Unwanted amputation and its likely aftermath

By Monica Young, 23 December 2020

Editorial note: You can listen to Nageena Khalique QC, counsel for P talking about this case in a YouTube video: click here. Her account of this case lasts for about four minutes starting at 18:50 minutes into the recording.

The hearing that I attended on Thursday 17th December 2020 (Case: 13693467 before Mr Justice Mostyn) concerned a gentleman in his early 70s who had been admitted to hospital (against his stated wishes) as a result of painful gangrene in his foot. The vascular surgeon from the hospital had advised him that the foot would need to be amputated, to avoid the risk of developing life-threatening sepsis. The gentleman, Mr Smith (not his real name), refused the surgery and has been saying repeatedly that he would like to go home.

If Mr Smith has the mental capacity to make his own decision about amputation, then he is free to refuse surgery (whatever his reasons for doing so).  The first question then was whether or not he had capacity to make his own decision – and only if he does not can professionals then make a best interests decision as to whether surgery is in his best interests.  

A capacity assessment around ten days earlier, carried out by a vascular doctor and a community psychiatric nurse (CPN) who is also Mr Smith’s Care Coordinator, had concluded that Mr Smith lacked capacity to make a decision about amputation.  

It is a fundamental principle of the Mental Capacity Act 2005 that “A person must be assumed to have capacity unless it is established that he lacks capacity” (1(2), MCA) so the burden of proof is on those who claim (as his treating clinicians do) that Mr Smith lacks capacity to make his own decision.  It is also an underlying principle of the Mental Capacity Act that “A person is not to be treated as unable to make a decision merely because he makes an unwise decision” (1 (4) MCA).

At a Court of Protection hearing on 14^th December 2020, it had been agreed to instruct an expert witness, a Consultant Forensic Psychiatrist, to provide an independent report relating to both capacity and best interests.  By the time of this hearing, she had submitted her written evidence (which public observers did not see) and was also in court to give evidence and be cross examined on it – as were Mr Smith’s Care Coordinator and his treating vascular surgeon.

Capacity

Mr Smith has severe paranoid schizophrenia which makes it impossible for him to understand what the cause of his blackened foot and toes is, or what the proposed treatment would entail.  His schizophrenia has caused him to believe that his painful and blackened foot/toes are not the result of a medical issue such as gangrene, but in fact the result of a malevolent individual who controls his body, movement, and pain. Mr Smith believes that his symptoms are caused by a gadget that is being controlled by his ex-neighbour. As a result, Mr Smith does not believe that amputation is necessary.  If the police were to arrest his ex-neighbour and prevent him from causing this harm, then his foot would return to normal.

It was agreed that there is sufficient evidence to rebut the presumption of capacity in this case and the parties had agreed before the hearing that Mr Smith lacked capacity to make decisions regarding his medical treatment.  This meant the court, specifically Mr Justice Mostyn, had to determine whether the amputation was in Mr Smith’s best interests. 

Best interests

At the beginning of the hearing, the applicant Trust (represented by Conrad Hallin of Serjeants’ Inn Chambers) took the position that below-knee amputation is in Mr Smith’s best interests.  This view was shared by the Trust that provides psychiatric care to Mr Smith, who were the second respondents also instructing Conrad Hallin.  

Acting on behalf of Mr Smith, Nageena Khalique QC (also of Serjeants’ Inn Chambers) stated that the Official Solicitor had not yet come to a settled view and wished to reserve her position until the evidence had been tested, There was, in particular, a concern about acting contrary to Mr Smith’s wishes.

The physical implications of amputation or no amputation were laid out quite clearly by the vascular surgeon. Amputation would mean no gangrene and likely recovery, albeit as an amputee. No amputation would mean a high risk of sepsis and death within 2-3 weeks. However, when considering best interests the court must take into account not only the clinical considerations but also the wishes and feelings of the protected individual, which extends to the psychiatric effect that the amputation would have. This is where I found the hearing to be the most interesting.

Two aspects of weighing up Mr Smith’s best interests: (a) how to balance sanctity of life and Mr Smith’s wishes not to have the amputation in arriving at a best interests decision; and (b) how to assess and take into account the likely effects of having amputation against his will on Mr Smith

(a) Sanctity of Life v. Mr Smith’s wishes. 

Counsel for P indicated that it was a finely balanced decision between amputation or no amputation, but I struggled to see how the balance between life or death could be finely balanced. To me it seemed quite simple:  the sanctity of life should prevail. Because why would it be better to die?  But that then opens up a big question about the end of life which is far more complex and philosophical. As counsel for the applicant very aptly said, ‘there are no very good outcomes in this case.’

The extent to which treatment should be given, contrary to Mr Smith’s explicitly stated wishes, is a difficult question to determine. The law requires the non-capacitous individual’s views to be fully taken into account by the judge when making a decision regarding treatment. Section 4 of the Mental Capacity Act 2005;

(6) He must consider, so far as is reasonably ascertainable—

(a)the person’s past and present wishes and feelings (and, in particular, any relevant written statement made by him when he had capacity),

(b)the beliefs and values that would be likely to influence his decision if he had capacity, and

(c)the other factors that he would be likely to consider if he were able to do so.

There is then a balance to be struck between affording the individual’s wishes adequate weight and ensuring that the individual’s right to life is fully respected. The question of how much weight should be afforded to an individual’s wishes was discussed at length in the case of Re N [2015] EWCOP 76, where Hayden J stated that: 

Where the wishes, views and feelings of P can be ascertained with reasonable confidence, they are always to be afforded great respect.  That said, they will rarely, if ever, be determinative of P’s ‘best interests.  Respecting individual autonomy does not always require P’s wishes to be afforded predominant weight.  Sometimes it will be right to do so, sometimes it will not.  The factors that fall to be considered in this intensely complex process are infinitely variable e.g. the nature of the contemplated treatment, how intrusive such treatment might be and crucially what the outcome of that treatment may be for the individual patient.  Into that complex matrix the appropriate weight to be given to P’s wishes will vary.  What must be stressed is the obligation imposed by statute to inquire into these matters and for the decision maker fully to consider them.  Finally, I would observe that an assessment of P’s wishes, views and attitudes are not to be confined within the narrow parameters of what P may have said.  Strong feelings are often expressed non-verbally, sometimes in contradistinction to what is actually said.  Evaluating the wider canvass may involve deriving an understanding of P’s views from what he may have done in the past in circumstances which may cast light on the strength of his views on the contemplated treatment. (Para. 28 Re N [2015] EWCOP 76)

I very much agree with the above passage, which identifies the need for balance but also highlights that the individual’s wishes should not always be determinative. There are two situations where I believe that the individual’s wishes should be less determinative. 1) Where the incapacitated individual is unaware of what would benefit their quality of life and 2) where the case involves crucial medical treatment, as I recognise the importance of following medical advice and assessing the medical impact on the individual. 

I believe that when an individual lacks capacity, it is difficult and potentially dangerous to afford them the autonomy which would be given to a capacitous individual. It is also incumbent in the Court of Protection’s role to protect vulnerable individuals, and this can mean it has to adopt a paternalistic role when deciding upon matters. Where a person lacks capacity and will die without crucial medical treatment, I believe that the wishes and feelings should be considered by the court (as required by law) but that they should not be determinative as it is necessary for the court to adopt a more paternalistic approach. 

This is the situation which we have here with Mr Smith: he lacks capacity and so it is the court’s role to determine what is in his best interests. It is also the court’s role to consider Mr Smith’s wishes and feelings. Although Mr Smith had indicated to health care staff that he did not want the amputation, his wishes and feelings were more complex than this. There was quite a lot of discussion of the fact that Mr Smith has in the past accepted treatment where people made the decision for him and then informed him that it has to happen. During the hearing Nageena Khalique asked Mr Smith’s community psychiatric nurse: “Might it be that Mr Smith finds the magnitude of the decision he is faced with so overwhelming that he would get some relief from others making the decision for him?” to which she said yes. Then the psychiatrist expert witness said there was no evidence that P wants to die, but that he doesn’t believe that he would die if he doesn’t have the treatment. Therefore, this is not a case of simple refusal of treatment versus an application for treatment, and it would have been wrong for the court to view it this way.

(b) How would Mr Smith react to amputation contrary to his wishes?

When the psychiatric doctor gave evidence, the judge questioned why her report did not reach a conclusion about what would be in Mr Smith’s best interests. It became apparent throughout the doctor’s evidence that this was due to the fact that Mr Smith’s schizophrenia made it difficult to say how he would feel about an amputation which he had expressly refused.

The doctor and community psychiatric nurse both gave evidence about the possible psychiatric effects but neither could say exactly how Mr Smith would react. It might be the case that if the foot and toes are amputated that Mr Smith feels as though the person who he believes is tormenting him has been eliminated too. Or, he could feel enraged by the amputation which he does not feel is medically necessary. 

As the judge said though, “Loss of a limb could be quite psychologically disturbing, but when you put that in the scales against DEATH!”.  

There could be practical as well as psychological consequences though.  The psychiatrist reported that Mr Smith had said, “If this is done against my will, I won’t have anything to do with anybody”, which she understood to mean that he would refuse to see the Mental Health Team.  If that were to happen, then, she said, “his mental health will deteriorate to the extent he’s detained under the Mental Health Act and he’ll then have further treatment imposed upon him against his will.”  She also pointed out that there would be additional complications in terms of meeting his care needs – since psychiatric nurses (were he to be detained) are not physical health nurses.

Under cross-examination by counsel for the Trust, the psychiatrist acknowledged that although Mr Smith had said he didn’t want to go into hospital, actually now he is there he’s quite settled, and accepting of basic care and treatment, including antibiotics and pain relief.  His life after amputation could potentially be quite similar to the life he had before he went into hospital – he was not an active person, and spent most of the time sitting in a chair and watching TV.   And although he had stated that he would “rather die than have an amputation”, that was in the context of his personal belief that he will not die.

Counsel for Mr Smith, who by the end of the hearing had come to the view that amputation was in Mr Smith’s best interests, stated that there “may be an underestimation of his ability to recover”.  She referred to the fact that he “wasn’t excessively knocked off balance when his wife died” a few years ago, and also took the view that although he might find a nursing home or care home setting difficult at first, he might be able to enjoy a wider range of activities than he was able to engage in before, in his own home.  She also said that he is currently “at sub-optimal levels of anti-psychotic medication” and that a trial of increasing his medication, or trying alternatives, might also improve his quality of life.

Both counsel for Mr Smith and counsel for the Trust referred to the strong presumption in favour of preserving life. Counsel for the Trust stated this:

“The decision itself is not a happy one. Mr Smith may well have significant problems in his life, but the reality is that he has already had significant problems and that is not a reason to come to the view that his life is not worth living.  Mr Smith deserves to be allowed to live.” (Conrad Hallin).

What I learnt from the hearing

I was left feeling that the judge had ultimately made the right decision by stating that it was in Mr Smith’s best interests for the procedure to go ahead. I agree with the approach adopted by Mr Justice Mostyn, where the sanctity of life was favoured due to the fact that Mr Smith’s refusal was not a solid refusal and that there was evidence to suggest that he might come to accept the decision if it was made for him. As a result, I do not believe that there was a ‘fine balance’ between sanctity of life and Mr Smith’s wishes as the evidence came to suggest that in fact Mr Smith did not wish to die, favouring the order for amputation.

What resonated with me most from this hearing was the need to make decisions in complex mental health cases like this one where there is such a lack of certainty of the effect the judgment will have. It highlighted to me the seriousness of the responsibility which judges in Court of Protection cases hold – especially in this case where the decision, as counsel for the applicant described it, was essentially one of choosing life or death for Mr Smith.

I have had limited opportunities to contemplate the more philosophical questions surrounding life and death decision-making, and I believe that this case enabled me to find where I stand on quite a difficult point of discussion. I will be able to take this with me into my work, especially in the more common midwifery cases concerning fetal death that I deal with. I think that it will allow me to approach these cases with a new-found sensitivity.

I very much enjoyed watching this hearing as it allowed me an opportunity to really question the arguments being put and to get deeply involved in the analytical aspects of the case. I found myself going back to my law school days of picking apart a case and getting stuck in to the legal questions at hand. It was an incredibly stimulating and engaging experience overall.

Monica Young is a regulatory paralegal, specialising in fitness to practise investigations against nurses, midwives and other healthcare professionals. She tweets as @MonicaYoung_

Photo by Sandy Millar on Unsplash