Trust A & Anor v H

In this case a Primary Care Trust (which I shall call Trust A) and a Hospital NHS Trust (whom I shall call Trust B) apply to the court under its inherent jurisdiction in respect of a forty-five year old female patient (H), a woman presently detained under s.3 of the Mental Health Act 1983. She has been under the care of Trust A since July 2001 when she was detained under s.2 of the 1983 Act and subsequently treated in the community whilst residing at her home address. On 23 September 2004 she was again detained under s.3 of the 1983 Act and has continued to remain under that section until the present date.

The nature of the application is first for a declaration that H lacks capacity to make decisions about her medical treatment for the ovarian cyst from which she has been suffering for some time and her general gynaecological condition. Second, a declaration is sought that it is in the best interests of H to receive the following medical treatment in respect of her condition; namely a laparotomy, total hysterectomy, bi-lateral salpingo-oophorectomy, omentectomy and peritoneal sampling under general anaesthetic. Finally, the court is asked to declare it lawful for those delivering such medical treatment to provide sedation and, if necessary reasonable physical restraint, in order to administer pre- and post- operative treatment.

On 10 May 2006 having heard counsel for the parties and considered their evidence, I granted a declaration on the following lines:

1.

The Defendant lacks capacity to make decisions about her medical treatment for her ovarian cyst and gynaecological condition.

2.

It is in the Defendant’s best interests to receive the following medical treatment in respect of her ovarian cyst and gynaecological condition:

2.1

A laparotomy, tumour removal, total abdominal hysterectomy and bilateral salpingo-oophorectomy, omentectomy and peritoneal sampling under general anaesthetic.

2.2

The use of reasonable physical restraint and/or sedation in order to administer the pre-operative and post-operative treatment, which is considered appropriate by the responsible attending medical practitioners.

3.

The claimants and/or the responsible attending medical practitioners, nurses and all other healthcare staff of the Claimants having responsibility for the care of the Defendant may, in the existing circumstances, lawfully:

3.1

perform the procedures set out in paragraph 2 of this declaration.

3.2

perform all pre-operative, peri-operative and post-operative medical and nursing care associated with the procedures set out in paragraph 2 of this declaration, including the administration of hormone replacement therapy which in the opinion of the responsible attending medical practitioners is considered necessary or appropriate.

3.3

undertake such further treatment and nursing care as may in the opinion of the responsible medical practitioners be considered appropriate to ensure that the defendant suffers the least distress, discomfort and invasion of her autonomy as is consistent with giving the appropriate treatment and to ensure that she retains the greatest dignity.

4.

In the event of a material change in the existing circumstances occurring, the Claimants shall inform the Official Solicitor as soon as reasonably possible and each party shall have liberty to apply for such further or other declarations or orders s may be just.

I stated that I would hand down my reasons in writing later. Those reasons appear below

The nature of H’s mental illness is that she suffers from schizophrenia and, as a result, is delusional, believing in particular that: her parents are living; she has no siblings and that she is married without children. In reality, her family circumstances are that both parents are deceased; she has a brother, but refuses to accept that she is related to him, and she is in fact divorced from her former husband, having two children from her marriage to him. They have no contact with her. Her delusions are deeply entrenched, despite clear and obvious evidence to the contrary. They have not been shifted by medication. Currently, she is not receiving anti-psychotic medication because she has refused it and she has not been subjected to compulsory medication in that respect pursuant to Part IV of the 1983 Act.

The history of H’s developing condition and the concerns of her treating doctors may be summarised as follows. She suffers from facial hirsutism (excessive facial hair). At the time of her admission under s.3 of the 1983 Act in September 2004 the medical team suspected that her condition was related to polycystic ovarian syndrome, but were unable to confirm this. H resolutely refused any investigation to establish the cause or consider the treatment of such hirsutism.

In early 2005 H complained of a distended abdomen and a palpable mass in her abdomen was diagnosed. However she refused any blood tests or further investigations despite being asked to consider a blood test and possible ultrasound. She persisted in this attitude. She was transferred to the care of her treating Consultant Psychiatrist in September 2005 when the swelling became more noticeable, but she refused to acknowledge it or to allow examination and investigation. By December 2005, she had suffered abdominal pain for several months which began to intensify; she also experienced sickness on several occasions.

At that stage, H received and complied with in-patient treatment administered by Trust B. The abdomen and tumour wee drained and later a CT scan confirmed a large ovarian tumour with strong indications that the tumour might be malignant and that H was suffering from ovarian cancer. She was advised of the CT scan findings, the diagnosis, and that she needed surgery to remove the tumour, the preferred surgical procedure being a laparotomy (surgical incision of the abdomen) an ovarian cystectomy (removal of the cystal tumour), total abdominal hysterectomy (removal of the uterus and cervix) and bi-lateral salpingo-oophorectomy (removal of both ovaries and fallopian tubes) with removal of the greater omenteum (abdominal fatty tissue) and peritoneal sampling (removal of peritoneal tissue for biopsy). These were refused.

The drainage procedure relieved the pain and distress caused by the tumour and H’s mood and demeanour improved. However the tumour re-grew rapidly, and by late December 2005, H was suffering from intermittent twinges of pain. In mid-January, though nervous, she appeared to agree to surgery. However, when admitted to surgery on 26 January she adamantly refused surgery, saying that she wished to have more children and to continue to have her periods. She refused to consent to a suggested course of more limited surgery namely the removal of the tumour and the affected ovary (“the secondary surgical procedure”).

Thereafter she has continued to suffer physical distress and pain secondary to her tumour and has refused all physical interventions despite at times being in obvious pain. She is now short of breath and has to be propped up with pillows in bed in order to assist her difficulty in breathing. She has lost an appreciable amount of weight due to the pressure of the tumour and the consequent restriction on her stomach and intestines. She is thought to be extremely worried about the tumour and the pain and distress that she is suffering, but is adamant that she does not want surgery. On 12 April, the Responsible Medical Officer: Dr A discussed the position with her, telling her that Dr L, a Consultant Psychiatrist and independent expert instructed by the Trusts considered that she lacked capacity to make decision about her gynaecological problems and that a judge would be asked to decide if she needed an operation. She replied that she did not want anyone to touch her and that the mass was “just food”. Although apparently in pain, she denied that was so and, indeed, denied that she was having to lie propped on pillows in order to ease her breathing.

I have before me a joint gynaecological report prepared by Mr D, the Consultant Gynaecologist at Trust B responsible for her care and Mr Kenney a Consultant Obstetrician and Gynaecologist in the independent sector, formerly at St Thomas’ Hospital London who is instructed as an independent expert by the Official Solicitor who represents H as her Litigation Friend.

So far as H’s diagnosis condition and prognosis are concerned, they are agreed that (a) her physical condition must be causing her appreciable discomfort which it is likely will impact on her mental health (b) she is currently experiencing breathing difficulties and cannot eat properly, that her symptoms will get worse and could well end her life whether or not the cyst is malignant. There is no feasible alternative to surgery available to manage her condition (c) H could theoretically have repeated aspirations (drainage of the cyst). However, the positive impact of such treatment was previously short-lived. Such drainage would become progressively more hazardous with a high chance of bowel damage and morbidity. The drainage cannot treat the cancer; it simply will temporary relieve its effect. (d) H could be given a strong morphine analgesic to relieve her discomfort but this would have an adverse affect on her already compromised breathing (e) It is in H’s best interests to undergo surgery to treat her abdominal condition and that a total abdominal hysterectomy, bilateral salpingo-oophorectomy and potentially peritoneal sampling would be the optimum form of treatment which should be offered as a single surgical procedure; (f) performing surgery in two stages was not recommended; (g) a diagnosis could not be offered prior to surgery and that it would be extremely difficult to place any restriction on surgery and that instead the surgeons performing the surgery should be free to do as they consider necessary at the time of surgery; (h) H’s physical and mental health are likely to improve if surgery is performed; (i) the surgical procedure will cause pain to H and she may well be distressed. Such pain can be controlled with pain relief. H is likely to require a catheter bag and intravenous drip for 2 days or so after surgery; (j) the management plan outlined by Dr A, the Consultant in Rehabilitation Psychiatry at Trust A, and Mr D is appropriate and reflects best practice. Managing H on the High Dependency Unit post surgery with a member of her treating psychiatric staff present as required will ensure that appropriate treatment can be provided to her; (k) H is unlikely to be a high risk patient with regard to anaesthesia and that the pre, per and post operative risks can be appropriately managed; (l) the removal of both ovaries would produce the onset of menopausal symptoms which could worsen H’s mental state but that this could be managed by HRT which would be the most appropriate in the form of topical cream which is applied daily; (m) H’s expressed desire to have children is unrealistic given her age; (n) it is not currently possible to say if post operative chemotherapy would be appropriate for H. A provisional view is that secondary treatment would be very difficult to administer against her wishes and is unlikely to be an appropriate course of action unless H consents; and (o) whether the cyst is benign, borderline or malignant, the correct medical intervention is the full surgery outlined at (e) above.

So far as H’s mental condition is concerned, I have reports before me both from Dr A referred to at paragraph 11(j) above and Dr Latcham, a Consultant Psychiatrist and independent expert instructed by the Trusts.

Dr A advises that H suffers from schizophrenia and has delusional beliefs. His prognosis in terms of psychiatric care is that she will continue to require high level support in the community or she will remain in a rehabilitation unit such as the home where she presently is. Dr A says that H cannot retain information presented to her in relation to her physical state and the need to remove the cyst. She consistently fails to acknowledge the nature of her illness and the impact on her wellbeing. She will reluctantly accept medication when her discomfort becomes unbearable but this is usually only after prompting from a member of staff. Dr A believes that the reason given by H for refusing surgery, namely her wish to have children, is simply an excuse to avoid the operation and that she cannot make a decision as to whether the cyst should be removed or not. She is unable to weigh the information that has been given to her to arrive at a decision about medical treatment. She has not been able to understand that surgery will remove her pain, shortness of breath and inability to eat or that it may well be required to save her life. She is unable to acknowledge that she may well have cancer. Nevertheless, he strongly believes that she is worried sick about the growth in her abdomen and the pain and distress which she currently experiences. Dr A believes that she cannot avoid thinking about it as it is evidently physically causing her clothes to tent out and resulting in her experiencing pain and discomfort which affects her daily life. He considered that the strength of her opposition to surgery is a reflection of how strongly she is worried about her condition.

Dr A does not consider that H’s psychiatric condition can be improved sufficiently within the required time-frame to allow a realistic possibility of her consenting to the proposed treatment. It is his view that H will co-operate once she has had the operation. She has co-operated with staff at the C Centre where he proposes she should stay and that she has made no attempts to leave. He proposes that when H is medically and surgically fit for discharge she will return home to recuperate. Dr A is strongly of the view that there should be a single surgical procedure. He warns that it is his belief that H will not co-operate with any treatment that she fears will be invasive, painful or result in any adverse side effects. He therefore did not believe she will comply with chemotherapy or radiotherapy willingly.

Dr Latcham and Dr A have subsequently signed a joint agreed report dated 20 April 2006 which is before me. They confirm that they both agree H lacks capacity to refuse or consent to medical treatment for her ovarian cyst and gynaecological condition and it is unlikely that she will acquire this capacity in the near future. They agree that in the event that histopathological testing shows that H is suffering from cancer, she does not have capacity to make decisions about cancer treatment, including whether to accept or refuse radiotherapy and chemotherapy, and that H will require long-term psychiatric care with a high level of support either in a rehabilitation unit or in the community. They both consider that psychotropic medication will not positively affect her capacity to consent, either to medical treatment for her cyst and gynaecological condition, or possible cancer treatment nor is it likely to reduce the stress she would probably associate with it.

They both advise that if H does not undergo surgery and continues to experience her present physical symptoms and shortness of breath, discomfort and inability to sleep properly she will become increasingly anxious and distressed. They believe that this will present a deterioration in her mental health, a possible worsening of psychotic symptoms due to stress of the tumour and a deteriorating physical condition, requiring more intensive treatment and care including medication and a possible return to the acute unit. Both express the view that it would be in H’s best interests to undergo a single surgical procedure.

Both consider that H’s quality of life and mental health mood are likely to improve when the surgery is undertaken as a single procedure. They are agreed that undergoing the surgical procedure proposed is unlikely to cause H distress or impact on her mental health or mood in any significant way. She is likely to experience transient anxiety associated with understandable fear of anaesthetic and surgical procedure, which they describe as a normal response. They anticipate that she may experience some distress at the acute menopausal symptoms which could be caused, but believe that this could be minimised by the use of hormone replacement therapy (HRT). They do not consider H’s desire to have children to be a genuinely held desire. She will thus not be caused lasting distress if she undergoes the surgery proposed. They conclude by stating that it is not possible at this stage to advise whether or not oncological treatment regime consisting of radiotherapy and /or chemotherapy will be appropriate and in H’s best interests. This should only be addressed once the histology, staging of the tumour and prognosis have been confirmed. Both consider it unlikely that H would be agreeable or compliant to such treatment regimes and that it would be extremely difficult to enforce this treatment.

So far as after treatment is concerned, I have before me a statement dated 27 April 2006 from Dr I, a Consultant Clinical Oncologist at Trust B. He too regards it as preferable for H to undergo the full surgical procedure recommended. If, as is likely, the cyst is cancerous, there is a possibility that no further treatment will be required if it is completely removed. If this is not so, then secondary treatment by some form of chemotherapy will be desirable. He acknowledges the difficulty with regard to offering secondary treatment to a patient who is unwilling to accept it, but considers none the less that surgical intervention is the appropriate course in the patient’s present condition. The assessment of Mr Kenney is that without surgery H is unlikely to survive beyond six months and could well die sooner in any event.

I also have before me the report of Dr E, a Consultant Anaesthetist at Trust B who has been unable to examine H because of her refusal to co-operate. However, he states from his assessment on the basis of her medical records and the absence of any history of systemic disease, or relevant surgery or any history of allergies or drugs that no particular complications are expected. He does not demur from the view of Mr D and Mr Kenney that H is not likely to be a high risk patient and that any pre, per and post operative risk can be appropriately managed.

There is thus essentially a unanimity of view between the medical experts concerned with the care of H that the surgery proposed is in her best interests and should be performed without delay. Similarly, all are agreed that she lacks capacity to make decisions about her medical treatment for her ovarian cyst and gynaecological condition. Further, the Official Solicitor has proffered to the court a long and careful statement accepting these opinions. He also believes it to be in the best interest of H that if , as expected, she continues to withhold consent to operative treatment, she should be sedated for that purpose and that, if necessary, there should be use of reasonable physical restraint in order to administer pre and post-operative treatment.

The law which I am obliged to apply in deciding whether or not to make the declaration sought is clear. The legality of medical treatment relies upon on the existence of consent or other lawful authority. No medical treatment may be given without the consent of an adult patient who is competent to make decisions about the same. There is a presumption of competency in that respect even in the case of a patient. However, it is rebuttable.

The criteria for assessing capacity having been clearly set out in Re C [1994] 1 WLR 290 at 295 by Thorpe J and Re MB [1997] 2 FLR 246 at 437 by Butler-Sloss LJ. A person lacks capacity if some impairment or disturbance of mental functioning renders that person unable to make a decision whether to consent or refuse treatment. Such inability occurs when either the patient is unable to comprehend and retain the material relevant to the decision, especially the likely consequences of having or not having the treatment in question, or where the patient is unable to use the information and weigh it in the balance as part of the process at arriving at a decision. In this respect a compulsive disorder or phobia may prevent the patient’s decision from being a true one, particularly if conditioned by some obsessional belief or feeling which so distorts the judgment as to render the decision invalid.

Pausing there, I can say that I am quite satisfied that, apart from her general lack of grasp on reality as to her history and surrounding circumstances, the misplaced belief that she has no children and the assertion that her objection to operative procedure is based on a desire to be able to bear children in the future, is delusional. Whether consciously or sub-consciously it is advanced and a rationalisation for an objection to an operative procedure to which she is fearful. At the same time, it is clear from a number of observations that she does not appreciate the seriousness of her condition and the sense of threat to life which it presents if unalleviated by such surgery. I am thus satisfied that H lacks capacity to makes decisions about her medical treatment for her ovarian cyst and gynaecological condition.

That being so, the question is whether or not I am satisfied, as the doctors are, that it is in H’s best interests to undergo the surgery. In this respect I bear in mind the positive (though not absolute) obligation imposed by Article 2 of the European Convention on Human Rights to give life-sustaining treatment where responsible medical opinion is of the view that such treatment is in the patient’s best interests and the observation of Munby J approved in R (Burke) v General Medical Council [2005] EWCA 1003 at paragraph 61;

“There is a very strong presumption in favour of taking all steps to prolong life, and save in exceptional circumstances, or where the patient is dying, the best interests of the patient will normally require such steps to be taken. In case of doubt, that doubt falls to be resolved in favour of the preservation of life. But the obligation is not absolute. Important as the sanctity of life is, it may have to take second place to human dignity…”

In English law “best interest” are not confined to best medical interests and the court is not tied to the clinical assessment of what is in a patient’s best interests, being itself obliged to take into account a broad spectrum of medical, social, emotional and welfare issues before reaching its own conclusion on the basis of a careful consideration of the evidence.

When considering those best interests the court assesses the advantages and disadvantages of various treatment and management options, the viability of each such option, and its likely effect on the patient an the enjoyment of his or her life. Any likely benefit of the treatment has to be balanced and considered in the light of any additional suffering such treatment might entail.

Finally, in the case of a patient who lacks capacity to consent, it is lawful to impose treatment despite the absence of consent and even to overcome non-co-operation of a resisting patient by sedation and a moderate and reasonable use of restraint in order to achieve it if the treatment is in the patient’s best interests. The lawfulness of such restraint has to be carefully considered when assessing the balance of benefit and disadvantage in the giving of the proposed medical treatment and where the best interest of the patient truly lies. A patient such as H has, like any other, the right not to be subjected to degrading treatment under Article 3 of the European Convention on Human Rights.

The advantages and disadvantages in the case of H all emerge from the evidence before me which I have carefully considered. H’s present condition is causing her substantial discomfort, occasional pain, breathing difficulties and an inability to eat properly. These symptoms are worsening and are likely to end her life whether or not the cyst is malignant. The present and worsening physical condition is causing her increased anxiety and low mood. She is worried and seems to understand that she is gravely ill, whilst burying her head in the sand in relation to its effects and the effectively certain outcome if surgery is not undertaken.

If her position is to be alleviated, there is no feasible alternative to surgery. Without it the symptoms I have described will become worse, she will be come increasingly anxious and distressed, her mental state will deteriorate with the likely worsening of her florid psychotic symptoms and she will require more intensive treatment and care including medication and a possible return to the acute psychiatric unit which would disrupt her current relationships with staff at the home where she is situated.

If she undergoes the preferred surgical procedure, which is the optimum treatment recommended to any patient with her presentation and symptoms, the benefits will be as follows. If the cyst is benign, its removal will relieve her physical condition, and no further treatment will be necessary. Her discomfort and distress will cease. If, as seems likely, the cyst is malignant, the preferred surgical procedure is essential. Depending on the type and stage of the cancer, it may be curative. Even if it is not curative it will offer H a better chance for long life and better quality than if it is not performed. Her quality of life, mental health, and mood are likely to improve in any event following such surgery and, whether the appropriate future treatment is chemotherapy or palliative care, her life expectancy will be increased.

So far as the negative aspects of surgery are concerned, H will experience some transient anxiety associated with the understandable fear of anaesthetic and surgical procedure. She is unlikely to suffer significant distress or impact on her mental health by undergoing the surgery. Although she is bound to be in pain and to some extent distress post-operatively such pain and distress can be effectively controlled with pain relief. The urinary catheter and intravenous infusion drip which will be required for two days post-operatively is of no particular discomfort. H may experience transient distress at the loss of her ability to have children (if she is fertile) however, because of the view of the psychiatrist that her stated desires to have more children are defensive rather than genuine such distress is not likely to be substantial or lasting. Finally, although loss of both ovaries may well produce sudden onset of menopausal symptoms which, unalleviated, could worsen H’s mental state, they can be managed by HRT administered by way of topical cream daily.

Finally, it is not possible at this stage to say if post-operative chemotherapy will be appropriate for H or what her attitude would be towards it. The secondary treatment and options would have to be considered by a clinical oncologist in the light of the histopathology. Mr D and Mr Kenney consider that it would be difficult to administer secondary treatment against H’s wishes and that it is unlikely to be an appropriate course of action. Thus, if the tumour is malignant and the cancer not wholly removed at operation and H proves resistant to a particular regime recommended, and if in those circumstances the doctors nonetheless think that secondary treatment is in her best interests, a return to court to resolve the issue may be appropriate.

In the light of the views currently expressed by Mr D and MR Kenney in that last respect (see paragraph 11 above), while I have been prepared to grant a declaration in the terms set out at paragraph 3 above, I should make clear that I do not consider that forcible administration of chemotherapy to H contrary to her consent or stated wishes is covered by the terms of the declaration granted.