Judge: Baker J
Citation:  EWCOP 15
In this fascinating case, 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
|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
|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:
“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.
However, as Baker J noted:
Having outlined the key medical evidence, Baker J noted that Dr Bulboh accepted that his treatment was experimental – but that:
“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.
This case shows – again – the Aintree effect. D was, of course, ‘lucky’ that he had his own resources so that the decision that Baker J had to construct on his behalf was not one constrained by the willingness of statutory bodies (here the MOD) to fund particular options. But the willingness of Baker J to take a calculated risk on the part of D is striking.
For those who want to think more about this decision sits with the CRPD, see Alex’s post here.