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Missing boy and cancer treatment

 

The news that the parents of a child have taken him abroad for cancer treatment and that the Courts here are dealing with the case have echoes of the Ayesha King case which was such big news last year.  I wrote at that time about some of the legal issues about when a parent can decide to reject medical advice about their child

https://suesspiciousminds.com/2014/08/31/parents-deciding-not-to-go-ahead-with-cancer-treatment/

 

 

The Press reports about this particular child are in most of the newspapers today – here’s an example from the Guardian   (I picked up today that I always tend to use the Guardian for these, but they don’t sponsor me.Yet)

 

http://www.theguardian.com/society/2015/oct/07/boy-needing-urgent-surgery-for-cancer-disappears-from-home-in-england

 

The judgment from Mostyn J is available, and people may want to read it

Re JM (a child) 2015

http://www.bailii.org/ew/cases/EWHC/Fam/2015/2832.html

 

The boy is 10 years old. His parents are originally Polish but have lived here for two years. Very tragically, the boy JM has a very rare and aggressive cancer on the right hand side of his jaw. The medical advice is that it should be removed. If it is not removed soon, then JM will suffer an agonising and painful death.

 

 

  1. The operation would be lengthy, lasting up to 12 hours. There is a 2% risk of mortality or morbidity in the operation. It would involve harvesting skin and bone from his leg in order to rebuild the removed jaw bone. The result would be that J may be affected by lameness in future. He would need false teeth inserted in the lower right quadrant of his mouth. As he grows his face may develop a lop-sided appearance. He may suffer from chewing problems and need to be on a softish diet in the long term. Above all of this is the estimate that he has a 55% – 65% chance of survival for 5 years. Therefore there is a 35% to 45% chance of a fatal cancer re-emerging in that period. This might be at the same site or elsewhere in the body, most likely the lungs. All of these statistics are based on adult patients. It is not known whether they are equally applicable to children as the incidence of this disease in children is so rare that there is insufficient data on which to found empirical conclusions and predictions. There are only a handful of children in this country with this cancer. Dr X has treated five or six in 16 years of practice.
  2. I have seen photographs of a child who underwent this surgery. The facial swelling before the operation is very pronounced indeed. It is huge. At present J’s swelling is about a third of that size. The photographs post-operation show extensive skin grafts under the jaw. J may be able to escape skin grafts. The child in the photographs does not appear greatly disfigured, although the result of the operation is clearly noticeable.
  3. There is no doubt that the proposed surgery carries serious risks. However in the very clear opinion of Dr X they are risks which should be taken given the awful alternative. In her oral evidence she stated:

    “I would be hopeful of a young boy growing into a very able teenager. So far he has not had major organ toxicity and, depending on his engagement and motivation, I would have an expectation that he will be walking, running – Mr. Z has put in his statement not playing football, but I think that he means competitively. I mean, he will be able to kick a ball around. So I would expect, externally, that he will look and feel like most teenagers. He will have a scarred face and there is a worry that there will be asymmetry of his face as he grows older. He will be engaged with my team and the surgical team as he grows up, so he still will be medicalised, because he will be caught up in routine surveillance, which goes on for years; so we check out his lungs and do a clinical assessment every two months for the first year, every three months for the next year, every four months for the next year, every six months after that, and then annually, so he will be engaged in his medical outcome, so that makes him different, perhaps, from some of his peers, but, going back to my general clinics of those who survive, then some people find this whole process, actually, is a constructive outcome rather than a destructive one.

    Now, there are outliers of that. There are people who are very challenged by their cancer experience, who find it difficult to re-engage with their peers and who have ongoing psychological problems, but I would counter that with – so that may happen with other traumas in other walks of life. The only benefit to J, though, is that he will be in a very medicalised system that would hope to be able to support and manage problems that he brings to our attention. I would be very hopeful, if he survives, that his outlook is reasonable.”

 

 

The parents did not agree to the surgery, and nor did JM (though of course at aged 10 his views aren’t determinative)

  1. J’s parents do not consent to the operation. Neither does J. He has written to me to say “I don’t want the operation and there is not 100% [chance] to survive after the operation”. To Dr X he put it more graphically. He screamed out: “I don’t want to have it, because I don’t want to have a foot in my mouth”.
  2. J’s parents prefer to seek to treat him with Chinese medicine. The practitioner has not treated a cancer like this before and his technique is to treat the whole body to seek to promote overall wellness. The evidence before me is that even in China, where the use of Chinese medicine is widespread, surgery is the standard treatment for a cancer of this kind.
  3. J’s parents have explained to Dr X why they do not consent to the operation. She told me:

    “They are very frightened and fearful of what their son will blame them for when he grows up, that they worry that he will be so disfigured that he will blame them for allowing the operation to go ahead. That is one of their stated words. But they have not heard that the prospect of him growing up is completely remote, completely impossible, if they do not have surgery. …It is not that I have not tried to say that, and I have been very explicit, but there is a difference between hearing the words and processing the words. …That is one of their issues. I think that they have struggled with the consent process.”

 

The hospital can’t carry out the surgery if the parents don’t consent, unless the Court authorises it. Hence the hospital made an application to Court. The parents would have been able to attend that hearing and make their arguments, but did not attend.  Of course, in the Ayesha King case, the parents favoured a particular form of treatment proton beam therapy, which wasn’t available in the UK but was a form of treatment that was recommended in other countries for cancer treatment. Here, note that not even in China would this form of cancer be treated by “chinese alternative medicine”

 

The Judge weighed up the issues and the parents known objections and the child’s views very carefully, and came to the conclusion that the only option for JM was for this surgery to occur.  We now know that the child has been removed from the country – possibly to Poland, possibly to China.

You may be asking whether it really should be up to the Polish courts to decide, if the parents are from Poland and that’s where they are physically located there – if they disagreed with English doctors and decided to go back home, what’s it to do with the English Courts? Well, Mostyn J did explicitly deal with this

 

  1. It is possible that J is now in Poland. On 17 September 2015 when these proceedings were commenced J was habitually resident here in England. Therefore under Article 8(1) of Council Regulation (EC) No 2201/2003 of 27 November 2003 concerning jurisdiction and the recognition and enforcement of judgments in matrimonial matters and the matters of parental responsibility this court had jurisdiction over him at that time in relation to the matter of parental responsibility then in controversy namely his medical treatment. Since then it is possible (but unlikely) that with joint parental authority his habitual residence has changed to Poland. If so, it may be that courts here do not have jurisdiction to determine where or with whom he should live. As things stand at present however the evidence is that J remains habitually resident in this jurisdiction.
  2. However, there is no doubt that this court is seised of the specific issue of J’s medical treatment. Therefore under Article 19 the Polish court must decline jurisdiction in relation to this matter in favour of this court. I have explained that implementation of my primary decision will require a further hearing before me. If J is now permanently in Poland it may be that it would be appropriate for that aspect to be remitted for decision by the Polish court under Article 15

[It stays with the English Courts for now – if the parents have genuinely moved permanently to Poland, then an application can be made to transfer the case to the Polish Courts]

We will have to see how this story develops. And just as with the Ayesha King story, your heart absolutely goes out to the family who are in the middle of an absolute nightmare and just hope that a resolution can be reached.

 

[Mostyn J being Mostyn J, he still managed in the midst of all this to explain that if the imposition of treatment is on a 16 or 17 year old, the application ought properly to be made solely under the High Court’s inherent jurisdiction and not to a family Court under the Children Act and  hence

Note 1 It is for this reason I think that Ian McEwan’s excellent novel The Children Act (Jonathan Cape 2014), which is about a 17 year old Jehovah’s Witness refusing a blood transfusion, is in fact incorrectly titled.

 

which leads me to think that at either a book club or some cocktail party, someone has made the mistake of asking Mostyn J what he thinks about Ian McEwan’s novel and has wished twenty minutes later that they hadn’t.  I LOVE Mostyn J, in case you didn’t realise. His judgments always contain something extraordinary and marvellous.  I know that Ian McEwan read a LOT of judgments when he was researching his novel. If he still keeps up with them, he may be pleased to (a)  be in one, and (b) have received a positive book review.  I suspect he’ll be content with the title of “The Children Act” rather than “The Inherent Jurisdiction of the High Court”   ]

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An unmusical Mozart – a patient’s right to say no to surgery

 

The Court of Protection dealt with a challenging case in Wye Valley NHS Trust v B 2015. The case was decided by Mr Justice Peter Jackson, and as ever he brings analysis, kindness and humanity to bear on a very difficult issue in the Court of Protection.

http://www.bailii.org/ew/cases/EWCOP/2015/60.html

 

Here a man who clearly lacked capacity to make a fully informed decision, had expressed extreme hostility towards having an operation to amputate his foot. The medical professionals were clear that if he did not have his foot amputated, that the infection in it would spread and eventually kill him.

 

The Court had to decide whether it was in the man’s best interests to have the operation against his will or whether it was in his interests to respect his autonomy and wishes even though it would have adverse consequences.

A person who has capacity to understand the medical advice and risks and consequences would be able to say no to surgery in any event. What the Judge had to do here was consider what weight to give to the man’s wishes and the context of those wishes being expressed by a person who did not have the capacity to fully weigh up the pros and cons.

 

  1. Where a patient lacks capacity it is accordingly of great importance to give proper weight to his wishes and feelings and to his beliefs and values. On behalf of the Trust in this case, Mr Sachdeva QC submitted that the views expressed by a person lacking capacity were in principle entitled to less weight than those of a person with capacity. This is in my view true only to the limited extent that the views of a capacitous person are by definition decisive in relation to any treatment that is being offered to him so that the question of best interests does not arise. However, once incapacity is established so that a best interests decision must be made, there is no theoretical limit to the weight or lack of weight that should be given to the person’s wishes and feelings, beliefs and values. In some cases, the conclusion will be that little weight or no weight can be given; in others, very significant weight will be due.
  2. This is not an academic issue, but a necessary protection for the rights of people with disabilities. As the Act and the European Convention make clear, a conclusion that a person lacks decision-making capacity is not an “off-switch” for his rights and freedoms. To state the obvious, the wishes and feelings, beliefs and values of people with a mental disability are as important to them as they are to anyone else, and may even be more important. It would therefore be wrong in principle to apply any automatic discount to their point of view.
  3. In this case, the Trust and the Official Solicitor consider that a person with full capacity could quite reasonably decide not to undergo the amputation that is being recommended to Mr B, having understood and given full thought to the risks and benefits involved. However, the effect of their submissions is that because Mr B himself cannot balance up these matters in a rational way, his wishes and feelings are outweighed by the presumption in favour of life. It is, I think, important to ensure that people with a disability are not – by the very fact of their disability – deprived of the range of reasonable outcomes that are available to others. For people with disabilities, the removal of such freedom of action as they have to control their own lives may be experienced as an even greater affront that it would be to others who are more fortunate.
  4. In some cases, of which this is an example, the wishes and feelings, beliefs and values of a person with a mental illness can be of such long standing that they are an inextricable part of the person that he is. In this situation, I do not find it helpful to see the person as if he were a person in good health who has been afflicted by illness. It is more real and more respectful to recognise him for who he is: a person with his own intrinsic beliefs and values. It is no more meaningful to think of Mr B without his illnesses and idiosyncratic beliefs than it is to speak of an unmusical Mozart.
  5. Further, people with Mr B’s mental illness not uncommonly have what are described by others as “religious delusions”. As appears below, he describes hearing angelic voices that tell him whether or not to take his medication. Delusions arising from mental illness may rightly lead to a person’s wishes and feelings being given less weight where that is appropriate. However, this cannot be the automatic consequence of the wishes and feelings having a religious component. Mr B’s religious sentiments are extremely important to him, even though he does not follow an established religion. Although the point does not arise for determination in this case, I approach matters on the basis that his Article 9 right to freedom of thought and religion is no less engaged than it would be for any other devout person.
  6. This is another manifestation of the principle that the beliefs and values of a person lacking capacity should not be routinely undervalued. Religious belief has been described as a belief that there is more to be understood about mankind’s nature and relationship to the universe than can be gained from the senses or from science: R (Hodkin and another) v Registrar General of Births, Deaths and Marriages [2014] AC 610 at [57]. Religious beliefs are based on faith, not reason, and some can strongly influence the believer’s attitude to health and medical treatment without in any way suggesting a lack of mental capacity. Examples include belief in miraculous healing or objections to blood transfusions. There may be a clear conceptual difference between a capable 20-year-old who refuses a blood transfusion and an incapable elderly man with schizophrenia who opposes an amputation, but while the religiously-based wishes and feelings of the former must always prevail, it cannot be right that the religiously-based wishes and feelings of the latter must always be overruled. That would not be a proper application of the best interests principle.
  7. Having commented on the process of evaluating wishes and feelings, I refer to the Law Commission’s current consultation paper No. 222: Mental Capacity and Deprivation of Liberty. It proposes [Proposal 12.2] that s.4 of the Act might be amended so that an incapacitated person’s wishes and feelings should be assumed to be determinative of his best interests unless there is good reason do depart from the assumption. It is said [12.42] that there is insufficient certainty about the weight to be given to a person’s wishes and feelings and that prioritising them would reflect to some degree the approach of the United Nations Convention on the Rights of Persons with Disabilities.
  8. In the above discussion, I have identified some of the circumstances in which the wishes and feelings of incapacitated individuals might be unjustifiably undervalued. However, my respectful view is that the Law Commission proposal would not lead to greater certainty, but to a debate about whether there was or was not “good reason” for a departure from the assumption. To elevate one important factor at the expense of others would certainly not have helped the parties, nor the court, in the present case. All that is needed to protect the rights of the individual is to properly apply the Act as it stands.

 

For my part, I think that the proposal by the Law Commission would be a beneficial addition for dealing with these cases, putting a rebuttable presumption that a person’s expressed wishes should be followed unless there are strong reasons for the contrary. Whilst many Court of Protection Judges (including this one) have a very healthy respect for autonomy and the wishes of the patient, some still tend to veer towards the wrapping P in cotton wool and the patrician approach.

 

Lastly, I refer to the principle at s. 4(4) that so far as is reasonably practicable, the person must be permitted and encouraged to participate as fully as possible in any decision affecting him. In this case, given the momentous consequences of the decision either way, I did not feel able to reach a conclusion without meeting Mr B myself. There were two excellent recent reports of discussions with him, but there is no substitute for a face-to-face meeting where the patient would like it to happen. The advantages can be considerable, and proved so in this case. In the first place, I obtained a deeper understanding of Mr B’s personality and view of the world, supplementing and illuminating the earlier reports. Secondly, Mr B seemed glad to have the opportunity to get his point of view across. To whatever small degree, the meeting may have helped him to understand something of the process and to make sense of whatever decision was then made. Thirdly, the nurses were pleased that Mr B was going to have the fullest opportunity to get his point across. A case like this is difficult for the nursing staff in particular and I hope that the fact that Mr B has been as fully involved as possible will make it easier for them to care for him at what will undoubtedly be a difficult time.

 

[that noise you can hear is me applauding]

 

The Judge sets out the pros and cons of the best interests decision very well – the judgment is short, and well worth a read for those sections.

  1. Conclusion
  2. Having considered all of the evidence and the parties’ submissions, I have reached the clear conclusion that an enforced amputation would not be in Mr B’s best interests.
  3. Mr B has had a hard life. Through no fault of his own, he has suffered in his mental health for half a century. He is a sociable man who has experienced repeated losses so that he has become isolated. He has no next of kin. No one has ever visited him in hospital and no one ever will. Yet he is a proud man who sees no reason to prefer the views of others to his own. His religious beliefs are deeply meaningful to him and do not deserve to be described as delusions: they are his faith and they are an intrinsic part of who he is. I would not define Mr B by reference to his mental illness or his religious beliefs. Rather, his core quality is his “fierce independence”, and it is this that is now, as he sees it, under attack.
  4. Mr B is on any view in the later stages of his life. His fortitude in the face of death, however he has come by it, would be the envy of many people in better mental health. He has gained the respect of those who are currently nursing him.
  5. I am quite sure that it would not be in Mr B’s best interests to take away his little remaining independence and dignity in order to replace it with a future for which he understandably has no appetite and which could only be achieved after a traumatic and uncertain struggle that he and no one else would have to endure. There is a difference between fighting on someone’s behalf and just fighting them. Enforcing treatment in this case would surely be the latter.
  6. The application, which was rightly brought, is accordingly dismissed.
  7. I conclude by thanking the parties and witnesses for the quality of their contributions and by paying tribute to the high standard of care and treatment that Mr B is now receiving.

 

forced sterilisation

I normally canter through a judgment, picking out the salient bits, but I think this one really needs to be read in full to appreciate it. It would not be fair for me to look at individual passages.

This is a follow-up to this piece

https://suesspiciousminds.com/2014/07/08/barbecue-tongs-and-police-being-given-power-to-force-entry-to-a-home/

 

In which Cobb J, sitting in the Court of Protection, gave a ruling that a caesarean section was in a woman’s best interests and even that the police could force entry. It was a very unusual case.

This follow up is the same Judge, in the same Court, considering whether the woman, who lacked capacity to make decisions for herself, should be sterilised without her consent. And again whether there could be powers to forcibly enter her home, remove her and take her to hospital.  The Court do decide that these things are in her best interests.

There’s no getting away from this, the fact that a Court even have these powers makes anyone feel uncomfortable.  Critics of the system have the right to say that this feels wholly and utterly wrong, no matter how carefully it is explored.  It does end up smacking of eugenics, and the nasty side of eugenics at that. Even thinking for a minute about how terrifying it must be for this woman when the police knock down her door and she is taken to hospital for surgery she doesn’t want and doesn’t understand makes your flesh crawl.

My personal take is that I think Cobb J gives a very careful and thoughtful judgment and tries to balance the competing factors.  Parliament have given the Court of Protection this authority to make such decisions, and if they have to be made, doing it in the way Cobb J has done is the best way to do it. I think he is also right to set out that this is a truly exceptional case, with truly exceptional facts – all efforts to engage and develop the woman’s understanding about the health risks to her of further pregnancies were unsuccessful, and the health risks are life-threatening.  But we have sadly seen that unique and exceptional cases do sometimes end up being used in ones that are slightly less so, and on and on until authorities bear little resemblance to the original case.

 

The Mental Health Trust and DD 2015  http://www.bailii.org/ew/cases/EWCOP/2015/4.html

 

Even if you end up disagreeing with Cobb J’s decision (and I think you’re perfectly entitled to – this is one of those really moral and ethical arguments) please do him the courtesy of reading the judgment first. It must be a thankless job having to make decisions like this.

Incapacity cannot be deduced from isolated incidents of eccentric reasoning

The Court of Protection decision in Heart of England NHS Foundation Trust and JB 2014

http://www.bailii.org/ew/cases/EWHC/COP/2014/342.html

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

    1. 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.

 

    1. 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.

 

    1. 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.

 

    1. The Act contains a number of important general principles regarding capacity:

 

  • 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).

    1. 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.

 

    1. 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.

 

  1. 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

    1. 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.

 

  1. 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.
    1. 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.

 

    1. 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.

 

  1. 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)

    1. At the hearing evidence was taken from Dr O and Dr Prabhakaran via a telephone conference call (so that the latter heard the former’s evidence), and from Mr Collin in person.

 

    1. 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.

 

    1. 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.

 

    1. I note that as recently as 16 January, Dr O and Dr B expressed themselves unable to reach a conclusion as to whether JB had capacity and that during her assessment on 12 February, Dr O obtained only limited co-operation from JB.

 

    1. 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.

 

    1. 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.

 

    1. 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.

 

    1. 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.

 

    1. 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.

 

    1. 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.

 

    1. 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.

 

    1. 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.

 

  1. 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.