SOMETIMES the part that the State needs to play in our lives is obvious. As racist mobs descended on towns and cities across England this month, the Government had a clear duty: to deploy the police to keep citizens safe, and to arrest and charge those who had rioted and incited racial hatred. But governments are not always presented with such straightforward calls to action. The State’s obligations can be conflicted and complex, when the demands of the common good are emotionally and ethically fraught.
Such a case was argued before the Court of Appeal this year, concerning the treatment of Sudiksha Thirumalesh. She was a 19-year-old woman suffering from a rare mitochondrial-depletion syndrome that was almost certain to kill her. Her doctors had come to the conclusion that there was no plausible treatment to extend her life meaningfully or cure her, and wanted to treat her palliatively. While acknowledging that she was probably on the precipice of death, she refused their advice, and asked to travel to Canada to pursue experimental treatment.
But the response of her doctors was to dispute her competence. The University Hospitals Birmingham NHS Foundation Trust applied to the Court of Protection for permission to proceed with palliative care, on the basis that Sudiksha was no longer competent to decide how she wished to be treated.
The evidence before the Court of Protection belied this. Doctors and psychiatrists treating her told Mrs Justice Roberts, who heard the case, that Sudiksha understood the parlous nature of her condition, and the improbability of recovering either in the UK or in Canada. Yet, because she still wished to travel abroad, instead of pursuing their preferred course of treatment — that is to say, no treatment at all — they saw her as “delusional” and incompetent.
As I wrote in these pages last year (Comment, 29 September 2023), this placed Sudiksha in a catch-22: “Accepting the prognosis and having faith in her survival were mutually exclusive.” Mrs Justice Roberts did not see it this way, granting the Trust’s application and declaring that she “lacked capacity”. Thirty-five days later, Sudiksha died. Despite this, her parents filed an appeal against the Court’s declaration of incapacity.
ORDINARILY, this would have been refused. Once Sudiksha had died, the case was moot, and there was no issue to correct. The Court of Appeal granted permission, however. There was a need to review the decision of the lower court and to clarify the law, which the three justices concluded was “wrong and contrary to Court of Appeal authority”.
The Court of Protection erred from the outset, according to the three justices. Any case on competence should begin, Lady Justice King wrote, with the principle that “over his or her own body and mind, the individual is sovereign.” As the primary legislation emphasises, “a person is not to be treated as unable to make a decision merely because he makes an unwise decision.” Instead, “the space between an unwise decision and one which an individual does not have capacity to take . . . is where an individual’s autonomy operates.”
This was not the course taken by the court at first instance. Rather than consider whether Sudiksha was impaired from reaching a capacitous decision, the Court of Protection put the cart before the horse. Mrs Justice Roberts concluded that Sudiksha’s decision was impaired, and that, therefore, she must also be.
What this conclusion hinged on was that “belief was an essential ingredient” for capacity, and that the only way in which Sudiksha could show that she believed her doctors was by accepting their prescription. Her refusal to do so, as Lady Justice King wrote, meant that the Trust was “driven to attempt to shoehorn into the term ‘delusional’ what in reality they regarded as a profoundly unwise decision”. Unable to comprehend that she might accept the prognosis but hope for a different end, her doctors had only one solution, to label her mad.
The Court of Protection was wrong to accept this train of thought. Rather than concentrate on whether the patient’s decision was the right one, the lower court should have questioned whether “a lack of belief in a diagnosis . . . may amount to a lack of understanding” of it, and whether there was a “rational basis for the lack of belief”. From here, it might be, for some patients, that “they are unable to understand . . . and weigh the information in question.” This, however, should not be a presumption that any court began with, but a conclusion reached after all the evidence.
IN SUDIKSHA’s case, there was nothing to suggest that she was unable to understand and weigh the information. While a preliminary assessment might have indicated to the judge that there was a “disturbance in the functioning of her mind”, and that she had been “impacted by the trauma” of her admission to hospital and to intensive care, the judge failed to engage with the assessments that found her to be an “animated individual, able to engage and participate”.
The consequence was that the judge placed disproportionate emphasis on belief, concatenating it with understanding. Once this “absolute requirement” was displaced, then, “it will take a great deal to displace the principle of autonomy and the presumption of capacity, no matter how unwise a decision.”
This judgment is a welcome reminder to the Court of Protection of what the State’s function should be. The judgment places the individual at the heart of the decision-making process and emphasises that it is the State’s position to fulfil an individual’s wishes rather than obstruct them. The State must protect those for whom it has a responsibility, not cast them aside.
When Parliament returns next month, it will face an inversion of this moral quandary, as the Government promises to give time to a new Bill seeking to legalise assisted dying. MPs will have to decide whether giving someone who is terminally ill the right to kill themselves — and to be assisted in the process by their doctor — is a wish that the Government should fulfil: not whether the Government should help a citizen to live, but whether it should help a citizen to die.
Nicholas Reed Langen is a writer on legal and constitutional affairs, a former Re:Constitution Fellow (2021-22), and editor of the LSE Public Policy Review.