Dialysis and different realities – the Court of Protection has to decide

In a recent ruling a senior judge has helpfully reminded us of the fact that a person with cognitive impairments may be operating within a very different reality to everyone else does not mean that it is a reality which can simply be ignored, writes Alex Ruck Keene KC (Hon).

The case of Nottingham University Hospitals NHS Trust v JM & Anor [2023] EWCOP 38 concerned a 26-year-old man, JM, who was diagnosed as autistic at the age of 5, but had received very little support for it.  His childhood experiences were described by Hayden J as having been characterised by trauma.  He was diagnosed with chronic kidney disease in January 2021 and had acquired Thrombotic Thrombocytopenic Purpura (‘TTP’). He required regular at least 4 hourly sessions of haemodialysis for a minimum of three times per week. The clinical consensus was that JM would die within 8-10 days if he did not receive treatment.

JM did not accept a diagnosis of chronic kidney disease or his need for dialysis. His mother – who had been diagnosed with schizophrenia – did not accept this either. Hayden J noted in this regard (at paragraph 4) that, “though they share the same view, which is irrational, Dr C [the independent psychologist] is persuaded that they each independently hold the same view and JM’s belief structure has not been superimposed upon him.”

In the context of proceedings relating to the future placement of JM, the matter was restored urgently to court, JM having been found in bed at home covered in blood from his dialysis line, there being “very little doubt” that it was JM himself who had cut the line.  The line was removed, and JM refused have a replacement line inserted.

Capacity not being in issue, the question was what steps it was in JM’s best interests to take.  Hayden J’s analysis was sufficiently crisp but nuanced that it requires (to use one of the judge’s catchphrases) to be set out in full:

43. The situation for JM has progressively deteriorated. I remind myself that in early 2023 when JM was clinically stable in hospital, the proceedings were concerned with finding a placement from which he could be encouraged to attend for dialysis three times per week. The situation is plainly now far graver. 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. It follows, inevitably, that the restraint required for the reinsertion would be a harbinger for repeated and extensive restraint on a weekly basis and indefinitely. JM’s erratic compliance and distorted thinking, now over many months, effectively discounts him, I have been told, from eligibility for a donor organ. Such transplant would need compliance with a fairly rigorous regime of support which is very unlikely to be complied with. Moreover, that too may involve an extensive period of haemodialysis.

44. JM’s belief system in respect of dialysis is so plainly distorted as to manifestly rebut the presumption of capacity, erected by the MCA 2005. However, even though his reasoning is unsound, JM’s confidence and belief in his own judgment is well-established and as the chronology of the case has demonstrated, 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. JM’s views on dialysis arise from the complex interplay of his psychological functioning and his life experiences. This is no doubt true for all of us but in JM’s case, both are disordered. The nature and extent of JM’s autism coupled with the extent of trauma that he has endured, serves to disable him from processing his thoughts and experience in an effective way. Nonetheless, JM’s own reality, even though it greatly differs from ours, requires to be respected. It is in this way that the autonomy of the incapacitous is respected. That does not mean that their views prevail but it does mean that they must be afforded weight. As I have set out above [in North 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”.

45. For the reasons which I have set out, 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. By agreement and because Roberts J had previously met with JM on a number of occasions, I spoke with him on a private video link from which the public and lawyers were excluded. The solicitor for the Official Solicitor took a note. With outstanding efficiency, the note was available to the parties within 20 minutes of my concluding the meeting. Judges, I suspect, vary greatly in their approach to meeting with P. Video conferencing platforms have changed the landscape. It seemed to me, ultimately unthinkable, that I should not meet with JM and tell him the important decision I had made. I found him, as has everybody else involved in his care, to be a very pleasant young man. His conversation with me reinforced Dr C’s assessment of him. As both Dr F and Dr C have said, JM does not want to die. 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 also expressly paid tribute to the doctors and nursing staff, as well as JM’s mother and sister, noting in respect of JM’s mother that, though 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” (paragraph 46).

Comment

I anticipate that paragraph 44 may well be quoted to and by other judges in the same way as the earlier, pithy observation of Peter Jackson J (as he then was) in the Wye Valley case that in some cases “the wishes and feelings, beliefs and values of a person with a mental illness can be of such long standing that they are an inextricable part of the person that he is. In this situation, I do not find it helpful to see the person as if he were a person in good health who has been afflicted by illness. It is more real and more respectful to recognise him for who he is: a person with his own intrinsic beliefs and values. It is no more meaningful to think of Mr B [the subject of that case] without his illnesses and idiosyncratic beliefs than it is to speak of an unmusical Mozart.”

More broadly, the concept of ‘best interests’ is often challenged, especially by those associated with the Committee on the Rights of Persons with Disabilities, as being code for medical paternalism, as well as a licence (if not, indeed, even a mandate) to discriminate against those with cognitive impairments.  It is against this backdrop that calls are made to base all decisions upon the autonomy, will and preferences[1] of those with disabilities.  There is no doubt that it is all too easy to point to decisions made up and down the country on a best interests basis that merit the strong criticism leveled against the concept.  However, in line with the clear trend in the case-law of the Court of Protection, this decision shows that the concept is capable of being interpreted in a very different way.  If the decision is constructed outwards from the person, on the basis of their reality, it is difficult to see how the end result does not comply with the requirement of Article 12 CRPD that it respects their rights, will and preferences.

Alex Ruck Keene KC (Hon) is a barrister at 39 Essex Chambers. This article first appeared on his Mental Capacity Law and Policy blog.

[1] The language used in General Comment 1 on the right to equal recognition before the law contained in Article 12 CRPD.  Pedantically, Article 12(4) talks of the need for measures relating to the exercise of legal capacity to respect the rights, will and preferences of the person.  It is not obvious that ‘autonomy’ is synonymous with all the rights that are guaranteed by the CRPD.  For more about the CRPD, I strongly recommend the work of Lucy Series.