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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.

 

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About suesspiciousminds

Law geek, local authority care hack, fascinated by words and quirky information; deeply committed to cheesecake and beer.

3 responses

  1. Important judgement. Peter Jackson is a luminary who gets to the heart of the matter. The question is simply about the capacity to understand the choice being offered and not about the ‘quality’ of the decision being made.

    • Last week marked the final act in a criminal trial in Norwich which I and the Sunday Telegraph columnist Christopher Booker had been able to follow in great detail for many months. We agreed that it was one of the strangest and most disturbing trials we have ever come across.
      Twice before, but only under tight legal constraints, Christopher managed to publish reports relating to the trial while it was still unfolding (links to these articles are given below). But last Sunday, when he planned to write again about the trial’s shocking conclusion – with each of three defendants being given life-sentences – the newspaper declined to publish his article, for reasons not related to its accuracy.
      Because his unpublished article raises at least some of the many serious questions about the conduct of the trial which have not been aired anywhere else in the British media,

      [Ian, I am not going to publish that piece, which was rejected by either the Telegraphs Editor or lawyer, or both- but for my part largely because I simply do not know whether there is a pending appeal, and because of the risk of contamination of said appeal. I’m sure that most of the readers can read between the lines that both Ian and Christopher Booker have very serious allegations to make about the conduct of the trial and the safety of the convictions, and are wholly satisfied that this conviction was wrong. Also, as I’ve never written about this case and don’t intend to, it really doesn’t belong in my comments section in any event, and particularly not on an utterly unrelated case. Suesspicious Minds]

      Booker’s earlier reports relating to the trial can be found here
      http://www.telegraph.co.uk/comment/11641375/Social-workers-get-the-story-theyre-after.html
      and here
      http://www.telegraph.co.uk/news/uknews/law-and-order/11790298/The-greatest-abuse-would-be-to-indulge-in-a-witch-hunt.html

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