Recognising compulsion’s limitations

An update from a regular series written by Mr Robert Wheeler, director, department of clinical law, where he considers various aspects of clinical law that our nursing and medical staff rely on when caring for patients.

In a judgement handed down in August 2023, the case of JM (‘J’), a 26-year-old man refusing treatment, was considered. He had been diagnosed with chronic renal failure two years earlier, and more recently acquired thrombotic thrombocytopaenic purpura. His mother, AM, had schizophrenia. The court found that J's childhood experiences were '...characterised by trauma', which he had not been able to address. These traumatic events, compounded by J's diagnosis with autism, have confounded his efforts to process his experiences in life and '...thwart reasoned decision-making'.

The clinical situation confronting J was his continuing need for a tunnelled dialysis catheter, and thrice weekly haemodialysis.

The clinicians who gave evidence in court agreed that J would die within 8-10 days, in the absence of dialysis. J accepted neither his diagnosis of renal failure, nor the need for dialysis. His mother also rejected the diagnosis and the requirement for treatment. The Consultant Clinical Psychologist told the court that mother and son independently held these views, albeit that the views were irrational. J's belief structure '...had not been superimposed upon him'. Despite repeated attempts, neither JM nor his mother could be persuaded of the need for dialysis or of the fatal consequence of non-compliance. The psychologist told the court that J lacked capacity to make decisions related to treatment for his renal failure, and the necessary hospital admissions required.

Following J’s refusal to remain in hospital (or in the interim to move into a nursing home) after the insertion of an initially-successful dialysis catheter, his clinicians sought court approval for a declaration that it was lawful not to employ chemical or physical restraint to achieve compulsory treatment. Rather, to treat J on a 'responsive' basis; by means of discussion, negotiation and persuasion alone. The court made that declaration in July 2023.

But three weeks later the hospital came back to court urgently. J had been found at home covered in his blood. The dialysis catheter had been deliberately cut. After removal of the damaged catheter, J adamantly refused to have a replacement inserted. On the same day, the hospital convened a best interests meeting, during which five treatment options were considered, including restraint in the form of general anaesthetic, and then enduring treatment in secure facilities.

Ultimately, there was a high level of consensus for the conclusion that it would be in JM's best interests to continue, gently, to offer him a new catheter, but in the meantime (in parallel) to provide palliative care, ceasing to plan for dialysis. No plan to restart dialysis at the point where JM deteriorated into unconsciousness was contemplated.

Counsel for the Official Solicitor, acting on behalf of J, rightly described this as '...a desperately sad case...of a young man who is a victim of a particularly harsh fate'. J did not accept that he would die within a few days. The court found that the doctors and nursing staff had made '...sensitive, creative and if I may say so very patient-focused efforts to persuade JM to accept dialysis, but they have not prevailed'.

The judge noted that J's beliefs in respect of dialysis were so plainly distorted as to manifestly rebut the presumption of capacity. However, '...even if J's reasoning was unsound, his confidence and belief in his own judgement was well-established and unmoveable. The fact that an individual's views may be misconceived does not, however, deprive him of the right to hold them. To approach this otherwise would particularly discriminate against the incapacitous... JM's views on dialysis arise from the complex interplay of his psychological functioning and his life experiences'.

The judge considered it 'unthinkable' that he should not meet JM to explain his decision. Finding it lawful to plan for no restraint, and for palliative care, whilst continuing gently to offer dialysis. 'When I told him of my decision and the fact that he would die, he told me...that he did not want to. Ultimately, all I could do was tell him that the decision was his'.

Robert Wheeler
Department of clinical law