The right to choose — belief and dilemmas in capacity assessments

The recent tragic case of An NHS Trust v ST & Anor [2023] EWCOP 40 raises important questions about capacity and belief or understanding in relation to information provided by a doctor to a patient. 

To what extent can hope for a better treatment or cure which flies in the face of the opinion of treating doctors render a patient incapacitous?

At the time of the judgment, ST was a teenager with a terminal prognosis for a rare mitochondrial disorder, a degenerative disease, who sought medical treatment abroad.

Her treating doctors believe that, tragically, she is in the final stage of her life. In their view there is no cure which might enable ST to resume her life outside the clinical setting of the intensive care unit. The hospital trust’s intention is to move ST to a treatment plan of palliative care.

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. The plan is to adopt a much less invasive regime for ST so that dialysis would end although ventilation will continue and there would be no further attempts to resuscitate her in the event of a further major respiratory arrest such as occurred in March and July this year.

Proceedings were issued in February 2023 by the treating trust to determine the validity of a lasting power of attorney which ST had apparently signed some three months earlier and, specifically, to seek declarations in relation to her capacity and her future medical treatment.

Perhaps unsurprisingly, ST wants to do everything she can to extend her life. She has informed her doctors: “This is my wish. I want to die trying to live. We have to try everything”. Whilst she recognises that she may not benefit from further treatment, she is resistant to any attempt to move to a regime of palliative care because she wants to stay alive long enough to be able to travel to Canada or North America where there is at least the prospect that she may be accepted as part of a clinical trial. Her family are supportive of her wishes to be given the chance of nucleoside therapy.

The Honourable Mrs Justice Roberts handed down her judgement on 25 August 2023.

The hearing which took place on 7 August 2023 considered ST’s capacity (i) to litigate and (ii) consent to treatment. These were agreed by all parties to be the preliminary issues to be determined. In the judgement which carefully considers the evidence of both treating doctors and independent experts she limits the scope of her decisions to ST’s capacity to make decisions about her medical treatment and to litigate in the context of both the statutory framework provided by the Mental Capacity Act 2005 and existing case law. She did not seek to determine treatment in ST’s best interests and engagement of the inherent jurisdiction of the court was not an issue for her consideration.

In framing her decision, Roberts J started with both the legal presumption of capacity and the need to adopt a patient-centred approach. She acknowledged that her assessment had to be  conducted in the context of an objective and measured view of the medical and other evidence before the court. She also identified that 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.

Setting out the law and principles governing capacity in the MCA 2005 and acknowledging that capacity may fluctuate Roberts J considered the timing of the Trust’s application for endorsement of a care plan including withdrawal of active medical intervention and a transition to palliative care. She concluded that the “material time” for the purposes of ‘the diagnostic test’ for capacity at (s.2(1) MCA 2005) was ‘anchored’ to the time when a decision needs to be made. In this case she concluded that the decision in relation to capacity needs to be taken now.

At paragraph 77 of her judgement Roberts J set out the important and fundamental aspects of the information relevant to any decision ST makes as follows:

(i) the nature of her disease and the fact that her disease is responsible for the deterioration in her respiratory condition;

(ii) the assessment of her medical team as to prognosis;

(iii) the available options in terms of active treatment including the likelihood of that treatment being available and its chances of success;

(iv) the fact that a small insult arising in the course of her care or management or the further development of her disease (such as another respiratory arrest) may cause potentially fatal clinical instability.

At paragraph 78 it is recognised 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.

In considering ST’s ability to understand or comprehend information about her prognosis Roberts J considered Local Authority X v MM [2007] EWHC 2003 (Fam)³, and Munby J at paragraph 81:

“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.” [emphasis provided].

The judgement also referred to Re MB (Medical Treatment) [1997] 2 FLR 426 and to Butler-Sloss LJ in a case concerning capacity to consent to medical treatment. When considering whether “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.”

Roberts J accepted that ST is aware of the nature of her disease in terms of it being a mitochondrial depletion syndrome which is rare and that ST knows the disease by its nature is progressive and she recognises that, at some point in the future, she may succumb to its effects and die. She found, however, that what ST fails to understand, or acknowledge, is the precariousness of her current prognosis. She does not believe that her doctors are giving her true or reliable information when they tell her that she may have only days or weeks to live. She refuses to contemplate that this information may be true or a reliable prognosis because she has confounded their expectations in the past despite two acute life-threatening episodes in July this year and because she has an overwhelming desire to survive, whatever that may take.

At paragraph 99 it is stated that Roberts J does not find it particularly helpful in this case to frame the enquiry in terms of whether or not ST is delusional. She is also not persuaded that any fixed belief ST holds as to her ability to recover at least improved functioning if she is permitted to embark on nucleoside therapy is explained by her social or cultural background.

Considering the conflicting medical evidence Roberts J asks herself the question whether ST is 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.

Her judgment on the balance of probabilities is 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. This is in light of a traumatic and long admission to ITU; painful and distressing medical and surgical interventions and ST’s fear of dying, Roberts J considers it is not necessary for her to seek to further define the nature of that impairment and is satisfied that it exists and that it operates so as to render ST unable to make a decision for herself in relation to her future medical treatment. This is notwithstanding the resilience which ST has displayed in her determination to carry on fighting.

Future decisions in terms of medical treatment would in the view of Roberts J be decisions on a best interests basis .

Given these findings in relation to subject matter capacity Roberts J opines that it is difficult to conceive of circumstances where ST might be said to have full litigation capacity but lacks subject matter capacity. She was therefore satisfied that this is a case where ST lacks capacity to litigate without the assistance of a litigation friend.

Comment

The judgement in this sad case turns on its specific facts but the concept of belief is an important issue in considering the functional test for capacity in s3 of the MCA 2005. Although there is no reference to a belief of treatment information requirement in ss2 and 3 of the MCA 2005, the ruling of Munby J in MM continues to influence case law and requires consideration more broadly when clinicians and those working in health and social care are assessing capacity on a day to day basis and offering care, treatment and prognosis options.

Healthcare professionals and providers alike should ensure that capacity assessments are fully documented contemporaneously and record any uncertainty about mental capacity and rationale for conclusions reached. Communication with the individual is vital to determining capacity and in principle the person has the right to make a decision that the healthcare professional might disagree with or consider irrational or unwise. There should not be an assumption that an individual is unable to make a decision based on their medical condition or disability. Just because someone lacks capacity to make major decisions, this does not mean they are unable to make minor decisions. In cases involving complex or major decisions a further professional opinion may be required. The Court of Protection oversees the operation of the MCA 2005 and cases are brought to it by professionals involved in decisions about care and treatment as well as family members.