NHS Foundation Trust v QZ

This is an application by an NHS Foundation Trust, seeking an order permitting a hysteroscopy and endometrial biopsy under general anaesthetic, with the objective of identifying the cause of a patient’s postmenopausal bleeding, which was first detected as long ago now as May last year i.e. over 12 months ago. All agree that the patient lacks capacity to take decisions herself in respect of any treatment she may require.

If the patient is found to have a cancerous tumour, or alternatively if the pathology is found to look significantly abnormal, then the permission of this court is sought to authorise an urgent keyhole hysterectomy under general anaesthetic. This would have the wider impact of requiring the court to authorise and endorse the care plan filed by the Trust, which contemplates the removal of the patient from a residential unit and her transfer to hospital. The care plan also envisages post-operative care until subsequent discharge from hospital.

The patient, QZ, is a woman in her 60s with a long-standing diagnosis of chronic, treatment resistant, paranoid schizophrenia. This manifests itself in various ways but is chiefly characterised by disordered thought patterns, paranoid behaviour and a ‘grandiose belief structure’. She also suffers from auditory hallucinations. The most pervasive of her delusions is that she is a young Roman Catholic virgin. She has four brothers but has been consistently resistant to their involvement in any meaningful way in her life. It is a feature of her delusional belief structure that she does not believe that she is related to them. It is a fact that when she was 18 she was married for, it would appear, a period of 10 months, but that relationship is now consigned to history and there has been no contact with the husband for many years.

The Official Solicitor secured the independent instruction of Dr Rebecca O’Donovan in these proceedings and I have heard evidence from her. She is a Consultant Forensic Psychiatrist based within the Women’s Service at the East Midlands Centre for Forensic Mental Health. Her report is detailed and carefully analysed. In its prefacing pages QZ’s mental health history is set out in some detail. It is not necessary for me to repeat that history here but it is perhaps pertinent to emphasise that QZ has been known to mental health services since she was 16 years of age. For 10 years, between 2004 and 2014, she was cared for in a residential setting; however, following a deterioration in her mental state she was admitted to hospital for approximately 18 months. On her discharge she was transferred to her present care home, which provides long term care for adults with a range of mental health needs.

QZ was first referred for gynaecological assessment in July 2016 in consequence of staff at the care home having noticed that she was suffering from post menopausal bleeding. This information was derived primarily from the observations by staff of QZ’s laundry. QZ is, on a day to day basis, able to live independently and can tend to her own toileting and hygiene. The significance of the evidence of such bleeding is that it raises the real risk that QZ might be suffering from a gynaecological cancer, the most common of which, I have been told, is cancer of the endometrium. The other diagnostic possibilities are cancer of the cervix, vulva or vagina.

In August last year QZ attended hospital with her Independent Mental Capacity Advocate (IMCA). There she was encouraged by what was obviously a thoughtful and sensitive gynaecology team into ‘taking things gently’, and into some limited compliance with investigations. They were able to persuade QZ to undertake an ultrasound transabdominal scan which revealed a thickening of the endometrium, i.e. the lining of the womb.

I heard evidence from Mr Abdul, a Consultant Gynaecological Oncologist and Laparoscopic and Robotic Surgeon. He told me that the thickening of the lining of the womb is indicative of an increased risk of cancer. In his view the thickness of the endometrium (6mm) and the ongoing bleeding, now for over 12 months, led to a benign cause of the symptoms being less likely. Dr Abdul evaluated the chances of QZ having cancer as between 30% and 50%. The next stage, he told me, would be to follow through with a hysteroscopy. This involves a telescopic instrument being inserted into the vagina along with saline solution to permit an examination of the cervix and womb and facilitate biopsy, where necessary. It may be significant that when first approached about this process, QZ initially agreed to an internal investigation; however, when asked some standard questions about her next of kin, she changed her mind. She did though agree to further investigation being undertaken whilst she was asleep, but then apparently left the hospital and did not return. There have been a number of efforts to persuade her to go back but though they have been, I have no doubt, sensitive and cautious, they have not ultimately been successful.

Dr Abdul’s framework of the development of endometrial cancers requires to be recorded. Within his report, dated 30^th May 2017, he states that it is very difficult to confirm a prognosis of endometrial cancer (the most likely kind she might have) as this depends entirely on the state at which it is identified and treated. The histology of endometrial cancers, he told me, is usually endometroid type in 75-80% of cases, with other types, 20-25% often associated with poorer prognosis. The stage at diagnosis ranges from 1-4:

A statement has been filed by the Registered Mental Health Nurse at the care home. She summarises the records and observations, from which it would appear that bleeding has not significantly increased. I note that there is a record of her reporting stomach cramps. In any event, as Ms Roper, who appears on behalf of the Trust, has observed, it is difficult to be sure how comprehensive this picture is because, all agree QZ has been secretive about her symptoms and has tried, for example, to conceal her underwear.

In evidence Mr Abdul provided a thorough but concise analysis of the gynaecological background. He observes, “Generally speaking any patient with postmenopausal bleeding is automatically referred as a 2-week wait patient. In these circumstances, there is normally an 80% chance of the bleeding being due to atrophic vaginitis, a 10% chance of there being benign pathology and a 10% chance of there being something cancerous, most commonly endometrial cancer (i.e. cancer of the womb). The ultrasound scan is normally used as a method of triaging the patient to determine whether the endometrial biopsy is required and we would also want to examine the patient vaginally to ensure there is no cervical, vaginal or vulval cancer causing the bleeding, or any benign pathology in these areas that could be causing the bleeding. As long as the examination was normal we would normally then proceed to take an endometrial biopsy in the clinic if this was more than 4mm in thickness.”

He goes on to say that QZ’s presentation is typical of the most common cancer, endometrial cancer, and emphasises that the guidelines advise immediate referral of any postmenopausal patient. He observes that it is common for there to be no overt presentation of pain until a relatively late stage in the cancer. It is profoundly troubling to me that I am being asked to consider the issues here over 12 months after the serious health concerns became known. I record that I have been provided with no satisfactory explanation for the delay. I re-emphasise that I am concerned with a vulnerable and incapacitous woman.

There can be no doubt, from what I have set out already, that QZ is aware that she has the physical symptoms of vaginal bleeding. She appears to understand the concept that she may have cancer, at least theoretically. But any internalisation of that concept is inhibited by her own delusional belief structure, and I have been told that she rationalises these results in her own mind as belonging to somebody else. When drawn into conversation on the point, I have been told that she becomes distressed and there is, for a short term, an elevation in her paranoid behaviour and thought.

There is no doubt that QZ lacks the capacity to make any decision about her medical treatment for herself. She is at this hearing represented through the Official Solicitor by Miss Claire Watson. In her position statement filed for this hearing Miss Watson submitted on behalf of the Official Solicitor that ‘this is a very difficult case’ and it is ‘not clear’ that the proposed treatment is in QZ’s best interests. Given the significant risk to QZ’s mental health identified by Dr O’Donovan and Dr Horton and the potential impact of the proposed care plan on her current residential placement the Official Solicitor wished to reserve his position as to whether to oppose or to support declarations sought by the applicant until the evidence had been tested. At the conclusion of the evidence Miss Watson advised me the Official Solicitor resisted the application. Miss Watson characterises the case as ‘exquisitely difficult’ and ‘very finely balanced’. Ms Roper agrees with that evaluation.

It is clear that all the relevant professionals are now firmly of the view that QZ will not agree to further investigations or, if it proves necessary, the hysterectomy being undertaken. Whatever the way forward, if the Trust’s application is to be granted it is recognised that there would have to be a degree of coercion and some proportionate degree of force. Miss Watson emphasises that the risk of cancer being present is between 30% to 50%, in other words there is at least a 50% chance that cancer is not there at all. Thus it follows that the intrusive procedures contemplated may be undertaken for no purpose.

QZ has a deep-seated long standing and entirely delusional belief that she is being poisoned by her carers or doctors and that she is at risk of being raped by them. She profoundly believes that she has been sexually abused and/or raped in the past. In identifying where QZ’s best interests lie, in the context of these investigations, it is unnecessary to investigate whether there is any element of truth underlying her belief system. The fact is that her views are vigorously held and have endured over most of her adult life. Thus, for her, the contemplated interventions in this case are extremely difficult to reconcile. They collide directly with her delusional belief structure i.e. that she is to be raped or in some way sexually violated. At her present unit she has made significant progress. In the time that she has been in this care home she has been happier and more settled than she has been at virtually any stage in her adult life. When residing at her last care home, a situation arose in which she had to move to a new setting, albeit within the existing unit. In consequence of this and almost immediately the relationships that she had begun to forge with the staff there deteriorated and did so rapidly. QZ believed that the move was a breach of her trust. This in itself led, quickly, to non compliance with medication and inevitable deterioration in her mental state. Dr O’Donovan analysed that as a process of ‘decompensating’ when her ‘perceived autonomy’ was taken away from her. In her report she said as follows:

“At present there is no definitive diagnosis of cancer. Therefore, in the absence of any histology the 30% to 50% risk of having a cancerous illness needs to be balanced against an almost certain risk of her mental state being adversely affected by this process.”

Dr O’Donovan went on to say:

“consideration needs to be given to other aspects of the care plan that have been suggested and the logistics of this. In the event that it is found that she does have cancer and has a hysterectomy, it has been recommended that she may need radiotherapy daily for 5 weeks.”

Mr Abdul has confirmed that radiotherapy ‘is not proposed in QZ’s case’and it does not arise for further consideration here. Dr O’Donovan concluded that a key factor that needs to be considered is whether the risks to QZ’s mental health are outweighed by the further benefits of investigating ‘the chance’ she may have cancer. She goes on to say, in the absence of information about her “pre-morbid level of functioning” and “personally held views”, determining whether proceeding with the treatment plan that has been proposed is in her best interests is a matter for the court. Dr O’Donovan was pressed on this and, in my assessment of her evidence, really came ultimately to the conclusion that the inevitability of a serious and potentially prolonged collapse in QZ’s general mental well being, ultimately weighed more heavily in the balance than the potential benefits involved in investigating the possibility of cancer. The quality of her life, in terms of her stability and emotional security she said, would be so reduced that it had to be evaluated with a very critical eye alongside the preservation of her life in the event that she had cancer.

When contemplating the possibility that QZ’s brother might assist in helping her to comply with the investigation, Dr O’Donovan considers that QZ would perceive this breach of confidentiality as reinforcing her beliefs that healthcare professionals cannot be trusted. Moreover, QZ has been consistent in expressing a view that she does not wish her brother to be involved in her care in any way.

Dr Horton is QZ’s treating psychiatrist. He has seen her regularly over the past 2 years and tells me that he considers QZ to be a ‘resilient’ woman. Although she insults him volubly on his arrival, she in fact complies with his advice and accepts his dispensed medication. She asserts that she believes it to be poisoning her, but nonetheless takes it without fuss or trouble and has done now for some time and on a regular basis. This, Dr O’Donovan considered, indicated that alongside the delusional thought processes ran a rational coping strategy. It was precisely this that Dr O’Donovan wanted to preserve and considered would be lost if QZ’s delusional paranoia overwhelmed her.

Whilst I was impressed by Dr O’Donovan’s careful and insightful assessment of QZ, almost all of which was accepted readily by the treating psychiatrist, I nonetheless considered that Dr Horton with his greater and longer term knowledge of his patient was better placed to evaluate her resilience. He was distinctly more positive about QZ’s ability to regain trust and learn again in future to work effectively with professionals. That she had been able to do so in the past, he reasoned, was a good prognostic indicator of her capacity to do so in the future. That said, he did not for one moment underestimate the enormity of the impact that this intrusive medical process might have on this particular woman, nor did he shy away from saying that a significant mental health deterioration was, in effect, inevitable. His preparedness to accept those propositions reinforces, in my assessment, his overall professional objectivity which, when coupled with his greater knowledge of QZ, led me ultimately to be more confident in his evaluation of QZ’s resilience than the less optimistic assessment undertaken by Dr O’Donovan.

I am not here directly concerned with a case that involves preserving life, it has to be stressed that QZ’s life may not be in peril at all. There is however, a significant risk that it is. I have to evaluate, on the facts of this particular case, the possibility of loss of life against the inevitability of serious deterioration of mental health.

I have been referred to a number of authorities, in particular Aintree University Hospitals NHS Foundation Trust v James and others [2013] UKSC 67, Wye Valley Trust v B [2015] EWCOP 60, M v Mrs N [2015] EWCOP 76 (Fam), and Briggs v Briggs & Ors [2016] EWCOP 53.

In considering the relevant factors, the Court should look at the question from the assumed point of view of QZ. In the leading judgment of Aintree v James, Baroness Hale sets out the proper approach as follows:

“‘The most that can be said, therefore, is that in considering the best interests of this particular patient at this particular time, decision-makers must look at his welfare in the widest sense, not just medical but social and psychological; they must consider the nature of the medical treatment in question, what it involves and its prospects of success; they must consider what the outcome of that treatment for the patient is likely to be; they must try and put themselves in the place of the individual patient and ask what his attitude to the treatment is or would be likely to be; and they must consult others who are looking after him or interested in his welfare, in particular for their view of what his attitude would be.”

As also set in out Aintree v James:

“‘the focus is on whether it is in the patient’s best interests to give the treatment, rather than on whether it is in his best interests to withhold or withdraw it. If the treatment is not in his best interests, the court will not be able to give its consent on his behalf and it will follow that it will be lawful to withhold or withdraw it. Indeed, it will follow that it will not be lawful to give it. It also follows that (provided of course that they have acted reasonably and without negligence) the clinical team will not be in breach of any duty towards the patient if they withhold or withdraw it.’ [§22]”

I am bound to say that this is a case where I do not think that a ‘balance sheet’ approach (see : Re A (Male Sterilisation) [2000] 1 FLR 549 per Thorpe J at §560F-H) is helpful. It does not really accommodate the enormity of the conflicting principles which are conceptually divergent. The Trust acknowledges that the treatment contemplated for QZ may be of no real utility if either the cancer is not present or alternatively if it is so aggressive and developed that the hysterectomy would serve no purpose. Ms Roper submits:

“If this were purely a question of medical/physical best interests, the Trust would submit that the evidence was overwhelming that RS should have the proposed treatment, on the basis that it carries a significant chance of curing her of cancer and thereby prolonging her life. The Trust submits that the physical risks of anaesthesia and of over or under treating are plainly outweighed by the chance of a longer and pain free life and of avoiding a painful death. ”

She identifies what she terms ‘the essential question for this Court’ as being that encapsulated by Dr O’Donovan in her report:

“‘One option is that she potentially has a shorter life that is of a quality that she considers to be acceptable; although in the absence of treatment, the end of her life has the potential to become painful and distressing. Versus, she has a longer life but is traumatised by her negative perception of the experiences that she had endured and is tormented by the symptoms of her mental health for some time to come.’”

For the reasons that I have identified above I do not believe this entirely captures the equipoise of the competing factors. The views of the treating psychiatrist as to QZ’s resilience and Dr O’Donovan’s own identification of her ‘rational coping strategies’ introduces the real prospect that the mental distress may be transitory. Thus, Dr O’Donovan’s premise of a shorter life of better quality as against a longer life of pain and distress is, with respect to her, too absolute.

It is very clearly established that the approach to evaluating the best interests of P in these circumstances, under the framework of the Mental Capacity Act 2005, are the principles set out in section 4 of that Act. It is also, as Ms Roper emphasised in her position statement, well established that there is no constraint on the factors the court should take in to account when considering best interests. She emphasises this is an holistic exercise involving not only medical best interests but the wider social and emotional gamut of a patient’s interests. Although Miss Watson invites me to take a ‘balance sheet’ approach to the exercise, such a process is, in my judgement, as MacFarlane LJ has stated, rather like a reading a map without contours, different factors plainly weigh disproportionately.

Ms Roper submits that if QZ has cancer and has the proposed operation, there is a good chance that the treatment will be effective and ensure her a longer life. In the course of evidence and in exchanges with Counsel other variables have properly been identified. Thus, if cancer exists; if it has not progressed too far; if it is endometrial rather than cervical or vulval; there is every prospect that QZ may live for many years. There is no other health complication.

Miss Watson suggested that this case was analogous to Wye Valley Trust v B (supra). She referred me to the observations of Mr Justice Peter Jackson particularly his analysis that the wishes, feelings, beliefs and values of a person with a mental illness can be of such long standing that they become inextricably a facet of who that person is. Peter Jackson J specifically rejected the submission of the Trust, entirely correctly in my view, that wishes and feelings, when they are ‘intimately connected with the causes of lack of capacity’, will always, be outweighed by the presumption in favour of life or alternatively attract ‘very little weight’. The Judge went on to state:

“It is more real and more respectful to recognise him for who he is: a person with his own intrinsic beliefs and values. It is no more meaningful to think of Mr B without his illnesses and idiosyncratic beliefs than it is to speak of an unmusical Mozart.”

The wishes and feelings of those who suffer from delusional beliefs are not automatically, in my judgement, to be afforded the same weight as the beliefs articulated by an individual who has had the fortune to possess the powers of objective reasoning and analysis. There is nothing in Wye Valley v B which supports anything to the contrary. The kernel of the issue is that delusional beliefs should never be discounted merely because they are irrational. They are real to the individual concerned. The weight they are to be afforded will differ from case to case and, as always, will fall to be considered within the broader context of the evidence as a whole. It is notable that in the Wye Valley case, B’s beliefs, though in part delusional, were connected to a profound religious belief. In addition, Mr B, if the proposed amputation had proceeded, would have had limited independence and dignity and his life was, on the evidence, unlikely to be extensive. In the circumstances the core quality ‘of his fierce independence’ prevailed.

“Mr B has had a hard life. Through no fault of his own, he has suffered in his mental health for half a century. He is a sociable man who has experienced repeated losses so that he has become isolated. He has no next of kin. No one has ever visited him in hospital and no one ever will. Yet he is a proud man who sees no reason to prefer the views of others to his own. His religious beliefs are deeply meaningful to him and do not deserve to be described as delusions: they are his faith and they are an intrinsic part of who he is. I would not define Mr B by reference to his mental illness or his religious beliefs. Rather, his core quality is his "fierce independence", and it is this that is now, as he sees it, under attack.

Mr B is on any view in the later stages of his life. His fortitude in the face of death, however he has come by it, would be the envy of many people in better mental health. He has gained the respect of those who are currently nursing him.

I am quite sure that it would not be in Mr B's best interests to take away his little remaining independence and dignity in order to replace it with a future for which he understandably has no appetite and which could only be achieved after a traumatic and uncertain struggle that he and no one else would have to endure. There is a difference between fighting on someone's behalf and just fighting them. Enforcing treatment in this case would surely be the latter.”

The circumstances of OZ’s life are very different. She has the prospect of many years ahead. The contemplated medical intervention is, objectively, of limited intrusion. She has shown the capacity to forge bonds of trust with professionals. She has developed resilience ‘to fight back at some point in the future’ and she has managed to live life in circumstances where she has a level of privacy, independence and dignity. Each of these factors reveal facets of her personality. They are just as much a part of who she is as are her paranoid and delusional beliefs which must not be permitted to eclipse them. The prospect that following medical investigation and or treatment and a period of profound mental distress OZ may recover a life which has both happiness and dignity incorporated into it, is one which is very real. Permitting the treatment here is, to adopt Peter Jackson J’s careful terminology, not fighting OZ but fighting on her behalf. I propose to authorise the treatment in the terms of the draft order.

Following this hearing I delivered an immediate ex tempore judgment in open Court. I did so because I was determined there should be no further delay for QZ. This perfected judgment is taken from Counsels’ impressively accurate note. An issue arises in relation to reporting restrictions. It is unusual in the Court of Protection not to identify the Applicant Trust. It is essential that public confidence in the extremely important and difficult decisions that this Court has to take is not corroded by unwarranted or overcautious anonymisation of the parties. Whilst I do not consider it likely that QZ will recognise the description of herself in the press because, as I have said, she believes herself to be a much younger person living in different circumstances. However, I have been told by Ms Roper, and I accept, that there are, in this particular care home, regular meetings in which the patients are encouraged to read and share articles from the newspapers. It is I think therefore distinctly possible that other patients may recognise QZ if the Trust were named. I do not therefore on this occasion propose to do so. The same restriction does not apply to the treating clinicians and I propose that each be named along with the independently instructed expert. There is a powerful public interest in transparency in these cases involving, as they do, matters which engage fundamental issues of human freedom and autonomy.