Alex RKAs explored in this paper and this “in conversation with,” the potential for discrimination in the treatment of conditions requiring dialysis and/or organ donation is large where the person has impaired decision-making capacity. Norfolk and Norwich University Hospitals NHS Foundation Trust & Ors v Tooke & Ors [2023] EWCOP 45 shows the steps which are required to ensure that such discrimination does not take place, in the case of a young autistic man with severe learning disabilities and William’s syndrome, suffering from end-stage renal failure.
We know the name of the young man at the heart of the case – Jordan Tooke – as Hayden J expressly permitted its publication at the behest of his parents, not least in hopes that it might lead to the identification of a suitable kidney donor, and, more immediately, specialist clothing for him which might help in the dialysis process.
As Hayden J identified at paragraph 3 of his judgment, Jordan had a long-standing phobia of hospitals in general and needles in particular, such that, when the case was last before him in April 2023, “it was thought by all concerned, not least Jordan’s parents, that he would not be able to tolerate the considerable restrictions and privations involved in haemodialysis treatment.” At that stage, the question was whether it might be possible for him to receive a kidney transplant, with a consultant nephrologist identifying that “he capacity to participate, co-operatively, in haemodialysis was a prerequisite of eligibility to be placed on the transplant list.” He was placed on the transplant list but despite his achievements on the desensitisation programme, a conclusion was reached that he would not be able to undertake haemodialysis without sedation.
This meant that, before Hayden J in October 2023:
16. […] as Mr Patel KC, on behalf of Jordan, through the Official Solicitor, rightly says, “stripped to its basics this case is truly about life-sustaining treatment” i.e., whether it would be lawful, right and in Jordan’s best interests to receive haemodialysis even where that can only be achieved by the unusual measure of intravenous sedation throughout the process. I agree with that characterisation, it follows that we are really considering matters of life and death.
As Hayden J identified (at paragraph 31) in relation to the plan for the actions required to ensure that Jordan could receive haemodialysis in that fashion:
There is no doubt that the proposals contemplated by the plan are beyond what has previously been undertaken with other patients. The plans may properly be characterised as pioneering. At every dialysis session, there would need to be an anaesthetist, an operating department practitioner, and airway equipment, including anaesthetic machine/ventilator. This would require haemodialysis to be on the main site and, inevitably, involve allocating important resources which are much in demand.
As identified by the consultant anaesthetist, Dr M, the plan carried “significant and troubling risks. Some of those risks involve potentially very serious consequences” (paragraph 33), but, as Hayden J identified “the calibration of risk really requires confrontation with the alternatives. Jordan’s parents have been both intellectually and emotionally rigorous in the way that they have addressed this issue. They have identified Jordan’s quality of life, as I have set out. They have reflected on Jordan’s temperament and personality and concluded that he would choose to live. I agree with that conclusion,” such that:
In many cases where the Courts are asked to consider issues of this magnitude, the contemplated treatment, usually advanced by the family, is often burdensome but ultimately futile. Here, though dialysis is undoubtedly burdensome, it is certainly not futile. On the contrary, it holds out the possibility, by transplantation, of a restoration to health. The real issue is whether the process of dialysis with all its attendant risks is so contrary to Jordan’s best interests that it should not be pursued. Having regard to Dr M’s clear view that Jordan’s sedation can be managed, I have come to the view that the opportunity of dialysis ought to be afforded to Jordan and that such opportunity can properly be said to be in his best interests.
Comment
In Equality Act terms, this case shows what it means to make reasonable adjustments in order to respond to the needs of a person with both cognitive and physical impairments. In MCA terms, it shows the proper location of decision-making capacity (i.e. relevant only insofar as it was going to make compliance with the requirements of haemodialysis more difficult), and analysis of best interests (i.e. probing the availability of relevant options, and proceeding carefully in light of those options to respect the person’s known will and preferences). In human terms, the case shows the difference that having an advocate makes – in Jordan’s case, he had his parents, but what about all of those cases where there is no such advocate?
