Strand, London, WC2A 2LL |
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B e f o r e :
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SURREY AND SUSSEX HEALTHCARE NHS TRUST |
Applicant |
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- and - |
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MS AB (By her litigation friend the Official Solicitor) |
Respondent |
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Mr Conrad Hallin (instructed by The Official Solicitor) for the Defendant
Hearing dates: 21 and 24 July 2015
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Crown Copyright ©
Mr Justice Keehan :
Introduction
Background
Law
i) that Ms AB lacked capacity to make a decision about the medical treatment and surgery; and
ii) that in those circumstances the court should make a best interests decision and grant permission for Ms AB to undergo an above knee amputation of her left leg.
1. The principles
(1) The following principles apply for the purposes of this Act.
(2) A person must be assumed to have capacity unless it is established that he lacks capacity.
(3) A person is not to be treated as unable to make a decision unless all practicable steps to help him to do so have been taken without success.
(4) A person is not to be treated as unable to make a decision merely because he makes an unwise decision.
(5) An act done, or decision made, under this Act for or on behalf of a person who lacks capacity must be done, or made, in his best interests.
(6) Before the act is done, or the decision is made, regard must be had to whether the purpose for which it is needed can be as effectively achieved in a way that is less restrictive of the person's rights and freedom of action.
2. People who lack capacity
(1) For the purposes of this Act, a person lacks capacity in relation to a matter if at the material time he is unable to make a decision for himself in relation to the matter because of an impairment of, or a disturbance in the functioning of, the mind or brain.
(2) It does not matter whether the impairment or disturbance is permanent or temporary.
(3) A lack of capacity cannot be established merely by reference to—
(a) a person's age or appearance, or
(b) a condition of his, or an aspect of his behaviour, which might lead others to make unjustified assumptions about his capacity.
(4) In proceedings under this Act or any other enactment, any question whether a person lacks capacity within the meaning of this Act must be decided on the balance of probabilities.
(5) No power which a person ("D") may exercise under this Act—
(a) in relation to a person who lacks capacity, or
(b) where D reasonably thinks that a person lacks capacity,
is exercisable in relation to a person under 16.
(6) Subsection (5) is subject to section 18(3).
3. Inability to make decisions
(1) For the purposes of section 2, a person is unable to make a decision for himself if he is unable—
(a) to understand the information relevant to the decision,
(b) to retain that information,
(c) to use or weigh that information as part of the process of making the decision, or
(d) to communicate his decision (whether by talking, using sign language or any other means).
(2) A person is not to be regarded as unable to understand the information relevant to a decision if he is able to understand an explanation of it given to him in a way that is appropriate to his circumstances (using simple language, visual aids or any other means).
(3) The fact that a person is able to retain the information relevant to a decision for a short period only does not prevent him from being regarded as able to make the decision.
(4) The information relevant to a decision includes information about the reasonably foreseeable consequences of—
(a) deciding one way or another, or
(b) failing to make the decision
4. Best interests
(1) In determining for the purposes of this Act what is in a person's best interests, the person making the determination must not make it merely on the basis of—
(a) the person's age or appearance, or
(b) a condition of his, or an aspect of his behaviour, which might lead others to make unjustified assumptions about what might be in his best interests.
(2) The person making the determination must consider all the relevant circumstances and, in particular, take the following steps.
(3) He must consider—
(a) whether it is likely that the person will at some time have capacity in relation to the matter in question, and
(b) if it appears likely that he will, when that is likely to be.
(4) He must, so far as reasonably practicable, permit and encourage the person to participate, or to improve his ability to participate, as fully as possible in any act done for him and any decision affecting him.
(5) Where the determination relates to life-sustaining treatment he must not, in considering whether the treatment is in the best interests of the person concerned, be motivated by a desire to bring about his death.
(6) He must consider, so far as is reasonably ascertainable—
(a) the person's past and present wishes and feelings (and, in particular, any relevant written statement made by him when he had capacity),
(b) the beliefs and values that would be likely to influence his decision if he had capacity, and
(c) the other factors that he would be likely to consider if he were able to do so.
(7) He must take into account, if it is practicable and appropriate to consult them, the views of—
(a) anyone named by the person as someone to be consulted on the matter in question or on matters of that kind,
(b) anyone engaged in caring for the person or interested in his welfare,
(c) any donee of a lasting power of attorney granted by the person, and
(d) any deputy appointed for the person by the court,
as to what would be in the person's best interests and, in particular, as to the matters mentioned in subsection (6).
15. Power to make declarations
(1) The court may make declarations as to—
(a) whether a person has or lacks capacity to make a decision specified in the declaration;
(b) whether a person has or lacks capacity to make decisions on such matters as are described in the declaration;
(c) the lawfulness or otherwise of any act done, or yet to be done, in relation to that person.
(2)"Act" includes an omission and a course of conduct.
16. Powers to make decisions and appoint deputies: general
(1) This section applies if a person ("P") lacks capacity in relation to a matter or matters concerning—
(a) P's personal welfare, or
(b) P's property and affairs.
(2) The court may—
(a) by making an order, make the decision or decisions on P's behalf in relation to the matter or matters, or
(b) appoint a person (a "deputy") to make decisions on P's behalf in relation to the matter or matters.
(3) The powers of the court under this section are subject to the provisions of this Act and, in particular, to sections 1 (the principles) and 4 (best interests).
(4) When deciding whether it is in P's best interests to appoint a deputy, the court must have regard (in addition to the matters mentioned in section 4) to the principles that—
(a) a decision by the court is to be preferred to the appointment of a deputy to make a decision, and
(b) the powers conferred on a deputy should be as limited in scope and duration as is reasonably practicable in the circumstances.
(5) The court may make such further orders or give such directions, and confer on a deputy such powers or impose on him such duties, as it thinks necessary or expedient for giving effect to, or otherwise in connection with, an order or appointment made by it under subsection (2).
(6) Without prejudice to section 4, the court may make the order, give the directions or make the appointment on such terms as it considers are in P's best interests, even though no application is before the court for an order, directions or an appointment on those terms.
(7) An order of the court may be varied or discharged by a subsequent order.
(8) The court may, in particular, revoke the appointment of a deputy or vary the powers conferred on him if it is satisfied that the deputy—
(a) has behaved, or is behaving, in a way that contravenes the authority conferred on him by the court or is not in P's best interests, or
(b) proposes to behave in a way that would contravene that authority or would not be in P's best interests.
"the fundamental principle is the principle of the sanctity of human life… But this principle, fundamental though it is, is not absolute … there is no absolute rule that the patient's life must be prolonged by such treatment or care, if available, regardless of the circumstances.
First, it is established that the principle of self-determination requires that respect must be given to the wishes of the patient … and, for present purposes perhaps more important, the doctor's duty to act in the best interests of his patient must likewise be qualified.
But in many cases not only may the patient be in no condition to be able to say whether or not he consents to the relevant treatment or care, but also he may have given no prior indication of his wishes with regard to it. … But the court cannot give its consent on behalf of an adult patient who is incapable of himself deciding whether or not to consent to treatment. I am of the opinion that there is nevertheless no absolute obligation upon the doctor who has the patient in his care to prolong his life, regardless of the circumstances. Indeed, it would be most startling, and could lead to the most adverse and cruel effects upon the patient, if any such absolute rule was held to exist. It is scarcely consistent with the primacy given to the principle of self-determination in those cases in which the patient of sound mind has declined to give his consent, that the law should provide no means of enabling treatment to be withheld in appropriate circumstances where the patient is in no condition to indicate, if that was his wish, that he did not consent to it."
"It is axiomatic that people with disabilities, both mental and physical, have the same human rights as the rest of the human race. It may be that those rights have sometimes to be limited or restricted because of their disabilities, but the starting point should be the same as that for everyone else. This flows inexorably from the universal character of human rights, founded on the inherent dignity of all human beings, and is confirmed in the United Nations Convention on the Rights of Persons with Disabilities."
Article 3
No one shall be subject to torture or to inhuman or degrading treatment or punishment
Article 8
1. Everyone has the right to respect for his private and family life, his home and his correspondence.
2. There shall be no interference by a public authority with the exercise of this right except such as is in accordance with the law and is necessary in a democratic society in the interests of national security, public safety or the economic well-being of the country, for the prevention of disorder or crime, for the protection of health or morals, or for the protection of the rights and freedoms of others.
"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."
"In deciding what is best … the judge must have regard to … welfare as the paramount consideration. That embraces issues far wider than the medical. Indeed it would be undesirable and probably impossible to set bounds to what is relevant to a welfare determination."
All reasonable steps which are in the person's best interests should be taken to prolong their life. There will be a limited number of cases where treatment is futile, overly burdensome to the patient or where there is no prospect of recovery. In circumstances such as these, it may be that an assessment of best interests leads to the conclusion that it would be in the best interests of the patient to withdraw or withhold life-sustaining treatment, even if this may result in the person's death. The decision-maker must make a decision based on the best interests of the person who lacks capacity. They must not be motivated by a desire to bring about the person's death for whatever reason, even if this is from a sense of compassion. Healthcare and social care staff should also refer to relevant professional guidance when making decisions regarding life-sustaining treatment.
"there can be no doubt in my mind that the evaluation of best interests is akin to a welfare appraisal.…Pending the enactment of a checklist or other statutory direction it seems to me that the first instance judge with the responsibility to make an evaluation of the best interests of a claimant lacking capacity should draw up a balance sheet. The first entry should be of any factor or factors of actual benefit… Then on the other sheet the judge should write any counterbalancing dis-benefits to the applicant. An obvious instance in this case would be the apprehension, the risk and discomfort inherent in the operation. Then the judge should enter on each sheet the potential gains and losses in each instance making some estimate of the extent of the possibility that the gain or loss might accrue. At the end of that exercise the judge should be better placed to strike a balance between the sum of the certain and possible gains against the sum of certain and possible losses. Obviously, only if the account is in relatively significant credit will the judge conclude that the application is likely to advance the best interests of the claimant."
Evidence
"On mental status examination on 19 May 2015, Ms AB was very irritable, hostile and suspicious. Her mood was moderately depressed; she had delusional beliefs about the cause of her ulcer, being convinced it was due to the actions (positive actions, not negligence) of the surgeons who were treating her. She had no insight into her physical or psychological symptoms.
She did appear confused at times but overall there was no clear evidence of any significant cognitive impairment warranting investigations for dementia. At that time, she did not cooperate with any formal cognitive assessment.
As mentioned earlier, the treatment with a powerful antidepressant and anti-psychotic medication was successful in improving her mood but there was no real improvement in the psychotic symptoms and her delusional beliefs have continued.
I diagnosed Ms AB as suffering from a moderate to severe depressive episode with psychotic symptoms. It is also possible that Ms AB was suffering from a delusional disorder prior to the emergence of the depressive episode."
And later he said:
"It is possible that removing the source of infection could dramatically improve the functions of her brain and there could be a dramatic improvement in the cognitive functions as well as her mood. It is very unlikely that there will be a change in her psychotic symptoms, especially the entrenched delusional beliefs about her surgeons.
It is also possible that she could, after the amputation, suffer from an acute stress reaction, making her more depressed with worsening psychotic symptoms. However, the acute stress reaction and any depressive or psychotic disorder can be treated with appropriate psychiatric medications.
Given that she has responded well to these medications in the past, this suggests that she is likely to do so again in the future. It is likely that the depressive symptoms will respond better than the psychotic symptoms.
According to the nursing staff Ms AB is now suffering from increasing physical problems including recurrent falls and episodes of altered consciousness and confusion. If the infection spreads further upwards and affects the nerves not damaged by diabetes, she is likely to suffer excruciating pain which is unlikely to respond to analgesics.
In spite of her non-healing ulcer, Ms AB is able to walk with a frame at present. With the proposed treatment by above-knee amputation, she is likely to remain chair bound for a long period of time, if she receives rehabilitation. Given her history of non-cooperativeness with many of the medical staff, it is very unlikely that she will engage in rehabilitative efforts by the physiotherapist and occupational therapist. It is possible under those circumstances that she will need care in a highly specialist nursing home registered for caring for people with mental disorders for the rest of her life."
"There are in my view two treatment options:-
a) Amputation of the left leg above the knee would certainly be my preferred treatment measure, were it not for her psychiatric condition. She has told us that she does not want amputation; and it is plain that this would have a serious impact on her, just as feared by the IMCA.
I have discussed the case with another Consultant Vascular Surgeon, Mr R, who is in agreement with me. Major amputation would remove the source of infection and the dead tissue, which would significantly improve the quality of her life. On the other hand, the risks of undergoing such surgery may be summarised as follows; the possibility of wound infection or dehiscence, a need for further surgery, and anaesthetic and cardiopulmonary risks associated with the procedure – risks which are augmented by non-compliance with treatment. It is anticipated that she may interfere with wound integrity and may not comply with antibiotic treatment, insulin administration and/or physiotherapy after the operation. There is, of course also a risk of deterioration in her mental health from undergoing amputation against her wishes.
As far as the procedure is concerned, most patients undergoing such surgery will be given general anaesthesia. In view of the patient's mental health state this is her only anaesthetic option. I have reviewed her case with my anaesthetist colleagues and am assured that there is no specific risk to her, over and above those just mentioned, from undergoing general anaesthesia. She is however likely to need more pre-operative sedation, within safe limits.
In addition, there is a mortality rate for this procedure, at 30 days, of 10%-15% taking account of the extra post-operative risk for a non-compliant diabetic patient.
She would require care on the high dependency unit after the surgery for approximately 3 days. It is recognised that she will be a very challenging patient to nurse, and I would expect sedation to be required, as well as intensive physical and psychiatric nursing. Similarly, it will be difficult to give her the physiotherapy she will need in order to learn to transfer safely; this may indeed prove impossible, confining her to a wheelchair. Thereafter she will need life-long care in a suitable care home, as she will no longer be able to cope in her own home.
The general survival rate after major amputation is some 50% at 2 years (although this figure is taken from a population mainly of elderly males needing an amputation for vascular disease and suffering also considerable co-morbidities). Given the patient's poorly controlled diabetes, her life expectancy may be set at between 5 and 10 years.
Notwithstanding the risks I have just mentioned, on balance I consider that it is more in her interests to undergo surgery, to preserve her life; and that those risks may be managed, and the post-operative difficulties tackled, adequately, to that end.
b) The alternative to surgery is to provide purely supportive care. I would expect it then to be a matter of time before she developed, and in view of her general physical condition succumbed to, an overwhelming antibiotic-resistant infection. I would estimate her life-expectancy in the absence of surgery as between 3 and 6 months.
It is abundantly clear that the patient would undergo considerable distress if surgery were undertaken; however, I would expect her psychiatric team and her care home to do their best to keep this within bounds, with the aid of medication, psychological treatment, and familiarity.
The urgency of surgery, in my view, has now increased because she is today showing signs of sepsis which may develop into septicaemia. There are practical difficulties in respect of performing surgery, as I conduct operations at the Hospital A only on Wednesdays. I am otherwise based at Hospital C. I consider it unlikely, however, that there would be the opportunity to transfer her to Hospital C if she needed surgery and could not undergo it on Wednesday 22 July; while in view of her current state I would regard Wednesday 29 July as likely to be too late, in that her condition may by then have deteriorated to the point where amputation would be unlikely to save her life."
"Throughout the interview, which lasted approximately 20 minutes, Ms AB was in bed. She looked tired, but made good eye contact and clearly notices what was going on in the room. She did not appear anxious or distressed. She made very little spontaneous speech, and Miss F [a physiotherapist] had to repeat questions, in most instances several times, before Ms AB offered any answer. Her answers were brief."
"From my interview with Ms AB, it was evident that she has the firm belief that her present health problems have been caused by the clinicians caring for her. In my opinion, there is little doubt that this belief is delusional, that is, it is firmly held despite available evidence to the contrary. Ms AB has another belief, associated with the first, that she could overcome her current health problems if she were allowed to go home and treat her foot as she sees appropriate. These beliefs were confirmed by the other informants I spoke to, and have also been noted consistently in the clinical records.
In my opinion, the delusions just described are evidence of a disturbance in the functioning of Ms AB's mind or brain.
Regarding the specific decision that Ms AB is faced with (undergoing an above knee amputation), I note from the documents available to me that clinicians have considered that she is able to understand information relevant to the decision, and can retain that information. I was unable to elicit sufficient information during my interview with Ms AB to form my own opinion on this. However, I would note that Ms AB appears to be very aware (and consistently so) that she had been recommended to have an amputation.
Because of the nature of her persistent delusions, I consider that Ms AB is unable to use or weigh information as part of the process of making a decision. Because she believes that her problems have been caused by those professionals looking after her, and she evidently does not trust the advice or treatment that she been recommended, in my opinion it is not possible for her to properly evaluate information that she has been given about her treatment, the consequences of not undergoing the amputation, and her prognosis.
Because she has a disturbance in the functioning of her mind or brain, and she is unable to weigh information in the balance because of a mental disorder, my conclusion is that Ms AB lacks the capacity to make a decision about whether or not to have an amputation.
For the same reason, in my opinion, Ms AB also lacks the capacity to participate in legal proceedings. I consider it very unlikely that she would understand, the significance of even the purpose of legal proceedings. In addition, she may become suspicious that such proceedings are part of the conspiracy against her. In this context, I note that some of her comments during my interview with her suggested that she was as suspicious that I was not independent of the clinical team treating her, despite my reassurances to the contrary."
And later he opined:
"Regarding the prognosis of her mental disorder, it would appear that she has responded to some extent to antidepressant medication. While she continues this medication, the risk of recurrence of depressive symptoms is minimised, although she may have further episodes of depression in the future. The prognosis of her psychotic symptoms (the delusions) is more uncertain. Some people, particularly those who develop delusions later in life, as Ms AB has, fail to show an adequate improvement with antipsychotic treatment. However, the discovery that Ms AB has been successfully hoarding medication that she should have been taking offers the possibility that she has had antipsychotic medication less consistently than expected, and at the lower dose than prescribed."
"For some people with the combination of problems with which Ms AB presents with, successful treatment of physical symptoms will lead to improvement in the mental state. Poorly controlled diabetes can exacerbate or even give rise to mental state abnormalities. However, under such circumstances, the mental state abnormalities tend to fluctuate. This has not been the case with Ms AB. For this reason, in my opinion, it is unlikely that her delusions will lessen substantially if her diabetes, and the problems with her foot, were stabilised.
If Ms AB undergoes the proposed amputation, I consider it likely that this will reinforce her beliefs about her illness being caused by those caring for her. This in turn may make it more difficult to provide her with appropriate nursing and medical care, if she becomes more paranoid and less cooperative.
If she does not undergo the proposed amputation, I understand that this is likely to lead to death fairly soon. Commenting on this is outside my expertise, but assuming that this is the case, Ms AB would receive palliative care. I would not expect this to worsen her psychiatric symptoms, except perhaps to make her more frustrated that she is still not receiving what she considers to be appropriate treatment. If she accepts pain relief, then it should be possible to keep her mental state relatively stable."
"Conclusions
There are essentially two options. One do nothing there has been marked deterioration over the last five days and the patient is likely to die, probably within the next 5-10 days. Two major limb amputation.
Amputation of foot: unlikely to be successfully as infection extending to lower leg, flaps required for reconstruction will almost certainly fail.
Below knee amputation: may heal but only assuming the infection has not extended beyond the mid calf.
Above knew amputation: if the preferred option, it is quick straight forward and even in a toxic patient relatively safe, with a high probability of healing.
Recommendation
Patient proceeds to an above knee amputation as soon as possible,
I was impressed by the dedication and standard of nursing care on The Ward, a real tribute to the ward manager and nursing staff who are clearly managing a very difficult clinical problem."
Analysis and Conclusions
i) the doctors and nursing staff have caused all of the problems with her left foot; and
ii) if left to her own devices and allowed to go home, all will be well.
a) save for a very short period on 16 June, Ms AB has consistently opposed the amputation of her left leg;
b) the impact of the proposed surgery on her mental health is unknown but, at least, in the first instance, is likely to be deleterious;
c) the amputation of her left lower leg will have a very significant and adverse impact on her everyday life for the rest of her life;
d) the proposed amputation will affect her Article 3 and Article 8 rights;
e) the alternative, however, is that she will die in the next 5-10 days;
f) if the functioning of her mind was not impaired it is highly probable, on the basis of Mr Scurr's experience and evidence, that, albeit reluctantly, she would consent to the amputation;
g) in her current medical condition no procedure other than an above knee amputation of her left leg will stave off the infection and save her life; and
h) her medical condition is steadily deteriorating and necessitates an urgent decision being made on the issue of amputation before it becomes too late for any medical intervention to be undertaken which might save her life.
Postscript