Testing mental capacity: Is belief a mandatory component?

An update from a regular series written by Mr Robert Wheeler, director, department of clinical law, where he considers various aspects of clinical law that our nursing and medical staff rely on when caring for patients.

In 2023 a 19-year-old, S, who was dying of a rare mitochondrial disorder (Mitochondrial Depletion syndrome RRM2B) was adamant that despite her multi-organ failure, she wished to have the opportunity to undergo experimental nucleoside treatment in North America. She pleaded to ‘die trying to live’.

In 2022, S and her family had met a world-leading expert on RRM2B, who had explained that ‘...all possible treatments had been given and that (S) was entering the last part of her life’. Nevertheless, S and her parents considered that Long Covid might have a part to play in her pathology; they were anxious to explore the possibility of administering nucleoside molecules ’…in an attempt to increase the production of healthy mitochondrial DNA.’

On this basis, she rejected the offer of palliative care from the hospital looking after her. The hospital took the view that S was delusional, insofar as she was unable to believe the information that she had been given: That the nucleoside treatment would neither help her; nor would it be available to her. On the basis that she could not believe what the hospital regarded as these self-evident truths, it argued that S lacked capacity to make the decision to accept or decline palliative care.

Expert evidence provided to the Court revealed that patients with a similar, but not identical condition (TK2 deficiency) appeared to benefit from nucleosides if given early in the disease but from a worldwide perspective, research teams ‘…remained “some distance” from being able to provide treatment for RRM2B’.

A High Court judge declared that the absence of S’ belief in her prognosis was by itself indicative of incapacity; S died 35 days later.

Prior to the advent of the Mental Capacity Act 2005, the early judgments regarded ‘belief’ as relevant. In the case of man who in 1994 successfully resisted the amputation of his gangrenous foot, the court considered helpful an analysis of the decision-making process in three stages: ‘First, comprehending and retaining treatment information, secondly, believing it and, thirdly, weighing it in the balance to arrive at a choice’. (In re C (Adult: Refusal of Treatment) [1994] 1 WLR 290).

Judgments since the implementation of the Act have havered around the role of belief in determining capacity, and S’ bereaved parents’ 2024 appeal of the decision made against their daughter has provided welcome clarity.

The Court of Appeal considered the statutory ‘functional’ assessment of capacity; (i) does the patient understand the information relevant to the decision in question?; (ii) can they retain that information?; (iii) use or weigh it as part of the decision-making process?; (iv) can they communicate the decision? If the person cannot perform these steps, then they may be unable to make the decision.

The hospital’s case was that ‘…S’ inability to believe that she was going to die soon, and that nucleoside treatment was not going to help led inexorably to the conclusion…’ that she was incapable of understanding the information she was being given. The original court recorded the effect of this submission; ‘…. if a person does not believe relevant information that is objectively true, then the person will proceed on the basis of incorrect information…and will be unable to make a decision…’

But the Court of Appeal found that there is no specific requirement of belief when assessing capacity: Whether viewed as a necessary element in the process of understanding, using or weighing information; or required more generally in making decisions. However, the absence of belief ‘...may, but not inevitably will…’ on the facts of a particular case lead a clinician or a court to conclude that the functional test is indicative of incapacity. For this reason, the appeal was allowed, and the original declaration that S suffered from incapacity was set aside by Lady Justice King; ‘It follows that in my judgement, this remarkable young woman had capacity to make decisions in relation to her medical treatment and therefore had her wish; to “die trying to live”.’

Sudiksha Thirumalesh (Deceased) & Ors v University Hospitals Birmingham NHSFT [2024] EWCA Civ 896

Mr Robert Wheeler
Department of clinical law