R (Serious Medical Treatment), Re

This very sad application concerns a 40-year old man, who I shall refer to as R, who suffers from chronic paranoid schizophrenia and has now been diagnosed with an incurable brain tumour. The acute trust responsible for his care now seeks a declaration that it is lawful and in his best interests not to undergo treatment for the tumour but rather to be provided with palliative care only.

R has a long history of mental health problems. He has been admitted to hospital under Section 3 of the Mental Health Act 1983 on a number of occasions and has been in hospital continuously for nearly six years. His illness is characterised by a range of paranoid delusional beliefs and abnormal perceptions, including the belief that he is being interfered with by other people. He has also exhibited intermittent hostile and threatening behaviour.

There is an uncontested assessment as to his capacity so far as relevant to this application, namely that he lacks capacity to conduct these proceedings or to make medical decisions about the medical treatment for his brain tumour by reason of the disturbance in the function of his mind or brain. That is the unanimous view of the doctors responsible for him, including the psychiatrist, Dr W, responsible for his care. When the Official Solicitor’s representative visited a fortnight ago to ascertain his wishes and feelings about the treatment, he declined to meet her and he stated that he did not have a brain tumour. I am satisfied that the evidence clearly establishes that he lacks the capacity to litigate and to make decisions about his future.

The need for treatment, or possible need for treatment, arises because in December 2013 a routine MRI scan revealed an incurable but asymptomatic brain tumour. At that stage the tumour was considered to be likely to be low-grade and not aggressive, and the treating clinicians decided to adopt a ‘watch and wait’ approach. At that time he accepted that he had a brain tumour and was agreeable to that course.

Further scans indicated that the tumour was growing and, in subsequent conversations, R has been inconsistent about whether or not he has a tumour, on occasions accepting that he has, on other occasions denying it. Earlier this year a further MRI scan revealed that the tumour was growing at a faster rate than would be expected, although he remains asymptomatic.

Standard treatment in these circumstances would be for the tumour to be removed by surgery and for the patient, thereafter, to receive a course of daily radiotherapy over a period of six weeks and possibly chemotherapy thereafter. It is important to stress that the tumour is considered to be not curable so the aim of treatment will be to prolong his life and maintain his quality of life.

Life expectancy depends on a range of factors including the type and grade of tumour. It may vary from 12 to 18 months in the case of a Grade 4 tumour to an excess of 10 years in the case of a Grade 2 tumour in certain cases.

Surgery has side-effects - risks of weakness or paralysis and a small risk that he would be left with communication difficulties and a decline in his general cognitive function. In addition, I am told R is overweight and this would add to the general issue of surgery. Furthermore, because of his psychotic condition, it would be hazardous to use dexamethasone, a drug commonly used to reduce the risk of brain swelling post-operatively.

As stated, following surgery, the normal course of treatment is radiotherapy. That, of course, brings with it side effects. However, perhaps more importantly, in his case, it would involve a process of treatment with which he would have to be compliant for a period of some time during each session.

There are also side effects to chemotherapy, of course. In particular in his case, given his other health problems, I am advised that chemotherapy would give rise to significant compliance issues and other significant side effects, importantly including neutropenic sepsis with low immunity to infection and thrombocytopenia with low platelets and risk of bleeding.

In the view of the clinicians and in particular Dr H, his consultant oncologist, the risks of this treatment are too high in relation to its potential benefits in this particular case. Dr W, his psychiatrist, considers that managing R in the pre-, peri- and post-operative periods would be very difficult, that it the treatment would create a significant risk to R and would be likely to cause him distress which would exacerbate his mental health symptoms.

Dr W puts it this way in his report. There would be difficulties in getting R to attend to comply with appointments prior to and after the surgery, bearing in the mind the difficulties that have been experienced in the past in persuading him to attend relatively straightforward appointments. In the absence of at least tacit acceptance by R of the need for treatment, and a willingness to comply with all that goes with accepting treatment – attending appointments, accepting directions from the staff, staying in one place – it is considered that these difficulties would recur and that any attendances at the hospital would be likely to cause him significant distress and thereby trigger a worsening of his mental state. Furthermore, were he to foresee that he was being taken forcibly for treatment for which he did not understand the need, not only would he see it as an affront but also it would lead him to resist and his mental health problems would be exacerbated. The hospital would, in all probability, lack the resources to manage the behaviour and managing his post-operative period would be equally difficult. Administering post-operative medication would cause difficulties with compliance and also, as set out above, might exacerbate his psychosis.

A multi-disciplinary team meeting was held on 3 June this year at which members of his family were in attendance. The treatment options were discussed and the unanimous view of the meeting was that it was not in his best interests to undergo the treatment. Instead it was the recommendation that he should receive palliative care only.

Thus these proceedings have been started. In the course of the proceedings, R has been represented by the Official Solicitor. A second opinion has been obtained from a consultant neurosurgeon with an interest in neuro-oncology, who has confirmed optimal management for treating such a tumour, but agreed with the conclusions of the best interest meeting in this case.

In making a decision, any decision-maker, and in particular this court, has to apply the relevant provisions of the Mental Capacity Act 2005, in particular Section 1(5) ‘An act... or decision made, under this Act for or on behalf of the person who lacks capacity must be done, or made, in his best interests’. As to best interests, Section 4 sets out the factors to be taken into account and the approach to be adopted by anybody making a decision on behalf of an incapacitated adult.

The Mental Capacity Act Code of Practice addresses the particular issues that may arise in this type of case. In paragraphs 5.31 to 5.33, which I now recite:

The leading authority on the approach of the Court to decisions in cases of an application to withhold or withdraw life-sustaining treatment is now the decision of the Supreme Court in Aintree University Hospitals NHS Foundation Trust v James [2014] AC 591. In particular, I bear in mind the observations of Baroness Hale of Richmond at paragraphs 35 and 39 of her judgment. At paragraph 35 she stated inter alia,

In this case, as I have stated, R has said different things at different times about his approach to the treatment. As for members of his family, they are unanimously of the view that the recommendation of the Trust should be complied with.

The Trust has put forward a balance sheet in accordance with good practice, identifying the factors for and against treatment. The Trust submits that the factors in favour of treatment include that (1) it may prolong R’s live for several years; (2) it may delay the onset of symptoms of his brain tumour. As far as the factors against treatment are concerned, the Trust has identified the following: (1) the factor is the tumour is incurable; (2) the treatment would be very burdensome for R to endure; (3) R will be unlikely to cooperate with treatment such that restraint or force would probably have to be used; (4) the risks of treatment may materially diminishing his quality of life; (5) undergoing the treatment may cause his psychiatric symptoms to deteriorate thereby diminishing the quality of his life; (6) insofar as he expresses any wishes, he says that he does not want to have the treatment, although, as I have stated, he has been inconsistent in what he has said about those matters.

The Official Solicitor is broadly in agreement that these are the relevant factors. Special care should be taken in a case where the issue is whether life-prolonging treatment that will be recommended to patients with the capacity should be withheld from those who lacks capacity. It is the Official Solicitor’s opinion that, if the effective treatment of the tumour persists with surgery alone, the treatment would probably be in his best interests. However, the Official Solicitor it is particularly concerned about the impact of the other treatment, pre and post-operation, in particular the burdens of radiology and chemotherapy. The Official Solicitor considers that there must be a significant risk that, even if the radiotherapy course was to be started, he would decline to attend all treatment sessions, and the Official Solicitor draws attention to the evidence that a premature discontinuation of radiotherapy treatment is likely to be harmful in terms of tumour growth due to the radiological effects and depopulation of the tumour.

The trust’s conclusion is that, taking account of all relevant factors, it is not in R’s best interest to undergo surgery and or radiotherapy and or chemotherapy, so that he should be provided with palliative care only.

For the Official Solicitor, it is the risk of starting but not completing radiology that is the key factor in this case. The Official Solicitor submits that this is a very difficult decision because of his young age and because the possibility of the treatment may afford him considerably longer life than he would be likely to have if the application is granted and the tumour is allowed to take its course. However, on balance, the Official Solicitor concludes that the consequences of starting a course of radiotherapy to his brain would be so injurious to his mental health and wellbeing and so unpleasant that it is appropriate to conclude he should not, in his best interests, undergo such a course of treatment.

Putting myself in R’s position, I consider it highly likely that he would not choose to have the surgery. Were he to start the treatment, he would suffer significant adverse effects, both in terms of the effects of the medication upon him, but also as a result of his likely non-compliance. Thus, the prospects of success of the treatment succeeding would be very much diminished. In any event, the evidence suggests that he would not be cured by the treatment. At most, his life would be extended for a period.

Having regard to all the circumstances, in particular the probability that he would not cooperate and the likely issue of significant adverse side effects of the treatment on his mental health, I conclude that his best interests, in the widest sense, require me to make the declaration that is sought in this case.

Accordingly, I declare that, as already stated, he lacks capacity to conduct these proceedings and make decisions about his medical treatment for his brain tumour. I further declare that it is lawful and in his best interests not to undergo surgery and/or radiotherapy and/or chemotherapy and that he be provided with palliative care only.

I direct that the trust should, in accordance with the usual rule, pay the half of the Official Solicitor’s costs to the assessment agreed and I also direct that the trust should pay the costs of the transcript which I shall order on this judgment.

Thank you all very much. I am very grateful for your assistance.