An NHS Trust v ST & Ors [2023] EWCOP 40

Summary: Capacity decision, relating to ST, a young woman dying from a progressive disease who did not believe her doctors’ prognosis and wished to continue medical treatment in order to seek treatment abroad.

Background

ST was 19 years old and had spent the previous year as a patient in an intensive care unit with  a rare mitochondrial disorder. This was a progressively degenerative disease with no known cure. ST was mechanically ventilated through a tracheostomy and fed through a percutaneous endoscopic gastrostomy tube. She was undergoing regular haemodialysis and her disease had resulted in numerous related health problems including impaired sight, hearing loss, chronic muscle weakness, bone disease and chronic damage to her kidneys and lungs. The clinical view was that ST was in the final stage of her life.

The hospital Trust bringing the application planned to move ST’s treatment to palliative care which would be much less invasive. Dialysis would cease and there would be no further resuscitation attempts in the event of major respiratory arrests. Treating clinicians were aware of the need to involve ST as far as possible in how she would be cared for but, in preserving respect for her personal autonomy to make choices, the clinicians were met with a fundamental obstacle which was “her apparent refusal or inability to accept that her disease will result in her early, if not imminent, death.” That inability, or “delusion”, is what the Trust relied on, as rendering ST incapacitous to make future medical treatment decisions for herself.

ST had engaged in two separate capacity assessments. She was described by those who knew her as “a fighter” which was how she saw herself. Experimental nucleoside treatment outside the United Kingdom offered ST hope and she had told her doctors that she wanted to do everything she could to extend her life. She told Dr C, one of the psychiatrists who had visited her: “This is my wish. I want to die trying to live. We have to try everything”.

Whilst ST recognised that she may not benefit from further treatment, she was resistant to any attempt to move to a palliative care regime because she wanted to stay alive long enough to travel to Canada or North America, should she be accepted as part of a clinical trial. ST was well aware that she had been offered a very poor prognosis by her doctors and acknowledged that they had told her that she would die but she did not believe them. ST believed she had the resilience and the strength to stay alive for long enough to undergo treatment abroad and wished the court to acknowledge her right to make that decision for herself.

Discussion

Both psychiatrists involved in ST’s case, Dr C and Dr D, considered that ST had capacity to make decisions about her future medical treatment, and neither considered that she had an impairment of or disturbance in the functioning of her mind or brain. However, the Trust took a different view, relying on evidence from the consultant leading her care, Dr A, who whilst accepting that he could find no evidence of psychological disturbance or brain damage, was concerned that “she is unable to weigh up the pros and cons of what he described as ‘a dignified death’. As such he believes that she is suffering from a delusion which derives from a false reality in that she cannot contemplate her own death”.

The court had two specific questions to address in order to determine the issue of capacity in this case:

  • Firstly, was ST unable to make decisions for herself in relation to:
  • conducting litigation without the assistance of a formal litigation friend, and
  • her current and future medical treatment including the level of medical intervention going forward; the stage at which that medical intervention should be reduced or withdrawn; and whether to embark on a trial of nucleoside therapy, if it becomes available to her?
  • Secondly, if she was unable to make decisions in either domain, did that inability arise because an impairment of, or a disturbance in the functioning of, her mind or brain?

Roberts J made it clear that she considered that: “In terms of 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. That proposition is grounded in objective logic and supported by case law in the context of both the common law and the interpretation of MCA 2005.”

Dr A detailed his concern that ST had failed to understand or accept the prognosis given to her by her doctors that she would soon die from her condition, and that ST had a “deeply seated misunderstanding” of her illness and care needs. He believed that ST was capable of understanding, retaining and weighing up information about her day-to-day care needs but lacked this capability in relation to treatment options and longer-term care because she could not contemplate any outcome that was inconsistent with her own conviction that she could, and would, recover. ST could not therefore weigh up alternative options, including palliative care and what that might involve. 

When the terms of s.2(1) of the MCA 2005 were put to him, Dr A accepted that he could find no evidence of a psychological disturbance which had affected the functioning of ST’s mind or brain.

Roberts J referred to the following case law:

  • Re MB (Medical Treatment) [1997] 2 FLR 42 which said: “A person lacks capacity if some impairment or disturbance of mental functioning renders that person unable to make a decision whether to consent to or refuse treatment. That inability to make a decision will occur when:
    • the patient is unable to comprehend and retain information which is material to the decision, especially the likely consequences of having or not having the treatment in question;
    • the patient is unable to use the information and weigh it in the balance as part of the process of arriving at the decision. If, as Thorpe J observed in Re C, a compulsive disorder or phobia from which the patient suffers stifles belief in the information presented to her, then the decision may not be a true one.”
  • Local Authority X v MM [2007] EWHC 2003 in which Munby J said: “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.”
  • Leicester City Council v MPZ [2019] EWCOP 64 which also followed the above approach in a case which involved a young woman with learning disabilities and personality disorders in the context of decisions concerning litigation capacity and the arrangements for her residence, care and contact with others. Here the rejection of information, which was objectively evidenced and true, prevented her from using the information effectively for the purposes of informed decision-making.

Applying this to the facts of ST’s case, Roberts J noted that ST was aware of the nature of her disease and that she may succumb to its effects and die. However, what ST failed to understand, or acknowledge, was the precariousness of her prognosis. ST did not believe her doctors were giving her true or reliable information when saying that she may have only days or weeks to live. Because she clung to the hope that her doctors were wrong, she had approached decisions in relation to her future medical treatment on the basis that any form of treatment is a better option than palliative care which may likely result in an early death as active treatment is withdrawn.

Judgment

Roberts J said: “In my judgment she has not been able to weigh these alternatives on an informed basis because (a) she does not believe what her doctors are telling her about the trajectory of her disease and her likely life expectancy, and (b) she does not fully comprehend or understand what may be involved in pursuing the alternative option of experimental nucleoside treatment.” 

The next question was whether ST’s inability to make a decision for herself was because of an impairment of, or a disturbance in the functioning of, her mind or brain (the diagnostic test). Roberts J said: “In my judgment she refuses to contemplate when her death may occur because she has invested all her remaining physical, emotional and spiritual energy in staying alive and pursuing the option of alternative treatments. She cannot contemplate that her doctors may be right in their assessment of her prognosis because she does not recognise or believe that her progressive respiratory failure is a symptomatic manifestation of the course of the disease and she has managed to survive to this point in time despite their attempts to persuade her that she is dying.”

ST told Dr A that her belief in her ability to survive her disease was “unshakeable”. He had characterised this as a “deeply seated misunderstanding of her illness and her care needs”. Roberts J said: “At present she is unable to contemplate an outcome which is inconsistent with her conviction that she can, and will recover. She cannot address her mind to weighing up alternative options, including palliative care and what that might mean for her.”

In the light of this evidence the question that needed to be answered was whether ST was thereby rendered unable to make a decision in relation to her medical care because of an impairment of, or disturbance in the functioning of, her mind or brain. Roberts J said: “In my judgment, and based upon the evidence which is now before the court, 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.”

The cumulative effect of ST’s circumstances over 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 and Roberts J said it was not necessary for her to seek to further define the nature of that impairment. She said: “I am satisfied that it exists and that it operates so as to render her unable to make a decision for herself in relation to her future medical treatment.”

In relation to capacity to litigate, Roberts J noted that it includes not only an understanding of the issues in the case but also an ability to understand, use and weigh the arguments on the evidence so as to give instructions in relation to the arguments of other parties who may take an opposing position. Given the findings in relation to subject matter capacity, it was therefore difficult to conceive of circumstances where ST might be said to have full litigation capacity but lack subject matter capacity. [CASCAIDr: NB There is an example of this very rarity, in our report on another recent case here: Z NHS Foundation Trust  & Y NHS Foundation Trust v Patricia, X NHS Foundation Trust and V NHS Integrated Care Board].

Comment

This is an important case in terms of how the tests within MCA are applied. Roberts J deals with the importance of belief within the functional test which the court must consider under s. 3 of the MCA

in reaching her conclusion that ST was not functionally capable of making treatment decisions.

It is of course entirely understandable that a person would have an overriding desire to live and the Official Solicitor submitted that the court must take account of the understandable human emotion of hope even if that hope is forlorn in the dire circumstances in which ST found herself. However, the concern in this context lay in where the boundary should be drawn between an unwise (one might say a feisty or stubborn) and an incapacitous decision. It was acknowledged that ST was aware that her condition involved the possibility of death. ST also expressed a wish that she wanted “to die trying to live” and that no option must be left unexplored in that endeavour (“We have to try everything”).

Clearly the concern expressed here by the Official Solicitor was that just because somebody does not believe what their doctor tells them, does not then necessarily mean that they lack capacity.  But taken to the degree in this case, the test for the MCA was met. In dealing with the somewhat inaccurately titled ‘diagnostic test’ Roberts J sets out the impairment, or disturbance in the functioning of ST’s mind or brain despite the clinical evidence being that none existed. The fact of ST’s approach being illogical or irrational was sufficient and no disorder was needed; this approach fits with the cases on OCD, phobias, entrenchment and oppositional disorder which have also gone through the courts.

It is worth noting that even if she had enjoyed ongoing capacity that would not have meant that the hospital Trust was obliged to treat her actively. A refusal in that context would have had to have been judicially reviewed, not made the subject of a CoP case. Offering a course of palliative care could have been the only option offered, and the CoP is not able to tell professionals what to do, even if refusing to declare that it was in a person’s best interests.

We also note with interest the use of both a litigation friend and the Official Solicitor. Whilst unusual, particularly as ST was regarded to be capacitated until the case was over, based on the facts of the case this may perhaps have been a sensible use of the Court’s powers to have both ‘formal’ and ‘informal’ representation. It does suggest though, that she was thought not to have litigation capacity from the outset.

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