Judge: Hayden J
Citation:  EWCOP 37
In this case, the Trust sought a declaration from Hayden J that it was lawful and in AI’s best interests to discontinue any further attempts to provide dialysis.
AI had a history of schizophrenia and was diagnosed on 30 September 2019 with end stage kidney disease. He had required long term haemodialysis to remain well but had only intermittently accepted treatment. He had a fixed delusional belief, as a consequence of his schizophrenia, that there was nothing wrong with his kidneys and he did not need dialysis. He also considered that the hospital was stealing his blood and he was accruing a large bill that he was unable to pay. This was causing him significant agitation.
It was not in dispute that AI lacked capacity to decide whether or not to have dialysis.
In July 2020, AI had required hospital admission, which included spending some time on ICU before being transferred to the Renal ward at Queen Elizabeth Hospital. He received haemodialysis twice a week, verbally refusing each time but when the nurse arrived at his bedside, he would passively let them connect him to the machine using his dialysis line. No sedation or restraint was required.
The stage was reached that AI was physically well enough to be discharged but continued to state that he would not attend his outpatient dialysis appointments. The clinical view was that it was in his best interests to be discharged back to his care home and should not be compelled to attend and receive dialysis. Instead, the Trust would act “reactively”, which meant that a vehicle would be sent to AI’s home on the day that dialysis was required and it was left to him as to whether he would comply or not. His family took the view that AI should be compelled to attend and receive dialysis. Hayden J agreed with the clinicians that chemical and/or physical restraint was not in AI’s welfare interests.
An application was made to the Court of Protection. Theis J made the first order sought on 23 November 2020, including that AI lacked capacity to make decisions about his treatment in relation to dialysis for End Stage Kidney Disease. She declared that it was lawful and in AI’s best interests to be discharged from Queen Elizabeth Hospital, to receive reactive treatment for dialysis for End Stage Kidney Disease, and not to be compelled to receive dialysis by any form of restraint.
After his discharge on 11 December 2020, he voluntarily attended a number of sessions of dialysis, but then he did not attend again from 12 January 2021. His health seriously deteriorated and he required further hospital admission. He cooperated with dialysis in hospital but was again then discharged. This pattern continued. His non-compliance Haled to fluid volume overload, which resulted in severe breathlessness. His physical deterioration had also significantly worsened.
AI was admitted to Accident and Emergency on 18 May 2021 with breathlessness. He accepted oxygen. He initially declined dialysis, following which he agreed to it for a short period of time before pulling his tunneled line out. Eventually, he was persuaded to accept the insertion of another temporary line.
Dr Hewins, the consultant neurologist, was extremely concerned by his presentation. There was prolonged bleeding from the groin where the dialysis was inserted. He was at risk of heart failure and significant risk of death over the next 24-48 hours. Even if his blood pressure were to stabilise, the clinicians could attempt to insert another tunnel but the likelihood of being able to achieve that was significantly uncertain. It would be a potentially painful and distressing procedure. Dr Hewins’ opinion was that the clinicians were in danger of pursuing inappropriate offers to re-establish dialysis without any realistic likelihood of durable benefit when the focus should be on palliative care.
Hayden J observed that AI had been consistently resistant to cooperating with dialysis. He had only passively cooperated when he was physically weak and struggling to breathe. He then disengaged when he felt better. He noted that AI’s superficial cooperation with dialysis had gradually reduced and that on his most recent admission, he had withdrawn the tunnel line, which would have been painful. Hayden J drew the inference that AI has become tired by the effort of dialysis. He had also become neglectful and disinterested in his appearance, which was contrary to his personality.
The neurologists considered that if AI was administered further dialysis he would last for a maximum of 2 to 3 weeks; and that the process of dialysis might precipitate collapse and death.
Hayden J also heard evidence from AI’s family to ensure that the court was considering his welfare in the widest sense. They described his upbringing in Pakistan and that he was sociable, as well as his enjoyment of spiritual Pakistani song and food. He had recently become a grandfather and was delighted by that. He also attended all family events.
As to prognosis, Hayden accepted that AI was at the end of life; and therefore, the question was determining how, over what period and in what circumstances, he died. He endorsed the palliative care plan because he considered that it conveyed dignity on AI at the end of life and granted the declarations sought.
This case has interesting resonances with that of RD also covered in this issue. In both, it would be possible to construct coherent legal arguments that coercion could occur, but the real issue was whether it should.
It is worth remembering, in the context of the best interest assessment, that section 4(6) MCA 2005 requires the decision-maker to consider the person’s past wishes and feelings “so far as is reasonably ascertainable”. In this case, that exercise involved Hayden J forensically analysing AI’s behaviours in response to this dialysis in order to understand his wishes and feelings. Hayden J observed that “behaviour, when assessed carefully, may sometimes communicate feelings more effectively and accurately than words.” Ultimately, as Hayden J acknowledged, the court is charged with the protection of AI’s autonomy, and his wishes and feelings are integral to that. He cited in this regard his own judgment in SS v London Borough of Richmond Upon Thames & Anor  EWCOP 31, covered further also in this issue.