Court of Protection judge declines to order dialysis for autistic man

A Court of Protection judge has declined to order dialysis for an autistic man lacking capacity, concluding that forced restraint either in the face of his expressed opposition or at a time when he is no longer able to resist, would “compromise his dignity”.

The proceedings in Nottingham University Hospitals NHS Trust v JM & Anor [2023] EWCOP 38 concerned JM, a 26-year-old man.

Mr Justice Hayden said: “The combination of trauma, which JM has been unable to address, and autism, confounds his efforts to process his experiences in life and thwarts reasoned decision-taking. In relation to the issues before this Court, there is a consensus that JM lacks capacity.”

JM was diagnosed with chronic kidney disease in January 2021 and has acquired Thrombotic Thrombocytopenic Purpura. He requires regular at least 4 hourly sessions of haemodialysis for a minimum of three times per week. “It requires to be stated that the clinical consensus is that JM will die within 8-10 days, if he does not receive treatment”, said the judge.

JM does not accept a diagnosis of chronic kidney disease or his need for dialysis. His mother does not accept this either.

Mr Justice Hayden noted, “though they share the same view, which is irrational, Dr C [JM’s Renal Consultant Clinical Psychologist] is persuaded that they each independently hold the same view and JM's belief structure has not been superimposed upon him”.

JM was compliant with treatment when in a hospital setting but frequently refused to attend appointments as an outpatient when living at his mother's home.

Repeated attempts to explain the need for dialysis and the potentially fatal consequence of not having it, have been unsuccessful, even with significant specialist psychologist support, the judge noted.

On 6th October 2022, Nottingham University Hospitals NHS Trust commenced proceedings.

In December 2022, the parties agreed and the court endorsed the proposal that it would be in JM's best interests to attempt a trial move to residential care / supported living as an alternative to him residing with his mother.

An interim nursing placement, ‘A Nursing Home’, was identified. The option of a supported living placement was also identified.

Following a series of capacity assessments, including by independent expert, Dr Carnaby, on 19th June 2023, the court made declarations pursuant to s.15 of the Mental Capacity Act 2005 namely that JM "lacks capacity to: (i) conduct these proceedings; (ii) make decisions about the medical treatment he receives for chronic kidney failure; and (iii) to make decisions about whether to be accommodated in hospital or in a care home for the purpose of receiving treatment".

Mr Justice Hayden said: “Following the commencement of proceedings, there have been a number of agreed administrative orders. In recent months there have been remote hearings before Mrs Justice Roberts on 19th, 29th June and 17th July 2023. Mrs Justice Roberts also conducted three "remote judicial visits" with JM on 20th, 27th and 28th June 2023.”

At the hearing on 19th June 2023, the parties agreed and the court endorsed, that it would be in JM's best interests to move, in the interim, to A Nursing Home as a "step down" option until a supported living placement became available.

On 20th June 2023, JM met with Mrs Justice Roberts (remotely), during which meeting the Judge set out to him the court's decision regarding his best interests, both in respect of the need for continued dialysis and the move to A nursing home. However, in the early hours of 21st June 2023, JM left the ward without permission.

At an urgent hearing on 29th June 2023, the parties agreed, and again, the court approved that, “in light of JM's consistent opposition and increasing disengagement”, it would be contrary to his best interests to move to A nursing home, said the judge.

Following JM's refusal to comply with an interim move to A Nursing Home (or remain in hospital), the parties agreed and the court approved an "Escalation and Behaviour Support Plan" which declared that it was lawful not to compel treatment by chemical or physical restraint and to treat JM on a "responsive" basis only (i.e. by means of discussion, negotiation and persuasion without recourse to restraint). The declaration was made on 17th July 2023.

On 11th August 2023 an ambulance was called to JM's house. He was found in bed covered in blood from his dialysis line which had been significantly damaged after being cut close to the junction point. “There is very little doubt that it was JM who cut the line”, said the judge.

He added: “In consequence, the dialysis line had to be removed and subsequently JM has adamantly refused to have a replacement line inserted.”

The Trust subsequently restored the matter to court on an “urgent basis”.

The Trust convened a 'best interests' meeting on 11th August 2023. At the meeting, five treatment options were considered:

a. Chemical restraint (i.e., general anaesthetic) to enable the reinsertion of the dialysis line and thereby enable reinstatement of regular dialysis. Allow JM to go home.

b. Chemical restraint (i.e. general anaesthetic) to enable reinsertion of dialysis line, and re-instatement of regular dialysis. Detain in hospital (by physical or chemical means if need be) until an alternative secure environment can be found. Would still require transport to/from dialysis on an ongoing basis.

c. No immediate plan for further dialysis and palliate. Offer dialysis if he is visibly deteriorating. If, at any point, he agrees to dialysis we would undertake line insertion (and other active treatments required alongside that). Still attempt to treat him in his best interests if he ceased to object or become unconscious.

d. No immediate plan for further dialysis and palliate and continued offer / encouragement to accept dialysis. Gently – and in an appropriate manner – offer dialysis if he is visibly deteriorating. If, at any point, he agrees to dialysis we would undertake line insertion (and other active treatments required alongside that). No attempt to insert a line or otherwise treat, if he ceases to object or if he becomes unconscious. A DNACPR [do not attempt cardiopulmonary resuscitation] would be in place unless he agreed to dialysis and line insertion, in which case it would be revoked.

e. No immediate plan for further dialysis. Palliative care pathway. No attempt to discuss further dialysis or active treatment with him. At any point, if he requests dialysis we would undertake line insertion (and other active treatments required alongside that).

The best interests meeting concluded that it would be in JM's best interests to provide palliative care and cease to plan for further dialysis (discounting the insertion of a temporary or permanent dialysis line) unless this is “positively agreed by him”.

Mr Justice Hayden clarified: “under this option the Trust would continue 'gently' to offer dialysis to JM and, if at any point he expressly agrees, a dialysis line would be inserted. This would include other active treatment. No attempt to insert a line, or otherwise, proactively treat him, would be made if JM's health deteriorated to the point where he was unable to object or, indeed, if he becomes unconscious.”

Counsel on behalf of the Applicant Trust stated "The stark and tragic consequence of this option is that, barring express acceptance by [J], he will inevitably die within a few days to a week".

Mr Justice Hayden said: “JM does not accept this. The doctors and nursing staff have made sensitive, creative and, if I may say so, very patient focused efforts to persuade JM to accept dialysis but they have not prevailed.”

He noted that the Trust's analysis of JM's best interests is shared by Nottingham City Council and the Official Solicitor. Adding: “The independent expert, Dr Carnaby, has also previously agreed that it would not be in JM's best interests for any form of restraint to be used to compel his attendance at hospital or secure dialysis.

“JM's mother and sister who have attended this remote hearing, are both very clear that coercive measures should not be used to compel JM's treatment but that he should continue to be encouraged to accept a dialysis line and treatment.”

In his consideration of the present case on 14 August 2023, Mr Justice Hayden said: “I heard from Dr F [Renal Consultant], Dr C and from JM's mother. It was clear that each of them had given JM's circumstances an enormous degree of careful thought. Dr C was able to give me a powerful insight into JM's complex functioning.

“Dr F, who had been prepared to contemplate some degree of restraint to save his patient, had arrived at the clear and carefully articulated conclusion that such would be "a short-term measure for a long-term problem". Dialysis lasts for at least 4 hours at each session. To apply restraint would, both Dr C and Dr F told me, cause JM very considerable distress.”

He added: “It would also compromise JM's easy, comfortable and trusting relationship with the hospital staff. It requires to be said it would cause the treating clinicians and nurses very considerable distress too. In view of JM's early life experiences, it might even retraumatise him. In my judgement, it would compromise JM's dignity.”

Outlining relevant caselaw, Mr Justice Hayden noted that there is “no obligation on a patient with decision-making capacity to accept life-saving treatment, and doctors are neither entitled nor obliged to give it”.

He said: “As set out by Lord Brandon in Re F (Mental Patient: Sterilisation) [1990]:

"a doctor cannot lawfully operate on adult patients of sound mind, or give them any other treatment involving the application of physical force ... without their consent', and if he were to do so, he would commit the tort of trespass to the person"

Turning to the issue of best interests as set out in the Mental Capacity Act 2005, he noted:

“Where a person is unable to decide for himself, there is an obligation to act in their best interests: s.1(5).

“Where a decision relates to life-sustaining treatment, the person making the decision must not be motivated by a desire to bring about death: s.4(5).

“When determining what is in a person's best interests, consideration must be given to all relevant circumstances, to the person's past and present wishes and feelings, to the beliefs and values that would be likely to influence their decision if they had capacity, and to the other factors that they would be likely to consider if they were able to do so: s.4(6).”

In his discussion of the case, the judge noted that the situation for JM has “progressively deteriorated”.

He said: “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.”

He added that JM's “erratic compliance and distorted thinking”, over many months, effectively discounts him from eligibility for a donor organ, which would require compliance with a regime of support which is “very unlikely to be complied with”, and also may involve an extensive period of haemodialysis.

Mr Justice Hayden said: “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.”

He added: “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, "human dignity is predicated on a universal understanding that human beings possess a unique value which is intrinsic to the human condition".

Mr Justice Hayden concluded 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”.

He closed the judgment by noting that he spoke with JM on a private video link from which the public and lawyers were excluded. He said: “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.”

Paying tribute to the doctors and nursing staff and to JM's mother and sister, Mr Justice Hayden said: “Though JM's mother 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 into this decision.”

Lottie Winson