An NHS Trust v The Patient

This is an application to the Court of Protection for a best interests decision in relation to a man who clearly has a pressing need for surgery for cancer. He lacks capacity to give or withhold any informed consent, but is personally resistant to having an operation.

The essential factual background is as follows. The patient is now aged 65. He has a lifelong lack of capacity. He has learning difficulties and also is on the autistic spectrum. For about 40 years he has lived mainly in a care home together with a very small number of other residents. I say mainly in the care home, for he does also go regularly to stay for periods of about two weeks with his sister to whom I will later refer.

During this summer his carers observed an obvious lump in the vicinity of his right breast. As a result, he has now been examined several times by doctors, including the consultant oncoplastic breast surgeon who proposes to perform the surgery, and he has also had an ultrasound scan of his breast and the lump. The results of those examinations and that scan indicate that it is highly likely that the lump is indeed cancerous. However, because of the patient’s resistance to surgical or similar intervention, no biopsy has yet been performed that would, or might, put the diagnosis beyond doubt. I am quite satisfied, however, on the basis of the written evidence in this case that it is highly likely that the patient does have cancer in the area of his breast.

There have been a number of discussions with the patient, both by the consultant surgeon and by other professional people, including his own mental health carer, in order to try to assist him to understand his medical condition and the gravity of it, and to assist him to make his own informed decision to undergo surgery. However, his constantly repeated position is that he has not got cancer; whatever it is that is wrong with him will be cured or controlled by medication; and an operation is not necessary.

So the relevant NHS Trust for the area in which the patient lives have commenced the present application to the Court of Protection. The Official Solicitor consented to act, and does act, as his litigation friend in these proceedings. The patient has never been married and does not have any children. His only close relative appears to be his sister. The relationship between them appears to be a very close one. His sister is devoted to him and, as I have mentioned, he regularly stays for periods of up to about two weeks at her own home. She herself has not been made a party to these proceedings, but is very well aware of them. She wrote a letter dated 8 September 2014 in which she says that since their late mother died “I have taken the role of his mother and sister and care for him as much as I can”. She says that he has experienced a lot of his life in psychiatric hospitals and has come to dislike any medical check-ups etc. She says that he is very scared and will never agree to an operation. She comments that “in his world, it happens to everyone else, except him”. She, however, makes quite plain that she is very strongly supportive of the proposed operation taking place and, indeed, has expressed concern that it has not taken place already.

I mention that at my request the representative of the Official Solicitor at court here today telephoned the sister this very day. She confirmed on the telephone that she is well aware that the hearing is taking place here today. She said that her brother is “terrified” of having an operation, but that she herself has told him on numerous occasions that he needs one. She said that she is very close to her brother. She said that the thought of something happening against his will is awful, “but we are talking about his life and [she] felt that it was in his best interests for it to happen. He won’t live for another 20 years if he doesn’t have the operation and he could if he does.” So she continues to express her very strong support for the proposed operation. As I have said, she appears to be his only close relative.

I need first to consider the question of capacity. The patient’s own mental health specialist, who has known him very well for 15 or more years, has had many discussions with him about his condition and the proposed operation. He reports that the patient “was consistent in stating that he wanted to keep the tumour with him for ‘life’, he does not believe his condition will deteriorate. He does not believe that over time it is likely to spread. He appears to believe that the oral medication he takes is sufficient to contain the growth of the tumour.” Further on in his report he says: “He told me that his ‘lump’ was ‘ok’, that he was not in pain and whilst nothing was worrying him he did not want an operation.”

Within the context of, and for the purposes of, these proceedings, the patient has been examined and assessed by an independently instructed psychiatrist, Dr Muhammad Iqbal. He reports that the patient has mild learning disability and autism. These conditions have lasted since birth. In his opinion, the patient lacks capacity to consent to, or refuse, surgical removal of the right breast tumour and axillary lymph nodes under general anaesthetic plus post-operative care as appropriate. In the opinion of the psychiatrist, this proposed treatment using the minimum necessary force is in the patient’s best interests. He says: “The patient does not have any understanding of what breast cancer is, or the seriousness of his illness. He does not have the capacity to understand the available treatment options, or the consequences if his breast cancer remains untreated. He is adamant he does not want surgery, and is not able to tell why.” A little later he expresses the opinion that the patient is unable to use or weigh relevant information as part of decision-making. He says: “He does not want to listen to the information and becomes agitated if information is provided. He is, therefore, unable to weigh or use the information to make a decision.”

Overall Dr Iqbal expresses the opinion that: “The patient has two disabling conditions, namely learning disabilities (mental retardation) and autism. The combination of the two conditions is particularly disabling. He does not have enough intellectual ability due to his learning disabilities; and his thinking is rigid due to his autism. In addition, I suspect he may also have a fear/phobia, but he has not revealed his thoughts.” The psychiatrist repeats that these conditions are lifelong conditions, present since birth, and there is currently no known cure for them.

Based on that evidence it is quite clear to me, and I unhesitatingly declare, that the patient does lack capacity, first, to litigate these proceedings; and secondly, to make decisions as to appropriate treatment for a suspected carcinoma to his right breast, and specifically whether to consent to, or refuse, surgical removal of a tumour in his right breast and axillary lymph nodes under general anaesthetic, plus postoperative care, as appropriate.

As I have reached that conclusion and made that declaration as to lack of capacity, it now falls to the court to make a best interests decision on behalf of the patient as to whether or not the proposed surgery should take place. At this point, it is, I think, right that I should stress and record that the Official Solicitor, although acting with his customary conscientiousness as litigation friend, has made a decision in this particular case not to instruct or obtain his own independent expert evidence or opinion. The reason for that essentially is that the evidence that has already been provided by the applicant NHS Trust is so clear and, frankly, so one way that it is not necessary or justifiable for the Official Solicitor to obtain any second or independent opinion of his own. Further, of course, if the Official Solicitor were to have instructed some expert to examine the patient for the purposes of giving a second opinion, that might have greatly heightened the stress and distress to him. So in this particular case the Official Solicitor, who completely supports the proposed order and declaration, has based his own decision-making upon the material that has already been provided by the applicant Trust to which I will now refer.

The evidence is essentially that of the consultant oncoplastic breast surgeon, although she in turn draws from the views of colleagues. With regard specifically to any risk from anaesthesia itself, there is a brief email report from a consultant anaesthetist at the relevant hospital who says that no pre-assessment is possible in the circumstances of this case. Nevertheless, the anaesthetist says: “I think [any risk] is minimal as the patient has no other health issues and I believe is physically not impaired i.e. has a normal exercise tolerance.”

The consultant surgeon explains the examinations that she has already performed upon the patient and the ultrasound scan which took place in July. As she explains, she was unable to perform a biopsy which might have been conclusive as to whether or not the lump is cancerous. She describes how initially endocrine treatment was prescribed by way of tablets. That, however, is a treatment which will merely “hold off the disease for the time being but is not a good long term option”. It is because he does currently take those endocrine tablets that the patient himself has convinced himself that the tablets will cure, or at any rate control, whatever it is that is wrong with him and he does not need surgery. The oncologist says in her written statement at paragraph 9: “It is the unanimous view of the clinical team that the best practice treatment for the patient would be to have the tumour surgically removed. The patient does not agree to this course of treatment and has remained adamant throughout that he does not want surgery.”

The consultant describes how, despite the endocrine treatment, a further ultrasound scan carried out on 17^th November 2014 (that is, about four months after the previous one) has confirmed that the tumour has in fact enlarged and is now about 16 x 15 x 12 mm whereas earlier it was about 15 x 12 x 12 mm. So the endocrine treatment does not appear even to be controlling the progression of the disease. She describes at paragraph 14 the surgery that she proposes to undertake. This would involve the removal of the right breast and axillary lymph nodes under general anaesthetic. I should elaborate that a little. I have been told in court today that the actual decision as to whether or not, or how invasively, to remove lymph nodes would only finally be taken during the course of the operation after a biopsy had been performed once the patient had been anaesthetised. It may be (I stress “may”) that a decision may be taken that it is not necessary surgically to remove axillary lymph nodes, but certainly that is what is currently contemplated.

The consultant says that if this surgery is performed in the near future, there is approximately an 85 to 90% chance that she could remove all the cancer from the patient. She says: “Although it is difficult to put a percentage on life expectancy when dealing with cancer, his life expectancy will be greatest if we treated his cancer as far as possible along accepted pathways which include the proposed surgery.” In paragraph 16 of her report she addresses the possible risks from the proposed surgery. She says that the risk of complications from the anaesthesia is extremely low and approximately 1%. She says that those risks can and will be minimised by careful monitoring by an anaesthetist and the care team. There are risks of infection which occur in about 6% of breast surgery cases, but generally respond to a course of antibiotics. There is a risk of bleeding which would require a return to the theatre. That occurs in about 1% of cases and she says that they would carry out very careful haemostasis to reduce that risk. She says that if they do have to remove the axillary lymph nodes, that can cause swelling of the arm, known as lymphoedema, and this occurs in about 10 to 15% of people after axillary clearance. If it were to occur, then the patient and his carers would need to be particularly careful with the handling of the arm until it had resolved. The surgeon says that there is likely to be some postoperative pain in the short term, but that that can be controlled by suitable analgesics.

The surgeon expresses the following overall opinion: “Overall, on balance, the risks of not having surgery far outweigh the risks of having surgery. If the patient does not have surgery it is very likely that he will suffer greatly from his cancer which may ultimately shorten his life expectancy and lead to an early death.” She elaborates on those risks of not carrying out the proposed treatment in paragraph 17 of her report. She says that if he does not have surgery “it is my clinical opinion that his cancer would over time become unresponsive to endocrine treatment and then progress, with a chance of spreading to other areas of his body. I estimate the chance of the tumour progressing within the next 18 to 24 months to be greater than 50% with a consequent chance of distant spread. If this were to happen this would be extremely distressing for the patient and would probably make him very unwell. Progression of disease can result in ulceration of the skin over the chest with subsequent bleeding and infection, enlargement of lymph nodes in the axillary and neck areas which can cause pain and lymphoedema. Spread to more distant areas can result in a number of symptoms such as weight loss, malaise, abdominal and/or bone pain and headaches, depending on areas affected. It is also likely to seriously affect his mental health.” She expresses overall: “It is in my view very much in his best interests to have surgery to remove his breast lump and follow up treatment as required.”

With regard to time frame, the surgeon says that “current medical research suggests that the prognosis for a patient will be worse following the non-treatment of a malignancy within three months”. Indeed, in his case it is already significantly over three months since this lump was first observed and has, indeed, been the subject of medical investigation. She says that the proposed operation should be performed as soon as possible and in any event by about the end of December 2014. She says: “Every day beyond this window that the patient does not receive surgery increases the risk of the cancer spreading and also the operation becoming more difficult.”

In the light of that evidence, which frankly speaks for itself, it is crystal clear that it is overwhelmingly in the best interests of this gentleman to undergo this surgery. The risks are low and manageable. The prospect of a successful outcome is high, namely 85 to 90%. The risk of serious medical deterioration and probably an accelerated death if the operation does not take place is very high, being greater than 50%. But merely to say that it is overwhelmingly in his best interests that the operation should take place is not, of course, the end of the matter in a situation like this. A very serious issue arises in this and similar cases as to sensitive, humane and proportionate management of the process. As I have explained, this gentleman is very resistant indeed to the very idea of having any kind of operation. Indeed, it is reported that on one of his visits to the hospital he lashed out at the surgeon. In the telephone conversation with the sister this very day, the sister expressed the view that if he had any kind of forewarning of what was planned, her brother would “go berserk”.

The consultant surgeon and the applicant NHS Trust and the patient’s carers in the care home are very alive to this difficult problem of management. At paragraph 21 of her statement the surgeon says: “As the patient becomes so distressed upon examination and at the mention of surgery, it is likely that he would need to be restrained before the surgery. This restraint would be given by way of chemical restraint and possibly also physical restraint. The current plan is to covertly give the patient a sedative such as diazepam with his breakfast. This would serve to minimise any risk of the patient injuring himself by lashing out when he is being transferred to the hospital. Other measures which will be taken to protect the patient’s safety include him being accompanied by his carers from the home who he is already familiar with, and also keeping the number of cases on the operating list smaller than usual to allow us to be flexible in timing and to attend to the patient as soon as he is in the hospital and in a position to have surgery. To avoid distress we will try to give him a further oral sedative when he arrives and will not attempt to remove his clothes or carry out any of our normal checks of blood pressure or heart rate prior to him being put under anaesthetic.”

As his sister commented today, as I have already quoted, “the thought of something happening against his will is awful …” Many people might, indeed, recoil at the passage that I have just read from the surgeon’s statement and the proposal that this disadvantaged gentleman should be given covert sedatives with his breakfast in the care home in which he lives. But, in my view, this is a situation in which, to put it bluntly, the ends justify the means, and it is in his overall best interests that the minimal possible, but nevertheless, if necessary, some force is used to enable him to be taken without risk of harm to himself to the hospital for this surgery to take place.

On the basis of all that evidence and with the complete concurrence of the Official Solicitor, I am satisfied in this case that I should make declarations, as I do, first, that it is in the patient’s best interests to make the following orders without delay; in other words, these proceedings should not be further protracted. Second, it is lawful and in his best interests to undergo surgery as soon as reasonably practicable to remove a tumour in his right breast and axillary lymph nodes, to be performed under general anaesthetic, and to receive post-operative care as appropriate. Third, that to the extent that it is necessary to do so in order safely to convey the patient to hospital and/or safely to perform that surgery, it is lawful and in his best interests to sedate him (including covertly) and/or use physical restraint, provided that the minimum possible force is used and only as a last resort.

There is, however, a further and an additional very important aspect to the pre-operative management. My own view is that even in the case of incapacitous or very incapacitous patients (leaving aside those who lack consciousness) it remains extremely important in any civilised society that they are not subjected to anaesthesia or invasive surgery without, as a minimum, being informed in sensitive and appropriate language as to what is about to be done to them before it is done. For that reason, I propose to add to the declaration the following important rider, which has been agreed today both by the NHS Trust and by the Official Solicitor after due enquiries of the professionals, namely: “The patient must be told in clear but sensitive terms before he is anaesthetised that he is going to be anaesthetised and that the operation is going to be performed”. It was in relation to that that his sister predicted that he might at that point “go berserk”. I make plain that so far as the court is concerned, this step of informing him in clear but sensitive terms as to what is going to happen does not need to take place very long before the actual anaesthesia, and may take place after an initial process of sedation, in particular by any covert sedation with his breakfast. So I regard it as acceptable that he has already been sedated to a degree before he is informed, and the hope must be that provided he has been sedated he will not in fact go berserk in the way that his sister predicts. But even at the risk of his going berserk, I insist that an integral part of the order (and this is mandatory) is that he must be informed in clear but sensitive terms of what is going to happen to him before it does actually happen.

There is one other aspect of this case to which I should now refer. I have conducted this hearing entirely in public. There has, as it happens, been a representative of the Press present throughout, and he has been supplied with some of the documents and material in this case. It is obviously necessary and appropriate in this case that there should be a reporting restriction order in essentially conventional terms to prevent disclosing the identity of the patient or where he lives or the names of those treating him. That is necessary in order to respect and protect his confidentiality as a patient. But in this case a concern has rightly been raised that if there was any reporting at all, even anonymously, of this hearing and this case prior to the proposed operation taking place, it might (I stress only might) alert the patient himself to what has been decided and what is going to happen. That could be profoundly stressful and distressing for him and could, indeed, frankly, sabotage the whole plan, to his long term serious detriment.

For those reasons I propose adding to the reporting restriction in this case a particular further restriction as follows: “There shall be no reporting of these proceedings whatsoever prior to notification by the applicants that the patient has been operated upon pursuant to this order or that a decision has been taken by the applicants not to proceed with the operation”. But that is all on the following condition that: “The applicants shall file, serve and issue a statement to the Press Association Copy Direct Service within 72 hours of the operation being performed, to confirm that the operation has taken place; alternatively, if a decision is taken not to operate, the applicants shall within 72 hours of that decision file, serve and issue a statement in the same way, explaining that that decision has been taken together with a summary of the reasons why not.”

I very zealously guard and protect the Convention right to freedom of expression and it is, indeed, very rare that I myself would ever contemplate an embargo of that kind upon any immediate reporting (even if heavily anonymised) of proceedings in court before me. But it does seem to me that on the particular facts of this case, and for the reasons which I have given, such a short term embargo is necessary, proportionate and justifiable. As I have said, the surgeon hopes to perform this operation by about the end of December, although it may be that because of the Christmas break and the patient’s own Christmas holiday with his sister that will be further delayed by a few days into January. At all events, the duration of the embargo that I am imposing will only be of the order of about three weeks and that seems to me eminently justifiable in the overall interests of this needy patient.