Legal Update – Weight to be attached…
Legal Update – Weight to be attached an incapacitated adult’s wishes when making best interests decisions
B V D & The Ministry of Defence  EWCOP 15: This judgment considered the weight to be attached to the wishes of an incapacitated former soldier who wanted to travel to Serbia for experimental stem cell treatment for which he had the resources to pay. D’s wish was supported by his mother but opposed by the Official Solicitor and the MoD who were responsible for his care and treatment. The court gave consent to the treatment.
D had sustained a traumatic brain injury whilst serving as a soldier. As a consequence of the injury D lacked capacity to make decisions about his treatment and care. D‘s mother, Mrs B, had extensively researched treatment options for D and identified stem cell therapy as a possible way forward. She identified a clinic in Serbia which was prepared to provide the treatment. D had the funds to meet the treatment as a result of a compensation claim arising from his injury.
Mrs B applied to the Court of Protection for a declaration of D’s capacity and a declaration that it was in D’s best interests to undergo the stem cell treatment. An assessment from D’s treating neuropsychologist confirmed that he was unable to use or weigh up treatment options and his rigid thinking patterns made it impossible for him to think flexibly about the pros and cons of the proposed treatment. The neuropsychologist also considered D to be suggestible to others – D had said that if his mother thinks the treatment will make him ‘normal’ then he will do it.
At an interim hearing the Court of Protection appointed the Official Solicitor to act as D’s litigation friend in place of his mother, Mrs B, and substituted her as the applicant. The MoD were joined as a respondent.
At the main hearing the court heard evidence from Dr Bulboh, the Chief Doctor from the clinic in Serbia and Prof Martino, a widely recognised expert in neuroimmunology including the use of stem cell therapy for the treatment of central nervous system disorders. Dr Bulboh acknowledged that stem cell treatment for brain injury was still experimental and that there was no published research as to its effectiveness. Nevertheless he was adamant that, of the small number of brain injured patients who had been treated with stem cell therapy, 80% had seen some improvement in their condition including 20% who had seen a significant improvement in their quality of life. Dr Bulboh did not consider there to be any significant associated risks.
Independent expert, Prof Martino, opposed the proposed treatment for D. He warned against offers of “miraculous cures based on stem cells for virtually any disease” which only serves to increase the distress of patients. He was extremely critical of information supplied by Dr Bulboh’s clinic which he described as ‘clearly misleading and not supported by solid scientific argument’.
Evidence was also given by D himself who spoke on the telephone to the judge and expressed in clear terms that he wanted to undergo the stem cell treatment and that it ‘would work for him’. He said he wanted to be a ‘normal’ person and thought the treatment would help. He acknowledged that there was no guarantee the treatment would work but was happy to take the risk. His mother, Mrs B, also had a strong belief that stem cell therapy had the potential to improve her son’s condition.
Both the Official Solicitor and the MoD opposed the stem cell treatment on the basis that it had no proven medical benefit and that Dr Bulboh had significantly underestimated the risks to D.
The presiding judge, Mr Justice Baker, drew up a balance sheet of advantages and disadvantages of D having the stem cell treatment and not having the treatment. He identified that a key factor amongst the advantages of D having the treatment was that it accorded with his wishes. The judge adopted the approach to assessing best interests set out in Aintree University Hospitals NHS Foundation Trust v James & others  in which the Supreme Court observed that:
The purpose of the best interests test is to consider matters from the patient’s point of view… [I]n so far 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.
The judge also directed itself to the more recent judgment in Wye Valley NHS Trust v Mr B  where it was held that:
Where a patient lacks capacity it is accordingly of great importance to give proper weight to his wishes and feelings and to his beliefs and values… 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. This is not an academic issue, but a necessary protection for the rights of people with disabilities.
The judge concluded that ‘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 the prospect of success and the possible risks. But I’m satisfied that he wants the treatment and that he wants it very much.’
The Court’s decision
After weighing up the advantages and disadvantages, and taking into account D’s strongly expressed views that he wanted to undergo the stem cell treatment Mr Justice Baker concluded that ‘all life is an experiment’ and that ‘[i]f 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.’ Although the judge acknowledged that this was not an easy decision ultimately he concluded that the court should give its provisional consent to D travelling to Serbia to receive stem cell treatment
This case again illustrates the effect of the Supreme Court judgment in Aintree, namely that the wishes of an incapacitated person (P) are of central importance in the process of best interests decision making. It provides a reminder that the Mental Capacity Act 2005 does not impose a test of substituted decision-making, on the contrary P must be seen as an individual with his/her own values, likes and dislikes and best interests must be considered in a holistic way. The aim of the Mental Capacity Act is to enable the decision maker (in this instance the court) to do for the patient what he/she would have done for him/herself if they’d had capacity to make that decision.
Nevertheless the decision in this case is quite striking insofar as the court has (provisionally at least) consented for D to spend a considerable amount of his compensation payment in pursuing an experimental therapy with unproven results.