All life is an experiment – patient choice from the other side of capacity

In a fascinating judgment, B v D [2017] EWCOP 15, handed down on 5 September, Baker J had to consider whether it was in the best interests of a soldier, D, to travel to Serbia to receive stem cell treatment for a traumatic brain injury he had suffered at the hands of a fellow soldier.  This proposal was advanced by his mother – who brought the proceedings herself, and acted in person – and who Baker J noted was “utterly devoted to ensuring that he receive[d] the best possible care and support.”  As D had resources to pay for the treatment from a compensation payment, the question for the court was whether it was in his best interests (i.e. this was not a case where the options open to him were constrained by public funding, notwithstanding the fact that the Ministry of Defence remained responsible for his overall care and treatment).

It was clear that D did not have the capacity to make the decision. His mother served with her application evidence from D’s treating neuropsychologist to the effect that, as a result of the impairment to his brain, D lacked the capacity to make decisions concerning his medical treatment:

[…] In particular, he lacked the capacity to understand, use and weigh the relevant information. The neuropsychologist expressed the opinion that, due to his cognitive difficulties, D was not able to understand more complex information. He was able to say that the stem cells will make him “normal” but was not able to follow the description or the rationale of how they work. Furthermore, as a result of his difficulties, he was unable to use or weigh up the options as part of the decision-making process. His rigid thinking patterns made it impossible for him to think flexibly about the pros and cons of the treatment. The neuropsychologist added that D was assessed as being vulnerable to being suggestible to others. He said that his mother thinks the treatment will make him “normal” and therefore he will do it.”

D very much wanted the treatment.  As Baker J relayed his conversation with him:

“D told me that he wished to have the stem cell treatment and that it would work for him. He said the reason why he wanted to have the treatment was that he wanted to be a normal person and thought the treatment would help. I asked whether he was ok about flying to another country for the treatment and he said yes. I asked whether he understood that there was no guarantee that the treatment would work and he replied that it would work for him. I asked whether he was happy to take the risk that it would not work and he replied “I am”. When I asked D how he was getting on at Y Hospital and whether it was better than where he had been before, he replied “no”. When I asked whether he was making progress there, he replied “not at all”. When I asked what else he would like to say to me about the treatment, he repeated: “I just want to be normal”. Mrs B then spoke, thanking him for coming to the phone and telling her his wishes. She said that she would call him later. D replied “I want stem cell mum, I want to leave here and don’t want…” It was not possible to discern precisely what D said at that point, but Mrs B summarised what she understood D had said he wanted, namely that he said that he wanted the treatment because he thinks his speech will improve and the tightness on his left side will improve. At that point, we said goodbye to D.”

The evidence before the court included, importantly, evidence from the chief doctor of the clinic in Belgrade, Dr Bulboh, and evidence from an Italian expert, Professor Martino, who was opposed to the treatment.

The proposal was opposed by both the Ministry of Defence and the Official Solicitor as his litigation friend, for slightly different reasons.  A balance sheet for and against having the treatment was drawn up by Baker J combining the balance sheets produced by their respective Counsel. As he noted (at paragraph 55) this set out “an aide memoire of the key factors and how they match up against each other and as a route to judgment rather than a substitution for the judgment itself,” and is reproduced below.

Having the stem cell treatment

Advantages Disadvantages
It accords with D’s consistent and strongly-held wishes and feelings The efficacy of this treatment has not been established through any clinical trials. According to Prof Martino, Swiss Medica does not adhere to the international regulations that should be followed in these matters
It accords with the views of his mother D will be exposed to known risks (allergic reaction, developing a tumour, risks associated with the procedure e.g. lumbar puncture and use of a catheter) and also to unknown risks which cannot be excluded because of the absence of clinical trials or research.
Any adverse psychological reaction to being prevented from having the treatment is avoided. Regardless of treatment outcome there may be psychological benefit to D arising from (1) his having his wishes respected and (2) knowing that what he sees as a potential treatment avenue has at least been tried. Travelling to Serbia to undergo the treatment risks disrupting his rehabilitation programme and the ongoing physical and psychological work.
There is a potential for improvement, although the evidence for this is only the anecdotal evidence of Dr. Bulboh unsupported by any research or by the opinion of Prof Martino. He has made substantial progress through rehabilitation and is anticipated, at some point, to move on to a community step-down placement. If he develops a serious illness as a result of the treatment, his future prospects would be considerably worse.
D may have an adverse psychological reaction when he does not see any benefit from the treatment
The treatment is expensive. He will be spending the money he received from his compensation award on an ineffective treatment when he could otherwise spend the money on   care/therapies /treatment or on other things he would like to do to enhance his life

Not having the treatment

     Advantages Disadvantages
He does not undergo a treatment which has no scientifically proven benefit The decision does not accord with D’s wishes
D is not exposed to known and unknown risks There is a risk that D will have an adverse psychological reaction when told that he will not undergo the treatment
The progress he has made through rehabilitation is not put at risk The decision does not accord with the wishes of his mother
He does not spend a substantial amount of his compensation monies on a treatment which may be ineffective. He loses the opportunity of a possible improvement which the treatment might achieve.

Having directed himself earlier as to the approach to best interests by reference to the Aintree approach, Baker J then analysed precisely how this mapped onto the facts of the case directly before him. As he noted:

56. The key factor amongst the advantages of allowing D to undergo stem cell treatment, and the disadvantages of refusing, is that it accords with D’s wishes. I accept that D has a significantly limited understanding of what the treatment entails and of the prospect of success and of the possible risks. But I am satisfied that he wants the treatment and that he wants it very much. I agree with the observation of Peter Jackson J in the Wye Valley case quoted above that

“once incapacity is established so that a best interests decision must be made, there is no theoretical limit to the weight or lack of weight that should be given to the person’s wishes and feelings, beliefs and values. In some cases, the conclusion will be that little weight or no weight can be given in others, very significant weight will be due.”

Wishes and feelings of an incapacitated adult are an important factor in any best interests analysis. As Ms Dolan recognised, the fact that D, although lacking capacity, is in cognitive terms relatively high-functioning does not by itself mean that his wishes and feelings carry greater weight. But it may make it easier to discern and understand what those wishes and feelings are – easier, adopting the words used by Baroness Hale in the Aintree case, to “see things from the patient’s point of view”. In this case, I am very clear that D has a very strong wish to undergo stem cell treatment.

57. I also find, as Ms Dolan, I think, accepts, that the views D is expressing are his own views. I do think that B has some influence over her son, but from his own statements, in particular his statements to me, I am very confident that the wishes he is expressing are genuinely his own. The Official Solicitor and the MOD have both relied on D’s statement that he wants the treatment so that he can be “normal” as evidence of his lack of understanding of the treatment and its prospects of success. But I see this statement more as an expression of the strength of his wish to have the treatment. He may be over-optimistic as to the extent to which the treatment may improve his condition, but I find he is aware that it may not work at all. As he said to his mother – “Mum, if I don’t try, I’ll never know”

However, as Baker J noted:

58. The key factors on the other side of the argument – the disadvantages of allowing treatment and the advantages of refusing it – are that it is unsupported by any or at least any significant body of research, that it has not been subjected to clinical trials, and that the evidence that it is, or might be, an effective treatment for traumatic brain injury is almost entirely anecdotal. […]

Having outlined the key medical evidence, Baker J noted that Dr Bulboh accepted that his treatment was experimental – but that:

60. But all life is an experiment. In my thinking about this case, I have repeatedly come back to those words of Munby J in Re MM , and to the rest of the passage, in particular:

“Physical health and safety can sometimes be bought at too high a price in happiness and emotional welfare. The emphasis must be on sensible risk appraisal, not striving to avoid all risk, whatever the price, but instead seeking a proper balance and being willing to tolerate manageable or acceptable risks as the price appropriately to be paid in order to achieve some other good – in particular to achieve the vital good of the elderly or vulnerable person’s happiness. What good is it making someone safer if it merely makes them miserable?”

In this case, I think it almost certain that D will be much more than miserable if he is denied the opportunity to have stem cell treatment. I do not accept that his reaction will be confined to mere “disappointment”. It is highly likely that he will demonstrate an adverse reaction in his behaviour which may significantly impede and delay his rehabilitation. In saying that, I do not deny the possibility that D may also be distressed, and suffer an adverse reaction, if the treatment does not go well, or if he suffers side-effects or contracts an illness as a result of the treatment. But, as Peter Jackson J observed in the Wye Valley case, as cited above, “for people with disabilities, the removal of such freedom of action as they have to control their own lives may be experienced as an even greater affront than it would be by others who are more fortunate.” Thus, as identified in the balance sheet above, regardless of treatment outcome there may be psychological benefit to D arising from his having his wishes respected and knowing that what he sees as a potential treatment avenue has at least been tried. As Baroness Hale emphasised in the Aintree case, decision-makers must look at the patient’s welfare in the widest sense, not just medical but social and psychological. If D is denied the opportunity to have stem cell treatment on the grounds that this is the safer option, there is in my judgment a strong argument that his safety may be bought at too high a price in terms of his happiness and emotional welfare.

61. I have not found this an easy decision but, having appraised the risks and considered the advantages and disadvantages of the options in this case, I have ultimately reached the clear conclusion that this court should give its provisional consent to D travelling to Belgrade to receive stem cell treatment [subject to a stringent series of conditions that would have to be met before he could give final approval.]


This case shows – again – the Aintree effect. Further, coming just a week after the Committee on the Rights of Persons with Disabilities concluded (in reality to no-one’s surprise) that the current mental capacity framework in the UK does not comply with Article 12 CRPD, this case serves as an example of why a very narrow focus on the issue of a person’s functional decision-making capacity is unhelpful when we look at the real issue – namely the support of the exercise of legal capacity by those with cognitive impairments.

If (which I accept is at this stage an assumption) the tests set by Baker J are met as to the completion of the relevant further steps, then D’s legal capacity to choose – and pay for – highly experimental stem treatment will have been secured on an equivalent basis to a person without cognitive impairment. In the process, the ‘system’ will have responded to the support being given to D by his mother – and in so doing carefully identified whether this can properly be characterised as support rather than undue influence. In constructing a decision for him, which, legally, will be his decision given the terms of s.16 MCA 2005, the system will further have recognised the clear and consistent wish of D to undergo the treatment, notwithstanding that this came from the other side of the mental capacity line drawn in the Act. This wish will have been used as the start, and indeed, end point of the process of the construction of the decision, a process which also included the type of interrogation of risks and benefits that an ‘ordinary’ patient would undertake, but which the effect of D’s brain injury made it difficult (or impossible) for him to do. The decision that will be made on his behalf – and in his name – will enable D to travel to, pay for and receive treatment at the clinic in Belgrade as if he lacked any form of cognitive impairment.

This is, of course, all forbidden substituted decision-making under the terms of General Comment 1. For my part, however, it seems to me that this can equally properly be characterised as the taking of measures responding to D’s cognitive impairments to support the exercise of his legal capacity. Critically, these are measures which fully respect his autonomy, rights, will and preferences (to use the phrase from the Committee’s concluding observations at para 30(b), adding ‘autonomy’ to the concepts of ‘rights, will and preferences,’ enshrined in Article 12(4)). It therefore seems to me that cases such as this challenge assumptions contained in the General Comment/Concluding Observations just as much as cases such as DD’s should challenge those in the ‘system’ here to justify draconian interventions contrary to the wishes and feelings of the individual concerned.

Finally, I will also use this opportunity to plug an excellent work for those who might want to think more about what ‘autonomy’ might or should mean in this context, and also about how relationships can harm or – as here – support the autonomy of individuals with impairments. Mental Capacity in Relationship: Dialogue, Decision-Making and Autonomy by Camillia Kong takes a detailed, interdisciplinary look, at these tricky issues, zooming the lens out from a narrow focus on the capacity/incapacity divide to examine why and how (and with what skills) we can justify intervening into disabling relationships and the skills and practices that are required to respond to the needs of individuals with impairments. And for those who want to see how this could be translated even more directly into practice, watch this space for the guide for front-line professionals that she and I will be publishing next year based on this work.


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