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

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 24^th July barely hides the hospital’s legal team’s exasperation. On the 24^th 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 27^th July. Charlie was moved to a hospice; his ventilator was removed, and he died on the 28^th 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.

2. 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.

3. 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.