By Celia Kitzinger with Claire Martin, Thursday 29th April 2021
Editorial update: The judgment has just been published on BAILII today (16th June 2021) and is available to read here: https://www.bailii.org/ew/cases/EWCOP/2021/39.html
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The person at the centre of this case (COP 13718293) is a 53-year-old woman we can refer to as ZA. She has been in hospital for the last 25 weeks with a chronic non-healing diabetic ulceration on her right foot and bone infection (osteomyelitis). There is no medical dispute but that, from a purely surgical perspective, amputation is the right thing to do.
ZA is adamant she doesn’t want amputation of her leg. She told the agent instructed by the Official Solicitor: “if I die, I die. We all die sometime”. When talking about people who have only one leg, she said, “I don’t want to be like that” and visibly shuddered. If her leg was amputated against her will that would be (she said) “horrible” and she would be “angry and distressed”. She repeatedly says that she wants to leave hospital and go home.
Without amputation she’s likely to die within 6-12 months, but would be able to return home to her husband and adult son – although there is some concern about “revolving door” or “cyclical” readmissions to hospital with sepsis and complications, which is what has been happening recently (11 hospital admissions since 2016). She’s not in any pain because she has diabetic neuropathy (loss of sensation in her feet), and she is able to move around – albeit with difficulty and contrary to medical advice – using her stump and holding on to furniture. She is refusing a wheelchair.
With amputation she could live 5-10 years or more (depending on her level of compliance with diabetic medications, which is variable) and she’d need a lot more support with activities of daily living. It’s not certain she’d be able to return home after surgery, since this would depend on the level of care that she’d need. She might have to go to supported living. It’s unclear whether or to what extent she’d be able and willing to use a wheelchair. Her current view is: “I don’t want to be in a wheelchair. I’m not that person.”
If ZA has the mental capacity to make her own decision about amputation then the court cannot decide on her behalf: she would be free to make her own choice in accordance with the well-established principle of self-determination. Competent adults have the right to refuse medical treatment – for good reasons, bad reasons, or no reasons at all – even if that refusal will obviously be followed by their death.
There is a presumption of capacity in law (s. 1(2) MCA) and this is especially important for people, like ZA, who have impairments in the functioning of their mind or brain. ZA has chronic schizophrenia, cognitive impairment secondary to her schizophrenia, and (due to her infection) delirium. But mental impairments and mental incapacity are not synonymous – as famously demonstrated in the classic case of Re C [1994] 1 All ER 819, a 68-year-old man with chronic paranoid schizophrenia who developed gangrene in his leg and was found to have capacity to make the decision to refuse treatment.
Some previous assessments, dating back to 2019, did find that ZA had capacity to make her own decision – and it was because she has been deemed capacitous to refuse amputation (and did refuse) that surgery has not been done before now.
So, the question before the court was first whether there was sufficient evidence to displace the presumption that ZA has capacity to make her own decision about amputation, and second (if she is deemed to lack capacity) whether or not amputation is in ZA’s best interests.
The application was brought by the Trust – with Helen Mulholland as counsel – who sought a declaration that ZA lacks capacity to make her own decision about amputation, and that amputation is in her best interests.
ZA’s family (her husband and son) are not parties to the case but have been fully consulted (and her son was present in court throughout). They had initially opposed amputation, at a best interests meeting in late 2019. They are still very concerned about the impact of forcing her to have amputation against her will and worried about the sense of “betrayal” she might feel, but they do now support the Trust’s application.
Emma Sutton acted for ZA as litigation friend (via the Official Solicitor). Her position at the beginning of the hearing was that “the Official Solicitor is unable at this stage to agree with the application before the court and will consider her position following the oral evidence”.
The hearing
We didn’t meet ZA or her family in court. The hearing began an hour after the listed time because the judge spoke with ZA before members of the public were admitted. We were also excluded from court for some time after the lunch break until ZA’s husband and son had given their evidence, since they had asked to do so in private.
The hearing took place over two days (22nd and 23rd April 2021) before Mr Justice Cohen. As members of the public, we heard evidence from five doctors: (a) the treating diabetologist (b) the consultant surgeon who would actually carry out the amputation if it was authorised by the court (c) Mr Scurr, a consultant surgeon acting as expert witness (d) Dr Rebecca O’Donovan, a psychiatrist acting as expert witness and (e) the treating psychiatrist. (The Transparency Order permits naming of the independent experts but we cannot use the names of the treating clinicians.) The advocates summarised the family’s evidence in their closing submissions. What follows is not a complete report of what everyone said, but rather what struck us as salient or interesting. (Text is by Celia except for the section about Dr Rebecca O’Donovan, which Claire wrote.) Witnesses addressed questions about capacity and about best interests, as well as technical medical issues we have largely omitted here (e.g. why above-knee rather than below-knee amputation).
(a) Treating diabetologist
He described his involvement with ZA over time and was clearly concerned to convey that he did not think she had the mental capacity to make her own decision about amputation. In one conversation with her, he said, “I explained that without surgery she would die and she told me clearly that she did not want to die. She looked up at me and made eye contact and stated, ‘I don’t want to die’” [1].
This exchange took place under cross-examination from Emma Sutton:
(b) Consultant surgeon
Despite the Trust’s view that amputation was in ZA’s best interests, not all of the individual clinicians in the Trust were of this view. The surgeon who would actually carry out the amputation did not, in fact, agree. “The quality of life is not one she’d want,” he said. “She could go on for any number of years, and whether she would thank us for that I don’t know. In his view, sending her home with an advance care plan (to prevent ‘revolving door’ readmissions for future sepsis) would be preferable.
He was, however, willing to carry out surgery if the court made a best interests decision that it should be done, and “technically it’s not a difficult issue at all to remove the leg”. There was some concern about restraint in order to get her into theatre at which point this witness, rather alarmingly, said that he would not plan to tell ZA in advance that she was going to have her leg amputated.
The surgeon also, said, on several occasions, that he didn’t feel ZA had any “joy” in her life – and he also worried about the burden for her family.
(c) Mr Scurr, expert witness, consultant surgeon
This expert witness was also an expert witness in an earlier amputation case – Wye Valley NHS Trust v Mr B [2015] EWCOP 60. In that case, Mr Justice Peter Jackson decided that it was unlawful to amputate Mr B’s leg in the face of his (non-capacitous) opposition to amputation – despite the fact that Mr Scurr said that Mr B would be likely to die within a few days without amputation. It was pointed out to him by one of the lawyers in this hearing: “You expected him to succumb within a week without amputation and I think he lived 18 months.” Mr Scurr explained that this was because, in Mr B’s case, he had made his diagnosis based only on the medical records. He had, however, examined ZA and so was more confident in his view that her life expectancy without amputation would be no more than a year, with the proviso that “if she got a serious infection that didn’t respond to antibiotics she could be dead within days”.
“There is no prospect of the ulcer healing – ever. It’s difficult to manage. It smells. It will get infected and will eventually cause systemic infection. So clinically amputation is the right thing to do.”
He was clear, however, that although amputation was “clinically … the right thing to do”, this was not the same as a best interests decision for ZA. “Surgery should not simply prolong life, it should enhance it”. A best interests decision needs to take into account the person’s own wishes. “When I went to see her,” he said, “she was quite lucid. She knew where she was and what was happening, and she knew she didn’t want an amputation.”
Mr Scurr answered some questions from the judge related to the problem of “revolving door” admissions to hospital if the decision was made to allow ZA to return home without an amputation. He said: “it would be wrong to take her to intensive care – it’s a terrible place to be. She’s made the decision not to go down that route. We have patients when they’ve had enough, they’ve had enough”. He suggested there should be no active treatment. “When she starts to go downhill, encourage her to stay at home or move to a hospice until she dies.”
“We are now in a situation where we can prolong life almost indefinitely. The question must be asked: is this the right thing to do? At the end of the day, we have a responsibility to the patients – to be kind to them, and to take into account their feelings and their relatives’ feelings.”
At the end of his evidence. he said to the judge, “I’m sorry to leave you with such a problem.” The judge replied, “That’s very kind of you, thank you. It’s my job”.
(d) Rebecca O’Donovan, expert witness, psychiatrist. By Claire Martin
I attended only Day 2 of the hearing (23 April 2021) ) and was able to observe witness statements from Dr O’Donovan, forensic psychiatrist and expert witness, as well as the treating psychiatrist for ZA.
Dr O’Donovan was an expert witness for the Official Solicitor and she centred her evidence on the past, current and potential future mental health of ZA. It was clear, as noted, that ZA has experienced, over many years since a teenager, varying levels of mental ill-health and hadn’t functioned independently for, I think, at least fifteen years (we were told about episodes of significant distress since 2008).
Turning her attention to the possibility of amputation, Dr O’Donovan said she was “concerned about gaps in the care plan”. She was referring to the treating team’s plan for the process of informing and discussing with ZA that the amputation would go ahead (if this were to be the judgment), and the possibility of restraint and how this would be managed. She expressed a concern about cardio-pulmonary arrest being a risk if restraint was not handled correctly: “It would need a lot of thinking about: who? How? How will hands be put on? Graded stages”
She also talked about the potential impact on ZA, were she to feel that her family had ‘colluded’ with the plan against her wishes. Her family are her closest relationships.
However, Dr O’Donovan also expressed a view, perhaps not dissimilar to ZA’s treating surgeon’s, that, if the judge authorised amputation, then not a ‘huge’ amount of discussion ‘would be best’, because “telling her long in advance could cause distress”. Dr O’Donovan had clearly looked meticulously at ZA’s historical mental health records (such as Mental Health Act detentions) and was able to draw on those to hypothesise about ZA’s likely reaction to being subjected to treatment that she did not want.
Dr O’Donovan was very clear that ZA, over the years, has stated clearly (including when deemed to have capacity for this decision) that she did not want to have an amputation of the leg. She explained that, although ZA has cognitive impairment secondary to her diagnosis of schizophrenia, she would clearly “know that her leg is missing and the emotional and psychological impact of that should not be underestimated”. She offered a counter-view that, “due to the negative symptoms of schizophrenia … she has blunted affect … schizophrenia might protect her [from emotional distress] to some degree”. She based this latter view on the fact that, when ZA had had some toes removed, she ‘settled quickly’ despite having been very clear that she did not want them removed. The judge seemed not wholly convinced:
“We are talking about something that is so different. Her toes are one thing – how can we say that, because she wasn’t so distressed after her toes, she would not be distressed by [the removal of] her leg.”
Dr O’Donovan’s response rested on what she described as ‘significant negative symptoms of schizophrenia’ including marked lack of motivation and apathy. I wondered about this – ZA has experienced this mental health condition for a long time, though has currently been in hospital for 8 months and has a delirium. I was not sure how she was functioning in terms of her engagement with the world over the past several years, but I found myself thinking that her current inpatient hospital experience could account for, or at least contribute to, her negative symptoms, as much as her mental health diagnosis.
When discussing ZA’s understanding of death – in relation to her capacity to understand and weigh up the decision about amputation – Dr O’Donovan said:
“She does have some insight into death. For me, she’s talked about seeing people with one leg and wouldn’t want to live with that. She can’t provide depth though – what would be good or bad about that. Does she connect to the finality of death? The impact on relationships? I don’t get the sense that she’s thought this through and worked through those endings. Her capacity to do that is very limited.”
It suddenly struck me that ZA, who is currently in hospital with a delirium and infected bones of her foot, is, seemingly, being held to a much higher bar than the rest of us would be (when our capacity is not in question) in terms of needing to demonstrate an understanding of what death means to her. This feels worrying to me – at a time when we are least likely to be able to demonstrate (our previous, capacitously held, wishes) that we can understand, retain, weigh up and communicate a decision about self-determination, we need to be more able to do so. It does seem to be a huge missed opportunity that, over the years, clinicians have not discussed an ADRT with ZA when she has been assessed as capacitous to refuse amputation.
Dr O’Donovan also talked in depth about potential risk of depression and suicidality, should the amputation go ahead against ZA’s wishes – and described a situation where, should this come to pass, ZA would ‘not be able to act on them’. Counsel for ZA, Emma Sutton incisively noted: “Having suicidal thoughts and not being able to act on them – that could be very hard for her”.
This was discussed further in relation to ZA needing to use a wheelchair after an amputation and how she might feel about that and adjust to it. Dr O’Donovan explained that ZA would find it very hard to learn how to operate a wheelchair – she described ZA’s results on the Addenbrooke’s Cognitive Examination (a cognitive screening tool developed principally for use in the differential diagnosis of dementia) as being ‘poor’ for visuo-spatial functioning. Over the course of her evidence Dr O’Donovan referred to ZA’s cognitive function as ‘declining for many, many years’. Helen Mulholland asked Dr O’Donovan if she had looked at cognitive assessments from before. I got a bit lost here. Dr O’Donovan reverted to discussing ZA’s negative symptoms of schizophrenia, rather than cognition per se (although of course, at any one assessment, they will be interlinked).
ZA had a MMSE (Mini-Mental State Examination) in 2011 and got a score of 22/30 suggestive of ‘mild cognitive impairment’. Scores below 25 do suggest possible cognitive impairment, and warrant further examination. MMSE is a widely used, very short, screening test (it is used less often now since it has become copyrighted). In a meta-analysis of its utility in 2009, here, the authors concluded: “Provisionally, the MMSE had very limited value in making a diagnosis of MCI [Mild Cognitive Impairment] against healthy controls.”
It’s a blunt instrument, and can be helpful in providing a pointer to the need for further, detailed neuropsychological testing and clarification of cognitive abilities over time. I am not sure whether ZA has had more extensive neuropsychological assessment over the years. It is likely that she will have repeated MMSE and/or Addenbrooke’s assessments. Even though we did not have reports of more extensive testing, the expert witness and the treating clinician both stated that ZA’s cognition had declined over the past decade or so.
Dr O’Donovan completed the Addenbrooke’s assessment with her this year, though we did not hear about the overall results. That test in itself is a screening test, covering domains of attention, orientation, memory, language, visual perceptual and visuospatial skills. She indicated that ZA did not do well on the test – though she also has a delirium which will mean that it is not possible to accurately assess her ‘true’ cognitive abilities , as her treating psychiatrist later stated in her testimony:
“I am not able to say how much delirium is contributing to her cognitive impairment and to what extent cognitive impairment is reversible. Following each episode of delirium, there can be long-term consequences for cognition. This episode is long. It is difficult to accurately assess [ZA’s] understanding and cognition …. If the delirium could be reversed then we could assess the long-term consequences of the delirium on her cognition.”
So, it’s a complex picture in terms of ZA’s ‘true’ cognitive status – but it is certain that delirium makes it impossible to accurately assess right now. ZA’s treating clinician was clear that, should the delirium clear, ZA’s cognition could improve. However, the medical view seemed to be that the only way her delirium would clear would be via amputation.
This is arguably academic though. Over the years ZA has been very clear about her wishes: she does not want her leg amputated. I did feel, at points, that there was a hint of a suggestion that, because someone has a diagnosis of schizophrenia, there is automatically a question mark hanging over whether that person can reasonably hold any view about amputation (and presumably other decisions too)– though this hint would perhaps only be put to the test if that person were to disagree with the clinical team’s view. I might be wrong about this – though as a society, I would argue that we tend to the paternalistic when it comes to self-determined health decisions.
(e) Treating psychiatrist
Given the fact that the Trust surgeon had apparently planned to amputate ZA’s leg without informing her in advance, this was the first issue the treating psychiatrist (who had known ZA since 2018) was asked to address. She said, “To me it feels very inhumane not to tell her that surgery is about to happen. It doesn’t sit comfortably with me as a human being seeing her as another human being.”
Although both the treating psychiatrist and Dr O’Donovan agreed that ZA lacks capacity to make her own decision about amputation, they disagreed about what causes this lack of capacity: for Dr O’Donovan it is the cognitive deficits associated with ZA’s schizophrenia, whereas for the treating psychiatrist it’s the delirium associated with the infection from her leg. Nonetheless, the treating psychiatrist saw ZA as lacking capacity:
“I’m not sure she understands the finality of death. Once you start that conversation about dying, it’s very difficult to explore with her what she thinks and feels about that. But whenever we have conversations about her life and her future there’s no caveat like “I might not be around by then”. For a patient who understands that death is final, you’d expect that to trickle into conversation.”
Asked about whether or not she thought amputation was in ZA’s best interests, she described it as being a decision “on a knife edge”.
(f) Family
Members of the public were excluded from court while ZA’s husband and son gave their evidence (they didn’t want us there), but in their closing submissions the two barristers gave some information about what they had said.
“The family are torn. They would like to prolong P’s life. They would like her to live as long as possible, but they don’t want her to suffer an additional mental health burden and they don’t want her to suffer feelings of betrayal. They are finding it very difficult. But on balance their submission tips in favour of amputation.” (Mulholland, counsel for the Trust)
“ZA’s family have an entirely understandable but irreconcilable wish for her to live as long as possible and for her to be happy. I was struck by the focus from the family on wanting her to be happy.” (Sutton, counsel for ZA via the Official Solicitor).
Emma Sutton also said the Official Solicitor was concerned about ZA feeling “betrayed” by her family who she may see as having colluded with doctors forcing her to have her leg amputated against her will. She pointed out that ZA’s son had raised this concern on a number of occasions.
A best interests decision should have been avoided
By the end of the hearing it seemed fairly clear that the judge will declare that ZA lacks the mental capacity to make this decision for herself. Plenty of evidence was provided by the witnesses to rebut the presumption of capacity – although whether this is caused by delirium or by progressive cognitive deficits is disputed. Intervening into the closing summary from Helen Mulholland as she rehearsed the evidence for ZA’s lack of capacity, the judge said that, having talked to ZA himself and formed a “layman’s opinion” of her capacity in relation to this decision, “I think you’ll find you’re pushing on an open door”.
Although assessments since November 2020 have found ZA to be lacking capacity, her position on amputation remains as clear as it was when she was deemed to have mental capacity to make this decision. If her foot were amputated “then it’s not worth living”. She would “rather die with her foot and dignity than have the amputation”.
So, the decision is a best interests one, meaning that ZA’s views are taken into account but are not (as when she had capacity) determinative.
From my perspective, listening to ZA’s history of engagement with the medical professionals involved in her case, this is quite simply a completely outrageous position for ZA to be in. It could and should have been avoided.
In her closing summary, Emma Sutton said: “It is somewhat regrettable that ZA did not make an advance decision to refuse treatment relating to the amputation If she’d done that, this application would not have been necessary.” I consider “somewhat regrettable” to be an understatement under the circumstances. Doctors have been discussing amputation with ZA for nearly five years and she has repeatedly clearly and consistently refused it. Earlier refusals were made at a time when she was deemed to have the mental capacity to make her own decision: in 2016, again in 2019, and twice in 2020. Given ZA’s diagnosis of schizophrenia, and given its predictable effects on her cognitive capacity in future, combined with the obvious risk of delirium from infection in the future, it must have been apparent to them, with a modicum of thought, that there would come a time when ZA would lose the mental capacity to make her own decision about amputation. This is exactly the sort of situation in which clinicians should be supporting people to make advance decisions to refuse treatment (ss. 24-26 Mental Capacity Act), so that loss of capacity does not reopen the whole question of whether or not treatment should be provided. It is utterly unacceptable to simply wait for a capacitous patient to lose capacity and then to attempt to enforce upon them the very treatment they refused when they had capacity to do so. And although Emma Sutton’s formulation of the problem seems to put the onus on ZA, it is of course the treating clinicians upon whom the responsibility lies. They should have alerted her to the possibility of making a legally binding advance refusal of amputation, and supported her to do so – or ensured that she had access to people who could so support her. (Note: Readers alerted by this blog to the importance of advance decisions refusing treatment for themselves or those they care for can get full and accurate information about how to make these advance refusals from the charity, Compassion in Dying which also provides an online template and a telephone information line.)
Official Solicitor – friend or foe
I’ve been concerned about the role of the Official Solicitor for a long time. It is often the case that the litigation friend (usually the Official Solicitor) appointed to represent the person who lacks capacity argues the opposite of what that person says they want. We’ve published several blog posts based on our observations of cases of this kind – explored most starkly in the story of “Mr G” (here) who wanted to leave the brain injury unit in which he was detained, and return home. He told the court:
“I am incarcerated in a building against my will and which prohibits me having my own volition. The removal of my free will is inequitable, unjustifiable and entirely wrong in my view”
Having been deemed to lack capacity to make his own decision about where to live, the Official Solicitor, purportedly representing him in court, argued that Mr G should not return home – an argument directly contrary to Mr G’s wishes.
It seems to me that vulnerable people are penalised when the Official Solicitor elects not to represent P’s own wishes, but rather takes a position about what P’s best interests are – which may be contrary to P’s wishes. It means that P’s wishes are not fully represented in the way that other people’s views in court are – they are filtered through a ‘best interests’ prism. There is surely a case for advocates to represent P’s wishes as effectively as possible, as would be the right of any other lawyer’s client.
In my academic research with the Coma and Disorders of Consciousness Research Centre, I’ve been horrified by the extent to which the position of the Official Solicitor (at least until very recently) has been to weigh the preservation of life very heavily in the balance against evidence that the person himself or herself would not have wanted to be maintained in their current (or likely future) condition.
“Ordinarily, a lawyer who submitted entirely the opposite of what she knew her client to wish would face, at best, professional sanctions, and at worst, a claim for negligence. In the Court of Protection, however, current practice would tend to suggest that there are circumstances where the lawyer must indeed argue against their client’s wishes. It is ironic and is (or should be) a cause for concern that they are doing so in relation to the most vulnerable of clients, and do so on the basis of instructions given by a person—a ‘litigation friend’—contending that they are acting in the best interests of the individual concerned.” (Ruck-Keene A, Bartlett P, Allen N 2016. Litigation friends or foes: Representation of P before the Court of Protection. Medical Law Review 24(3): 333-359 (open access))
Against this backdrop it was reassuring to see the thorough-going and committed attention paid to ZA’s past and current wishes by Emma Sutton, who had been instructed for ZA via the Official Solicitor, Sarah Castle – who was (she said) “directly involved in this case”.
At the beginning of the hearing the Official Solicitor did not agree with the Trust’s application that amputation was in ZA’s best interests, and wanted to consider her position after hearing the evidence.
At the end of the hearing, in her closing summary, Emma Sutton acknowledged that it was a “finely balanced” decision but came down on the side that amputation was NOT in her best interests – most especially as it went counter not only to her current wishes and feelings, but also to her clearly expressed capacitous decisions as recently as last year. The damaging psychological consequences of treating ZA against her will had been acknowledged by all parties, and could include a painful sense of betrayal and damage to her relationships with her husband and son. It’s also not clear that, after amputation, she could return to the life she had before: she’d be more significantly disabled as an amputee, and may not even be able to return home.
She quoted some of the most powerful statements that judges have made in recent years about the weight to be attached to P’s self-determination and autonomy when set against prolongation of life.
“I have concluded that as I am sure that if Mr Briggs had been sitting in my chair and heard all the evidence and argument he would, in exercise of his right of self-determination, not have consented to further CANH [Clinically Assisted Nutrition and Hydration] treatment that his best interests are promoted by the court not giving that consent on his behalf. This means that the court is doing on behalf of Mr Briggs what he would have wanted and done for himself in what he thought was his own best interests if he was able to do so”. Charles J at para 129-130, Briggs v Briggs & Ors [2016] EWCOP 53
“In a real sense this is not a case about choosing to die, it is about an adult’s capacity to shape and control the end of [their] life. This is an important facet of personal autonomy which requires to be guarded every bit as jealously for the incapacitous as for the capacitous. (Hayden J at para 47, Barnsley Hospital NHS Foundation Trust v MSP [2020] EWCOP 26).
Judgment will be handed down at 3pm on Friday 30th April and we will post a link to it from this blog.
Celia Kitzinger is co-director (with Gill Loomes-Quinn) of the Open Justice Court of Protection Project. She tweets @KitzingerCelia
Claire Martin is Consultant Clinical Psychologist, Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust, Older People’s Clinical Psychology Department, Gateshead. She is a key contributor to the Project and as published many blog posts about hearings she’s observed (e.g. here and here). She tweets @DocCMartin
Note: We’ve previously published a number of blog posts concerning other amputation cases we’ve observed:
- Unwanted amputation and its likely aftermath by Monica Young
- Amputation: A best interests decision for the surgeon by Carrie Hanman
- A Permissive Order For Amputation Contrary to P’s Wishes by Adam Tanner
[1] These quotations are taken from notes made at the time of the hearing and are as close to what was said as I could make them, given that we are not allowed to record court hearings. They are unlikely to be entirely accurate.
Photo by Gemma Evans on Unsplash
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