In Re T (Adult: Refusal of Treatment) [1992] Lord Donaldson MR held that the right to decide one's fate presupposed an ability or capacity to do so. This led his Lordship to argue that mental capacity was the key to a person's autonomy, as nurses are bound by the decisions of a capable adult but can override autonomy and make decisions or act in the best interests of a person where capacity has been rebutted.
In Re C (Adult: Refusal of treatment) [1994] the High Court was required to determine if a person living with paranoid schizophrenia lacked capacity to refuse an amputation of his gangrene-infected leg. In the case Justice Thorpe (at 292) considered how a person with capacity makes a decision and held that there were three stages in the process:
- To take in and retain the treatment information
- To believe it
- To weigh that information, balancing risks and needs.
Expert evidence in the case particularly focused on whether Mr C did not believe that his death was imminent and whether this was due to his mental disorder, which included a false belief that he was medically qualified.
On the evidence Justice Thorpe found that Mr C had expressed his complete faith and confidence in his survival aided by God, his doctors, and his nurses. However, Mr C also accepted that he might die as a result of retaining his infected limb.
Applying the test to the evidence, Justice Thorpe was completely satisfied that the presumption that Mr C had the right of self-determination had not been displaced.
‘Although Mr C's general capacity was impaired by schizophrenia, it had not been established that he does not sufficiently understand the nature, purpose and effects of the treatment he refuses. Indeed, I am satisfied that he has understood and retained the relevant treatment information, that in his own way he believes it, and that in the same fashion he has arrived at a clear choice.’
Despite his impaired thinking due to thought disorder, Justice Thorpe held that Mr C had capacity to refuse amputation and diluted the requirement to believe the provided treatment information by accepting that Mr C had believed the information in his own way.
Mental Capacity Act 2005
The UK Supreme Court in A Local Authority v JB [2021] held that the approach to a mental capacity assessment is now set out in sections 1, 2 and 3 of the Mental Capacity Act 2005. The core provision is section 2(1) of the 2005 Act, which provides that:
‘For the purposes of this Act, a person lacks capacity in relation to a matter if at the material time he is unable to make a decision for himself in relation to the matter because of an impairment of, or a disturbance in the functioning of, the mind or brain.’
The Supreme Court requires that when assessing capacity nurses must:
- Consider whether the person is unable to make a decision in relation to the matter; and
- If so is it because of an impairment or disturbance to the mind or brain.
Inability to make a decision
Section 3(1) of the Mental Capacity Act 2005 is used to establish if a person is unable to make a particular decision. It provides that:
‘For the purposes of section 2, a person is unable to make a decision for himself if he is unable –
- to understand the information relevant to the decision,
- to retain that information,
- to use or weigh that information as part of the process of making the decision, or
- to communicate his decision (whether by talking, using sign language or any other means).’
Although the requirements of section 3(1) are recognisably similar to the stages set out by Justice Thorpe in Re C (Adult: Refusal of treatment) [1994], the requirement to believe the treatment information is not a specific requirement under the 2005 Act.
Believing treatment information as an element of decision making
The issue of whether a person had to believe the treatment information given to them by nurses and doctors was considered in University Hospitals Birmingham NHS Foundation Trust v ST [2023].
In this case, the Court of Protection was asked to rule on the capacity of a 19-year-old woman, with a rare genetic condition, to make decision about her future treatment.
The woman had spent the past year as a patient in an intensive care unit. She had a rare mitochondrial disorder, which was a progressively degenerative disease for which there was no cure that might enable her to resume her life outside the clinical setting of the intensive care unit. She was mechanically ventilated through a tracheostomy, fed through a percutaneous endoscopic gastrostomy tube, and was undergoing regular haemodialysis. Her disease had resulted in numerous related health problems including impaired sight and hearing loss, chronic muscle weakness, bone disease and chronic damage to her kidneys and lungs. The collective view of her treating hospital clinicians was that she was in or fast approaching the final stage of her life.
The trust's intention was to move to a treatment plan of palliative care, which would involve a less invasive management regimen.
The woman did not believe that her life was in its final stages and she was convinced that she would survive long enough to raise the money to go to the USA for experimental treatment that would cure her of this disease.
The Court of Protection held that the woman was unable to make a decision for herself in relation to her future medical treatment, including the proposed move to palliative care, because she did not believe the information she had been given by her doctors and nurses. Although belief was not a discrete stage of the requirements set out in section 3 of the 2005 Act, it was subsumed into the requirement to understand information relevant to the decision.
The Court of Protection accepted the view of Justice Munby (at para 81) in Local Authority X v MM [2007] that:
‘If one does not ‘believe’ a particular piece of information then one does not, in truth, ‘comprehend’ or ‘understand’ it, nor can it be said that one is able to ‘use’ or ‘weigh’ it. In other words, the specific requirement of belief is subsumed in the more general requirements of understanding and of ability to use and weigh information.’
Without that belief, the woman could not use or weigh that information as part of the process of making the decision.
Not believing information provided by nurses and doctors is very different, argues Justice Roberts in ST, to making an unwise but otherwise capable decision. An unwise decision involved the juxtaposition of both an objective overview of the wisdom of a decision to act one way or another and the subjective reasons informing that person's decision to elect to take a particular course. However unwise, the decision must nevertheless involve that essential understanding of the information and the use, weighing and balancing of the information in order to reach a decision. In this case, however, an essential element of the process of decision-making was missing, because the woman was unable to use or weigh information, as she did not believe the information, which had been shown to be both reliable and true.
Impairment or disturbance to the mind or brain
The second step of the approach to capacity assessment set out by the Supreme Court in A Local Authority v JB [2021] is to establish a causative nexus between the inability to make a decision and an impairment or disturbance to the mind or brain. That is, the person cannot make the decision at this time because of an impairment or disturbance to the mind or brain.
In University Hospitals Birmingham NHS Foundation Trust v ST [2023] two psychiatrists agreed that the woman was unable to make the decision because she did not believe the treatment information she had been given, but did not accept she lacked capacity because they could not identify a mental disorder that would establish an impairment of the mind or brain.
Justice Roberts in ST took a different view to the identification of an impairment or disturbance to the mind or brain. Justice Roberts held that the words ‘impairment or disturbance to the mind or brain’ used in section 2(1) of the 2005 were not elaborated on any further by the Mental Capacity Act 2005. Instead she applied the ruling in North Bristol NHS Trust v R [2023] that held that the wording of section 2(1) does not need to be tied to a formal diagnosis. It would be undesirable to do so as it would constrain the application of the 2005 Act to an undesirable degree.
In University Hospitals Birmingham NHS Foundation Trust v ST [2023] the woman's inability to accept the reality of her position, or to contemplate the possibility that her nurses and doctors might be giving her accurate information, was likely to be the result of an impairment of, or a disturbance in the functioning of, her mind or brain. She had been adversely impacted by the trauma of her initial admission to hospital, and that trauma was likely to have been exacerbated by the length of her stay. She had endured almost a year of intensive medical and surgical intervention, which had been both painful and distressing for her. She was frightened by the prospect of dying and clung to her desire to survive what her doctors had repeatedly told her was an unsurvivable condition. The cumulative effect of her circumstances over such a prolonged period, her profound inability to contemplate the reality of her prognosis, and a fundamentally illogical or irrational refusal to contemplate an alternative, were all likely to have contributed to impaired functioning.
Conclusion
The ruling in University Hospitals Birmingham NHS Foundation Trust v ST [2023] reminds nurses that believing the treatment information relevant to the decision remains a vital component of mental capacity even though it is not a discrete stage in the assessment process.
The case also reinforces the not commonly held view of the Court of Protection that establishing the causative nexus, by showing the person cannot make the decision because of an impairment or disturbance to their mind or brain, does not and should not require a formal diagnosis, only evidence of impaired functioning and how it is said to prevent the person making the decision at that time.
KEY POINTS
- Believing treatment information remains a vital component of mental capacity even though it is no longer a discrete stage in the assessment process
- If a person does not believe the treatment information then they cannot truly understand it or properly use it as part of the decision making process
- Evidencing an impairment or disturbance of the mind or brain to establish the causative nexus does not require a formal diagnosis