In a blog post today, Julian Savulescu argues that in a parallel adult version of the highly controversial Charlie Gard case, a UK court might thwart an unconscious patient’s previously expressed desire for self-funded experimental medical treatment. He finds the Gard decision deeply disturbing and suggests that we all have reason to fear the Charlie Gard judgment.
I respectfully beg to differ.
Julian’s thought experiment of the billionaire ‘Donald Wills’ is not analogous to the real Charlie Gard case, his analysis of the UK legal approach to best interests cases for adults is potentially mistaken, his fear is misplaced.
Wills and Gard
Thought experiments are an important tool in philosophy and medical ethics. They enable us to analyse our intuitive responses to ethical questions. Comparing parallel cases – for example as James Rachels did in his now famous 1975 paper ‘Active and Passive Euthanasia’ – can helpfully identify factors that are relevant to ethical analysis, as well as factors that aren’t relevant. However, like scientific experiments, thought experiments need to be carefully designed. Otherwise they can mislead.
Julian imagines a wealthy adult patient, Donald Wills, who has a rare mitochondrial illness very similar to Charlie Gard. While Wills’ wife has identified a potential treatment and requested that he be transferred overseas for an experimental treatment, the imaginary court, in a decision parallel to the Gard case, finds that this treatment would not be in Donald’s best interests. The judge denies the request and Donald’s treatment is withdrawn.
However, in a divergence from the Gard case, Julian tells us that Wills
“wishes to live as long as possible. He completes an advance directive to use his money to keep him alive at all costs, should he become ill and unable to express his wishes. He tells his wife about these desires.”
So unlike, in the Charlie Gard case, there is very clear evidence about the wishes of the patient at the heart of the case.
Ethical difference: adults versus children.
This makes a difference from the point of view of ethics.
I have previously argued that in an adult version of the Charlie Gard case, the requested experimental treatment should be provided.
“We might imagine, for examine, an adult equivalent of the Charlie Gard case, where a young adult had a progressive brain disorder and was now unconscious and dependent on life support in intensive care. In such a case, we would likely focus primarily on what we know about his views on treatment. An adult’s wishes might conflict with what would be in his best interests. He might have had idiosyncratic or unreasonable views. He might have made an unwise choice. But, as long as he had the capacity to make decisions, (and as long as the treatment option was affordable), we should try to respect those wishes. So, in this imagined version, if there is good evidence that the adult Charlie had wanted to be kept alive on a ventilator, if he would have wanted to pursue experimental treatment in the US, despite the apparently slim chance of benefit – treatment should be provided or continued.”
The ethical difference is twofold. First, when thinking about decisions in medical ethics we give significant weight to patient autonomy. That gives us a separate strong reason to provide treatment if the patient desires it – or not provide treatment if the patient does not. Second, if we are trying to determine what would be in a patient’s best interests, their values and wishes are important. It is difficult to know how to weigh up the risks and benefits of experimental treatment. But a previously expressed desire to prolong life would be relevant to determining what would be best for Donald Wills.
However, we cannot give any weight to the patient’s wishes in the real Charlie Gard case. He has never been in a position to understand his medical condition or to develop values relevant to the decision. While his parent’s desires for treatment and their values carry some weight– that is not decisive. We shouldn’t allow parents wishes to make harmful decisions for a child, decisions that are contrary to a child’s best interests, even when we we would allow an adult to make the same decision for themselves.
Legal difference
This also makes a difference from the point of view of law. Julian cites the decision in the previous case of Leslie Burke, where the Court of Appeal rejected a patient’s request for a guarantee that doctors could not at some future date withdraw medical treatment (artificial nutrition and hydration) that he strongly desired. The court provided a range of reasons for its decision, but among these was the impossibility of making a binding decision in relation to future medical treatment. The court did not authorize doctors to withdraw artificial nutrition and hydration against Mr Burke’s wishes. It found that doctors would be obliged to consider his wishes, and that if there was any doubt about his wishes or his best interests, the court should be consulted.
In the very recent case of Paul Briggs, a police officer left in a minimally conscious state after a motorbike accident, the court clearly indicated the importance of a patient’s wishes.
“the views and wishes of P in regard to decisions made on his behalf are to carry great weight.”
The court decided, in that case, to authorize withdrawal of artificial nutrition and hydration in accordance with his wishes
In the hypothetical case of Donald Wills, the presence of a specific and salient advance directive makes it even less plausible that a court would decide as Julian has suggested. Advance directives cannot force doctors to provide treatment without benefit. However, in the case of a dispute, with doctors available to provide treatment and the means to do so, it does not seem credible that the request for treatment would be denied.
No reason to fear
What the Charlie Gard case does make clear, is that if there is a dispute about medical treatment for a patient who is seriously ill and unable to speak for themselves, the court’s entire focus will be on the welfare of that individual. The role of the court is to resolve disputes. It is also protective. It means that for you or I, if we are ever unfortunate enough to be unconscious and in need of medical treatment, that no one will be allowed to refuse treatment that would benefit us and that we would have wanted. Nor could a family member, even if motivated sincerely by love and a desperate need to cling on to hope, force health professionals to provide prolonged unpleasant medical treatment that we would not have wanted and that cannot help us.
There are many things to fear about the inevitable decline in health that all of us face. There are very good reasons to talk to our loved ones about our wishes for future medical treatment, and to consider expressing them in an advance directive. As powerfully expressed by Celia and Jenny Kitzinger in a series of important papers, there are good reasons to fear prolonged medical treatment at the end of life despite poor medical prognosis and an outcome that we would not judge acceptable (see here, here and here).
But fears of legally-sanctioned denial of beneficial, affordable treatment, of being refused treatment that we would have strongly desired and could fund. Those fears are phantasms.
What about the W v M case, where M’s family provided clear evidence that she would not want to be kept alive in a minimally conscious state and the judge in that case err on the side of the sanctity of life and the finding that she appeared to experience very rudimentary pleasures? Despite evidence of her previous wishes, the judge ordered treatment to continue to keep her alive. More importantly, it is not merely that people’s wishes should be considered – this has to do with autonomy, not best interests. It is rather that there is reasonable disagreement about interests, and that applies to children. As Parfit and others have argued, sometimes judgements about value are indeterminate. He gives Ruth Chang’s example: who is the greater genius, Bach or Einstein? There may be no answer. Likewise, there may be no answer to the question, objectively is a 10% or a 5% chance of some improvement worth taking? There is reasonable disagreement, a point which courts don’t seem to appreciate
On your first point, the law – in particular interpretations of ‘best interests’ – have evolved since the W v M judgment in 2011. In particular, the decision in Aintree in 2013 – which was the first case under the Mental Capacity Act 2005 to come before the Supreme Court – was a watershed in terms of understanding the centrality of the patient’s own wishes in ascertaining best interests. Para. 45 is directly relevant to the issues you raise:
45. The purpose of the best interests test is to consider matters from the patient’s point of view. That is not to say that his wishes must prevail, any more than those of a fully capable patient must prevail. We cannot always have what we want. Nor will it always be possible to ascertain what an incapable patient’s wishes are. Even if it is possible to determine what his views were in the past, they might well have changed in the light of the stresses and strains of his current predicament. In this case, the highest it could be put was, as counsel had agreed, that “It was likely that Mr James would want treatment up to the point where it became hopeless”. But insofar as it is possible to ascertain the patient’s wishes and feelings, his beliefs and values or the things which were important to him, it is those which should be taken into account because they are a component in making the choice which is right for him as an individual human being. (Lady Hale, Aintree)
So people’s wishes ARE most definitely to do with ‘best interests’
On your second point, there is often disagreement (‘reasonable’ or otherwise) about whether – as in your example – it’s worth taking a 10% or 5% chance of improvement. In the Briggs case there was a chance that he would improve beyond the minimally conscious state. The likelihood and extent of his recovery was discussed at some length in court. Some people in Paul Briggs’ situation would have wanted to take the chance – to wait and see whether recovery to a quality of life that they would consider worthwhile might be possible, in time. What was clear from the discussion in court was that Paul Briggs was NOT someone who would have wanted to take the risk of waiting for a ‘best possible outcome’ – and indeed that even the best possible outcome projected for him by the treating physician and independent expert would not have been for him a quality of life worth living. It doesn’t matter whether his view was ‘reasonable’ or not. The evidence from family and colleagues was clearly and strongly that it was his view and that (as Charles J said), ” if Mr Briggs had been sitting in my chair and heard all the evidence and argument he would, in exercise of his right of self-determination, not have consented to further CANH treatment”. The judgement follows Aintree in giving great weight to the person’s ascertainable values, wishes, feelings and beliefs. (We wrote about this in our analysis of the judgement in Journal of Medical Ethics. )
With a baby, as Dominic Wilkinson points out in his blog post, the courts cannot give any weight to the person’s wishes because he has never been in a position to understand his medical situation, reflect on it, weigh the pros and cons of treatment or express his view. That’s what makes the parallel you attempt to draw between the Charlie Gard case and the two brain-injured adults (M and Paul Briggs) – plus your own invented example – inappropriate, in terms of both law and ethics.
“On your first point, the law – in particular interpretations of ‘best interests’ – have evolved since the W v M judgment in 2011.”
As a layperson, I find this quite concerning, perhaps more so than the initial blog. After all, for M in W v M, whose wishes were overruled just 6 yeas ago, the fact that later judges realised the earlier judge was mistaken is of no use. M is stuck with what their own judge decided was good for them.
Likewise, going forward, another judge might evolve the current understanding to something quite different in my case.
I appreciate it is not a random choice and that judgements do relate to and build on earlier judgements, but equally, an individual judge has considerable freedom to decide what is in my best interests. Whilst that is entirely appropriate in a conflict between two people over property or so on, or even in these cases where wishes are not known, and an impartial judgement may be called for, it seems a bit inappropriate over whether I should stay alive or not where my own wishes are known (unless my wishes impact on other people to an unacceptable degree).
Dear Sarah – I’m not a lawyer, and I suspect lawyers might articulate what I said using different language about the ‘evolution’ of the law, but in essence I completely agree with your views. I understand that ‘M’ had died in any case by the time that the Briggs judgment was handed down but I hope that the case might have been heard again in the light of Briggs if she had still been alive. While it is good news that the law is now more willing to put the wishes, values, feelings and beliefs of the patient central to best interests decision-making about them, there seems no way to undo the damage caused by previous judgments that have (in my view) clearly failed to respect patient wishes. W v M is one such judgement that undoubtedly caused lasting harm to ‘M’ and to her family. The judgment in ‘M’ also had much wider repercussions. By weighing ‘sanctity of life’ far more heavily than patient’s wishes, it sent a signal that the courts were unlikely ever to approve treatment withdrawal from minimally conscious patients. I know of several cases where families (advised by lawyers) abandoned attempts to make court applications for treatment-withdrawal from their minimally-conscious relatives because of this judgment. The harm and suffering caused by W v M is incalculable and (for many families) now irremediable. Jenny Kitzinger and I wrote a blog post about our personal experience of this in relation to our sister, Polly, who was for 2 years in a vegetative and then minimally conscious state and who survives with profound multiple neurological and physical disabilities. She is now trapped indefinitely in a life that she would not have wanted ( http://www.thehastingscenter.org/m-polly-and-the-right-to-die/). The Briggs judgment is welcome but it comes too late for some of us.
Dear Celia– Thank you for taking the time to reply. I just wanted to reply how sorry I am to hear about your sister, and what you must have had to go through as a family to try and have her wishes respected. The work you have been doing is very important.
In philosophy and ethics, there are two distinct grounds for treating, or withdrawing, treatment: respect for autonomy and interests. If you make interests a subjective concept, largely determined by desires, you risk collapsing these. Consider the Jehovah’s Witness who refuses a blood transfusion. If this is what she most wants to do, it is in her best interests to die, as well as being an expression fo autonomy. So too for the person who dies for his country – it was in his interests, good for him, to die, if that is what he most wanted. This is incoherent. Interests are objective, as some judges have noted, though I am not sure if they are using objective in the sense of non-desire based. In order to preserve the autonomy/interests distinction (and acknowledge the corrigibility of people’s evaluation of their own interests – they can be mistaken), one needs an objective or at least partly objective conception of interests. What is an objective conception? One based on objective considerations like pleasure, social relationships, creativity, achievement, control, etc I only looked quickly at Briggs but it seemed to conflate respect for autonomy with promotion of best interests. Now it could be in someone’s best interests to die in MCS. People’s desires come into interests in two ways. Firstly, they are a guide to what might be a good or bad life. There might be some value consideration which has been overlooked. Secondly, the good life might be imprecise such that there are equally good or bad lives, objectively. Then a person’s desires ought to be considered. But wanting it to be valuable does not make it valuable. Wanting to die does not make death good, even if death can be good, or people have a right to kill themselves out of respect for their autonomy. The law does not seem to have fully appreciated the distinction between autonomy and interests.
Thanks Julian.
You are right that in W v M the court made a controversial decision to prioritise one conception of best interests and not incorporate patient wishes in that.
My understanding of recent case law, (as summarised beautifully by Celia) is that the current judicial interpretation of best interests gives much more weight to patient wishes.
As for the second issue – about reasonable disagreement about interests – I am not sure if there is a precedent within legal cases for taking that into account. Others with more legal knowledge than me may be able to answer that.
In the Charlie Gard case, the judge clearly felt that based on the evidence presented at the initial high court hearing, that there was not reasonable disagreement. (At that hearing there was no explicit “10%” claim, and Hirano could only estimate a non-zero chance of improvement). From my understanding of the current hearing, the judge has been giving weight to the new evidence presented by the US expert (Hirano). He explicitly stated that he would not be persuaded by an expert who had not examined Charlie. I think one interpretation of this is as a plausible condition of a reasonable expert opinion.
Really? What would Hirano have learnt by clinically examining Charlie back in March? He had access to the full medical record, including all the examinations of numerous experts, and the (normal) MRI that he requested and the EEG, and other tests. What precisely could have he gleaned that would possibly have lowered his estimate of the chances of nucleoside replacement therapy working? He might disagree with the clinical findings of a dismal and “parlous” state, but that is only going to increase argument in favour of trial of treatment.
I think Hirano’s view was a reasonable expert opinion back in March. He is a highly regarded doctor, a world expert in nucleoside replacement, from a world leading centre. He was given full access to the records and discussed the case with the doctors, after which he lowered his estimates of treatment working but crucially gave it a non-zero probability and indicated he would treat at that time. I think the court rather diminished his evidence back in March (concluding from his evidence that treatment was “futile”), as you are here, by claiming he hasn’t seen the patient. Whether nucleoside replacement therapy is indicated will depend almost entirely by objective evidence like MRI, EEG and signs observable to an trained clinician, and we are repeatedly told how excellent the staff are at GOSH, which I don’t doubt. So why is it a condition of Hirano’s opinion being reasonable about the chances of nucleoside replacement therapy having a chance that he see the patient? He did say in the court hearing that he would defer to intensivists about whether treatment could be conducted in intensive care, which is only appropriate and responsible. He is providing evidence about the chances of nucleoside replacement therapy so what will be added to his assessment of that by physically examining Charlie when he has all the evidence available?
Sorry Dom, I forgot one further thing. Even if you are right that a reasonable expert opinion is based on a personal clinical examination, the appropriate response back in March would have been to say, “You need to come and lay hands on the patient before we will accept your opinion.” But that wasn’t said. Instead, his evidence that it had a non-zero chance of working led to the conclusion it would be futile and he was described as working in an environment where US doctors “will do anything.”
What non-zero chance would be reasonable to take in this kind of situation? This was not explored at all in the court case because the judged dismissed treatment as futile. Parents can expose their children to a 1/10 000 chance of dying by driving them around in a car, for the parents own desires and interests, even at considerable cost to the child’s interests. Provided that the harm of 3 months of intensive care is not great (and we are told by GOSH that they believe Charlie is “beyond experience”) then even a chance as low as 1/10 000 of life could be consistently taken. This is much lower than the 10% now quoted but of course that figure is next to nonsense. It has been plucked out of a few case studies to motivate (appropriately) reconsideration of the issues. We don’t know what Charlie’s chances are until the treatment is started – for that reason, a trial of treatment, even one shorter than 3 months, is very reasonable.
Hi Julian,
on credibility of witnesses:
A situation where there are competing accounts of facts, or experts with different claims about what could be possible – that, I imagine, is grist to the mill for a High Court Judge. There may be evidence or analysis of what judges take into account when deciding who to believe or how much weight to give to different claims. I don’t have direct experience of that; others may be able to comment on it
I imagine that judges look to the expertise of the witness, their knowledge of the specific details of the case, their consistency, as well as perhaps other less tangible factors such as their attitude or demeanour. For example, in some of the accounts of this expert’s testimony in the current hearing he appears to contradict his previous statements to the court. In the current hearing, it was reported that he admitted to not having access to the GOSH records until recently – only to reports of imaging and emails (https://twitter.com/JoshuaRozenberg/status/885505850298687488)
Perhaps I overstated the importance of examining the patient. It is obviously neither necessary nor sufficient for being a credible expert in a case. Nevertheless, as a clinician, I think there are important contextual (perhaps not always tangible) factors that examination of a patient can yield. It also strikes me as one indication (in a contested and controversial case) that an expert is genuinely concerned and interested in the wellbeing of the patient.
I don’t think that any of us from the outside (with access only to the judgment from the initial hearing and not the witness submissions) to assess the credibility of his evidence as opposed to the evidence from multiple other experts that continued treatment would not be of benefit.
Low probability
You are right that the court case has not actively debated the question of what magnitude of chance of benefit would be sufficient to justify providing treatment. That is an important ethical question, and one on which we hold different views.
In his decision, the judge said “The prospect of the nucleoside treatment having any benefit is as close to zero as makes no difference.” His judgement was, apparently, that the chance fell below a threshold sufficient to be worth taking.
Some commentators appear to hold that *any* non-zero chance of benefit would be worth taking if the alternative is death. But while that might be credible if there were no risk of harm from providing the treatment, that becomes less credible if there is harm from the treatment. (Then we circle back to the questions of suffering that we have debated elsewhere and that I won’t revisit here).
One simple reason why we might allow parents to take small statistical chances of serious harm (for example by driving them in a car), but not to seize small statistical chances of serious benefit (by continuing burdensome intensive care), is that in the former case a large number of children will benefit, whereas in the latter a large number of children will be harmed. Assume the numbers are correct – If we allow parents to drive their children around, 9999 children per year will benefit from, while 1 child will be harmed. If we allow parents to prolong intensive care at very low chance of benefit, 9999 children per year will be harmed, for one child to benefit.
And of course it’s the “experts” who are best positioned to determine what is in someone’s interests.
When this is the best kind of argument that our best and brightest can cook up to keep us all locked in Libertopia’s rat cage, you can hardly blame us for hurrying the apocalypse along.
This blog has devoted much attention to the Charlie Gard case. It is now obvious that the discussion is going around in circles, mainly because the academics involved are reluctant to step out of their limited medical-ethics perspective. That despite the fact, that many alternative perspectives are available online, although not in peer-reviewed journals, and not always in academic language.
I will try to move the discussion out of the comfort zone, by considering two hypothetical responses to the Charlie Gard case. The first is a US military intervention. Suppose the legal process has been exhausted and the doctors at Great Ormond Street Hospital are about to withdraw Charlie’s life support. Suddenly, US Marines storm the hospital, rescue Charlie, and take him to the US for treatment. Now despite Donald Trump’s interest in the case, this is extremely improbable, but my question is whether it would be justified, and on what grounds? To save Charlie’s life, in first instance, but more would be needed to justify overruling the British state, in this draconian way.
The second scenario is also improbable, but not so much as the first. It is that Charlie Gard’s supporters storm the hospital, and rescue him themselves. Obviously this is a criminal act under present law, and I am not advocating it, but would it be justified on moral grounds? Should such rescues be legal?
The advantage of these scenarios is, that they tell us that the Charlie Gard case is not really about the patient’s wishes, or their best interests, or the effectiveness of treatment, or the allocation of resources, but about the power and authority of the state. We must remember that Charlie Gard’s parents are prevented from taking him away from hospital, and that if they tried they would be arrested. The decision to place them in that position was taken by the courts, not the doctors, and the courts are an organ of the state. Their authority has nothing to do with medical ethics, and doctors are usually no more qualified than the general population, on the philosophy of the state.
This is exactly right. People are troubled by this case because, from the outside, we see two parents who do want what is best for their child — above all that he be given every chance to live, even if the odds are against it — and then we see the bureaucratic apparatus grinding away and deciding for them and for the child what his “interests” are.
We’ll tell you, citizen, what you need and what you’ll get. And then we get professional experts lending their weight to this as convenient apparatchiks.
Honestly I don’t expect little Charlie has much of a future even with the treatment. But I understand what it’s like to be a parent, and I also see two parents who are willing to foot the cost themselves to see that he gets that small margin.
Then I see the class of administrators, legal theorists, and highly credentialed academics explaining why this isn’t in the child’s “interests”.
It’s no wonder academia is watching itself turn into a marginal enterprise in real time.
The discussion here between Celia Kitzinger, Julian Savulescu, and Dominic Wilkinson is symbolic of the wider underlying problem of isolated elites in western democracies. The elite is inaccessible, has its own ideology and world-view, which it talks about in its own separate language, it refuses to listen to anyone outside the elite, asserts its position with any further explanation, and is incapable of communicating with the non-elite population in a way that would motivate them to support the elite. Inevitably this fuels resentment, and leads to detachment from the democratic political process.
It’s so important to have discussions about key ethical issues across a range of different settings. It was great to listen to Dominic Wilkinson (and others) on the BBC Radio 4 programme, The Moral Maze (http://www.bbc.co.uk/programmes/b08xbjj6) discussing the Charlie Gard case in relation to an issue many people seem concerned about – the morality of parental rights. Should Charlie’s parents have the final say? Can (or should) parents be overruled in decision making about their children by doctors, judges or the state? Raises some really key concerns in an accessible way.
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