In Wye Valley NHS Trust v Mr B  EWCOP 60, Peter Jackson J has made clear just how far along we have come on the journey to recognising the dangers of treating capacity as a cliff-edge off which one falls into the clinging embrace of paternalism.
The case concerned Mr B, a 73 year old with a long standing history of mental illness together with, in more recent years, poorly controlled Type II diabetes. Mr B had for many years experienced persistent auditory hallucinations in which he heard the voices of angels and of the Virgin Mary. Although he did not consider himself to belong to any particular religion, he considered that Mary wished him to be a Catholic. After the death of his long-term partner in 2000, he had lived by himself for many years, the judge describing his situation as that of a “an isolated but not unsociable person with an interest in the outside world whose mental illness did not cause him undue distress.”
Mr B developed a chronic foot ulcer that did not heal despite various interventions. In July 2014, he was admitted to hospital. A sustained period of time in hospital (alternating between general and psychiatric settings) then ensued. Throughout this time, Mr B continued to resist medication for his diabetes and antibiotics for his foot, with the consequence that by the time his mental health had begun to recover in August 2015 his physical health had markedly deteriorated. He was becoming tired and lethargic and the infection was becoming systemic. His foot was not only infected but putrefying and the bone itself had become infected (osteomyelitis). He was refusing all treatment, but allowed his dressings to be changed. Eventually it became impossible to manage his physical health in a psychiatric unit and he was transferred to a general hospital ward on 12 September.
An application was made by the treating NHS Trust to the Court of Protection for declarations and decisions as to Mr B’s medical treatment and, specifically, authority to the Trust to carry out an amputation upon his leg. It was clear from the evidence before the court that, in the position Mr B was now in, not carrying out an amputation would lead within a matter of days to Mr B succumbing to an overwhelming infection within a matter of days; conversely, his life-expectancy if the operation was successful would (very tentatively) be in the order of around 3 years.
Peter Jackson J accepted the clear evidence before the court that Mr B lacked the capacity to make treatment decisions upon his foot in light of his compromised ability to understand the information about his damaged foot and a clear inability to weigh the relevant medical evidence as part of the process of reaching his decision.
The question for the court was therefore whether it was in his best interests for the amputation to proceed. As an integral part of this question, Peter Jackson J had to consider what weight to place upon Mr B’s wishes and feelings as well as his religious beliefs.
The Trust submitted that the views expressed by a person lacking capacity were in principle entitled to less weight than those of a person with capacity.
Peter Jackson J accepted that this was 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.” Importantly, however, he went on: “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.”
Rightly, Peter Jackson J emphasised that:
“11. 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.
12. 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.
13. 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.
14. 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.
15. 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  AC 610 at . 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.”
Perhaps equally importantly, Peter Jackson J directed himself by reference to the principle in s.4(4) MCA 2005 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:
“18… 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.”
Mr B’s wishes and feelings, as relayed to Peter Jackson J in his meeting with him were starkly framed:
I don’t want an operation.
I’m not afraid of dying, I know where I’m going. The angels have told me I am going to heaven. I have no regrets. It would be a better life than this.
I don’t want to go into a nursing home, [my partner] died there.
I don’t want my leg tampered with. I know the seriousness, I just want them to continue what they’re doing.
I don’t want it. I’m not afraid of death. I don’t want interference. Even if I’m going to die, I don’t want the operation.”
As Peter Jackson J said, “[a]ll this was said with great seriousness, and in saying it Mr B did not appear to be showing florid psychiatric symptoms or to be unduly affected by toxic infection.”
When it came to conducting the best interests balancing exercise in light of these considerations, Peter Jackson J came to the clear conclusion that an enforced amputation would not be in Mr B’s best interests. His conclusions in this regard make clear the extent to which the judge sought to recognise Mr B as an “individual human being” (to use Lady Hale’s phrasing from Aintree):
“43. 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.
44. 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.
45. 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.”
I have no doubt that this case will profoundly have affected the professionals involved, and I have a great deal of sympathy for them. How we should feel in relation to Mr B is not something that I think it is right to pontificate upon – save for noting that our instinctive reactions may say a great deal about how we view the world (and, indeed, perhaps, our views about any world beyond).
More broadly, the approach endorsed by Peter Jackson J to the construction of best interests decisions on behalf of those lacking capacity is one that is light years removed from the paternalistic model that still remains so prevalent in many settings (including, in some cases, the courtroom). Road-testing in training today has already shown how useful the phrase “capacity is not an off-switch” is in exploring the meaning of the term ‘best interests.’
My only quibble with the judgment is with Peter Jackson J’s assertion (in respectfully casting doubt upon the Law Commission’s provisional proposal to amend s.4 MCA so as to provide that an incapacitated person’s wishes and feelings should be assumed to be determinative of his best interests unless there is good reason to depart from the assumption) that “[a]ll that is needed to protect the rights of the individual is to properly apply the Act as it stands.” My quibble has three bases.
The first is that, on the ground, the fact that there is no hierarchy within the s.4 checklist routinely does lead to undervaluing of the individual’s wishes and feelings and decisions being made that are very far from right for that individual as an individual human being.
The second is that, whether or not one agrees with the precise wording of the provisional proposal, I would suggest that it is (as it is designed to do) deliberately framed as to seek to bring the MCA into some form of closer compliance with the CRPD. It is very clear, I suggest, from work done by the Essex Autonomy Project and others, both that (1) the CRPD requires that decision-making regimes are framed so as respect the rights, will and preferences of the individuals to which they are subject; and (2) that the MCA as currently drafted does not do so, primarily because it does not give a specific place in the hierarchy under the s.4 checklist to wishes and feelings. It is perhaps noteworthy in this regard that the Mental Capacity Bill before the Northern Ireland Assembly in its equivalent of s.4 requires “special regard” to be had to the person’s wishes and feelings – this has very deliberately been framed to seek to respond to the CRPD. It may be other language could be used to encapsulate the approach (Wayne Martin and I suggested some in our evidence to the Northern Ireland Assembly). I would, however, suggest that (a) some such approach will be required in due course to bring our legislation into compliance with the CRPD; and (b) pending such legislative amendment, the courts can and should consider interpreting the MCA in such a way as to ensure appropriate respect for the wishes and feelings of P where they can be reliably identified and where the proposal is to seek to do other than that which P wishes to happen in the name of their best interests.
The third is that, as discussed elsewhere (see, most recently, the article I co-wrote with Cressida Auckland in the Elder Law Journal  3 ELJ 293 entitled “More presumptions please? Wishes, feelings and best interests decision-making”). I would contend that we do not necessarily even have to look to the CRPD to find ourselves constrained to construe the MCA on the basis that it requires a closer focus upon identifying the individual’s wishes and feelings and, where they can reliably be identified, to take those wishes and feelings as our guide to constructing a best interests decision on their behalf. If – as Peter Jackson J himself has said previously (see Re E at paragraphs 124 and 125) – a person does not lose their right to respect for private life and their autonomy merely because they lose capacity – then simple application of the principles of Article 8 ECHR would seem to dictate that questions of proportionality and necessity must arise every time that the proposal is to override an individual’s clearly identified wishes and feelings. Indeed, Peter Jackson J could be said to have recognised this himself in E in the context of a discussion of Article 8 ECHR where he held that “E’s wishes and feelings, as described above and written down by her in an attempt to control her treatment, are clear. They are not the slightest bit less real or felt merely because she does not have decision-making capacity. I agree with the submission of Mr Bowen QC and Mr Broach that particular respect is due to the wishes and feelings of someone who, although lacking capacity, is as fully and articulately engaged as E” (paragraph 127, emphasis added).
I would not want it to be thought, though, that this quibble in any way detracts from my respect for the actual decision that Peter Jackson J took on the facts of this case which was a model of best interests decision-making.
Disclaimer: insofar as they relate to the Law Commission’s provisional proposals, the views expressed here are expressed in my personal capacity (being now a consultant to the Commission’s project on Mental Capacity and Deprivation of Liberty).