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Why Charlie Gard’s parents should have been the decision-makers about their son’s best interests
  1. Raanan Gillon
  1. Correspondence to Professor Raanan Gillon, Department of Primary Care and Public Health, Imperial College London, London W6 8RP, UK; raanan.gillon{at}imperial.ac.uk

Abstract

This paper argues that Charlie Gard’s parents should have been the decision-makers about their son’s best interests and that determination of Charlie’s best interests depended on a moral decision about which horn of a profound moral dilemma to choose. Charlie’s parents chose one horn of that moral dilemma and the courts, like Charlie Gard’s doctors, chose the other horn. Contrary to the first UK court’s assertion, supported by all the higher courts that considered it, that its judgement was ‘objective’, this paper argues that the judgement was not and could not be ‘objective’ in the sense of objectively correct but was instead a value judgement based on the judge’s choice of one horn of the moral dilemma. While that horn was morally justified so too was the horn chosen by the parents. The court could and should have avoided depriving the parents of their normal moral and legal right and responsibility to decide on their child’s best interests. Instead, this paper argues that the court should have acknowledged the lawfulness of both horns of the moral dilemma and added to its judgement that Charlie Gard’s doctors were not legally obliged to provide treatment that they believed to be against their patient’s best interests the additional judgement that Charlie’s parents could lawfully transfer his care to other doctors prepared to offer the infant a trial of the experimental treatment requested by his parents.

  • applied and professional ethics
  • attitudes towards death
  • care of dying minors
  • clinical ethics
  • law
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The second general comment which should be made is that the courts are not, contrary to what is sometimes believed, arbiters as to the merits of cases of this kind. Were we to express opinions as to the likelihood of the effectiveness of medical treatment, or as to the merits of medical judgment, then we should be straying far from the sphere which under our constitution is accorded to us. We have one function only, which is to rule upon the lawfulness of decisions. That is a function to which we should strictly confine ourselves.1 (emphasis added).

The above quotation is from an Appeal Court judgement by the then Master of the Rolls–one of the most senior judges in the UK–concerning a child with recurrent leukaemia whose father wanted her to have an experimental treatment, but whose doctors believed that palliative terminal care was in the child’s best interests. It expresses the reason that I found myself somewhat unexpectedly lined up with right to lifers, the Pope and President Trump and being asked to join ‘Charlie’s Army’. I had argued in an interview on Radio 4’s PM programme that in this particular case, it was ethically preferable–and should have been legally preferable–to leave the decisions about Charlie’s best interests and how to pursue them to Charlie’s parents. I still think so, and in this special issue of the JME devoted to the Charlie Gard case, I reargue my case. Because of the widespread unpopularity of my views among doctors, lawyers and ethicists,i I must emphasise that I write to express my personal position and not to represent any of the organisations with which I’m associated. And I should say at the outset that if I had been Charlie’s father–and if my wife had agreed–I should have allowed Charlie to die peacefully with palliative care. But I am not Charlie’s father, and as a medical ethicist and retired general practitioner, I recognise that the issue involves profound moral dilemmas about which people have strongly opposed and well-defended views.

My argument starts with two assumptions; wherever possible, people’s views about moral dilemmas should be morally and legally respected unless substantial harms or substantial injustices would result; and in the case of children who can’t decide for themselves, the law should allow parents to decide their children’s best interests unless, once again, substantial harms or substantial injustices would result. I argue that in this particular case, neither substantial harms nor substantial injustices would have resulted had Charlie Gard’s parents been allowed to pursue their views of their son’s best interests and, therefore, both morally and legally those views should have been respected.

First, respecting Charlie’s parents’ views would not have been unjust or harmful to others

Charlie’s case explicitly does not involve harms and injustices to others. I would have argued vigorously against the National Health Service (NHS) being required to provide treatments with very low probabilities of benefit such as that proposed for Charlie, on the familiar grounds of distributive justice and the opportunity costs to other patients who would be denied very probably beneficial treatments as a result of scarce resources being spent on treatments with very low probability of benefit. But that moral issue did not arise in the Charlie Gard case because his parents had raised substantial funds through generous crowd funding to pay for the course of action they proposed. The moral and legal case for depriving Charlie’s parents of their normal right and responsibility to decide about their son’s best interests rested entirely on the predicted lack of benefit that Charlie could gain from being kept alive and given a trial of a highly experimental treatment. This lack of benefit it was argued meant that the harms Charlie would suffer by being kept alive and being given the experimental treatment could not be justified as being in his best interests. The rest of this paper will interrogate this argument and conclude that it depends entirely on acceptance of only one hornii of a profound moral dilemma while failing to justify depriving Charlie’s parents of their moral and legal right to seize the other horn of that moral dilemma and, on that moral basis, to pursue the course of action that they believed to be in Charlie’s best interests.

Would Charlie experience or be subjected to substantial harm?

Two sorts of harms, it was argued in the courts, would be inflicted on Charlie if the parents’ wishes were followed. The first would be those inflicted on countless infants and children in paediatric intensive care units across the world in the course of keeping them alive on respirators. The second would be any harms caused by the proposed experimental nucleoside therapy itself—but since the clinical evidence was that this latter harm would be likely at worst to be easily controllable diarrhoea, the judge considered that this would obviously be ‘an acceptable side effect’. Thus, the relevant harms caused to Charlie by pursuing his parents’ plans would be the pain distress and discomforts that routinely result from life-sustaining treatment involving respirators. Even that degree of pain and discomfort was conjectural since Charlie did not manifest any of the usual signs of pain and distress—a phenomenon readily explained by his doctors as being the result of brain damage severe enough to prevent expression of pain and distress. The court was told that increased pulse rate in the context of pain stimuli made it probable that Charlie’s extensive brain damage was not sufficient to prevent him from experiencing pain and distress as a result of being ventilated, suctioned and turned and having needles intermittently jabbed into his veins and so on, phenomena that all conscious patients who are being maintained alive by artificial ventilation almost inevitably experience; and the court was told that Charlie was being given pain-relieving medications to minimise these. Crucially, no evidence was given to the court that Charlie was experiencing, or probably experiencing, or would be likely to experience any greater pain and distress than that routinely experienced by thousands of children who are kept alive every year by artificial ventilation in paediatric intensive care units all over the world.

Since parental decision-making rights are not routinely removed from all those parents who authorise doctors to provide life-sustaining ventilator treatment, it is clear that the harms of such treatment are not considered to be in themselves sufficiently abusive to deprive parents of their moral and legal right and responsibility to make decisions about their child’s best interests. Some parental treatment decisions are sufficiently abusive in themselves to justify withdrawing such decisional rights from parents: a parental decision by a Jehovah’s Witness to withhold an otherwise straightforwardly life-saving blood transfusion, for example, or a parental decision to cure their child by beating out devils. The harms of life-sustaining respirator treatment clearly do not fall into this category.

Would Charlie have been benefited by being kept alive and given a trial of experimental nucleoside therapy?

The immediately obvious counterargument to the claim above is that knowingly to inflict any degree of harm on a legally incapacitated patient, adult or child can only be morally and legally justified if it is done with the intention and reasonable expectation of producing net benefit for that patient. But in this case, what is to count as a net benefit depends on which horn is seized of a profound moral dilemma. One horn of the moral dilemma, preferred by Charlie’s doctors and the courts, was to avoid any further pain and distress caused by respirator treatment by withdrawing it and allowing the child to die as peacefully as possible with palliative care but at the cost of forgoing any possibilities of improving the quality of Charlie’s life by trying an experimental therapy which admittedly had only a very low probability of benefiting Charlie—what one specialist called ‘a tiny theoretical chance’ of effective treatment.

The other horn of the moral dilemma, preferred by Charlie’s parents and the doctors who would have cooperated with their preference, was to pursue that tiny chance of benefit on the grounds that a tiny chance was better than no chance. None of the trial evidence stated that there was no possibility that Charlie could be benefited by the experimental treatment that his parents wished him to try, even though all the specialists including the American neurologist who was prepared to provide the nucleoside treatment agreed that there was only a very low probability that Charlie would be benefited. The judge reports him to have said ‘I agree that it is very unlikely that he will improve with that therapy. It is unlikely.’ But ‘very unlikely to benefit’ does not mean and does not entail ‘no possibility of benefit’. It is a value judgement whether or not ‘a tiny theoretical chance’ of effective treatment is worth pursuing when the alternative is no chance of effective treatment—only death. When the judge stated2 (at para 119) that ‘The prospect of the nucleoside treatment having any benefit is as close to zero as makes no difference. In other words, as I have already said, it is futile’ that judge was–like Charlie’s doctors–making a value judgement; he was seizing one horn of that profound moral dilemma.

Seizing the other limb of the moral dilemma, as the parents wished to do, would admittedly be at the cost of causing Charlie some level of pain and distress, but these could be minimised with pain-relieving medications, would be at a level no greater than the levels of pain and distress that are widely accepted throughout the world in intensive care units to be justified in order to keep patients alive, for sufficient benefit—and according to this horn of the dilemma, the way to find out if there would be sufficient benefit would be to try the experimental treatment, meanwhile accepting the low level of pain and distress of keeping their child alive.

It seems reasonable to assert that reasonable people facing this moral dilemma will simply differ about which horn they would consider to be either in their own best interests or in the best interests of their children.

The legal principles for assessing best interests

In his summary of the legal principles on which he was depending for his judgement, the judge, quoting a Court of Appeal case, stated that ‘the judge must decide what is in the child’s best interests’ and that ‘In making that decision, the welfare of the child is paramount, and the judge must look at the question from the assumed point of view of the patient. There is a strong presumption in favour of a course of action which will prolong life, but that presumption is not irrebuttable. The term ‘best interests’ encompasses medical, emotional, and all other welfare issues’. And quoting from another judge, he went on:

Best interests are used in the widest sense and include every kind of consideration capable of impacting on the decision2. (my emphasis).

I argue that two ‘kind[s] of consideration capable of impacting on the decision’ were inadequately considered in this judgement (a judgement that, as I must of course acknowledge, was supported by all possible higher courts, including the UK’s Supreme Court and the European Court of Human Rights). The first consideration is people’s enormously variable attitudes to pursuing low probabilities of benefit in order to seek cures or ameliorations of disease disability and illness. The second consideration is that a sector of the population believe that it is never in a person’s best interests to have his or her life deliberately ended by either withholding or withdrawing an available life-prolonging treatment. Charlie Gard’s parents were not in the second category–they did not believe in keeping Charlie alive as long as possible whatever the quality of his life–but they were extremely keen to pursue a highly experimental treatment that might– just might–improve their son’s quality of life—they wanted him to be ‘given the chance’. They made clear that if a 3-month trial of this experimental treatment did not improve Charlie’s quality of life then they would accept that he should be allowed to die peacefully and treated with palliative care. But they believed that it would be in their son’s best interests to be kept alive until he had been ‘given the chance’ of a trial of that experimental treatment.

On the other hand, the doctors who were treating Charlie believed that the parents’ plan of action was against their patient’s best interests, and, after unsuccessful efforts to obtain the parents’ agreement about this, they asked the Court to rule that it would be lawful for them–the doctors–not to provide the experimental treatment but instead to withdraw ventilation and provide terminal palliative care on the grounds that it was against Charlie’s best interests to continue to be ventilated and to try the experimental treatment.

I do not argue that the doctors were wrong to do this (though I have no doubt that had I been the doctor in charge of Charlie’s treatment, I should have explained that while if Charlie were my own child I would have thought it in his best interests to be allowed to die peacefully, and that while I believed that the proposed experimental treatment was extremely unlikely to benefit Charlie, nonetheless, I should not have considered that what the parents were proposing was so harmful that I could not cooperate with their plans for pursuing their own view of their son’s best interests).

Nor do I argue with the Court’s decision that the doctors were not legally required to provide a treatment requested by the child’s parents which the doctors reasonably believed to be against their patient’s best interests.

But I do argue that from an ethical perspective (and at the time, I hoped from a legal perspective too, given the comment from the senior judge with which I prefaced this paper), the court should have acknowledged (1) that assessment of Charlie’s best interests depended on how an acute moral dilemma was resolved; (2) that it was not necessary or appropriate for the court to resolve that moral dilemma and (3) that both ways of resolving the moral dilemma would be lawful. Thus, the doctors could lawfully decline to pursue the experimental treatment, and if they were to continue to provide Charlie’s treatment, it would be lawful for them to withdraw ventilation and provide palliative care until he died. However, it would also be lawful for the parents to find other doctors willing to pursue the course of action which Charlie’s parents believed to be in their son’s best interests. The American neurologist was prepared to do so—and later on, a papal hospital was reportedly prepared to do so. Had the Court allowed the parents to transfer Charlie’s care to doctors who were prepared to accept their view that it was in Charlie’s best interests to keep him alive in order to try the experimental treatment, the Court would have avoided imposing its own moral judgement concerning an acute moral dilemma, and it would have complied with the Master of the Rolls’s assertion that

We [the courts] have one function only, which is to rule upon the lawfulness of decisions. That is a function to which we should strictly confine ourselves.iii

There are no ‘objective’ solutions to this moral dilemma

In response, the judge would doubtlessly counterargue–as he repeatedly stated in his judgement–that he was required to make an ‘objective’ judgement about Charlie’s best interests. I am not a lawyer, but from an ethical perspective, it seems to me that where the determination of best interests involves choosing one or other horn of a genuine moral dilemma–as it clearly does in this case–it is simply not possible to make an ‘objective’ judgement. There is no method that I know of for deciding ‘objectively’ that one horn of this particular moral dilemma–or indeed of any genuine moral dilemma–is ‘objectively’ the morally correct horn to choose. It is in my view simply mistaken for anyone–even a judge–to claim that his or her decision about which horn of this acute moral dilemma to choose is ‘objectively’ correct. Both horns are morally justified, and from an ethical perspective, it was open to the court to acknowledge this by both legally exonerating Charlie Gard’s doctors from carrying out treatment that they believed to be cruel and futile and against Charlie’s best interests while also legally permitting Charlie’s parents to find doctors who accepted their view that it was in Charlie’s best interests to keep him alive in order to give him a trial of the experimental treatment.

Only if one rejects the very possibility of genuine moral dilemmas (and some ethical theories do reject that possibility3—notably some versions of utilitarianism, Kantianism and intuitionism4) might it make sense to claim that one can make an ‘objective’ choice of one horn rather than the other of what therefore only appears to be a genuine moral dilemma. But if one does accept the existence of genuine moral dilemmas, where sound moral reasoning justifies actions that are morally inconsistent with each other, the best one can do when faced with such a dilemma is to make and defend a moral judgement about which horn of the dilemma to seize while acknowledging that sound moral reasoning can also justify choice of the other horn. In a pluralist society such as our own, which encompasses and accepts within it a variety of moral theories and perspectives, it is surely particularly important to recognise the existence of moral dilemmas and, wherever possible, to accept that both morally and legally people should be allowed to come to their own resolution of those dilemmas—with the proviso as I’ve stated that if that resolution would lead to substantial harm or substantial injustice, it may justifiably be over-ridden. I have argued above that in this case, the harm caused to Charlie–the pains and discomforts of artificial ventilation and associated treatment–is not in itself sufficiently severe a harm–so clearly against Charlie’s best interests–that a parental decision to accept it on behalf of their child should, either in this case or in general, be regarded as sufficient to deprive parents of their normal right and responsibility to make best interests decisions on behalf of their children.iv

An unwelcome implication of the Charlie Gard judgements

The second kind of consideration capable of impacting on the decision’ about best interests that in my view the judgement inadequately addressed is the benefit of continued life. For many people, life–human life–of any quality–is considered a benefit in itself. This is by no means a view that I share,5 but it is fervently held by certain admittedly minority ‘right to life’ sectors within Roman Catholicism, Orthodox Judaism and Islam. Advocates of this view–vitalism–are appalled at the idea of deliberately withholding or withdrawing available life-prolonging treatments including artificial (or ‘clinically assisted’) nutrition, hydration and aeration (ventilation). The precedent set by the Charlie Gard court decisions of asserting that their judgement about the moral dilemma they addressed was ‘objective’ in the sense of objectively correct has grave implications for those who would not wish to withdraw life-prolonging respirator treatment from any patients on the grounds that life itself is a benefit. While I profoundly disagree, and while I would and have vigorously opposed using scarce NHS resources to implement this moral perspective, the implication of these judgements is that private, perhaps faith-based, hospitals should be legally prohibited, even if they make no claim on public resources, from keeping patients such as Charlie Gard alive simply on the moral basis that life itself is a sufficient benefit to justify continued ventilator treatment. This seems to me to be a highly undesirable form of ‘moral imperialism’ by the courts, and again I would argue that in our pluralist society, we should respect ‘moral dissensus’ in these matters.6 Thus, even if there were no intention to try experimental treatment, if parents and doctors agreed that it would be in a child such as Charlie Gard’s best interests to be maintained alive simply because they considered life itself to be a benefit, and if they, like Charlie Gard’s parents, were making no claim on public resources, then the courts should, in my view, accept that such parents and doctors may lawfully seize that horn of that moral dilemma too and keep the child alive.

Conclusion

So to conclude, I have argued that the ethically preferable judgement in the case of Charlie Gard would have been not only to rule as the Courts did rule, that the Great Ormond Street doctors were not legally obliged to provide treatment they considered to be against their patient’s best interests but also to rule that other doctors who did not accept that the parental proposals were against the child’s best interests were not legally prohibited from providing the treatment that Charlie’s parents considered to be in his best interests. Such a judgement would have been both morally acceptable and also consistent with the erstwhile Master of the Rolls’s legal assertion that the role of the courts in such cases was only

to rule upon the lawfulness of decisions. That is a function to which we should strictly confine ourselves.

That counterfactual judgement would also have been consistent with the two assumptions with which I started—wherever possible, people’s views about moral dilemmas should be morally and legally respected unless substantial harms or substantial injustices would result; and in the case of children who can’t decide for themselves, the law should allow parents to decide their children’s best interests unless, once again, substantial harms or substantial injustices would result.

References

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Footnotes

  • i Excluding the esteemed editor of this journal, Julian Savulescu, whose JME blog on 26/4/17 (of which I was unaware until researching this paper!) offered similar views to those for which I’m arguing here.

  • ii I use ‘horn’ rather than ‘limb’ to acknowledge the painfulness of this moral dilemma.

  • iii A legal reviewer of this paper urged me to point out that there is considerable jurisprudential debate about how much, if at all, the law should involve itself in moral decision making and that the judicial view I quote here represents only one side of this debate. Given the word limit for these papers, I cannot engage in this ongoing debate. Suffice to assert that my argument is based on the limited claim that where it is possible for judges to respect both limbs of a genuine moral dilemma, they should wherever possible do so—and that in this case, it would indeed have been possible to have done so.

  • iv Another reviewer of this paper has drawn my attention to an argument by the neonatologist and philosopher, Dr Dominic Wilkinson, that for infants with profound cognitive impairment–such as Charlie Gard–the burdens of life-prolonging ventilation may carry greater weight (Wilkinson D. Is it in the best interests of an intellectually disabled infant to die?J Med Ethics 2006;32:454–9). The relevant aspect for this paper is that severe intellectual disablement can in itself reduce the possible instrumental benefits to an infant of its future life, and that both neonatologists and parents need to weigh this reduction in possible benefit against the harms of maintaining an infant alive. I warmly recommend the thoughtful and careful analysis in this paper which would add weight to Charlie’s doctors’ view (which as I said I personally share) that allowing Charlie to die peacefully would be in Charlie’s best interests. But the analysis does not remove the moral dilemma nor provide a ‘morally correct’ or ‘objective’ resolution of that dilemma.

  • Competing interests None declared.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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