The Court of Protection decision in Heart of England NHS Foundation Trust and JB 2014
In this case, the Court of Protection, in the form of Mr Justice Peter Jackson, was faced with an application by the Hospital for a declaration that JB, who was not consenting to an amputation, lacked capacity to make that decision and that the surgery was in her best interests.
The case throws up some interesting issues, and I think it leads fairly neatly into my next piece, in suggesting that the Court of Protection may be moving away from a patrician “State knows best” view of cases towards a more “vulnerable people are owed some respect for their wishes and feelings” view.
You can’t really sum up the whole issue of capacity and declarations about capacity much better than the Judge does here – it is an excellent distillation of the balancing act that the Court has to perform
- The right to decide whether or not to consent to medical treatment is one of the most important rights guaranteed by law. Few decisions are as significant as the decision about whether to have major surgery. For the doctors, it can be difficult to know what recommendation to make. For the patient, the decision about whether to accept or reject medical advice involves weighing up the risks and benefits according to the patient’s own system of values against a background where diagnosis and prognosis are rarely certain, even for the doctors. Such decisions are intensely personal. They are taken in stressful circumstances. There are no right or wrong answers. The freedom to choose for oneself is a part of what it means to be a human being.
- For this reason, anyone capable of making decisions has an absolute right to accept or refuse medical treatment, regardless of the wisdom or consequences of the decision. The decision does not have to be justified to anyone. In the absence of consent any invasion of the body will be a criminal assault. The fact that the intervention is well-meaning or therapeutic makes no difference.
- There are some who, as a result of an impairment or disturbance in the functioning of the mind or brain, lack the mental capacity to decide these things for themselves. For their sake, there is a system of legal protection, now codified in the Mental Capacity Act 2005. This empowers the Court of Protection to authorise actions that would be in the best interests of the incapacitated person.
- 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: s.2(1).
- A person must be assumed to have capacity unless it is established that he lacks capacity: s.1(2).
- The question of whether a person lacks capacity must be decided on the balance of probabilities: s.2(4).
- 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: s.1(3)
- A person is not to be treated as unable to make a decision merely because he makes an unwise decision: s.1(4).
- 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: s.2(3).
- These principles reflect the self-evident seriousness of interfering with another person’s freedom of action. Accordingly, interim measures aside, the power to intervene only arises after it is has been proved that the person concerned lacks capacity. We have no business to be interfering in any other circumstances. This is of particular importance to people with disadvantages or disabilities. The removal of such ability as they have to control their own lives may feel an even greater affront to them that to others who are more fortunate.
- Furthermore, the Act provides (s.1(6)) that even where a person lacks capacity, any interference with their rights and freedom of action must be the least restrictive possible: this acknowledges that people who lack capacity still have rights and that their freedom of action is as important to them as it is to anyone else.
- The temptation to base a judgement of a person’s capacity upon whether they seem to have made a good or bad decision, and in particular upon whether they have accepted or rejected medical advice, is absolutely to be avoided. That would be to put the cart before the horse or, expressed another way, to allow the tail of welfare to wag the dog of capacity. Any tendency in this direction risks infringing the rights of that group of persons who, though vulnerable, are capable of making their own decisions. Many who suffer from mental illness are well able to make decisions about their medical treatment, and it is important not to make unjustified assumptions to the contrary.
By way of background to this case
- It concerns a 62 year old lady named JB. In earlier life, before she became too unwell, she undertook responsible work. She now lives with her twin sister. She is described by her Community Psychiatric Nurse as a strong willed woman who before her latest illness was good at needlework and art, enjoyed reading, attended her local church and took a lot of interest in community events.
- JB has a number of mental and physical disabilities. In her 20s, she was diagnosed as suffering from paranoid schizophrenia for which she has received treatment of various kinds, including during several involuntary hospital admissions, the last being in 2005. Since then she has been subject to what is now known as a Community Treatment Order. She lacks insight into her mental illness but accepts antipsychotic medication to avoid being returned to hospital.
- On New Year’s Eve, JB, having been unwell for several days, was readmitted and has remained in hospital since then. Her right foot was now entirely mummified and by the end of January it had come off, leaving an unresolved wound. Once again, the advice of the surgeons was that an amputation was necessary to allow the wound to be closed and to prevent it becoming infected. JB continued to refuse consent for this on some occasions, though she expressed agreement on others. Indeed, on 4 February she signed a consent form. Once again, doubts were expressed about her capacity, with no clear conclusion being reached. An example is the report of Dr B, who assessed JB on 14 January and concluded that “I am of the opinion that one needs to be certain of her capacity to consent or refuse the proposed intervention… However one cannot say with certainty she lacks capacity.” It was again agreed that an application would be made to the Court of Protection.
- In the meantime, discussion was taking place between surgeons, physicians and consultants in rehabilitation as to the nature of the amputation that would be most appropriate. At different times, it has been suggested that there should be amputation below the knee, through the knee or above the knee. Each option has important consequences in relation to the process of rehabilitation and the possibility of the patient walking in future. At the outset of this hearing the Trust’s position was that a through-knee operation should be approved, but this then changed to a recommendation for a below-knee operation. It is to be noted that the consent form signed by JB only two days before the proceedings began had covered an above-knee operation. The relevance of all of this is that the attempts to assess her capacity have taken place against a background of shifting medical opinion.
- On 6 February, the Trust applied to the court for a declaration that JB lacks capacity to make a decision about serious medical treatment. It sought a declaration that it would be in her best interests to have a through-knee amputation and for her to be sedated if she resisted.
21. I turn to the question of whether JB has the capacity to decide whether or not to consent to amputation of her right leg. The Trust says that she does not, relying upon evidence given by Dr O. The Official Solicitor says that she does, relying upon the evidence of Dr Pravin Prabhakaran, consultant psychiatrist, and Mr Jack Collin, consultant surgeon. Each of these witnesses has assessed JB during the past week and gave evidence during the hearing.
The issue of capacity was a critical one – the Judge makes it manifestly plain – if a person has capacity to consent to surgery and understands the pros and cons and risks and benefits to make an informed choice then they also have the capacity to say no. The surgery could not be performed on JB if she had capacity, because she has the right to say no. IF she lacked capacity, then the Court would still have to consider whether the surgery was in her best interests (which does not mean simply substituting what a rational person might do in her shoes, but a consideration of what is in HER best interests)
Frankly, if surgeons came to me and said that they couldn’t agree on whether to cut my leg off above the knee, below the knee or through the knee, I wouldn’t consent to an amputation – I’d tell them to go away and come back when they know between themselves which it was.
The Judge makes a very good point about the process of assessing a person’s capacity
What is required here is a broad, general understanding of the kind that is expected from the population at large. JB is not required to understand every last piece of information about her situation and her options: even her doctors would not make that claim. It must also be remembered that common strategies for dealing with unpalatable dilemmas – for example indecision, avoidance or vacillation – are not to be confused with incapacity. We should not ask more of people whose capacity is questioned than of those whose capacity is undoubted.
Absolutely. Anyone faced with that decision would have had some emotional reaction to it, and some changes of heart, some denial, some over-optimism, some hopelessness. It is not fair to set the test of capacity as though the person had to approach the decision as though they were Mr Spock, coolly and dispassionately considering the pros and cons.
On assessing the conflicting medical evidence about capacity, the Judge broadly considered that those who claimed she did not have capacity were placing too high a test on JB (underlining mine)
- Dr O has been JB’s community psychiatrist since October 2013. She has seen her three times: October, January and 12 February. She advises that JB lacks insight into her mental state and does not believe that she has a mental illness. This is not uncommon with schizophrenia. Dr O believes that in relation to her physical health, JB can understand and retain some but not all of what is being said by the doctors, but that her ability to weigh the information is compromised by her tendency to minimise and disbelieve what the doctors are telling her. She conceded that JB’s approach was possibly a normal reaction but said that she is not convinced that she had actually weighed all the evidence that she had been given. Nonetheless, over time JB has shown more belief and greater engagement, telling Dr O that she is frightened of surgery.
- Dr O advises that schizophrenia can have an effect on cognition but she was not in fact able to give any clear instance of irrationality in JB’s current thinking. She went so far as to say that the rejection of a through-knee operation was evidence of incapacity, although by the time she gave evidence this had been dropped as a plan.
- Dr Prabhakaran assessed JB on 9 and 12 February. She was more communicative with him than with Dr O, possibly because she regarded him as someone who is not implicated in her Community Treatment Order. He confirms the diagnosis of schizophrenia and the absence of any psychotic features or depression. He says that he had a detailed discussion with her about the various forms of amputation. JB was able to understand the main benefits and risks associated with each procedure, including the risk of death. He found her consistent in her views and reasoning process. She was very well orientated and had no problem with understanding or retaining information.
- Dr Prabhakaran discussed the then proposed through-knee operation, saying that it was the doctors’ preferred option. JB replied: “It is not my preferred option… I have a horror of the whole thing”. She said that she wanted her leg to remain as long as possible and only wanted any necrotic part removed. If she was to have an operation she wanted a longer leg and a hope of walking. She does not want to live her life with a shorter leg.
- During this conversation, JB would often pause for a long time before answering. Dr Prabhakaran considered this an effect of her schizophrenia impacting on her cognitive functioning, possibly alongside tiredness and the hospital environment. He says that given time, she can process and communicate her clear wishes. He is confident that JB has capacity to make a decision with regard to surgery, including a decision not to have it.
- Mr Collin assessed JB from a surgical perspective on 13 February. His conversation with her gave him a full opportunity to assess her understanding, as would be normal in such a case. His report details a full conversation. JB was able to give him a lucid and coherent medical history. In Mr Collin’s experience, few patients would give a better account. She has a tendency to minimise, but this is a natural response and not evidence of any incapacity. Mr Collin is aware that JB is mentally ill but throughout the discussion she gave him no reason to suspect a lack of capacity to consent or withhold consent for any essential operation.
- Mr Collin explained that JB’s decision in October to refuse surgery was unusual but not illogical and that from the medical perspective the loss of the foot by natural processes had been satisfactory. Surgically, her position is better now than it had been in October in that she is not currently suffering from any infection. As matters now stand, it is Mr Collin’s opinion that a below-knee amputation is the only sensible clinical decision to make, but if JB does not want this there would be no compelling reason to seek to persuade her otherwise. A substantial risk of infection with possibly life-threatening consequences in the longer term undoubtedly exists and the medical advice from any surgeon in the land would be clear, but she does not have to take it. Apart from anything else, the greater short-term risks arise from remaining in hospital with the risk of infection and from the small but not insignificant possibility of a major adverse consequence from surgery of this kind.
- It was, perhaps surprisingly, suggested to Mr Collin that he lacked the expertise to assess capacity. He accepted that the assessment of mental illness was outside his remit but said that he was well qualified to assess the capacity of patients to consent to operations. I agree. All doctors and many non-medical professionals (for example, social workers and solicitors) have to assess capacity at one time or another. Bearing in mind JB’s longstanding mental illness it is entirely appropriate that the core assessment of her capacity comes from psychiatrists, but other disciplines also have an important contribution to make.
- The combined and complementary evidence of Dr Prabhakaran and Mr Collin provides powerful confirmation that JB has the ability to understand, retain and weigh and use the necessary information about the nature, purpose and effects of the proposed treatment. I accept the view of Dr Prabhakaran that JB’s schizophrenia is relevant to the way in which she decides, and not to her capacity to decide. Her tendency at times to be uncommunicative or avoidant and to minimise the risks of inaction are understandable human ways of dealing with her predicament and do not amount to incapacity.
- I depart from the assessment of Dr O because I am not satisfied that she establishes the necessary link between JB’s mental illness and the alleged incapacity. Further, her analysis demands more of JB than the law requires. It is not for JB to understand everything, or to prove anything. Dr O among others has perfectly properly raised questions about JB’s capacity, but her evidence does no more than that and does not discharge the burden upon the Trust.
- I do not accept the Trust’s submission that incapacity can be deduced from isolated instances of eccentric reasoning on the part of JB: for example, agreeing to intravenous antibiotics or blood transfusion but refusing the necessary cannulation. I also reject the submission that those who conclude that JB does not lack capacity have failed to grapple with the facts that (i) she undoubtedly lacks capacity in relation to treatment for her mental illness and (ii) she has lacked capacity in relation to surgical treatment in the past and (iii) she has changed her position from refusal of all surgery to a willingness to contemplate an operation of some kind, a situation calling for investigation. As to the first element, as has already been said, there is no necessary correlation between a lack of insight into schizophrenia and incapacity to decide about surgery. The second element begs the question, in that it has not been established that JB has ever lacked capacity to decide about surgery. Finally, the development in JB’s thinking about amputation was in my view well understood by Dr Prahakaran. Insofar as it calls for any explanation, her view has evolved over time in a way that is consistent with her mental state.
A particular issue arises, and is dealt with in paragraph 28 – there was a time in the process, when JB was accepting that surgery was the right option (i.e following the medical advice). There’s always a risk in these situations that one tends to assume that the person has capacity when they make a decision that the doctor supports – just because JB agreed with the doctor does not mean that she had capacity. If she had said no, on the same day, the temptation would have been to dispute that she had capacity to say no, but the test and principles are the same. The ability to say no doesn’t require more capacity than the ability to say yes.
28. A similar issue arises from the statement of Dr W, a vascular surgeon. In common with the other surgeons he believes that an amputation is in JB’s best interests. Writing on 5 February, he said “…we now have a window of opportunity as she has become cooperative with her medical management and has consented to the operation…” There is a danger that in a difficult case like this the patient is regarded as capable of making a decision that follows medical advice but incapable of making one that does not.
The conclusion therefore was that JB had capacity, and that there was no locus to make a declaration. It seemed that JB might be more willing to consent to the surgery, but that had to be her free choice.
My conclusion is that JB undoubtedly has a disturbance in the functioning of her mind in the form of paranoid schizophrenia (as to which she lacks insight), but that it has not been established that she thereby lacks the capacity to make a decision about surgery for herself. On the contrary, the evidence establishes that she does have capacity to decide whether to undergo an amputation of whatever kind. She now appears to be open to having the below-knee operation that the doctors recommend. Whether she has it will be a matter for her to decide for herself with the support of those around her.