By Celia Kitzinger – 28th September 2020
It’s 4.30pm on Wednesday 26 August 2020 and I’m watching a young man (let’s call him Paul) with end-stage kidney failure speak in (virtual) court (Case no: 13634663) about his strong wish to stay alive – not least because of his love for his seven year old son: “he’s my whole entire world. He’s the reason why I get up in the morning. He’s the reason why I am still breathing”. At this moment, giving evidence to his legal representative, David Lock QC (appointed via the Official Solicitor), Paul is very clear that he wants to continue to receive haemodialysis because he wants a chance to live. He also wants to be placed on the list for a kidney transplant.
The problem for the Hospital Trust is that Paul often refuses haemodialysis – a treatment that he needs three times a week (taking 4 or 5 hours each time) to maintain his kidney function. Without it, he will die. He’s had 13 admissions to critical care due to his refusal to accept dialysis. When he’s refused, doctors have resorted to force. Counsel for the hospital trust (John McKendrick QC) says that “the levels of force involved have placed highly experienced clinicians at the boundaries of what they consider to be acceptable practice.” When efforts at persuasion fail, Paul is forcibly held down, sedated, intubated, and given a general anaesthetic so that he can be provided with dialysis.
Paul has been diagnosed as having an “emotionally unstable personality disorder” (also known as a “borderline” personality disorder) at the severe end of the spectrum. In his case, this is characterised by suicidal ideation and auditory hallucinations. He also has what the judge characterised as “an alarming, disturbing and very sad history of self-harming”. The diagnosis qualifies as ”an impairment of, or a disturbance in, the functioning of the mind or brain” under s. 2(1) of the Mental Capacity Act 2005 and causes fluctuations in his capacity to consent to, or to refuse, dialysis. According to his legal representative, “the ‘Well-Paul’ wants to live and is cooperative with his doctors” but when he is in mental health crisis, “the ‘Ill-Paul’ refuses treatment and says to the treating team that he wishes to disappear”.
“The position of the Official Solicitor, informed by Paul himself, expressing his views when he has capacity, is that the person Paul becomes when in mental health crisis is one he doesn’t have control over. He doesn’t want the decisions he makes when he lacks capacity to be respected. He doesn’t want to die.” (Counsel for Paul)
A doctor gave evidence about what she’d experienced in providing treatment for Paul some months earlier:
“It needed four people to restrain him. I explained to him that he didn’t have capacity to make the decision to refuse dialysis so we were going to give it in his best interests and we would sedate him to do that. He curled up in a ball in the top corner of the bed and pulled the sheet over his head. Two psychiatric nurses and two security guards held a limb each so that he couldn’t kick out. I got an injection into his upper arm and a cannular into his hand. He was shouting through most of it, ‘Leave me alone – I want to die.’”
In response to the judge’s (Mr Justice Hayden’s) observation that “it must have been hugely distressing for everyone involved,” the doctor replied simply: “It was awful. Everyone on the ward was very distressed”. The judge asked, “If you hadn’t done that, what would have happened?” “I can’t remember what his potassium levels were,” the doctor said, “but if we hadn’t done that, he would have had a cardiac arrest. Without dialysis, Paul will die.” Not only does Paul refuse dialysis: on some occasions he even deliberately consumes high-potassium foods (bananas and coffee) with the intention of raising his potassium levels to cause death.
The use of force has not been necessary in the past 26 days because Paul has accepted haemodialysis, but doctors were worried that this was about to change. This was an “urgent” hearing – apparently prompted by some of Paul’s recent behaviour: he’d “left hospital, went out on a bus, had a fit, and discussed self-harming again”. The doctors already have judicial endorsement of the use of force: it was decided by Mrs Justice Roberts at a previous hearing on 13 August 2020 that forced treatment was in Paul’s best interests. (The judgment seems not to have been published). But the Trust had already made another application to the Court of Protection (due to be heard in just six days time before Mr Justice Mostyn) asking for a declaration that it is not in Paul’s best interests to treat him against his wishes. So, the prospect of having imminently to provide forcible treatment (in accordance with Mrs Justice Roberts’ order) while awaiting endorsement (from Mr Justice Mostyn) of their own current position that forcible treatment is not in Paul’s best interests had led to this “urgent” application.
Counsel for the Trust said that the consultant was “hugely concerned” – not least because the risks associated with general anaesthetic include serious brain injury and death: “we feel we cannot continue in this situation” because “what we say is that it is not in Paul’s best interests to continue to receive intubation and anaesthesia to provide dialysis”. Nonetheless, at this hearing the Trust was seeking an interim declaration that it was in Paul’s best interests to treat him forcibly against his (non-capacitous) wishes, pending the forthcoming judgment from Mr Justice Mostyn in six days time, in response to their application that forcible treatment was not in Paul’s best interest.
Mr Justice Hayden began by questioning why this case was in front of him now, since “Mr Justice Mostyn is going to hear this case, not me”. And although the Trust had presented the case as relatively straightforward (essentially, to ‘hold the ring’ and confirm that Mrs Justice Roberts’ order should stand for the next six days), Mr Justice Hayden clearly found it a difficult and demanding situation. He said he was “being expected to endorse the continuation of an order which they [the Trust] say is not only not in his best interests but inimical to his welfare. This is an impossible situation to put a judge in.”
“I cannot think it is proper for me to sanction chemical and physical intervention between now and next Tuesday when the Trust tells me they no longer think it is in Paul’s best interests, and in circumstances where it is so injurious to his health that it might possibly kill him. So, I will have to resolve this if I can today”.
In addition to counsel for Paul and for the hospital Trust (and the treating clinician), other people in court included Paul’s parents, and representatives for the Trust providing psychiatric treatment (Katie Gollop QC), the junior counsel for the Trust (Fiona Paterson), and NHS Blood and Transplant (Peter Mant), though none of these was a party to the case (nor wished to be), and several pointed out that they had not received the bundle.
We heard from the doctor about attempts to persuade and cajole Paul into having treatments when he refuses (they are rarely successful) and about alternatives to general anaesthetic that had been tried with mixed success. There was some discussion of a medication called lokelma which helps to treat high potassium levels but which can’t substitute for dialysis (and which Paul apparently has refused to take). In the end, it appeared that restraint and general anaesthesia was the only way dialysis could be provided. So, was this in Paul’s best interests? It seemed a choice between two bad options.
According to Paul’s father, “the better of the bad options it seems to me is full sedation and treatment along with an integrated approach to Paul’s mental health treatment that will allow him to become compliant with the treatment regimes he needs”. It turned out that Paul’s kidney treatment has been provided in one place and his mental health care provided in another at some geographical distance. Mr Justice Hayden commented that he’d learnt from other cases that healthcare has become segmented into “silos” that “create barriers to treating patients holistically”. Paul’s father wanted “a proper multi-agency plan to address all the different challenges Paul has got”.
When Paul was sworn in to speak on his own behalf he came across as articulate, thoughtful and intelligent. He talked movingly about his relationship with his son and his desire to stay alive. He described cooking with the child, and watching funny animal videos together. When asked about the times when he refuses dialysis, he plainly felt embarrassed and ashamed. “I’m sorry for the drama I cause,” he said. “I don’t mean to. I do feel a little ashamed of how far I let things go. I wish there was a way I could try harder”. If he refuses dialysis in future when he is “overwhelmed” by his mental illness, does he want to be restrained and compelled to have it? He didn’t hesitate to say “yes”.
He was pushed on the question of whether he accepted the risk of serious brain damage as a result of sedation, intubation and general anaesthetic.
Having heard Paul’s views, and the arguments of his counsel, the position of the Trust remained that it was not in Paul’s best interests to undergo the high-risk procedures involved in treating him against his (non-capacitous) wishes.
Mr Justice Hayden disagreed. “That Paul wants to go on living, however parlous the circumstances, is pellucidly clear,” he said. In a short oral judgment, he said that the “present regime should be sustained” and he authorised continued physical and chemical restraint in order to enable dialysis, because “without it, death would probably follow within hours or days”.
“On the one hand there was death. On the other hand, there was hope, however compromised. For him, and for him as a parent, he would take the hope rather than the certainty of death. For some, the prospect of life with severe neurological damage would be an unattractive prospect, but I was satisfied that Paul was one of those individuals who are willing to take that risk. I cannot think of any circumstances in which I would go against his expressed wishes and feelings delivered with sensitivity, with care, and with intelligence.” (Mr Justice Hayden, oral judgment)
The ethical and practical dilemma faced by Paul and by the professionals charged with making decisions about his treatment is not unique.
Many people with fluctuating capacity know, when they are well, that they want certain treatments when they are ill – but when they actually become ill, they refuse those treatments. Rather than compel people to have treatments against their wishes, doctors will sometimes accept those treatment refusals. Here’s an example from the Mental Health and Justice Project:
“Many people with Bipolar say that often, when becoming unwell, they lose the ability to recognise that they need treatment or hospital admission. Delays in treatment and/or admission can mean the individual is left to become more unwell and, in many cases, act in a way which is damaging to themselves. An SBD [Self-Binding Directive] is an agreement, written by someone with Bipolar, with the help of their care team and, if they liked, their family/friends. It would explain what usually happens when they become unwell and what sort of treatment is generally helpful. Most importantly, it would aim to make sure that a person receives this treatment, even if they no longer have the ability to recognise that it is needed.”
These ‘self-binding’ advance decisions can include an advance request for coercive treatment in acknowledgement that at the time when the treatment is required (i.e. during an episode of illness) the person is likely to refuse it. The current legal framework in England and Wales makes this difficult to navigate as ‘advance consent’ and so – as in the case described here – the expression of wishes becomes, effectively, an advance statement which contributes to ‘best interests’ decision-making. For one discussion of the form that such a document might take, and how it could work in practice, check out this article about the Preferences and Advance decisions for Crisis and Treatment template. The independent Review of the Mental Health Act also looked at this issue in relation to advance consent for hospital admission (pp. 81-82) and suggested the government should consult about it.
The huge benefit, for people with fluctuating capacity, of making advance statements about their (capacitous) preferences for treatment – knowing that they are likely to refuse that treatment in times of crisis – is that it potentially increases their control and self-determination. Nobody can demand treatment from a doctor who doesn’t think it clinically appropriate and in the patient’s best interests. But where a treatment is the right one and the only obstacle is the patient’s (incapacitous) rejection of it, an advance statement of preferences could increase the likelihood that the person will get the help they know they need and that doctors can act with confidence in treating them contrary to their (non-capacitous) wishes. Having witnessed the distress of the doctor who restrained Paul and gave him treatment against his (non-capacitous) wishes, I think there would also be some comfort for treating teams in having a written statement from the patient that confirms that – despite currently rejecting treatment – the person would give consent to the treatment if they had capacity so to do.
For Paul, the outcome was the one he wanted – at least at time of capacity. In that sense it was an enhancement of his autonomy. But it fell short of granting him the autonomy to consent to treatment in advance of losing capacity. It was not up to him to consent in advance to treatment. That decision was not his. it was a best interests decision made by the court.
Celia Kitzinger is co-founder and co-director (with Gill Loomes-Quinn) of the Open Justice Court of Protection Project. She tweets @kitzingercelia
Photo by Karsten Winegeart on Unsplash
 All quotations are as accurate as I can make them given that they are hastily typed out during the hearing itself and hearings cannot be audio-recorded. They are unlikely to be word-perfect.
 This was described by counsel appointed by the Official Solicitor as a “somewhat uncomfortable” position since apparently Paul does have litigation capacity.
 Prior to the August application, the decision to compel treatment via physical and chemical restraint was “made by the clinical team and Paul’s father”, according to counsel for the hospital Trust. Mr Justice Hayden expressed surprise (“I raise an eyebrow at that”) and pointed out that he had issued guidance in January 2020 and it is “difficult to see how the pre-August treatment followed that guidance”. Indeed.
 The work draws upon this earlier work by Tania Gergel and Gareth Owen which can be downloaded as a pdf (click here)
17 thoughts on “Advance Requests for Restraint and Compulsory Treatment”
Great article Celia. Should be widely read.
Really interesting and difficult.
Fluctuating capacity. Clearly at times of crisis lacks capacity. An advance directive likely to help treating clinicians in restraint and GA. GA not without risks but rarer for bad outcomes.
Mental health disorder – not “curable” but can ameliorate condition. Gold standard would be a therapeutic community and/or dialectic behaviour therapy – probably tried. I would look into the NHS paying for a therapeutic community for him as a good chance to help. Also long term psychodynamic psychotherapy could help – in this complex case he should be assessed for all options – probably has. Also medications are often given for his disorder although not recommended overall – it would be worth seeing if he responds to mental health medications to reduce arousal at difficult times.
Overall decision correct but I appreciate the frustration clinicians feel. The sheer time and effort managing him will be extensive and tiring – yes doctors do fatigue with difficult patients and this can influence actions.
Often patients with his disorder can cause considerable negative reactions from care givers as they are seen to be manipulative and have ‘some control’ – crises can be labelled as ‘behavioural’ in origin.
We have a duty of care to provide him with dialysis when he lacks capacity despite the difficulties.
I don’t envy his clinicians.
It is really important that his clinicians get supervision and are fully supported in his care and that he have an extended team so that the responsibility is shared widely.
Just some thoughts
I also observed the hearing reported on here. Although I was excited by the opportunity to observe the Vice-President of the Court as a judge, I was disappointed only able to observe the first few hours due to prior commitments. But there were two things that struck me in particular.
First, I found observing Mr Justice Hayden to be an absolute pleasure. He balanced a thorough and methodical exploration of the facts of the case with utter sensitivity and respect for the participants, especially P. I was left feeling positive about the Court of Protection and confident in the legal system that I had observed. In that moment I truly felt the value of observing open justice and I hope to encourage others to do the same. I was not surprised to learn that in his judgment Mr Justice Hayden respected the views of P as he had given them in court, when he was not in mental health crisis and appeared to be making a capacitous decision about what he wanted to happen in future. P had expressed the clear wish to be treated – even if this necessitated restraint – when he was in periods of mental distress, as he did wish to stay alive. The judge made it completely clear that he did not feel able to make a different decision after having heard the wishes of P.
The second thing that struck me was hearing from the Dr’s evidence the horror of restraining P, for both P himself and hospital staff. I have only observed a small number of hearings so far in the Court of Protection, but the theme of trauma caused by restraint and compulsory treatment of incapacitated patients is already a heavily reoccurring theme (see my earlier blog post here https://openjusticecourtofprotection.org/2020/08/18/a-patient-with-severe-and-enduring-anorexia-nervosa-the-need-for-a-declaration-and-the-capacity-to-make-a-decision/). Restraint is recognised as a negative experience for both patients and for staff members, causing patients and staff to feel distressed, fearful, angry and frustrated (1). Nevertheless, it can be a ‘necessary evil’, when used as a last resort (2). Restraint may be the only way to administer life-sustaining treatment – the tube-feeding of an anorexia nervosa patient or the administration of life-saving dialysis. Although undoubtedly unpleasant, without restraint the likelihood of death for such patients becomes high, and thus in some cases restraint becomes an ugly lifeline for patients that must be accepted where the patient does not wish to die.
(1) Bigwood, S & Crowe, M (2008) ‘It’s part of the job, but it spoils the job’: A phenomenological study of physical restraint. International Journal of Mental Health Nursing, 17, 215-222.
(2) Wilson, C, Rouse, L, Rae, S, Ray, MK. (2017) ‘Is restraint a ‘necessary evil’ in mental health care? Mental health inpatients’ and staff members’ experience of physical restraint’, International Journal of Mental Health Nursing 26(5), 500-512,
I have known detained patients clearly say they want to be restrained to stop self-harm at the time it occurs – and alternatively people actively choosing sedation over restraint for planned procedures. Should be part of shared formulation and care planning…
Informative and very-well written article Celia. I will share it with my psychiatry and psychology colleagues.
Your article highlights that during “crisis”, when the patient lacks the capacity to make an informed decision, the anguish and distress is not only felt by the patient, but also, felt widely by the treating team, which is sometimes overlooked and not publicised.
The take home message that “Best-interest meeting in advance, to plan for when the patient is in crisis” is to be advocated.
I have written an article on Capacity and also, on prescribing in BPD-borderline personality disorder, where I have emphasised on a collaborative approach to improve the patient’s autonomy and decision-making capacity: In clinical practice, prescribers should be mindful of prescribing psychotropic medications to patients with BPD. The first step is to have an open conversation with patients around their diagnosis and about how they would like to effectively manage their distress, especially during crisis. If patients are jointly involved in decision making, taking into account their preferences and values, then prescribing of medications might achieve better outcomes.
Thanks very much for your comment on Celia’s blog, Devender. I’d be interested in reading your article, could you reply with the reference? All best, Gill (co-director of OJCOP with Celia).
No worries Gill.
As requested, the references are:
• Yadav DS, Torne G. Patient Management. Capacity –Everyone’s business. Foundation Years Journal 2011; 5 (10): 19-22.
• Yadav DS. Prescribing in borderline personality disorder-the clinical guidelines. Progress in Neurology and Psychiatry 2020; 24 (2): 25-30
Many thanks, Devender. G
I thought this blog showed the sensitivity with which the judge approached Paul’s wishes and values – that although, at times, he lost capacity to make decisions about his treatment, whilst capacitous his clear wish was to stay alive. It must be an awful situation to be in for the health care team, needing, at times, to restrain him in order to give treatment that (when capacitous) he clearly states that he wants. I guess that’s why these decisions need such detailed scrutiny in the CoP. The blog was not about his diagnosis, though I was left feeling curious about this diagnosis and the impact of this having this diagnosis on his relationships and care, and the responses of professionals to him in the knowledge of this diagnosis.
BPD/EUPD is a controversial diagnosis – not least because it locates the source of the ‘problem’ entirely IN the person. It is known that many people who are given this diagnosis have a history of trauma/abuse/neglect and that certain groups of people are disproportionately given this label – and that health care professionals relate differently to people once they receive this diagnosis (https://www.huffingtonpost.co.uk/dr-jay-watts/testimonial-injustice-and_b_14738494.html?ncid=other_email_o63gt2jcad4&utm_campaign=share_email) . I am aware that the hearing was about the specific decision regarding dialysis and whether/how to effectively deliver this when incapacitous – I also wondered whether it would be the remit of the CoP to scrutinise and explore possibilities for the mental health care Paul received in relation to this diagnosis, his own experience and views on what his care is like, what helps and what doesn’t. This would seem relevant to the issue at hand – if Paul could be offered help that has an impact on his emotional and relational experiences, this could potentially have a beneficial impact to reduce occasions when force and restraint are necessary to deliver dialysis. Of course, i have no knowledge of the specific case, and a lot might have been offered and tried. However (and again I might have interpreted the blog incorrectly) it appeared that there was an assumption that the diagnosis *meant* that Paul would inevitably experience periods of incapacity, rather than an exploration of ways to try to reduce the frequency of occasions that this might happen.
Thank you for a very interesting insight into such a difficult decision for the CoP, and challenging situation both for Paul and for the teams helping him.
A very interesting and well-written article Celia. Having witnessed F, a similar case before Mr Justice Hayden, I have a few observations:
– First, the importance of kidney treatment and mental health care being provided together from one treatment location using a holistic care plan. Refusal of dialysis and mental health seem to be common features of these cases. Not considering both together under one treatment plan seems to me to be a possible preventative step missed. I do, however, understand that the internal workings of the NHS do not always make this possible.
– Second, P has expressed his strong wishes to stay alive. I believe Mr Justice Hayden is correct to attach significant weight to this factor.
– Third, I can sympathize with the ‘necessary evil’ justification. My concern is one of trauma. How long can restraint be ordered for and at what cost? If things do not improve, what are the implications of repeatedly sedating P and providing treatment under general anaesthetic? Sadly in this case, even P is accepting of restraint (and the inherent risks) if it keeps him alive.
– Fourth, a tension exists between authorising restraint for the immediate survival of P and putting in place a long-term plan for P’s recovery. I fear that my optimism for an alternative to restraint falls short of the reality for P. A long-term recovery plan is obviously hampered by P’s fluctuating capacity and it is concerning that restraint could be deemed necessary for as long as P’s mental health recovery takes.
– Finally, I agree an advance decision would be beneficial even if to allow P to begin considering treatment decisions whilst having capacity. I also understand the legal limitations. If P consents to restraint, is this consent indefinite? Would an advance decision apply to another life-threatening circumstance unrelated to kidney treatment? These are questions that will need to be well thought out.
– Ultimately though, as it did in this case, a capacitous expression of wishes at an earlier date (broadly an advance decision) sheds significant light on the wishes of P and therefore can contribute considerably to best interests decision making.