https://www.bailii.org/ew/cases/EWCOP/2023/38.html
This case concerned JM, a 26 year old diagnosed with autism at age 5, since when he had received very little support for his condition throughout a childhood Hayden J described as characterised by trauma. In January 2021 JM had been diagnosed with chronic kidney disease and had acquired Thrombotic Thrombocytopenic Purpura (‘TTP’) requiring 4 hourly sessions of haemodialysis at least three times per week. The clinical consensus noted that without this, JM would die within 8-10 days. However, neither JM, nor his mother, (who had a diagnosis of schizophrenia) accepted his diagnosis of chronic kidney disease or the associated need for dialysis. Hayden J noted that in sharing the same “irrational” view, the independent psychologist was persuaded that ”JM’s belief structure has not been superimposed upon him.”
After a series of capacity assessments, the court had previously made declarations that JM lacked capacity to make decisions about the medical treatment he received for chronic kidney failure, or to make decisions about whether to be accommodated in a hospital or care home for the purpose of receiving treatment. Thereafter JM had refused to comply with an interim move to a Nursing Home or to stay in hospital. The court had approved an “Escalation and Behaviour Support Plan” which declared it lawful NOT to compel treatment by chemical/physical restraint and instead to treat JM responsively – that is, by means of discussion, negotiation and persuasion only. However, JM having subsequently been found in bed at home covered in blood from his dialysis line, with “very little doubt” that JM had cut his own line, it was removed, and JM refused to have a replacement inserted. Therefore the question now arose, which steps it was in JM’s best interests to take.
Hayden J noted that since the prior proceedings the situation was “plainly now far graver” and that “Restraining JM to reinsert a new dialysis line against his will might in and of itself be justifiable. However, JM’s objection is not merely to the reinsertion of the line but to the life-sustaining dialysis it would provide” which going forwards would mean “repeated and extensive restraint on a weekly basis and indefinitely.” Whilst JM’s belief system regarding dialysis was “so plainly distorted as to manifestly rebut the presumption of capacity… JM’s confidence and belief in his own judgement is 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, as well as more generally.” Therefore even though JM’s own reality was very different to that of others, Hayden J noted that it nevertheless ”requires to be respected [and that] it is in this way that the autonomy of the incapacitous is respected” and afforded weight even if they could not prevail. Haydn J referenced what was said inNorth West London Clinical Commissioning Group v GU [2021] EWCOP 59]: “human dignity is predicated on a universal understanding that human beings possess a unique value which is intrinsic to the human condition.”.
He stated “I am clear that forced restraint either in the face of JM’s expressed opposition or at a time when he is no longer able to resist, would compromise his dignity.” And that having spoken to JM on a private video link (the solicitor for the Official Solicitor took a note made available to the parties within 20 minutes) “I found him, as has everybody else involved in his care, to be a very pleasant young man..[who] when I told him of my decision and the fact that he would die, he told me without prompt or question that he did not want to. I formed the impression that he very much wanted to live. Ultimately, all I could do was tell him that the decision was his.”
Hayden J paid tribute to the doctors, nursing staff and JM’s mother and sister. Regarding JM’s mother he stated that although she “struggles to understand the realities of JM’s situation due to her own mental health difficulties, she has an impressive and, I sense, strongly maternal instinct that the use of restraint to compel dialysis would be inimical to his welfare. Those instincts, to my mind, are sound and also require to be factored in to this decision.”
CASCAIDr Comment
This stark case is rightly focussed on JM and the challenges faced around his condition, needs and the competing needs around the preservation of his life, dignity and autonomy. However, we feel it is vital that we also remember the humanity and needs of the treating clinicians. Those hands-on practitioners with whom JM had “comfortable and trusting relationships” would have needed – in contradiction to those relationships, and against the instinct to heal and to help – to do the actual restraining and to bear the likely hostile resistance and suffering of a reluctant patient, even though they would have been seeking to prolong their life.
The case means that there is an important and unspoken issue to be factored in, when working out what a court is likely to say is or is not in a person’s best interests: the extent we ask or expect our clinicians (or in some cases parents and carers) to go to in carrying out their own mission, and to which detriments, distress and suffering a duty of care, TO care, and their Hippocratic Oath might expose them.