“For the purposes of this Act, a person lacks capacity in relation to a matter if at the material time he is unable to make a decision for himself in relation to the matter because of an impairment of, or a disturbance in the functioning of, the mind or brain. (2) It does not matter whether the impairment or disturbance is permanent or temporary.”
“At the time of my assessment, I concluded that [RR] was unable to retain information relevant to the treatment decision and unable to use and weigh information as part of a decision making process as a result of his adjustment disorder and underlying traits of an emotionally unstable personality disorder.”
“[RR] is unable to understand the information relevant to the decision about his treatment. He is unable to understand the complexity of what the treatment would involve and the risks and consequences of his noncompliance with treatment relevant to these proceedings.”
“39 Information from the GP records indicates that [RR] has been diagnosed by a specialist as having Asperger’s syndrome. Emotional dysregulation is not a feature of Asperger’s, but Asperger’s is likely to make communication and emotional regulation more difficult. For example, the rigidity of thinking found in people with Asperger’s is likely to make it harder for a person to develop more adaptive responses to stress (Dr Dunkerley’s example of RR’s response to his injured elbow might fit with this, for example). The observation that [RR] does not wish to talk about the past is also consistent with this. 40 Emotional dysregulation is expected in emotionally unstable personality disorder, but I was able to find to reference in the documents available to me to this diagnosis having been made by a specialist. A history of self-harm is a characteristic feature of emotionally unstable personality disorder and although such a history is noted in [RR]’s recent records, I could find no relevant reports in his GP records. In my opinion, there is insufficient evidence to make this diagnosis. 41 [RR] was certainly given a diagnosis of attachment disorder when he was a child. This is very likely to have been caused by the abuse and other traumatic experiences he had in childhood. However, a search of the published literature failed to identify a clear association between attachment disorder and emotional dysregulation. Attachment disorder, if it continues into adulthood, usually involves pervasive maladaptive behaviours. From the information available to me, it appears that [RR]’s maladaptive behaviours are not longstanding and pervasive, but situational. For example, his behaviour when his aplastic anaemia was first diagnosed, or even before the first transplant, was evidently quite different to his behaviour more recently, because he did not previously have such distressing emotions to try to cope with. Therefore I do not think that attachment disorder contributes substantially to the current clinical picture. 42 Dr Moran raised the possibility of an adjustment disorder being present. By definition, adjustment disorders follow distressing life events, and [RR]’s failed transplant certainly qualifies as such. Also, [RR] has shown distress and anxiety, which occur in adjustment disorder. However, other features of adjustment disorder are absent, such as persistent sleep or appetite disturbance (I could find no references to these in the medical records). For this reason, I do not think [RR] presently has an adjustment disorder. [RR]’s capacity to make decisions about his treatment and litigation capacity 43 In my opinion, there is no doubt that [RR] has an impairment of, or a disturbance in, the functioning of his mind or brain. However, I find it impossible to give a single ICD-10 diagnosis for this disturbance. My preferred formulation, based on the information available to me, is of major problems of emotional dysregulation due to childhood trauma, compounded by Asperger’s syndrome (see above). Dr Moran’s diagnosis of traits of emotionally unstable personality disorder is consistent with the crucial importance of emotional dysregulation. 44 This formulation is very likely to impair [RR]’s capacity to make decisions about his treatment, particularly in weighing relevant information in the balance and in communicating his decisions. [RR]’s poor ability to manage distressing emotions and his pattern of using maladaptive coping strategies is likely to result in his being unable to reflect on aspects of his treatment which cause particular distress. Rather than thinking about such aspects or talking with someone about them, [RR] will do whatever he can to avoid them. As a consequence, it is very unlikely that he can base any decisions on all the relevant information available to him. [RR]’s evident reluctance to talk (and presumably also think) about the past also contributes to this, in that future decisions are commonly based, to some extent at least, on past experience. In addition to their effect on using information, the thinking mechanisms just described will affect his ability to convey his decisions to others and more particularly to consider other options where necessary. For the same reason, the mechanisms just described are likely to interfere with his ability to conduct proceedings. If he is striving not to become overly distressed, it can be predicted that he will try at least sometimes not to pay attention to distressing information he is being given. This is likely to interfere with his registering such information. 45 The processes just described are not amenable to change using any shortterm intervention. [RR]’s autistic traits could be modified with long-term therapy and coaching, but there is no likelihood that they would respond to a brief intervention, even if [RR] was amenable to such an intervention. Emotional dysregulation also requires long-term therapy. As [RR] noted in his interview with me, particular types of interaction can exacerbate [RR]’s distress and therefore make it more likely that he will employ his usual maladaptive coping strategies. There are evidently some people who are better able to engage with him than others. However, in my opinion, even if it were possible to engage [RR] optimally, the problems described above would persist. In other words, in my opinion, optimising the interaction of staff with [RR] would still leave him with impaired decision-making about his treatment. 46 Regarding [RR]’s capacity to make decisions about his treatment, I would also note that his adoptive father understandably has strong views. My interview with [RR] and his father indicated that father has tried to persuade [RR] to adopt his father’s views.” [RR]’s capacity to make decisions about his treatment and litigation capacity [RR] to adopt his father’s views.”
“I struggle with this. There are undoubtedly points at which it has been possible to have calm discussions with [RR] and when it has been possible to see that he has understood aspects of his situation. I am still not sure whether this applies to the moment at which he needs to make decisions, however. When he is calm and when he is engaged with someone he trusts, he can exchange information and he is aware of relevant information that he needs to consider but this does not go as far as identifying that he has made a decision.”
“He wants to be autonomous. I am still uncertain whether the factors in para.44 would be irrelevant in his finally trying to reach a decision but the setting is all important.”
“That interview is striking but I do not think it covers all the aspects of decision making. It does not cover him giving a decision. I cannot say what processes have been involved.”
“As anxiety increases, the reality is that the four factors (those are the four factors referred to in para.44) are more likely to be prominent.”
“Whilst all life is precious, ultimately [RR]’s remaining likely limited further period of life should be as comfortable as possible, to permit him to enjoy his remaining time with his family, his father in particular, his girlfriend and other half-siblings and friends. After careful consideration, the prospect of around a one per cent success rate in respect of a second graft appears insufficiently compelling given it would subject [RR] to arduous treatment in a confined hospital setting which he clearly has struggled with and which could also mean he is unable to see family and friends, given the need for him to be nursed in isolation. Further, such a decision is more consistent with his more recently expressed wish not to have the treatment and his feeling of importance by being with those he loves. The magnetic factors point to allowing him as quality a time with his family and friends as possible.”