting to continue treatment will violate if treatment is of no medical benefit to the patient. Although I agree with the Lords' conclusion, the first assumption is certainly debatable both philosophically and legally. So I don't think the post gains anything by making the euthanasia point so strongly.

Iain says

August 11, 2017

I take your point - though (adopting the philosopher's privilege) I'd be inclined to respond that using the law to work out the nature of an action isn't always going to be a reliable move. That the law may classify euthanasia as murder won't tell us that that classification is morally compelling; and that it classifies some other kinds of behaviour as murder as well won't tell us that those behaviours are euthanatic. That is: I think one can still deny that an action is euthanasia notwithstanding how the law frames things.

Jakob Cornides says

August 14, 2017

When I published my original post on the ECtHR’s Charlie Gard Decision a month ago, I did of course expect that some people would come forward to justify, with the usual foreseeably utilitarianist arguments, that the euthanizing of Charlie Gard without his consent and against the will of his parents was okay because - as had been argued by the hospital and accepted by the British and European Courts – it was “in his best interest”. What I would never have believed until I saw it was that there are people out there who seriously contend that the Charlie Gard case is not a case of euthanasia. Yet that is what, much to my astonishment, I read in the posts submitted by Stevie Martin and Iain Brassington.

I have already commented on Mrs. Martin’s posts in the comment section below her post, so there is no reason to repeat this here in full length. Her reasoning seems to a large extent based in raw legal positivism (essentially she says: “In England we don’t call the withdrawal of life-sustaining treatment is not called euthanasia”), and on the argument that ”the courts have held that the conduct of the doctors constitutes an omission (as opposed to an act) and the cause of the patient’s death is taken to be their underlying illness, not the withdrawal of treatment.”

With all due respect, I believe that the argument based on mere legal positivism does not merit to be pursued any further. I think it is possible that an act constitutes euthanasia even if British law fails to recognize it as such, just as I think that a thing can be black even if some politicians or judges declare it to be white In fact, this is what I have been saying all along.

Euthanasia is the intentional killing of a person, with the agent being - or at least claiming to be driven – by a sentiment of mercy. That subjective sentiment is what distinguishes euthanasia (morally acceptable to some) from murder (morally acceptable - I hope - to no one).

While the question whether the person who is killed has, or not, asked to be euthanized may be relevant for the legality of euthanasia, but not for its definition. In the same vein, it is not relevant whether the victim is terminally ill, or incurably ill, or not ill at all – as euthanasia is nowadays practiced with increasing frequency in all of these circumstances. A definition according which euthanasia is the killing of a terminally ill person who, in full possession of his/her mental faculties has explicitly asked for it simply does not hold true anymore.

Contrary to what Mrs. Martin seemed to be claiming, it is also not relevant whether an (intentional) killing takes place by action or omission. First, it is universally recognized that intentional killing can be committed both through action and through omission. Second, the withdrawal of artificial ventilation, hydration, or nutrition constitutes an action not an omission.

This becomes immediately clear when considering the ECtHR case of Lambert v. France: Vincent Lambert had been in a stable coma for seven years, and he could have lived in that state for many more years (or possibly, even if improbably, have awakened from his coma at some later time). Yet it was decided to withdraw artificial alimentation and hydration. He did not actually die from his road accident, nor can it be said that he “died from coma”. No, he was literally starved to death. In the same way, in the Gard case the death was not by his underlying illness, but by asphyxiation. In cases such as Lambert and Gard the withdrawal of supply with water, food or air very clearly involves the act of “pulling the plug”, which evidently cannot (except perhaps by omnipotent British judges) be qualified as “omission”.

In his contribution Mr. Brassington is coming up with another argument: “The case was definitely not a case of euthanasia” because euthanasia “requires the intention to end life, either by withdrawing treatment or administering one. Foreseeing that a life will end when treatment is withdrawn is not the same thing.”
I don’t think anyone has ever argued that euthanasia does not require the intention of killing. Certainly I have not made such a claim, and I find it inappropriate, if not worse, that Mr. Brassington is commenting on my post as if I had. By rebutting a position that no one has taken, he is making the task quite easy for himself.

Obviously, it is true that foreseeing the probable consequences of an act is not the same thing as committing that act and willing those consequences. Thanks for reminding us. But the point is that in fact in the Charlie Gard case at hand the agents (GOSH, the guardian, the UK courts) where a little bit more involved. .Ventilation was not withdrawn by itself with the judges and doctors as passive hand-wringing bystanders; for it to be withdrawn, someone was needed to “pull the plug”, i.e. to withdraw it. GOSH asked for permission to withdraw ventilation, the courts – in full knowledge of the consequences – granted that permission (if it was not rather an order), and in the end somebody did it. In other words, they not only foresaw the consequences, but they also committed the act And if in full knowledge of the likely consequences they committed the act the only possible explanation is that they willed those consequences.

Nobody is disputing that euthanasia requires the intention to kill. But rather than lecturing us on principles on which nobody disagrees, I think Mr. Brassington owes us an explanation which other intention save that of ending Charlie´s life might have been pursued by withdrawing ventilation? Did anyone think he could withdraw ventilation without ending or imperiling Charlie’s life? How so?

Sure,all those involved were, or at least believed to be, driven by sentiments of “compassion”. But their “merciful” reasoning was precisely that for Charlie it was “in his best interest” to die rather than live, and that’s why they wanted him to die. This reasoning is precisely what characterizes euthanasia. I am not doubting anyone’s good intentions. But to say that those involved did not act with the intention of ending Charlie Gard´s life is just a gross misrepresentation of facts.

But maybe there is confusion also with regard to a moral principle. It is morally legitimate to act in a way that imperils human life, if that is not what is directly being sought. For example, if a pregnant woman suffers from cancer, it is legitimate to treat her with chemo- or radiotherapy to save her life, even if such therapy will likely result in the loss of her child: the loss of the child is not the purpose that is sought; it is a collateral damage that is accepted. Likewise, it is legitimate to treat a terminally ill patient with pain-killers, even if one must expect that this may somewhat shorten his life: again, the purpose that is sought is to ease the patient’s suffering, not to kill him.
But the Charlie Gard case was not such a case. Here the purpose was to kill Charlie in order to end his suffering.

Jakob Cornides says

August 14, 2017

Among the other points Mr. Brassington is making in his post, there is another one that causes astonishment: his statement that “educating their child is not the right of parents, but a duty“. Is this an affirmation about the positive legal situation as it currently stands in the UK, or is this supposed to be a “philosophical” view point (given that Mr. Brassington introduces himself as “a philosopher rather than a lawyer”)?

Either way, I would suggest him to read and meditate Article 2 of the (First) Protocol of the ECHR, which reads:

“Article 2 – Right to education
No person shall be denied the right to education. In the exercise of any functions which it assumes in relation to education and to teaching, the State shall respect the right of parents to ensure such education and teaching in conformity with their own religious and philosophical convictions.”

Upon reading this, it is very clear that this Article speaks of a right of parents to educate their children, whereas it does NOT speak of any “right” of the State to educate the children of its citizens. Instead, for the State there only appears to be an explicit duty: that of respecting parental rights.

Mr. Brassington’s statement is thus not only wrong, but it is in open and glaring contradiction to the ECHR. I hope that this is not also true de lege lata for the UK, so that Mr. Brassington’s statement is wrong also in that regard. Parents do have the right to educate their children according to their moral convictions.

The State´s role in education is thus ancillary to that of the parents. This is very important, because this is what guarantees a free society. The claim that the education of children is the competence of the State rather than of parents is a typical characteristic of totalitarian systems.

The State’s true role is therefore to help parents in giving their children the education they want to give them. Most parents want their children to learn languages, mathematics, and other useful things, but do not have the skills that would make them good language and math teachers. That’s why we have schools with professional teaching staff: they are there to assist parents, not tp supplant them.

Beyond that, and given that “everyone has a right to education”, the State’s role is that of a guarantor. It must (and thus is also entitled to) intervene in the (hopefully, rather exceptional) situation where parents fail to impart any education at all to their child, or where their “education” is such that it cannot be called by that name. That would be the case for example where parents instruct their children how to steal, to murder, or to sell themselves as prostitutes.

Mr. Brassington’s somewhat careless attitude toward parental rights tells us a thing or two about “children’s rights” as embodied e.g. by the CRC or, in the case at hand, by the decision of a law court that quotes “the best interest of the child” in order to have a child euthanized against the will of its parents. As human beings, children have the same human rights as we all do, and it is of course a truism that in all decisions affecting them their best interest should be the primary consideration. But is a particular UN Convention really needed. Looking at the Charlie Gard case, one could easily come to the conclusion that the primary effect (if not the purpose) of the CRC (and the domestic laws implementing it) is to dispossess parents of their natural rights, and instead give new, and indeed unfettered, powers to the State and its agents. This precisely is the most disturbing aspect of the Charlie Gard case: today’s totalitarianism comes in the sheep’s clothing of human rights language.

Asher says

August 18, 2017

Thanks for the post. I have two comments:
The assertion that in a case of infant the term "his best interest" includes merely medical consideration and not ideological or religious one is highly doubtful in my eyes. This goes with the assertion the neutral position is secular one and religious ideology (for example) is an additional one which should be regarded only in case of full expression by the relevant decider, but not as a default position. This is unacceptable claim. Since no one can decide what the natural and neutral decision is, and of course it is not the State's role to decide (in order to remain neutral), the decision should be vested to someone (in order to find a practical solution, and only for that). I am not sure whether in case of infant this power should be given to the doctors or to the parents, but the education analogy seems fairly reasonable and may be the default route. What’s the doctors’ secular, even merely scientific, beliefs have to do with Charlie. Why a purely scientific position should be prioritized?
Moreover, I didn’t get the argument regarding experimental treatment. Beyond the mischaracterization of experimental treatment – one has to remember that we are not dealing with established treatment A or experimental treatment B, as Charlie’s alternative is dying. In that case it is completely reasonable to consider the experimental treatment to be in Charlie’s best interests even from a medical considerations point only. The question is again who gets to decide (in this case regarding the medical considerations), and it seems again that the education analogy helps to give the decision to the parents. Although the parent are not medical professionals, the fact that certain doctors do not see the plausible advantage of such treatment does not matter since there is another doctor who believes in this treatment (be with whatsoever low chances to succeed).