Court of Protection upholds the right of a confused, lonely man to refuse treatment

13 October 2015 by

Empty-hospital-bed-300Wye Valley NHS Trust v B (Rev 1) [2015] EWCOP 60 (28 September 2015) – read judgment

The Court of Protection has recently ruled that a mentally incapacitated adult could refuse a life saving amputation. This is an important judgement that respects an individual’s right to autonomy despite overwhelming medical evidence that it might be in his best interests to override his wishes. The judge declined to define the 73 year old man at the centre of this case by reference to his mental illness, but rather recognised his core quality is his “fierce independence” which, he accepted, was what Mr B saw as under attack.

The issue in this case was whether it would be lawful for the doctors treating  Mr B, a diabetic with a severely infected leg, to amputate his foot against his wishes in order to save his life. He had peripheral neuropathy, a complication of diabetes resulting in reduced sensation in the feet. This can lead to the patient being unaware that they have damaged their foot, leading to ulceration and subsequent infection. In Mr B’s case, the inevitable outcome of foregoing amputation would be that he would shortly die of an “overwhelming infection”, quite possibly within a few days. If he were to have the operation, he might live for a few years.  Apart from suffering from a form of bipolar disorder, Mr B also had a long-standing mental illness that deprived him of the capacity to make the decision for himself. The operation could therefore only be lawfully performed if it were in his “best interests”.

Having visited Mr B in hospital to get a clearer understanding of his needs and wishes, as well as to explain to him the consequences of foregoing the surgery, the judge concluded that the operation would not be lawful.

The particular type of mental illness afflicting Mr B caused him to have religious delusions. He described hearing angelic voices that told him whether or not to take his medication.  Despite these being delusional, the court acknowledged that these religious sentiments were extremely important to him, and although the point did not arise for determination the judge approached matters on the basis that his Article 9 right to freedom of thought and religion “was no less engaged than it would be for any other devout person.” More significantly, the judge emphasised that

Religious beliefs are a matter for the individual and do not need to be mediated through organised religion.

The principles on which the Court of Protection acts in a case of this kind are to be found in the Mental Capacity Act 2005 and in a consistent line of authority built up during the past two decades and culminating in Aintree University Hospitals NHS Trust v James [2014] AC 591:

Every adult 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. Without consent any invasion of the body, however well-meaning or therapeutic, will be a criminal assault.

Whether or not a person has the capacity to make decisions for himself, he is entitled to the protection of the European Convention on Human Rights, specifically the right to respect for life under Article 2, the prohibition on degrading treatment under Article 3, and, as mentioned above,  the right to freedom of conscience under Article 9.

The guidance as to what constitutes “best interests” is given in the Aintree case. It is not a one-size-fits-all assessment:

the purpose of the best interests test is to consider matters from the patient’s point of view. Where a patient is suffering from an incurable disability, the question is whether he would regard his future life as worthwhile. As was made clear in Re J [1991] Fam 33, it is not for others to say that a life which a patient would regard as worthwhile is not worth living.

As Jackson J made clear, a conclusion that a person lacks decision-making capacity is not an “off-switch” for his rights and freedoms.  It was “obvious” that 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.

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.

During his visit to the hospital, the judge found that Mr B strongly opposed the operation. This is what he said:

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.

All this, reflected the judge, 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.” Even if the operation were an unmitigated success, the loss of his foot would be a continual reminder that his wishes had not been respected.

Further to that, his religious sentiments will undoubtedly continue and he will believe that the amputation was carried out against the Lord’s wishes.

Jackson J gave considerable weight to the possibility that, were he forced to undergo the operation, Mr B would not be able to return to any sort of independent life. By the time of this hearing he had been in hospital for 15 months and, given his multiple physical and mental difficulties, a discharge date could not be predicted. The best that could be hoped for is that he might be discharged to a care home or, more likely, a nursing home, which he clearly did not want.  The judge was sure that it would not be in his “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.

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  1. Judy says:

    I have family memebers with mental illnesses. I dread soemoen deciding that they have capacity to make decisions to refuse treatment which will then lead to their death. You’ll never be able to make another decision once you’re dead.

  2. I believe he has diabetes because of the medication he is forced to take. Perhaps this kind of case would not arise if forced treatment and illegal sedation were banned as per UN General Comment. It is a human rights violation to be forced treated. The angels would tell him that because noone on earth gives a damn. If he was not forced treated the angels would not have an opinion. If we had proper grown up debates about this, that would not seem such a strange scenario.He would be able to decide for himself. In scotland, even if you have capacity you are forced treated because there is a lot of money from forced treatment for the staff.

  3. Daniel Smith says:

    I’ve got mental health problems and frequently do stupid things…hope the judge knows what he is on about.

    1. JM says:

      right to do ‘stupid things’ is what being human is all about….it doesn’t mean you’re mental! and who defines stupid? bet plenty called galileo and many others ‘stupid’ amongst other things for building telescopes and the like…it’s all a matter of opinion and calling people anmes like mental and stupid is abusive in itself and shouoldn’t be tolerated….especially so as the name calling (well that came after in my case) to justify the far more serious abuse/ torture/ gang rape that came after….

  4. Juliet says:

    I wouldn’t have said that this was the triumph of “autonomy” over “best interests”. Apart from anything else, any decision made under the Mental Capacity Act 2005 must be made in the patient’s “best interests” – as far as I’m aware, “autonomy” doesn’t even feature.

    It seems to me as though this is a classic example of the judge being aware of the fact that a person’s best interests encompass more than simply their physical health. To have violence done to one’s deeply held personal beliefs is usually not in one’s best interests – even if it extends life.

    s4 of the Mental Capacity Act 2005, which deals with “best interests”, requires the person(s) making a decision on behalf of a person without capacity to take into account that person’s wishes and feelings, and the person’s beliefs and values that would have informed the decision had they had capacity.

    Autonomy is therefore to be considered when deciding what a person’s best interests are; if autonomy is not considered, then it’s unlikely that the decision will be in the person’s best interests – as it proved in this case. “Best interests” always wins – the trick is to figure out what they actually are.

  5. JM says:

    fact that it was dragged into court in the first place is a massive violation.

    and as far as hearing voices again…even DARPA now freely admits to the technology’s existence and that they are freely using…not only that but lot of other people have it to and the devices are extremely cheap and relatively easy to make…

  6. Gasparini, Adriana says:

    I find absolutely appalling that it is considered a human right to give credit to the angelic voices of a bipolar disorder patient and respect the feelings that such voices give him about life and death. I think this judgement is so far from human rights.

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