By Imogen Goold, 8th March 2022
UPDATE: The judgment is now published: Manchester University NHS Foundation Trust v WV  EWCOP 9 (08 March 2022). Latest news: “Autistic kidney-row teen’s transplant ‘a success’“
I’ve been watching a four-day Court of Protection hearing about whether a kidney transplant is in the best interest of William Verden, a 17-year -old with a rare kidney condition and end-stage kidney failure. He is also autistic, and has a learning disability and ADHD.
I observed this hearing wearing two hats: as a legal academic and also as the parent of an autistic child.
As a parent, I found it difficult to listen to descriptions of how William’s needs had been managed. At various points, it was absolutely clear that had there been greater understanding of those needs, William would have been more able to cope with the many challenges his treatment presented.
I was struck, too, by the way the Trust framed his behavioural difficulties. Clearly, William’s behaviour was at times very challenging for those offering him care, but I found it disheartening to hear repeated descriptions of that behaviour as almost intolerably difficult. Ms Butler Cole QC, acting for William’s mother, Amy McLennan, raised a concern that there was a narrative building up amongst those who didn’t know him that he was terribly difficult, but that from those who had actually met William and worked with him, the picture was very different.
Ms Butler-Cole QC made the very important point, too, that the person who knows him best — his mother — had considered his behavioural challenges very carefully, and felt that his behaviour was much more able to be managed than was being suggested. She pointed out that Amy McLennan had explained that William could be helped to accept treatment – it just had be approached in the right way. I felt strongly for Miss McLennan at this point, because it was clear that she was in a position I recognised well from my own experience: that of not being listened to, despite being best-placed to know her child’s capacity. Of all the parties involved, she will have spent the most time with William, know best how to support him through years of experience, and her perspective on what was right for him, how he might be supported and what he could achieve if he were, deserved substantial weight.
Part of this narrative was the repeated suggestions that he might pull out his lines, but both Ms Butler-Cole and Ms Sutton through careful exploration of the evidence demonstrated that this had not been the case in the past. It seemed, however, that the Trust feared that regardless of this fact, he might be likely to pull them out in the future anyway. Again, this is a familiar scenario for the parent of an autistic child — the extrapolation that if they have exhibited one challenging behaviour, this is evidence that they will exhibit a different challenging behaviour in the future. But, as both counsel rightly pointed out, this is simply unconvincing. As Dr B explained, in such cases, past behaviour is the best predictor of future behaviour, and if he had no history of pulling out lines, then there was not a sufficient reason to predict he would do so in the future if the conditions remained similar.
At this point I shall begin to swap my hats over. Over the course of three days of evidence, it was made clear multiple times that a neurotypical child in William’s position would have unquestionably been offered the option of a transplant. Having listened as a parent, I found it hard not to think “is this discrimination?”. Or are they simply under-estimating him?
I do not take the view that his life was considered any less valuable, and there was certainly no suggestion of this on the part of the Trust. It was, I should be clear, very evident that the Trust wanted to do what was right, and were very concerned for William’s wellbeing. But a comment from his mother when she made a statement to the court brought my uneasiness into sharp focus. Ms Butler-Cole QC asked her what she thought about all the risks associated with the transplant, the long-term psychological consequences and so forth. She simply replied “the other option is death”.
How, then, on any analysis could it not be in his best interests to have the transplant?
Well, of course there are many cases in which life-sustaining treatment is not considered to be in the patient’s best interests. In the case of treatments that have no clinical benefit, or no chance of success – those that are futile – the question of patient best interests usually does not arise because these treatments are not ‘available options’ to be considered by the court. In some cases in which best interests need to be determined, it will be a matter for debate whether a treatment is futile, and so this will form part of the overall determination. For example, in the case of Charlie Gard, it was debated whether the treatment his parents wanted for Charlie would have any chance of success. It was held that the treatment was futile, and so it could not be in his best interests for it to be offered.
In this case, the proposed treatment was clearly not futile, and hence it was an available option. But the concern was that the sedation and ventilation needed maximise the likelihood of successful a successful transplant carries serious risks that raise the question of whether it is in William’s interests to receive it.
If William is able to tolerate not just the transplant but subsequent treatments, given the likely scenario of disease recurrence, then the chances of it extending his life are the same of those of any other child with the same condition (who, we know from the evidence, would have been offered the option of transplant). So this case is not at all like those where the Trust does not support the option of offering the treatment because it considers it to be futile.
Rather, this is a situation in which the Trust is concerned that the harms and benefits arevery finely balanced, and hence it looks to the court for direction on what is in William’s best interests.
To determine whether a treatment is in an incapacitated person’s best interests, the court performs a ‘balancing exercise’, examining factors for and against.
In favour, is the chance that it might prolong his life, that it is what he wants, that it accords with what his family want and that the risks it entails might be mitigated.
Against, are the limited chances of success, and that there are considerable risks associated with the treatment that might cause him harm.
This led to one of the key elements for discussion — whether he could tolerate the treatment and the post-operative care he would require.
It was never seriously suggested that he could not tolerate it at all, nor that the treatment simply could not be performed. Rather, it would be deeply challenging, and he might (the Trust believes) remove lines and thereby undermine the treatment’s potential efficacy.
Even if the transplant were to succeed, he might suffer life-long psychiatric injury as a consequence of the treatment. At the worst, the grafted kidney might be lost if William’s behaviour preventa the supportive care he would need post-operatively.
However, my position is that even if that were the case, it would still be in his best interests to receive a transplant, as it at least gives him a chance that it would succeed. To refuse it obviously means he would have no chance, and it is trite (but perhaps necessary) to point out that some chance is better than no chance.
It could only, then, be in William’s best interests not to receive the transplant if, on balance, he would be worse off after having it than he would if he remained on haemodialysis.
The evidence was that without the transplant he would have to have numerous sessions of haemodialysis each week and would die within around 12 months.
By contrast, the transplant has the potential to extend his life by between 7 and 20 years, depending on whether his disease recurred.
The Trust’s argument initially on why it felt the matter was ‘finely balanced’ was that the transplant would be burdensome, painful and was likely to leave him with a severe psychiatric injury for some years, and might be futile. This psychiatric injury would flow from the sedation and ventilation William would need, it was argued, to tolerate the post-operative lines and treatments.
But why, we should ask, was this even a question of best interests, because of course there are many situations in which children are sedated and ventilated to enable them to receive life-saving care? This happens regularly in paediatric intensive care units, and while some of those children suffer the same psychiatric injuries that William might experience, there is seemingly no question that the treatments are worth the risk, given that the alternative is death. Evidence was given that children are sedated for even the longest period that had been suggested for William at one point (6 weeks), and the outcomes and risks were well-known.
The answer from one of the Trust’s intensivists was that even with the harms it brings, sedation and ventilation in the intensive care context is a positive thing because it enables the child to survive a critical illness. An example might be a child with sepsis who must be sedated to enable life-saving treatment. The distinction, it was suggested, was that here it is an entirely elective intervention, and that seems to alter how we might think about risks. But this is a mistake. If William can only have the kidney successfully with sedation and ventilation, the cases are the same — both the critically ill child with sepsis and William alike will die without it.
It was agreed by all that it was not really an option to proceed without sedating him for at least seven days post-operatively, and so William’s case is effectively the same as that of the child with sepsis, so the only difference is the time available to think about the risks and benefits.
These critical case decisions are not in substance different, it is simply that the evaluation has already been pre-made — it is assumed that it is better to try to save the child’s life, even at the risk of later psychiatric injury. The question is not asked, not because there is no time, but because the reasoning for cases of this kind has already been undertaken. That William’s case allows some luxury of time to think about the calculus should not change that calculus, if both concern a child who will without receiving treatment, which includes sedation and ventilation. The calculus on the risks of sedation should be the same — that is it worth the risk if it prolongs his life.
This accords with the Mental Capacity Act 2005 Code of Practice (the Code), which directs that ‘all reasonable steps which are in a person’s best interests should be taken to prolong their life’.
The major concern raised repeatedly was the burden of the treatment on William in terms of the harm it might cause him — in terms of distress, and the risk of a psychiatric injury. So the question is whether the steps needed, in this case the sedation, would be reasonable. It is hard to see how they cannot be, given the sepsis example, and given that they are necessary to prolong his life.
But the Code does note that ‘there will be a limited number of cases where treatment is futile, overly burdensome to the patient or where there is no prospect of recovery’. This provision leaves room for a treatment that might be life-prolonging not to be regarded as in the person’s best interests if it considered too great a burden to place upon them. This was not the Trust’s argument in any explicit way, but the risks and burdens to William did appear to be the major concern that made the matter so ‘finely balanced’, rather than a clear decision in favour of offering the possibility of a transplant that could lengthen his life.
So, the fundamental question is whether a life that is longer, potentially marred by a psychiatric injury, is worse than a much shorter life, marred by regular haemodialysis and the distressing knowledge that the option William wanted was denied him.
To make such a decision on behalf of someone else is of course profoundly difficult, as we do not all take the same view of what makes a good life (or a good end to our lives). Rightly, section 4(6) Mental Capacity Act 2005 takes account of this in directing the court to consider, so far as is reasonably ascertainable, the person’s past and present feelings, and the beliefs and values that would be likely to influence his decision if he had capacity. Further, the Mental Capacity Act 2005 Code of Practice sets out, the person who lacks capacity should be at the centre of the decision to be made, but their wishes, feelings, beliefs and values ‘will not necessarily be the deciding factor in working out their best interests’.
The extent to which the court does so sufficiently in practice, however, is a matter of debate. In cases such as Wye Valley NHS Trust v B, the incapacitated person’s wishes were followed. In that case, it was considered that the treatment would not be in a patient’s best interests because Mr B was so firmly opposed to it, and the court respected his Mr B’s refusal.
The Supreme Court emphasised in Aintree v James the central importance of ascertaining and taking account of the person’s wishes.
In many others cases, however, decisions have been taken with which the incapacitated person strongly disagreed. For example, in Re E (Medical Treatment – Anorexia), E was found to lack capacity due to her anorexia and the court declared that ‘it was in her best interests to be fed against her wishes with all that this entails’.
In William’s case, his wishes are clear but the risks to him if he is sedated are very serious, hence the Trust’s perception of the matter as ‘finely balanced’.
In cases such as this, Baker J (as he then was), has rightly urged the court to allow incapacitous people to take acceptable risks to achieve some good, particularly their own happiness (B v D).
I would argue that in a case such as this, the court should be strongly influenced by Baker J’s view, in part because William has formed clear views about which course of action is more likely to bring him happiness. It is important that it is not assumed that William, by reason of his disability, is incapable of forming desires about how he wants to live. He can and he does, despite lacking full capacity to make his own decisions.
The evidence was that William very much wanted the transplant. Indeed, the impact on him of learning that he would not receive a transplant, if denied, was described as likely to be very harmful. Not only would he distressed and disheartened, but it was suggested that he might resist coming back to the hospital or receiving the haemodialysis needed to prolong his life. Ms Sutton (William’s litigation friend via the Official Solicitor) argued that: “it’s reasonable to assume that he would take on the risk of psychological harm, he would take on board the risk of psychiatric harm if it meant that he has a chance to life longer…”
Added to this is the evidence of the impact on William of denying him the treatment option he would wish to pursue. It became clear that he would find being told that there was no possibility of him being considered for an organ transplant very distressing, and that this might undermine his engagement with future care (such as ongoing haemodialysis and hospital visits). The burdens of treatment must be weighed against both the benefits, and the certainty that William’s life will be considerably shorter without the transplant, and those remaining months will be blighted by his distress at being denied the kidney he had been told might save his life.
For anyone this would be hard to process; for a child with autism spectrum condition, it would be even harder. Evidence was given that he would find it particularly difficult to accept that what he regarded as a promise had been broken, supposedly for his own good. Children with autism often struggle with black and white thinking, and have strong moral codes for understanding the world. When something such as a promise is broken, or a plan is not followed, they suffer particular distress. For a child like William, with the addition of learning disabilities and challenges in understanding abstract concepts, this distress would be even further compounded.
I would also argue that the court should resist the temptation to regard William’s life as so full of challenges, that he (unlike other children) should be denied a chance at a longer life because those challenges might be compounded by the distress of a psychiatric injury. We would not deny the septic child the chance to live, even if sedation would reduce her quality of life. Nor would we deny the neurotypical child a chance at life because the transplant might fail. So we should not deny William. The burdens on him if the treatment fails or results in injury will be very serious, but the evidence did not support a conclusion, in my view, that they would be too burdensome to outweigh the possibility that his life will be prolonged and its quality markedly improved.
Parents, in my experience, are the best judges, of what their children with disabilities can achieve. Our children are constantly under-estimated, set aside, and given insufficient care and support. William has, by any estimate, done an incredible job in tolerating the treatments to date. He has shown exceptional resilience and courage in the face of challenges any child would find difficult, let alone one with his particular disabilities. This should be recognised in determining whether the burdens are too great, as should his clearly asserted wishes.
Hopefully, the court will listen to William himself, and to the person who knows him best — his mother, Amy — who urged them just to give him a chance.
Imogen Goold is Professor of Medical Law at the University of Oxford. She tweets @ImogenGoold