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But all life is an experiment

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D was a 22 year old lance corporal in the British Army, serving three tours in Afghanistan before he was assaulted by a member of his regiment in a bar. He suffered a diffuse axonal injury to his brain, with haematomas surrounding and between and inside the cerebral lobes.

During the next year, he was intubated and ventilated, had a tracheostomy and was fed via nasogastric tube. Slowly, these supportive measures became unnecessary and he moved to military rehabilitation. In the following three years, his extensive therapies for physical mobility, cognitive/neuropsychological input and speech and language rehabilitation resulted in substantial improvement, but he continues to have very significant disabilities and global cognitive impairments. He has reduced attention, concentration, information-processing capacity, memory, executive function and receptive/expressive language.

His mother had identified stem cell therapy as a possible option for treatment of his brain injury. D had expressed a strong desire to receive this, but lacked the capacity to pursue it alone. He had already received financial compensation for his injury, but both the Ministry of Defence and the official solicitor (acting on his behalf as an incapacitated adult) opposed allowing his funds to be used in this way. These two authorities presented the proposed treatment in Belgrade as ‘unproven and risky’; the MoD viewed D’s mother’s position as her ‘…strong and natural desire to see her son’s condition improve (which has) clouded her ability objectively to judge the likely efficacy of the treatment and the risks to D of undergoing experimental treatment of this kind’.

On the contrary, the MoD submitted that the stem cell treatment had no proven medical benefit and was not a viable option. The judge discussed the possible treatment with D on the telephone, and concluded that the wishes he was expressing to receive the treatment were genuinely his own. Whilst D was over-optimistic as to the extent to which the treatment might provide improvement, the judge found that his statements reflected a powerful expression of the strength of his wishes to have treatment. The court found that ‘it was almost certain’ that D would be much more miserable if he was denied the therapy, and did not accept the proposition that his reaction to refusal would be mere disappointment, but that his adverse reaction would significantly impede and delay his rehabilitation. Equally, the court found that it was undeniable that in the event of side effects or treatment failure, D would also suffer, as could his rehabilitation. But the judge also pointed out that ‘…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’.

Having balanced the risks and disadvantages of D’s options, the court reached a clear conclusion that provisional consent should be given to D to travel to Belgrade for treatment. But not before providing stringent conditions to ensure that the clinic fully considered D’s details, provided a formal undertaking that he was suitable for stem cell therapy, and would provide detailed plans of both travel and treatment and follow up arrangements. Finally, the official solicitor was authorised to maintain a degree of control over these arrangements.

Underlying this decision were words from an American court a century ago: ‘All life is an experiment’, as a preface to a more modern decision.[1]

'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?'

A good principle on which to base clinical decisions.

Robert Wheeler

Department of clinical law, October 2018

[1] Munby J in Re MM (An Adult) [2007] EWHC 2003(Fam) [Also on court reports page]