In August 2019, a hospital sought a court declaration that RR (a 20 year old man) lacked the capacity to make decisions about the palliative care that he was being offered, and to approve the proposed plan.
At the time of the hearing, RR was at home, very poorly, with his father. He had suffered severe aplastic anaemia for five years. He had undergone a stem cell transplant earlier in the summer of 2019 which had been unsuccessful, partly because he had not consistently followed the recommended treatment plan. Since then, RR had endured neutropaenic sepsis requiring intensive care; he had only recently been discharged. He was expected to die within days or weeks.
RR’s early life had been characterised by significant harm inflicted by both birth- and then foster-families. This then had perhaps been exacerbated by the regular use of non-prescription drugs. His eventual diagnosis included a complex mixture of emotional dysregulation and psychological conditions loosely formulated as Asperger’s syndrome, autism and personality disorder. But he had eventually been successfully adopted, and was greatly attached (and felt indebted to) his adoptive father. Both RR and his father had expressed a wish for a second transplant, although RR, reflecting on a one percent chance of success of a second transplant with a haploidentical donor, subsequently said he could not cope with a further period of inpatient treatment.
RR’s capacity had been presumed until very recently, perhaps only questioned following the failure of his transplant a few weeks before the hearing. The judge relied on an expert in psychiatry to explain how RR’s mental illness might impair his capacity to make decisions about treatment, particularly in weighing relevant information in the balance and then communicating his decisions.
RR’s inability to manage distressing emotions and his pattern of maladaptive coping strategies was likely to make him unable to reflect on the aspects of his treatment that caused him particular distress, leading him to avoiding, not dealing, with them. As a consequence, it was ‘very unlikely’ that RR would be able to base decisions on relevant information disclosed to him. For these and other reasons RR was found to lack capacity to make decisions about whether to have a second transplant.
Since he lacked capacity, it fell to the court to determine whether a second transplant would be in his best interests. Plainly, if it was not, then it would be unlawful to proceed with an intention to cure him.
The court was told that there was ‘no real prospect’ of a second transplant for a number of reasons, not least the specific risks of a haploidentical donor, including the discomfort and risks caused by cytokine release syndrome, the high risk of graft failure, and the morbidities of graft versus host disease. RR had said many times that he would not be able to tolerate a regime of four weeks' isolation together with the preparatory chemotherapy. To this was added the reality that RR ‘…would be a non-cooperative patient … running the associated risks of death and toxicity from transplantation in addition to those of aplastic anaemia’.
Representing the incapacitated RR, the Official Solicitor, after careful consideration, concluded that ‘…the magnetic factors point to allowing (RR) as good a quality of time with his family and friends as possible’. For these reasons, the court concluded that a second transplant would not be in RR’s best interests. RR died 48 hours after the judgement.
In the recent case of NHS Trust v Y (2018), the Supreme Court indicated that as long as the provisions of the MCA 2005 were strictly observed and followed, and there was no dissonance from any quarter, decisions about life sustaining treatment did not need to come to court.
But if the ‘way forward is finely balanced … or there is a lack of agreement to a proposed action…’ then these decisions should be placed before the court. Since RR had very recently been thought to have capacity and expressed a wish for further treatment, the ‘lack of agreement’ was a live issue, and it was plainly right to seek a judgement.
Robert Wheeler, department of clinical law