Beliefs, capacity, and best interests

The case of ST, aged 19 years, explored whether a belief could be so strong that it rendered them unable “to use or weigh that information as part of the process of making the decision.” and whether the belief provided evidence of “an impairment of or a disturbance in the functioning of the brain or mind”.

The clinical background was summarised in the first paragraph of the judgment:

“she has spent the past year as a patient in an intensive care unit run by the Hospital Trust which brings this application. She has a rare mitochondrial disorder which is a progressively degenerative disease. According to the expert evidence, which is before the court, there is no cure which might enable ST to resume her life outside the clinical setting of the intensive care unit. She is mechanically ventilated through a tracheostomy. She is fed through a percutaneous endoscopic gastrostomy tube and is currently undergoing regular haemodialysis. Her disease has resulted in a number of related health problems including impaired sight and hearing loss, chronic muscle weakness, bone disease and chronic damage to her kidneys and lungs.”

Most of the facts were agreed upon, except for treatability.

1. She had a rare mitochondrial disorder that “was impacting on the motor output from her brainstem with a consequence that her “drive to breathe” was affected.”
2. Besides the effect on breathing, her neurological function was not significantly affected. There was no suggestion of
   1. relevant brain damage or
   2. psychiatric illness.
3. She had a respiratory arrest on August 1st, 2022, associated with COVID-19, requiring emergency ventilation, which could not be withdrawn after that.
4. Her respiratory problems had worsened over the year.
5. She would deteriorate further and die; the length of time was estimated to be between a few days and possibly six months.
6. No treatment would stop or reverse her progression.

Her main dispute was with the lack of treatment. The family had contacted a centre in Canada which was proposing to research a nucleotide treatment, but:

1. Research has not started and was not funded; the optimistic estimate was to begin in 6-12 months.
2. There was no evidence to support its effectiveness, and, on first principles, it was felt that any benefit would only be seen in people in the early stages.
3. Travelling from the UK to Canada would pose a severe risk to her.

Under these circumstances, the hospital clinical team felt the only appropriate management was to offer palliative care. She refused to contemplate that, and the hospital staff thought that she could not decide because she lacked the mental capacity to do so. The hospital approached the Court for a decision on capacity before seeking their opinion of best interests.

Several expert opinions on her mental capacity were presented to the court and considered. They agreed that she could understand and retain information and communicate her decision. As is usually the case, the challenge concerned her ability to use and weigh the information when deciding.

They also agreed that she had exceeding strong beliefs that:

• The medical team was wrong in three ways. She disputed:
  • her decline was due to her condition, attributing it to COVID. She also disagreed that she had worsened.
  • her prognosis and likelihood of dying within days or months,
  • the poor prospect of treatment being available before she died, and being unlikely to help her

Some argued her beliefs were rational albeit over-rated, given (a) she had exceeded the initial prognosis in 2022, (b) her family’s similar equally strong beliefs, and (c) the offers of help from Canada.

The counter-argument was that her beliefs were delusional and so strong that they prevented her from using the provided information. Put another way, she discounted information, so she did not “use or weigh that information as part of the process of making the decision”.

The judge, Mrs Justice Roberts, first considered how the Act defined capacity. The crucial part of “the diagnostic test” (the phrase used in the Act) that determines capacity is written thus:

“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 four tests of understanding, memory, weighing the evidence, and communicating a decision are guidance; the determinative element is the sentence above. The Act recognises that capacity is not absolute, and the judicial decision is made on the balance of probability.

She then identifies the essential issue:

“At the heart of the current dispute in relation to capacity is ST’s ability to use and weigh the information she has been given in relation to both the treatment options which she and her family wish to explore and the alternative of palliative care should the prognosis offered by her treating clinicians be correct, even if the precise timescales are unpredictable.”

Almost every case before the court concerns whether someone uses and weighs the evidence. (Ruck Keene et al., 2019)

This leads her to consider “the functional test of capacity, a person’s ability to understand, use and weigh information as part of the process of making a decision depends on him or her believing that the information provided for these purposes is reliable and true.” She supports this position by referencing previous cases and ‘objective logic’.

The judge interprets the evidence provided as showing that ST did not believe the doctors were giving her trustworthy and reliable medical information about the prognosis. Moreover, the judge felt that ST did not understand what might be involved in accessing and taking experimental treatment. These failures mean that ST could not compare prolonging current treatment against palliative care, which ST considered unacceptable.

The judge then had to decide if there was an impairment in the functioning of the brain or mind. She noted that the experts had not found ST to have any neurological or psychiatric condition. She felt it was not necessary to decide whether ST’s beliefs were delusional.

Her first preliminary point was that the Act did not require a definite or formal medical diagnosis. Second, the legal question was whether the person was rendered unable to decide because of the impairment; the question is not whether the impairment of the brain or mind impaired the decision.

The judge concluded, “I find on the balance of probabilities that ST’s complete inability to accept the medical reality of her position, or to contemplate the possibility that her doctors may be giving her accurate information, is likely to be the result of an impairment of, or a disturbance in the functioning of, her mind or brain.”