Amputation: A best interests decision for the surgeon

By Carrie Hanman, 6 October 2020

Editor’s note: This is one of two blogs published today concerning the same hearing. You can read Adam Tanner’s perspective on the same hearing in the previous blog post.

To support my professional development as a “Return to Social Work” student, I attended (via telephone link because I had problems in joining the video-platform), a Court of Protection hearing before Mrs Justice Lieven on 2.10.20. It was listed on the Family Division of the Royal Court of Justice website like this:

Before MRS JUSTICE LIEVEN
Also sitting as a Judge of the Court of Protection
Friday, 2 October, 2020
At 11:30 AM
FOR HEARING IN OPEN COURT
COP 13659766 Re ‘PA’   MS Teams Hearing

I found the hearing interesting because it built on my previous experience as a hospital social worker and because I have a personal commitment to ensuring that human rights are upheld. 

As is usual for Court of Protection cases, the hearing was subject to a Transparency Order to protect the identity of the individual (P) at the centre of the case.  He was a 61-year-old male inpatient who was of Afro Caribbean origin and had been admitted to hospital with a serious foot infection.  He has a history of mental health problems (paranoid schizophrenia), although this has been sufficiently well controlled for the last 8 years to allow him to live in the community.  He is also a Type 2 diabetic and is asthmatic.  

 The initial application submitted to the court by the NHS Hospital Trust responsible for his medical care (represented by Fiona Patterson) was for a treatment order to allow a below-knee leg amputation but on the day of the hearing the application was amended to request a Court of Protection order that would allow a surgeon the autonomy to decide on the day whether it was in P’s best interests to procced with the originally proposed partial leg amputation or provide more conservative treatment. As counsel put it:

“So what the Trust would like is to slightly amend the care plan and Order so that the surgical procedure goes ahead but if, in theatre, the surgeon thinks he can save the foot, then he’ll drain the wound and if necessary debride the infected bone tissue and sent P back to the ward with antibiotics.  But if his worst fears are confirmed, then he can proceed immediately to a below-the-knee amputation.”

Counsel for the NHS Hospital Trust

Since his admission, P had regularly refused to allow examination of his foot, and redressing of his foot wounds, and he sometimes refused to take his antibiotics. A best interest medical treatment decision order was sought on the grounds that P lacked capacity to understand the severity of his medical condition and to consent to necessary medical treatment. It was submitted that P has an impairment of mind because he has schizophrenia, and is unable to understand his current condition or weigh information relevant to treatment decisions.  P was represented by the Official Solicitor (with Nicola Greaney as counsel)

Counsel for the applicant Trust explained that the original application had been for an order to approve surgical amputation of P’s lower leg because P was at serious risk of potentially fatal sepsis infection and necrosis –  but on the morning of the hearing, the surgeon had observed unexpected signs of improvement which indicated a more conservative treatment approach might be possible. The application was amended to allow for the possibility that if under anesthetised examination the surgeon considered a more conservative approach was possible, the Court of Protection order should allow for the surgeon to exercise his autonomy­­­ in making a best interests decision for P.  The Trust wanted to proceed with giving P a general anaesthetic and then inspect the bone and establish the degree of infection.  If the surgeon’s professional judgment was that amputation was necessary, the Trust wanted him to be empowered to go ahead and do it at that point. If his professional judgment was that it could be avoided when P was properly examined in theatre, then he should be empowered to enact that decision too. This would also avoid the risk to P of having to undergo two separate procedures if amputation should turn out to be necessary.

I was pleased that the immediate response from Mrs Justice Lieven was to express her concern that an Order was being sought which would allow a surgeon to unilaterally decide, on the morning of a scheduled operation, whether amputation should proceed. I found her concern reassuring because the Court is charged with making evidence-based decisions and making an advance judgment about something that had yet to be evidenced inevitably carries risk and reinforces the perceptions of power imbalances that exist between individuals and professionals. 

The surgeon was called to give evidence. He explained that the infection in P’s foot was serious and that the risk of sepsis and necrosis was high and could prove fatal. Since admission, P had frequently refused to consent to physical examination of his foot or to allow the wound dressings to be changed, and he had been non-compliant with antibiotic treatment. Based on the surgeon’s inspection of the foot on Monday, he had believed surgery to be clinically necessary. However, his observation of P’s foot on the morning of the hearing had indicated there to be unexpected signs of improvement. The surgeon advised the judge that he could only undertake a thorough physical examination of P’s foot in theatre, and that depending on the viability of the tissue and bone he would be willing to consider a more conservative treatment approach to treatment (e.g. draining the infection, removing infected bone tissue and treatment with more antibiotics). Cross examination revealed that the surgeon considered the threshold for amputation to be high but that if the application to keep amputation as a surgical option was withdrawn and sepsis infection spread higher up his leg, then P’s demise was likely to be rapid. Despite my concerns about granting the surgeon the final say in making best interests about P’s leg, it was hard to see an alternative way forward given the evidence the surgeon presented.

During the surgeon’s evidence it became clear that no hospital discharge care plan existed. To me this was surprising because it was evident that the hospital would be seeking to discharge P as soon as possible because of COVID19 risk factors and because a surgical ward would not be a suitable environment to support his recovery. 

The reason given to the court for the lack of discharge care planning was that the uncertainty of whether amputation was to proceed meant it was impossible to plan his post-discharge care needs. Yet it was clear from the discussion that his needs were considered high enough to warrant intensive rehabilitation or even possible care within a suitable nursing home. This situation, whilst logical in theory, struck me as strange because in my previous experience as a hospital social worker, discharge planning always started shortly after the admission, and particularly if someone was already known to services. It may be that many medics are unaware of what goes on within discharge planning at an operational level but P’s evidenced need for an early discharge and his need for ongoing care and support were evident to the judge during the hearing so it is surprising that no reassurance of early care planning having begun was offered by the Trust’s legal representative. The judge asked for a discharge plan to be agreed by lunch-time on Tuesday so that it would be available for her at the next hearing, scheduled for the following week.

What also surprised and disappointed me during the hearing was that no reference was made to P’s wishes or to his social circumstances until the judge asked family members (P’s brother and son) to contribute. Obviously as an observer I did not have access to the legal bundle which presumably would have included a thorough best interests assessment, but – like me –  the judge was surprised to discover part way through the hearing that P has a wife. She asked whether all the correct papers had been served to P’s wife, and was assured that they had been, but I do feel that the hearing would have been better informed by verbal reference to P’s wishes and his social circumstances at the outset.  I didn’t really feel that P’s wishes and feelings were given as much weight as I expected them to receive in this hearing. I also wondered whether P (who was described as “pleasant and cooperative”) had been invited to attend the court hearing at which life-changing decisions were being made about him. However, I do feel the judge was sensitive to the situation the family was in and that, had they voiced explicit objections to the application, these would have been listened to. 

Although the application was made by a hospital Trust in respect of a best interest decision for a surgical procedure, the local mental health Trust had been named as a respondent. Their legal representative (Bridget Dolan) made the point that the Trust considered it inappropriate to have been named as a respondent because they were not opposing the application for a Court of Protection decision order on a physical condition, they had met their duty of care towards P and they would continue to do so through further assessment of P’s mental health once more is known about the treatment pathway to be followed. The judge’s response was somewhat impatient: she asked “where is this going?” and said that if it related to a cost application that could be dealt with later (it is in fact to be dealt with in the next hearing) and that if it arises from a sense of grievance then it should be dealt with in correspondence between the NHS bodies, since “in light of the importance of the underlying issues, I’m not terribly interested in dealing with that now”.  (The Clinical Commissioning Group was also represented in court, by Vikram Sachdeva.)

In her short oral judgment, the Mrs Justice Lieven said she was confident (on the basis of a report from a consultant psychiatrist) that P lacked capacity to understand and weigh up information about his condition and the treatment options available.  She declared that it was in P’s best interest to undergo further medical treatment and approved the amended application.  (My connection cut off a few minutes before the end of the hearing.)

A further hearing is set to take place in 7 days, after the surgery, and will address how P’s future care and support needs will be met in the least restrictive way once he is discharged from hospital. I hope to attend this and if so, I shall write a follow up blog. 

This was a thought-provoking hearing which will help my reflective practice when I return to social work.  It is important for professionals to remember that individuals with mental capacity, even those with a history of mental illness, have the right to refuse treatment against medical advice even if it could save their life. It was common ground amongst the parties (and family members) that P did not have the mental capacity to make this decision.  Nonetheless, his wishes and feelings – which were apparently not to have surgery should have weighed heavily in the best interests decision.   After all, an amputation has life changing consequences for individuals and families and it is essential for people to be involved as far as possible and have their voices heard. 

Having attended this hearing, I do feel that P’s human rights were sensitively observed but I still remain uncomfortable about the principle that the Court of Protection has the legal power to provide for advance autonomous best interest decision making to a single professional. I would also personally be interested to learn whether P had been offered the services of an Independent Mental Capacity Advocate or whether anyone from his family had felt able to undertake this role. From what was said in court it was apparent that P’s family members were anxious not to alienate P by appearing (as the judge put it) to be “siding against him”, and this seemed to make it difficult to speak freely. 

Carrie Hanman qualified as a social worker in 1994 and after taking a career break for family reasons she is in now in the process of renewing her registration as a Social Worker with @SocialWorkEng She tweets @CarolineRTSW

Photo by Nino Liverani on Unsplash

A Permissive Order For Amputation Contrary to P’s Wishes

By Adam Tanner, 6 October 2020

On October 2nd 2020, I observed a hearing on Microsoft Teams, before Mrs Justice Lieven in the Royal Courts of Justice (COP 13659766 Re PA).

Lieven LJ was, as she has been in previous cases, clear that an introduction to the case should be provided for the purpose of transparency for observers in the virtual Court. Counsel on behalf of the applicant Trust, Fiona Paterson, therefore, gave a brief history of the facts of the case.

PA is a 61-year-old man who has a history of serious mental health issues, including paranoid schizophrenia. He currently also has Type II diabetes and asthma. His mental health issues have rendered him unable to consent to treatment for a severe infection in his foot and he has difficulties in complying with clinical examinations and allowing his dressing to be changed, due to his mental health problems. He has already had an emergency partial amputation to his foot at the beginning of September. However, the infection has been getting worse, and PA has been refusing to allow doctors to assess the leg or give him any further treatment. 

The order submitted to the court in advance of this hearing, sought authorisation to amputate PA’s leg below the knee; however, during the week of the hearing, there seemed to be some improvement in PA’s condition. His doctor said that on Monday there was around 75% necrotic tissue and 25% healthy tissue; but having inspected PA’s foot that morning he believed there had been some small improvements on this. The Court was therefore now being asked to authorise a series of events:

  • To allow the doctor to administer a general anaesthetic to PA and, under general anaesthetic, conduct exploratory surgery to assess the true extent of the infection. He said he would debride the foot of any necrotic tissue, clean and sterilise the wound and apply a dressing.
  • However, if the infection is found to be worse than currently believed, then the Trust seeks permission to proceed right away to a below-knee amputation. 

Lieven J expressed her initial reluctance to grant such an order, because it was giving vast discretion to the surgeon in the operating theatre to decide whether the below-knee amputation is in PA’s best interests. She, therefore, wished to hear directly from the doctor who would be making the decision in theatre.

The doctor made it clear that he would favour ‘conservative treatment’ and that a below-knee amputation would be a ‘last resort’ and would have to meet an extremely ‘high threshold’. However, he also stated that should PA not have this surgery as soon as possible then PA is essentially a ‘sitting duck for rip-roaring infection which might take his life by systemic sepsis’. The doctor gave evidence that systemic sepsis could, in some circumstances, result in death within hours. 

The reluctance to have two separate hearings, and allow for two separate surgeries, was universally agreed by all parties – in part to ‘avoid distress’ to Mr PA by requiring him to undergo two separate procedures, and in part to avoid delaying appropriate treatment. Counsel for the Official Solicitor, Nicola Greaney, supported the plan put forward by the doctor and was happy for the surgeon to have discretion to make a best interests decision concerning amputation in theatre on the day. 

Mrs Justice Lieven, therefore, granted the order as proposed and that discretion should be given to the operating doctor with the understanding that there is a high threshold needed to undertake a below-knee amputation and that ‘conservative’ treatment options would be preferred. 

This case is by no means the first time in which the Court has had to decide whether it is in the best interests of a person who lacks capacity to have part of his lower extremities amputated. 

In the case of  Wye Valley v B [2015] (https://www.bailii.org/ew/cases/EWCOP/2015/60.html), a 73-year-old man who had a long-standing mental illness, as well as Type II diabetes, was refusing to allow medical intervention for an infected foot. Consequently, doctors believed that P required amputation of the foot, or he would succumb to the infection within days. In that case, Peter Jackson J (as he then was) decided that, although P lacked capacity, it would not be in his best interests to go against his express wishes and amputate his foot. Peter Jackson J emphasised that it is vital not to disregard the views of a person who lacks capacity. The judge stated that when making a best interests decision, “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” (at para 10). It should also be noted that in this case, the judge went to meet Mr B in the hospital personally, to understand his views.

Similarly, Mrs Justice Lieven has, in a previous amputation case, East Lancashire Hospitals NHS Trust PW [2019] (https://www.bailii.org/ew/cases/EWCOP/2019/10.html), stated that she had spoken to the patient over the phone “in order to try to understand his wishes and feelings”. This case had similar facts to Re PA: P was a 60-year-old man with paranoid schizophrenia who developed sepsis relating to a diabetic foot infection and had a partial foot amputation. The clinical team similarly sought a below-knee amputation as one option of treatment. Lieven J had regard for Peter Jackson J’s previous ruling in deciding that, despite P not wanting an operation, it would be in his best interests to have it done. 

Unlike these two earlier cases, there was minimal information provided in court or in the oral judgement in Re PA about the wishes and feelings of Mr PA. As far as we know from what transpired in court, the judge had not spoken to PA, nor was PA in court (and it was not clear whether or not he had been invited to attend).  Counsel for PA (via the Official Solicitor) simply said that PA did not wish to have his leg amputated. He had become more ‘cooperative’ in recent days, in that he had permitted doctors to change his dressings and observe the foot, but would not allow the doctor to touch or closely inspect the wound. At the time of the hearing he had also not agreed to amputation. 

What should be noted, however, is that Mr PA’s brother and his son both spoke during the hearing.  The judge asked PA’s brother how he thought Mr PA would feel if he woke up and found he’d been given a below-knee amputation.  “I know for a fact he won’t be happy, whatsoever”, he said.  “He won’t be happy at all.  But as a family we’ve gone through it from every angle and we can’t see any other way forward.”  The judge asked how Mr PA had responded to the partial amputation of his foot that he’d already been given: “Not as bad as I expected it to be.  But I think maybe if it was below the knee, maybe he would have reacted different.”  Mr PA’s son asked to speak to the judge and said:

“I just want to say that when we visited Dad on Sunday he was quite positive and cheerful and speaking about going home and life outside hospital.  I think if he understood the life-threatening situation he’s in, he would be on board with the surgery.  But he doesn’t seem to understand.”

(Mr PA’s son)

This wasn’t explored in any detail, but the fact that Mr PA does not understand his predicament may be the distinguishing factor between this case and Wye Valley, in which P was said to understand the risks of his refusal. In Lieven J’s 2019 case, however, P was unable to understand the risks attached to his refusal. In the current case, Lieven J said she was satisfied that Mr PA was not refusing treatment “due to any religious or other deeply held belief system”, but simply because “he has no insight into his condition”.  

In a short oral judgment, she authorised a ‘permissive’ order allowing the surgeon to proceed as proposed by the Trust, with “freedom of movement to go ahead and make a clinical decision” about whether or not to amputate the leg when Mr PA was under general anaesthetic (planned for Tuesday 6 October 2020).  She pointed out that this proposal from the Trust was supported by the Official Solicitor and also by Mr PA’s brother and son who “do not seek to argue with what is suggested”. 

There is an obvious need for speed in situations such as these, and at a time where the justice system is incredibly backlogged with cases. It is therefore understandable that in urgent applications, not everything is addressed in granular detail; however, the views of the person at the centre of the case should not be given short shrift. Of course, as observers we are not privy to the court papers, and so do not know what was laid out in position statements which could well have provided more in-depth information about P’s wishes and feelings, but these were certainly not raised in Court.

This case may be heading back to the Court in the coming days to address the discharge plan for Mr PA, as at present there is currently no post-treatment plan in place whatsoever.   This was an issue of great concern to the judge – not least because, as Counsel for the Trust pointed out “with the Covid pandemic we need to make sure PA doesn’t languish in hospital any longer than is necessary”.

As a PhD researcher who researches and writes on the role of the courts under the MCA 2005, this case was extremely interesting to observe as there has been a series of cases which concern the amputation of patients’ limbs when those patients have been, predominantly, diagnosed with paranoid schizophrenia.  Lieven J’s handling of an emergency application and the way in which best interests was decided in this case are going to greatly inform my future research into the way in which the best interests test is applied by professionals in both medical and legal settings. Cases such as these illuminate when a patient’s voice should be heard and what a fine balance it is when trying to decide the weight, if any, which should be given to the views of an incapacitous person. 

Adam Tanner is a PhD researcher in mental capacity law and has contributed previous blogs to this Project (e.g. here). He tweets @AdamrTanner

Photo by Street Donkey on Unsplash

How to use CourtServe

By Celia Kitzinger – 5 October 2020

CourtServe is an invaluable resource for the public who want to know about Court of Protection hearings that we might be able to attend (and other hearings too).  It’s a listings service provided by Courtel Communications.  On its website it says it “delivers a comprehensive court list distribution service in electronic format to the legal community in England and Wales”.  You have to register (it’s a very simple process) but it’s free to use.

CourtServe covers hearings in crown courts, magistrates’ courts, and in the Royal Courts of Justice, and also employment tribunals.  For me, it’s an essential resource for locating Court of Protection (CoP) hearings taking place outside London.  

There are two other lists I use for locating hearings in London: the Family Division of the Royal Courts of Justice (RCJ) website (here) and the First Avenue House website (here).  The information posted on these other two lists is duplicated in CourtServe but under different tabs and I find the format less user-friendly (more below!).

It’s really useful to know how to use CourtServe if you want to be able to locate court hearings in the regional courts, and not be dependent on turning up in court and seeing what’s available on the day, or asking barristers or clerks for help in locating hearings.  It will take you less than 5 mins to get registered and become able to locate CoP hearings.

Using Courtserve

Go to CourtServe (here).  Once you’ve logged in and created a password, go to the left hand menu, and under “Services” click on “County Courts” (see Figure 1)

Then click on “Court of Protection lists” (see Figure 2) 

This will take you to a list of hearings, like the list displayed in Figure 3.  Notice that the First Avenue House hearings (which take place in Holborn in London) are also listed here – but the Royal Courts of Justice hearings are not, because you are looking at “county court” listings and RCJ hearings are under a different tab.

If you click on any of the towns and cities listed here, another screen opens up giving you information about the hearing or hearings (there is often more than one) on the list.  Take a look at Figure 4 for an example, based on clicking on “Bournemouth and Poole”. 

You can see that there are three hearings listed before His Honour Judge Simmonds sitting at the County Court and the Family Court at Bournemouth and Poole – at 10am, 3pm and 4pm.  They are all being held remotely (two by telephone and it doesn’t provide any information but simply says “remote” by the 3pm hearing).  There’s no information about the issues likely to be addressed at these hearings – unfortunately it’s unusual for any such information to be provided except for hearings at First Avenue House.

Contact information is provided at the bottom of the page for the hearings in Bournemouth and Poole, and the email address and phone number provided are correct.  Notice that you don’t contact the county court in Bournemouth and Poole, but the regional administrative hub for the Court of Protection South West Region, which is in Bristol.

What do I do if there’s no contact information (or if it’s wrong)?

Unfortunately, contact information is often not provided, or is incorrect.  In CourtServe today (Sunday 4 October 2020) I located 27 Court of Protection hearings for Monday 5 October 2020: 8 provide no contact information at all: 2 provide the correct email address but no phone number; for 3 the contact information provided is incorrect.  That’s half of all listings providing inadequate contact information!  This is fairly typical.

Missing or incorrect contact information is very frustrating for members of the public wanting to observe hearings.  

In today’s lists for Monday 5 October, three of the entries that are missing contact information are First Avenue House hearings – which is one reason why it is best to go direct to the First Avenue House website to locate these (here). 

The best way to locate the correct contact information for CoP hearings in county courts is to figure out which of the seven regional hubs that court might belong to.  There is a list of hubs with their correct addresses, and email and phone contact information here.  

For example, Teesside County Court (see Figure 5) provides no contact information at all for its CoP hearing on Monday 5 October 2020.  (It hasn’t provided any contact information in these listings for any of its CoP hearings for at least the last month.)

What the Teesside listing does say (at the top, look at the red arrow) is that it’s in the Court of Protection North East region.  If you check the list of administrative hubs you’ll find,  sadly, that there isn’t actually an administrative hub called “North East” – it’s a choice between the “North East-East Regional Hub” (which is in Leeds) or the “North East -North Regional Hub” (which is in Newcastle).  I think the correct hub is Newcastle!

Finding more COP hearings in addition to those listed under the “Court of Protection” tab

For Monday 5 October 2020, the 10 links provided under the Court of Protection tab (shown in Fig 3) yield a total of 19 hearings: in addition to 1 hearing in each of Bristol, Leeds, Maidstone, Hastings, Taunton and Teesside, there are 5 in Sheffield, 3 each in Bournemouth and Poole and in Reading, and 2 in First Avenue House.  

In addition to the 19 hearings listed under the Court of Protection tab, there are a further 8 scattered across the lists for the county courts.  There’s no way of finding these except by opening up each town or city name in the whole list of county courts and then each of the links that appear subsequently, checking them out one by one.  I regularly find that between a third and a half of all the Court of Protection hearings listed for any given day are NOT included under the Court of Protection tab, and can only be located (arduously) in this way. 

It can be very time-consuming to locate these hearings – you have to trawl through a lot of data to find them. They are sometimes not clearly labelled as “Court of Protection” hearings, and even if you recognise that’s what they are, there can be barriers to access.  For example, Figure 6 shows the CourtServe listing for a hearing before District Judge Charnock-Neal at 12pm on Monday 5 October 2020.  It says it’s “Public” but it’s under the “Newcastle” tab (not “Court of Protection” tab) and the email addresses provided are not correct for the COP hub.

And this hearing before District Judge Case is listed under “Blackburn” and then “Family; District Judge Case”.

It doesn’t provide any indication that this is a Court of Protection hearing (I only know that it is because I recognise the format of the case number) – nor does it provide any contact information (none at all!).

The way hearings are listed can make it highly unlikely that any member of the public will be able to attend.  For the 1 in 3 COP hearings not listed under the CoP tab, open justice is severely compromised: observing these hearings will require your determination and persistence.

Improving Open Justice via the listings

CourtServe is only as good as the data provided by Her Majesty’s Courts and Tribunal Service.  I’ve heard barristers describe it as a “data dump” – but I’ve yet to find anyone able to describe to me how information about hearings gets from a judge’s diary into Courtserve.  I’ve asked a couple of judges who have “no idea”.  In practice, judges often don’t know how their own hearings are listed in CourtServe.  Some solicitors and barristers have told me they’ve never used CourtServe.

Still, despite its deficiencies, it’s an essential resource for public observers.  Without it, I would have no idea of how to locate court hearings outside London and no chance of observing any of them.  It’s a crucial tool for open justice.

Improving the CourtServe listings so that all CoP hearings are correctly placed under the “Court of Protection” tab, and ensuring that hearings are tagged with issues to be addressed and accurate contact information, would be a substantial contribution to open justice and transparency in the Court of Protection.

Celia Kitzinger is Co-Director (with Gill Loomes-Quinn) of the Open Justice Court of Protection Project. She tweets @kitzingercelia

Photo by Karolina Kołodziejczak on Unsplash

Applying to be a deputy in place of the court-appointed deputy

Alice Ferguson – 1st October 2020

I observed a telephone hearing (COP 13534031) before Senior Judge Hilder at 10.30am on the 17th September 2020.

The Start of the Hearing

There were several people involved in the hearing: including the judge, the applicant ‘C’ (P’s cousin), C’s representative, P’s representative, counsel for the local authority (the ‘LA’), P’s social worker, and me as an observer. There were others present on the call, however their roles were not introduced and they spoke very little or not at all. The callers appeared familiar with one another before the hearing began.  In terms of my ability to understand who was present and what their role was, there was also the issue of people talking over one another when Judge Hilder began checking who was on the call, meaning I could not hear all of what was being said (others stated the same).

Throughout the call, the discussion about P’s welfare was primarily discussed between the Judge, and P’s cousin C, and her legal representative, and later with the local authority representative.

Before attending this hearing, I had heard and read much about the issues presented by telephone hearings, with one service user describing the process as inhumane. However, with the country still well within the grips of the current pandemic it is crucial that hearings can go ahead without needlessly bringing several parties together in a courtroom.

There were, indeed, problems with background noises of various callers interrupting Judge Hilder and causing some (albeit minor) confusion with those present on the call. Judge Hilder muted callers who were not required to speak and for the most part this was sufficient. There were, however, other issues at hand:  the applicant, P’s cousin, complained of previous telephone hearings cutting out and said she also struggled to understand some discussions due to partial deafness. She also reported difficulties in contacting P who currently resides in a care home.

These issues underline the struggle that is very real for many COP participants, especially for those who are not present as professionals: what is already so commonly a stressful and confusing process can be amplified by the complications of modern technology. Overall, though, the hearing went relatively smoothly. Judge Hilder ensured all parties were clear on what was being discussed and repeated or simplified anything that caused uncertainty.

The Case Before the Court

Due to not being present for previous hearings regarding P’s welfare, I had to pick up a sense of P’s current circumstances throughout the course of the hearing (there was no formal introduction). P is in her 80s and has been diagnosed with vascular dementia. This has left her unable to care for herself and she currently resides in a care home. She has some idea of her current circumstances, and frequently mentions her previous home (before care) and has a close relationship with her extended family. This includes C (the applicant), other cousins, and a goddaughter. The hearing also discussed plans for P’s care, her capacity and the finalisation of a care plan.

The deputyship application therefore had to be addressed first in the hearing because a change would impact the plans for P’s care.

P’s cousin, C, was applying to terminate court-appointed deputyship and instead take the place of deputy herself.  From the nature of the conversation, it appeared that the current deputy had been appointed by the court to handle both P’s financial and her personal affairs. C had made applications to take over each of these roles. Under Re M, N v O & P [2013] COPLR 91, Senior Judge Lush stated that the “order of preference” for deputies began with family members of P, and considered the emotional as well as economic benefit of this (professional deputies charge for their services). It was not discussed in this hearing why C was not initially made a deputy for P in either capacity. Judge Hilder was, however, mindful of costs. Rather than multiple hearings, she requested that those present at the current hearing email each other where possible to avoid such expenses and instead organised a singular, final hearing (the date of which is confirmed at the end of this article).

Under section 16(2)(b) of the Mental Capacity Act 2005, the court has the power to appoint a deputy on behalf of P where P lacks capacity to make decisions for matters concerning P’s personal welfare or P’s property and affairs. C wished to take the place of this deputy through a Court of Protection application – her argument being that she did not feel comfortable with a court-appointed stranger managing P’s personal and financial affairs.

The court first heard about a COP9 application made by C to take over the role of deputy in place of the court-appointed one to make decisions about P’s welfare. As stated on the government website, a deputy is  only appointed by the court if is believed to be in a person’s best interests to do so.

Summary

C explained that in their country of birth, elderly relatives rarely go into care homes (where P is currently residing). Instead, the elderly are cared for at home until death.  This is a tradition that C and the family wish to continue. In accordance with this wish, the control of property and decisions about P’s welfare should, they believe, be determined by family members.  C said:

“I want to help [P] live her life the way she wants to live it. I want to buy her the food she likes; I want to take her shopping; I want to keep her in touch with extended family outside of the UK. I believe this is my job.”

C (the applicant)

Judge Hilder accommodates C; she allows her to explain clearly and completely why she wishes to be appointed as both finance and welfare deputy in place of the professional. (C speaks for herself for most of the hearing although her representative occasionally joins in).

P’s social worker adds to C’s argument. C “does not feel that her voice is being heard … a deputyship is about accommodating a family feeling”; with the power of deputyship, C feels she can truly fulfil this role. C is also concerned that the locks have been changed by the deputy in a breach of what he is authorised to do. Finally, she mentioned that she had not felt involved enough in the process because the deputy was not frequently in contact with her; “we did not hear from him at all”.

In Re BM, JB, v AG [2014] EWCOPB20, Senior Judge Lush explained further on the point of familial deputies. He stated that although the ‘court has preferred to appoint a relative or friend as deputy’ because ‘a relative or friend is usually familiar with P’s affairs and aware of their wishes and feelings’, it must be in P’s “best interests” to do so.

When C has finished explaining her wishes, Judge Hilder politely but firmly reminds C about the point of the deputyship. The point is to support P; to protect and serve her best interests, and her best interests alone. The deputyship does not exist to do this for both P and C. The court has appointed the deputy because the deputy is, and continues to be, in the best position to ensure P’s welfare.

Judge Hilder frequently reminds C and her representative that P should remain the focus. There may have been an application to remove the court-appointed deputy, but it is crucial to remember why a deputy had been appointed in the first place – to serve P’s best interests. C may want to accommodate P’s personal preferences, and she may be in the best position out of those present for the hearing, but P’s needs extend beyond familiarity.

The judge then explains that the act of changing the locks is an authorised act. Finally, on this point, she states that the deputyship may be open to change or extension, but this is not being dealt with at this moment in time. C’s application was rejected.

C interjects. What is further concerning her is the deputy’s power to enter P’s household and remove her personal belongings. This appears to be a reference to the financial deputyship that the court has arranged for P. C explains her anxiety that sentimental or valuable items belonging to P and her family would be incorrectly disposed of. C wants her cousin to have a say in what is, or is not, kept.

What the appointed deputy doesn’t know is:

“what is special to P. A [court-appointed deputy] will not know whether this or that item is from her wedding, from a relative back home, from a special occasion [for example]”.

C (the applicant)

C is clearly distressed, understandably so; it is an uncomfortable notion for many people to envision a stranger deciding which of their possessions are and are not worth keeping. Belongings are, after all, often a reflection of our lived experiences.

“I accept your concerns and share them”, Judge Hilder responds. “We will deal with this issue as we progress through the draft order.”

It is confirmed that, pursuant to section 2 and section 3 of the Mental Capacity Act 2005, P lacks capacity to make decisions about her care and where she should live.

All parties agree with this; the doctor’s opinion (which was referenced from a prior meeting between P and the doctor) is that P will not regain capacity. C does express further concern:  just because P lacks capacity to make decisions about her care and accommodation, this should not mean her wishes about remaining in a care home should be ignored. C is demonstrably distressed and emotional throughout this process. Judge Hilder sometimes has to mute the telephone line of C during the hearing to direct the conversation into something orderly.

Although this may sound, upon reading, as though it could be an unfair advantage of a Judge (and arguably it could well be utilised as such), the muting was appropriate in some situations and no party objected. Judge Hilder would quickly unmute the telephone line of C and explain that she had just done so and why. This happened just a few times (about 2 or 3) and the issues C raised in the moments before muting were addressed as the parties discussed each section of the draft order. 

Judge Hilder explains the power of a deputy under the MCA 2005. Under section 16, court-appointed deputies have the power to make decisions about a person’s property. “A property is hardly ever cleared without direction from the service user or family”, she continues. C, and other approved family members, can help. “There is no issue with this.” The financial and welfare professional deputy, therefore, could remain without preventing C’s involvement.

C agrees that this is fair. However, P’s house is “very, very important to her [P]”. C suggests that P visits the house to personally direct what items should or should not be removed. P is “talking about [her] house all the time. All the time.”.

Judge Hilder acknowledges this. “There are certainly positives to accommodating [P] in this regard”, but what about the risks? She refers to counsel for the LA.

The counsel for the LA agrees there are positive aspects to P being involved in the process, but the idea also raises concerns. Firstly, she continues, is the very real risk of introducing stress for P. There are photographs of the property in its current state. The house would need to be cleared of items that are definitely not belongings (e.g. items that are clearly rubbish). P is also not fully mobile and may be confined to the ground floor due to accessibility issues.

This again underlines the difficult balancing act present in many COP cases. When a loved one loses capacity, it is instinctual to want to protect them and to feel empowered throughout the process. However, what family members want and what is best for the service user cannot always align.

The counsel for the LA and Judge Hilder discuss what can be done to accommodate P whilst avoiding potential problems. It is suggested that a list of items that P wants to keep may be a useful option if it is not possible to bring her to the house.  C is invited to make the list and to check with other relatives so as to ensure all valuable possessions are retained.

C states that there has been difficulty in contacting P via telephone during the pandemic; often she rings the care home and receives no response. It is accepted by both C and the Judge that the current pandemic has introduced further barriers to organisation, but this cannot be helped.

C’s legal representative then begins to talk; he wishes to remind the court of Articles 3 and 8 of the Human Rights Act 1998 (to be free from torture and inhuman or degrading treatment and a right to a private and family life respectively). The representative reiterates that the court must consider the familial role of the cousin and her wishes for P’s care (namely that C wishes to take P into the family home).

The mention of Article 3, in this context, could be suggesting that P should not have to endure care that does not accommodate her wishes, including her right to be with her family (Article 8). If so, C’s representative would likely have been referring to the prevention of inhuman or degrading treatment of P through care that would not fulfil her desire to be with her family. It is uncommon for Article 3 to be referenced in discussions of care proceedings, with Articles 6 (the right to liberty and security) and 8 being more frequently referenced.

I must mention here that Article 3 could also suggest the opposite. P has a right to care that is sufficient for all her needs. This includes 24-hour care, which may not be possible in the family home (at this point, arrangements for P’s care in the family home were not complete). To place a vulnerable person in a care setting that cannot serve their best interests is arguably more likely to lead to an Article 3 infringement than to deprive a person from a family’s care. There is also the question of whether P’s treatment would ever reach the level of severity that is required to qualify a discussion of Article 3 (one hopes this would never be relevant). Article 3 has been stated as requiring a minimum threshold of severity for treatment to be considered under its scope which is relative to each case (Ireland v United Kingdom (1978)). This assessment of Article 3 is speculative, however, as C’s representative did not explain his reference to it further.

Judge Hilder reminds the representative that what C wants for P, and what P wants for herself regarding aspects of her care may not be the same. “It is not compulsory for P to agree with her cousin on all matters of her care” and it is therefore important to consider P’s personal wishes for her care as far as it is possible to do so. Ultimately, P’s Article 8 rights may not completely align with C’s, and it is P’s rights that must be the focus in this hearing.

Details are agreed; a list must be drawn up by P and her family as to what their plans are for living arrangements (if, in future,  P moves from the care home and into a family home in line with the family’s wishes), what belongings should be kept and further discussion on how far P can be involved in the process. This involves C needing to provide a detailed plan on how P will be cared for and who will care for her when the family cannot be at home.

Further, C needs to confirm whether she would be willing to move to a different area in order to care for P as they currently live relatively far away from one another. Finally, the statement should include any properties C or the extended family have found that would be suitable for P to reside in should she move from the care home.

The local authority also needs to file a statement concerning a care package. This should include costs, type of accommodation needed, care services including the consideration of personal assistants (depending on whether P does indeed move to a private home or remains in a care home). The local authority should also state what accommodation it prefers, including a different type of care home if that is deemed suitable. 

All parties agreed on the next steps and a date for the next hearing (about where P should live and how best to care for her) was confirmed. This will be the 20th October 2020 at 10am in First Avenue House, London.  The current plan is that it will take place in person (not remotely) and it is scheduled to last the entire day.

Due to the next hearing taking place in person, I cannot observe it. However, I am confident that Judge Hilder will continue to strike a balance between P’s needs and the wishes of her family. COP hearings often centre around sensitive and emotional issues, and it was reassuring to witness a judge who acted with empathy for the family’s concerns whilst ensuring that P remained the primary focus. Judge Hilder skilfully found solutions to empower both P and her family throughout the process by suggesting ways to involve them as much as possible.

Alice Ferguson is a Bar Practice Course student with an interest in civil and social rights. She tweets @aliceferguson_

Photo by Raychan on Unsplash

References

https://www.injusticewatch.org/news/2020/challenges-arise-as-the-courtroom-goes-virtual/ (Comment on effect of remote hearings)

https://www.39essex.com/cop_cases/re-m-n-v-o-p/ (Reference to Re M, N v O & P)

https://www.legislation.gov.uk/ukpga/2005/9/section/16 (Reference to s16 MCA)

https://www.gov.uk/become-deputy (government deputy web-page)

https://www.bailii.org/ew/cases/EWCOP/2014/B20.html [Re BM [2014] EWCOP B20]

https://childprotectionresource.online/article-3-echr-and-care-proceedings/ (discussion of Article 3 and care proceedings)

http://hudoc.echr.coe.int/eng?i=001-181585 (Ireland v United Kingdom (1978))

https://www.legislation.gov.uk/ukpga/2005/9/section/2 (Section 2 MCA hyperlink)

https://www.legislation.gov.uk/ukpga/2005/9/section/3 (Section 3 MCA hyperlink)

A Litigant in Person returns to the virtual court – Navigating Approaches to Care when Family and Local Authority Disagree – Part 2, One Week On

By Hilary Paxton and Aalia Omar – 29th September 2020

Back in July, the two of us attended a hearing before DJ John Beckley sitting at Central Family Court: Thurrock Council vs JS (Case no. 11895778).  We wrote about our experience of this hearing as a blog post (by Hilary Paxton, here) and a reply to it (by Aalia Omar – scroll down to the bottom of the post) which reflects specifically on litigants in person.

At the July hearing the council was seeking an injunction from the judge to ensure that the father of a young autistic man (JS) who was living at home would not refuse entry to the carers or speak aggressively to them.  The council believed that JS’s father (who was a litigant in person) had been preventing the carers from the autism specialist agency from entering the house and caring for JS – which meant he was in breach of an order previously made by the court. At the July hearing, DJ Beckley arranged for a one-week trial to see if JS’s father would comply with the order.  If he did not, then a penal notice could be attached to the order – and DJ Beckley explained that this meant that JS’s father could go to prison if at that point he did not comply with the injunctions.

We were left on the edge of our seat wondering whether JS’s father would comply with the requirements.  We both decided to try and observe the follow-up hearing to understand whether the proposed approach had worked in practice and agreed that we would do a joint follow-up blog.

There was a frustrating start to the subsequent hearing on Friday 31 July 2020 – also before DJ John Beckley sitting at Central Family Court.  We had received an email four hours before the hearing, confirming that we could join the hearing by MS Teams, but we were both left waiting for a link to be provided until after the start of the hearing.  It was an administrative hitch, but beyond our control as observers, and when we finally got the link we both joined as quickly as possible and hoped we did not disrupt the hearing.  Judge Beckley was, however, courteous and paused proceedings to introduce us as observers, and referred to the blog that had been published that morning about the previous hearing.  JS’s father was again in court as a litigant in person, and although the hearing was via MS Teams and other participants could see each other, JS’s father once again joined the hearing by phone, so could not see others or be seen.

We heard that broadly JS’s father had indeed complied with the requirements in the intervening week.  The Judge sought the views of those present to inform his decision on making the injunctive orders requested by the council and whether to attach a penal notice to the orders.  There was much discussion about an incident that had taken place between JS and one of his carers and whether JS’s father should be advising new carers on what responses work well when JS is agitated. The Council seemed keen to suggest that this could amount to obstruction, especially if the carer wants to take a different approach.  They suggested that JS’s father had in effect been telling the carers what to do.  This angered JS’s father, who felt the council was misrepresenting the facts and trying to make him look bad.  

There was also a debate about situations where there was one female and one male carer, and how the male carer could provide support, whilst not providing personal care, especially if JS became agitated and presented any risk to the female carer.  In the end the Judge decided that if a female carer gets hurt and is unable to provide care, the male carer could come to her aid, and should be on hand in case of this, but that it should be in the least restrictive way, and that the male carer could remain just outside of the room, or observing from a distance.

The council lobbied for the addition of a penal notice to the orders, believing this would increase the likelihood of compliance, and reduce the likelihood of having to come back to court. 

In the end the Judge decided on balance not to add a penal notice, deciding it was neither necessary nor expedient to do so. He did make it clear that if JS’s father does breach the orders, the council will be able to come back to court swiftly. The request can be sent through to the Judge directly, and he will ensure that if a hearing is necessary it is held as quickly as possible.  If this happens, there is still the option to attach a penal notice to the orders at that time.  The Judge reminded those present that the hearing in September must focus on JS, and on what is in his best interests, rather than on the behaviour of JS’s father.  It was therefore very important that the arrangements proceed as required, to enable this to happen.  This was accepted by all, and JS’s father assured the Judge he understood this.

Hilary

Whilst my learning about the content of the case and the approach of the Judge was largely the same as with the previous hearing in this case, there were a couple of points that were of note that are worth mentioning.  I have found the option of observing remotely a really helpful option.  It saves on travel expense and time.  This is particularly relevant when hearings are cancelled on the day, when costs of travel may have already been expended.

What I experienced in this particular remote hearing, however, made me realise that it is possible for people to be in court, but not “in court”.  That is, they may be on the call or the video conference, but not give it their full attention.  This is not really as likely when everybody is gathered in the same court room.  It became apparent at one point in this hearing that JS’s father was calling out to someone.  I thought he was shouting at the person who was speaking at the time.  In fact, when the Judge asked him to please not interrupt and to let the person continue speaking, JS’s father explained that he was just calling out to a friend who was “driving away”.  The Judge asked him to mute his telephone if he was speaking to someone else, but also suggested, ever so gently, that it was probably in his interests to listen to what other people in the hearing were saying.  I found it quite shocking that for something as important as a court case, JS’s father had been unable to find a quiet place where he could concentrate on what was being said. 

I realised that it is all too easy to start making judgements about a person for not behaving in the way that you think is the correct way to behave.  I also thought that when somebody is represented by a member of the legal profession, it means that they can advise on the usual way of conducting oneself in a court hearing. Being a litigant in person means that you are “on your own”, and no matter how many times you have been in court, a remote hearing is a different experience.  I think it may be helpful for the court or the Judge to be explicit about some ground rules so that individuals are supported in such situations.

I also recognise that I may hear things that I disagree with in the course of a hearing.  When something unexpected is said, I noted that the Judge needs to quickly form a view on whether it is relevant to the hearing or not, and if not, let it go.   This level of focus is important as it enables the Judge to ensure he or she is not distracted from the key matters on which they have to form a judgement, and the information they need to do so.

Aalia

 Remote hearings do not seem as official as they would in a physical courtroom. As Hilary has described, JS’s father explained that whilst he was ‘in court’ he was also in his car at Gatwick Airport. This could have in turn meant he was distracted and therefore taken away from any argument made in court. In a physical court room, one hundred percent of his attention would be on the matter at hand instead of being distracted by the surrounding environment. 

Problems are also caused when lay participants, like this litigant in person, do not have access to the same technology as everyone else.  As JS’s father was unable to join by video call and only by telephone, he could not see people’s faces, or monitor their facial expressions or body language.  This can be quite informative.  There were some moments where I thought I caught an eyeroll or judgmental expression from the representative for Thurrock Council when JS’s father was speaking. I found this quite insensitive and uncalled-for. It is difficult to know if she would have behaved in this way had JS’s father been able to join by video.  Perhaps she would, in which case it could have in turn provoked him or caused an issue – but it may have been that she was simply exploiting the inequality created by her access to the video-platform which was not available to JS’s father. 

Even though Thurrock Council made a very compelling argument for the judge to attach a penal notice, the judge ruled in favour of JS’s father by not ordering a penal notice at this point. It’s important to note even though JS’s father sometimes got a little emotional, spoke over people and sometimes struggled to explain his point of view, the judge was very understanding. This was a big takeaway for me as it displayed that it’s not always about who presents the stronger argument. DJ Beckley listened and understood what lay behind certain behaviour by JS’s father and rather focused the decision of the hearing on what was in the best interest of JS as the person at the centre of the case.

Hilary Paxton works for the Association of Directors of Adult Social Services in England. She also works part-time as an RPR and is training to be an IMCA. She tweets as @hilpax

Aalia Omar is a law student at the University of Essex.  She tweets as @_AALIAOMAR

Advance Requests for Restraint and Compulsory Treatment

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[2]), 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[3] 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.[4]

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

[1] 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.

[2] This was described by counsel appointed by the Official Solicitor as a “somewhat uncomfortable” position since apparently Paul does have litigation capacity.

[3] 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.

[4] The work draws upon this earlier work by Tania Gergel and Gareth Owen which can be downloaded as a pdf (click here)

New Hearing Feedback Form

By Gill Loomes-Quinn and Celia Kitzinger – 24th September 2020

At the Open Justice Court of Protection Project, our key focus is on “Promoting Open Justice in the Court of Protection”, and we are always looking for new ways to support members of the public to access court hearings, make sense of what they see and hear, and report their observations so that the wider public can learn about what goes on inside the Court of Protection’s (virtual) walls.

We have been delighted with the efforts and commitment of the more than 40 people who have so far taken time to observe hearings and write about what they saw and heard. And their contributions to the project have given us lots of insights into how we might better support observers.

In order to make it more straightforward for people to capture and structure their observations (which can be a challenge when court proceedings are speeding past with the observer left trying to grab and note unfamiliar names and key terms) we have developed a simple form consisting of 10 questions.  – Some of these questions ask for details (names of parties etc), and others enable you to outline your perspective (e.g. your reasons for wanting to observe a Court of Protection hearing).

We hope people observing hearings will want to use the Hearing Feedback Form. We think it will be useful to you in providing a structure for your observations and prompts as to what to look out for to achieve the best possible understanding of what is going on in court.  The completed forms will also be useful to us because we will learn more about the hearings you’ve observed – without relying on you writing a blog for us, although of course we would also welcome this.  (Don’t worry if you cannot answer all the questions on the form – whatever you can complete will be valuable to us.)

We would also welcome any thoughts from those who use the form – as to how “user friendly” it is, and any suggestions for amendments. If you observe a hearing and use the Hearing Feedback Form and you have thoughts about how we might improve it (or queries about its content), please feel free to get in touch with us, via the Contact page on our website.

The Hearing Feedback Form is available to download in either MS Word or PDF format (here).

Simply download and complete it (or as much of it as you can), then return it to us at openjustice@yahoo.com – We recommend that you have a look at the questions before the hearing starts, to familiarise yourself with. or remind yourself of what you might look out for.

Gill Loomes-Quinn and Celia Kitzinger are co-directors of the Open Justice Court of Protection Project

Photo by Vlad Hilitanu on Unsplash

The myths and mistakes of capacity and criminality

By Ian Brownhill – 18th September 2020

The Court of Protection hears three broad categories of case where the criminal justice system and issues around mental capacity collide.

P as a victim

The first is the most familiar: P is in some respect vulnerable due to their impairment of, or the disturbance in the functioning of, their mind or brain. That vulnerability is exploited – the most common cases perhaps being where P is financially manipulated. Some of these cases of exploitation cross the threshold of criminality (whether the police choose to investigate or not). Significant too is the body of case law, frequently heard before High Court (Tier 3) Judges, where P has been sexually exploited. The parties aim to craft care plans which balance P’s autonomy against protecting them from those who would exploit them.

This category of case, where P is to be protected by the measures implemented by the Court is the most familiar. P as a victim of crime is, sadly, not unusual.

P as a perpetrator

Unfamiliar to many are those cases where P is the offender, or a potential offender. Such cases have developed their own mythology and common misunderstandings. This mythos can lead to bizarre extremes. Some Ps have huge levels of restriction (see for example J Council v GU & Ors (Rev 1) [2012] EWCOP 3531) to which other offenders, or potential offenders in the community would (or could) not be subject.

Myth one: Mischief thou art afoot

Where it is identified that P has offended previously, or is at risk of offending, there is a misunderstanding, on the part of some, that the Mental Capacity Act (MCA) may be used to eliminate all risk of future offending. Put simply, such an approach is wrong.

The MCA cannot be used to impose restrictions on someone to stop them from offending, it is simply not on the face of the statute. The MCA’s cousin, the Mental Health Act 1983 contains detailed provision in this regard.

The ability to impose any restriction upon P is linked, intrinsically, to P’s best interests. To read section 4 of the MCA so as to allow the imposition of restrictions to prevent P from offending is a leap. But it is one which has been taken. The oft quoted passage is taken from the decision of Moor J in ZZ WL 7870301:

 I make it clear to Mr ZZ that I have no doubt that the restrictions upon him are in his best interests. They are designed to keep him out of mischief, to keep him safe and healthy, to keep others safe, to prevent the sort of situation where the relative of a child wanted to do him serious harm, which I have no doubt was very frightening for him, and they are there to prevent him from getting into serious trouble with the police.

ZZ WL 7870301 – para 49

The problem with this paragraph is that implies that the Court is empowered to protect others and keep P out of ‘mischief’ by imposing a restriction under the MCA. That is not reflected in the statute. The most that can be said, is that restrictions can be imposed if it is determined that they are in P’s best interests; that best interests analysis could include an aim to keep P out of the criminal justice system.

The difficulty is that often people read ZZ as establishing a lawful authority to impose a huge raft of restrictions without properly considering section 4 or the need to pay heed to the principle of least restriction.

I would suggest that where restrictions to avoid offending are being imposed that a Court ought not do so until it has established:

  • The nature of the risk, to include (i) the severity of the risk; (ii) the likelihood of the risk eventuating; (iii) the imminence of the risk;
  • What is the least restrictive means of mitigating that risk?

In my view, the pursuit of a ‘no risk’ approach to P’s care is simply untenable, it goes against the grain of the authorities and the statutory regime.

Myth two: No capacity, no crime

At the other extreme, it is not unusual to hear it be explained that the police will not take any steps to investigate or arrest P where it is shown that they lack capacity to make certain decisions for themselves. This often leads to strange formulation of care plans where the only restriction imposed on P will be verbal redirection, even if they are about to commit a serious criminal offence.

It is worth remembering that the concepts of capacity and criminal responsibility are distinct. In short, just because P does not have capacity to make a particular decision it does not necessarily follow that they are unable to form the necessary mens rea to offend. Likewise, the concepts of fitness to plead in the criminal courts and capacity to conduct proceedings are (for now at least) distinct.

Myth three: The right hand and the left hand

One of the more complex scenarios is where the criminal courts have imposed restrictions on P, be it through bail conditions, a community sentence, an ancillary order or licence conditions. Those restrictions can provide a conceptual and jurisdictional headache for any extant Court of Protection proceedings.

The simplest example is in respect of P’s residence: if the criminal court imposes, for example, a bail condition on P that she resides at a certain address, then this is where she must reside. The Court of Protection cannot determine between the available options and determine that she must live elsewhere. Instead, in some cases, the CoP has determined where may be in P’s best interests to reside and then an application is made to vary the bail condition in the criminal court. This requires a degree of co-ordination between different legal teams and the two jurisdictions.

More complex are cases in respect of P’s internet access: if the criminal court imposes, for example, a sexual harm prevention order on P, this order may include restrictions to their internet access. In these cases, sometimes P is assessed as lacking capacity to make decisions as to their internet access and has restrictions imposed as part of a CoP-authorised care plan. Unpicking where the restriction originates from and why it is imposed is not always a straightforward task.

P as a Prisoner

It is of concern that the Court of Protection is rarely asked to adjudicate on matters relating to prisoners who may have lost capacity to make certain decisions (though the OJCOP blog does actually include two such cases, here and here) This scarcity of cases is based on two fundamental mistakes:

Mistake one: Everyone in prison has capacity

Despite the aging prison population and the prevalence of mental health issues in prison, some mistakenly still think that everyone in prison has capacity. The rationale being that they would be detained in a secure hospital under the Mental Health Act if they did not. Such a rationale is flawed.

The prison population with (potential) capacity issues is significant. May J began to explore the issue in EG [2020] EWHC 1457 (Admin) at paragraphs 70 – 74. Likewise, just as in wider society, there is a risk that any prisoner may lose capacity during their sentence.

Mistake two: There are no choices in prison

A common mistake is that once a person has passed through the prison gate their choices evaporate. Whilst it is true that a prisoner cannot make certain decision for themselves, prisoners still have choices.

EG demonstrated that capacity to conduct a parole process is something which needs to be actively considered. But, beyond that, there are other obvious issues especially in respect of medical care and treatment. A prisoner has to consent to medical treatment just like everyone else.

P as a person

If we recognise that P may be a victim of offending, we must also recognise that some Ps are at risk of offending. Likewise, those who have offended in the past may lose capacity in the future. When we accept these basic propositions as fact, we may start to break down the myths and stop the mistakes when issues of criminality and capacity collide.

Ian Brownhill is a barrister at 39 Essex Chambers.   He was junior counsel for the Official Solicitor in JB A Local Authority v JB (Rev 2) [2020] EWCA Civ 735 and R (EG) v Parole Board [2020] EWHC 1457 (Admin). He appeared for the claimant in R (on the application of Goldsworthy) v Secretary of State for Justice [2017] EWHC 2822 (Admin) and for P in SF (Injunctive Relief) [2020] EWCOP 19. He is a trustee of the Sentencing Academy and is recommended in Chambers and Partners for his Court of Protection work relating to prisoners who have lost capacity.  He tweets @CounselTweets

Photo by Bill Oxford on Unsplash

Covert medication

By Claire Martin and Alan Howarth11th September 2020

We are clinical psychologists working in an older people’s mental health service in the North of England. One of us (CM) attended a Court of Protection hearing by telephone on 6th July 2020 and subsequently discussed its substantive content with the other (AH). I (AH) have over 10 years’ experience of working with people with dementia who present with behaviours that staff find difficult to understand and manage. For 7 years I (AH) was clinical lead of a behaviour support service that supported care home staff to deliver person-centred care to people presenting with behaviours that were difficult to understand and I currently work on a ward which provides care to people with dementia presenting with complex needs. I (AH) have therefore frequently been involved in discussions about the use of covert medications and the use of antipsychotics with people with dementia presenting with behaviours that challenge.

The hearing was listed (in CourtServe) like this:

In the County Court and Family Court at Newcastle

Monday 6 July 2020

Before Her Honour Judge Moir

Start TimeCase Details
  
11:00 AMCOP 13375644 DJL COVERT MEDICATION ISSUE 1 HOUR
    

The Issues

I (CM) was immediately interested in observing this hearing because the topic of covert medication is something which has direct relevance, not only to our work as psychologists with older people, but also to important issues of how any of us might be cared for and ‘managed’ when we lack capacity to make decisions, such as what medications we take.

Many people with dementia are unaware of their mental and physical health difficulties and therefore refuse medications that they are prescribed. If people lack capacity to make decisions about their medication it is sometimes agreed that it is in their best interests to be given medication covertly (usually in food or drink), although that is generally only in exceptional circumstances. In my (AH) experience, when someone with dementia refuses medication, their medications are ‘rationalised’ so they are only prescribed the most vital medications. It would only ever be those that would be prescribed covertly.

It is also extremely common for people with dementia to present with behaviours that challenge at some point during their illness. These behaviours can include agitation and aggression and can therefore be dangerous for the person with dementia and those around the person (e.g. family, care home staff, other residents). Current guidelines from the National Institute for Health and Care Excellence emphasise the importance of using psychosocial interventions as the first line of treatment for behaviours that challenge in people with dementia. Antipsychotic medications are only recommended when the person with dementia is at risk of harming themselves or others or experiencing severe distress. The reluctance to prescribe antipsychotic medications is partly due to our understanding of these behaviours in people with dementia. They are not symptoms of dementia and are better understood as a communication of distress, disorientation and misperception. Whilst medications can be sedating they rarely address the distress that drives the behaviour. Additionally, reviews of their efficacy suggest that it is modest at best. Finally, antipsychotic medications can also have unpleasant side-effects including drowsiness, headache, weight gain and gait disturbance (which might lead to falls). More significantly, on average, for every 1,000 people living with dementia who experience hallucinations, delusions or agitation and who take antipsychotics for 6 to 12 weeks, 12 will have a stroke because they take an antipsychotic and 11 people die because they take an antipsychotic.

Understandably, the decision to prescribe an antipsychotic to a person with dementia and administer it covertly should not be taken lightly. Counsel in this hearing noted that it represented a ‘significant interference’ with P’s human rights. We would argue that such a decision should only be made when there is significant risk and/or distress, when all other interventions have been shown to be ineffective and the use of antipsychotics has been shown to be effective.  

The Hearing

There had been various previous hearings and the outstanding issue for the judge at this hearing was solely whether covert medication was in P’s best interests, and if so, the manner of administration.

P is 78 years old, lives in a care home and has a diagnosis of dementia. The clinicians involved in his care were agreed that his prescribed medication was best administered covertly (with his food or in his tea) since a) their consensual assessment was that P lacked capacity to decide issues regarding his medication and b) it was in his best interests to receive the prescribed medication.

Counsel for the Local Authority maintained that P could not retain information relating to the need for his medication – which was to do with ‘agitation’ and ‘cardiovascular disease’. We learned that in January 2020 P’s GP and a registered nurse made a best interests decision to administer covert medication of an antipsychotic (Olanzapine), an anti-hypertensive (Ramipril), Aspirin and a Statin. These medications were mixed into tea and food. This was considered the least restrictive approach as we were told that P would refuse medications. The GP had confirmed on three separate occasions that P lacked capacity to decide about his medication and had made various reports for the court. The GP had reported that the antipsychotic was to ‘prevent agitation and distress’.

The position statements make clear that it was the GP’s medical view that the medications were ‘safe and effective’ for P’s care. The position statements and hearing did not mention any secondary care older people’s mental health involvement with P, which we discuss below. At the hearing we were told that the medication ‘prevented or assisted in protecting himself and others when he becomes agitated and difficult to deal with’ and we were informed that P posed ‘a risk to himself and others, including residents and staff’, suggesting aggressiveness could be present. It was argued that:

“if covert medications are not given P would refuse to take them.  His own wishes and feelings can only be concluded to be that he doesn’t wish to take the medication. Covert medication is proportionate and necessary since there is evidence that a lack of these medications would lead to a decline for P and increase risks to other residents and staff”.

Counsel for the LA raised a concern about Article 5 and Article 8 rights:

We are conscious of the interface with Article 5 and Article 8 rights and we are clear that this is definitely a significant interference.  But as I’ve opined, it must be that the medication, and the administration of the medication is in his best interests, not only as far as his health is concerned but also that, without it, he places himself, the staff and other residents at risk. 

Counsel for the Local Authority

The hearing took less than an hour and the Judge made a swift declaration that it was in P’s best interests to receive (all) his medication covertly, with a six-month review.

What we understand to be the facts

Having observed the hearing there are a number of issues that we accept as factual. Firstly, the judge informed us that the position statement was ‘comprehensive’ and all parties agreed that P lacked capacity to make decisions about his medication. Secondly, the GP reports that the antipsychotic was effective in reducing P’s agitation. Since we have not been able to observe P’s behaviour, we have to accept this as true. Finally, all those involved acknowledge the presence of significant risk. There were clear risks, that had been documented over time, regarding increasing agitation and the suggestion, at the hearing, was that physical aggression was a risk to others and to P himself.

What we are concerned about

There are also a number of issues that cause us concern. It was agreed that covert medication is in P’s best interests but there was no discussion of P’s previous wishes at the hearing observed. Whilst we can probably agree he would not want to be distressed or be a risk to others, he may have been strongly opposed to medications throughout his life. It is also very possible that, due to the side-effects of antipsychotic medication (highlighted above), he would prefer non-pharmacological interventions to be utilised instead.

This leads us on to our second concern which is the view that the administration of antipsychotic medication covertly is the least restrictive intervention. As discussed previously, current guidelines suggest that the use of antipsychotic medications is one of the most restrictive interventions. Administering that medication covertly is arguably even more restrictive. Whilst it does not involve physical restraint, it is dishonest and requires care staff to lie. This is significant and highly unusual in care settings. A paper produced by the British Psychological Society proposes a stepped care approach to the care and treatment of behaviours that challenge in dementia. When the difficulties emerge, the first step involves the GP and care setting ruling out physical causes and assessing/monitoring the behaviour for a period (4 weeks is suggested). If difficulties persist, the GP and care setting would deliver “low intensity interventions” (e.g. developing life histories, changing the environment) to see if they resolve the difficulties. If those interventions are unsuccessful the paper suggests moving to step 3, which involves practitioners more experienced in working with people with dementia becoming involved. This would often be the local secondary care older adult mental health service. If the involvement of that service does not address the difficulties there would be a move to step 4 (the final step) which is the delivery of more specialised, individualised interventions often delivered by specialists in behaviours that challenge.

Pathways of care vary across the country; in the north east of England all older adults have access to local older adult community mental health teams and most have access to specialist services that work specifically with behaviours that challenge in people with dementia. In the case of P, whose behaviours were evidently viewed as very risky, it is therefore highly unusual for the GP to be the lead health professional involved in making decisions about his care. We would expect a variety of mental health professionals to be, or have been, involved. It is, of course, possible that those services had been involved and less restrictive interventions had been tried, though they were not mentioned in the hearing and it would have made sense for the professionals that had been involved to be part of the court proceedings.

Furthermore, even if less restrictive psychosocial interventions had been tried and failed, there is a concern about how frequently P’s medication will be prescribed covertly. The decision was that it was in P’s best interests to receive the identified medications covertly. However, it is perhaps unlikely that P will always refuse his medications.  Many people with dementia refuse their medication some of the time but few would do it all of the time. It would therefore be sensible to have an approach that is more refined and states that P will receive his medication covertly only if he refuses it. We have a duty under the Mental Capacity Act to deliver the least restrictive intervention and therefore we need to be able to adapt depending on the circumstances. Our concern is that a blanket agreement, that it is in P’s best interests to receive his medications covertly, might mean that he always receives them covertly and that less restrictive interventions will not be tried.

Care homes are very busy and staff have a large number of tasks to complete on a daily basis. There is also often only the minimum number of staff required on shift. As a result, staff often feel under pressure and will prioritise interventions that are quicker. It is undoubtedly quicker to deliver P’s medication covertly than to sit with him for 5-10 minutes to assist him in taking them overtly. A blanket decision that it is in his best interests to have his medication covertly therefore makes it more likely that this becomes common practice and alternative, less restrictive, interventions are not implemented. That, according to the Mental Capacity Act, would not be in his best interests.

Finally, we also have a concern about the claim that the medications are “safe”. P might not have experienced any obvious side-effects from taking the antipsychotics yet, but the risks still remain. The risk of stroke and death is high (relative to most medications) and P has cardiovascular difficulties which would be likely to increase those risks for him. Whilst that does not mean that he will suffer a stroke or die as a result of taking antipsychotics, we believe that it is perhaps complacent to view them as safe because “it is not possible to know in advance what will happen to any individual person”. Current guidelines state that the person with dementia should be reassessed every 6 weeks to see if they still require antipsychotics, and that advice therefore suggests that they can never be viewed as safe.

Reflections

When observing a hearing in the Court of Protection we see only a snapshot of a person’s life and the decisions made about them at one point in time.  This is against the backdrop of multiple, deliberative processes both in best interests meetings outside the court and in COP hearings making decisions about care. We are conscious that, for any case observed, there is likely to be a lot more information that we do not know, than that of which we are aware. So, all of our reflections about covert medication in this case are written with that caveat.

My (CM) initial response to this hearing was surprise at how quickly it was accepted that covert medication was the least restrictive, safest and most effective means of caring for P; then to wonder why, if this were the case, we hadn’t heard evidence of failure of other, less restrictive, options tried, with clinical input from a challenging behaviour team (such as psychosocial interventions, in accordance with NICE guidelines and BPS recommendations outlined earlier). It made me wonder whether the judge was aware that other, effective and less restrictive, treatment approaches exist and, indeed, that there is NICE guidance detailing their use.

We would argue that covert medication is always an approach that needs careful consideration, especially in the use of antipsychotics with people with dementia, due to the potential harms outlined earlier. Therefore, efforts to find alternative ways of managing a person’s need should always be tried first (or at some point, once an imminent risk situation has been addressed).

In 2009, the Banerjee Report highlighted the risks of antipsychotics in dementia. Since then there has been a lot written on the importance of utilising alternative non-pharmacological interventions. Those interventions can be time-consuming to develop and implement. In order for these interventions to be implemented, care homes need to commit to them by dedicating resources (mainly staff time). The NHS also needs to ensure that it has the appropriate expertise within mental health services to support people with dementia presenting with behaviours that challenge and those that care for them. Unfortunately, care home settings and the NHS, in our experience, have been reluctant to commit those resources and an over-reliance on antipsychotic medications remains. Judgements like the one that is the subject of this blog unfortunately perpetuate this, through the lack of scrutiny of the use of antipsychotic medications. If the courts do not insist that national guidelines are followed (or make it explicit that they have been) it has the potential to make it more difficult to implement non-pharmacological interventions in the future.

It left me [CM] feeling that, if I were in this situation, I would want anyone representing my best interests to be fully briefed and informed about all methods of managing my behaviour and to argue for the least restrictive and harmful, not only for others, but also for me.  Some approaches might help to reduce some risks – such as aggression to others – but they can increase other risks to the person themselves. It is the balance of those risks that is emphasised in the guidance about caring for people with dementia whose needs can be difficult to understand and meet, but who, with no voice of their own, often find that their emotional and physical needs are secondary to those of the (often under-resourced and ill-equipped) wider system.

Claire Martin is Lead Consultant Clinical Psychologist, Older People’s Clinical Psychology Service, Gateshead. She tweets @DocCMartin

Alan Howarth is Consultant Inpatient Clinical Psychologist, Older People’s Clinical Psychology Service, Gateshead. He tweets @DrHogie007

Image by Christina Victoria Craft on Unsplash

Authorising restraint– an uneasy judicial decision

By Matthew Timm – 7th September 2020

I first learnt of the Open Justice Court of Protection Project on Twitter. After sending a direct message with a few questions, I received a helpful response and was ready for my first hearing. Fortunately, Mr Justice Hayden (Vice President of the Court of Protection) was sitting the next day. After emailing the court, I received a Microsoft Teams link to join the hearing (Case Number 13635522 on Monday 17 August 2020).  I waited in a virtual waiting room for around an hour (apparently due to technical problems with getting the video-platform working satisfactorily) before being admitted to the virtual court, where the clerk asked me to turn off my camera and microphone. Counsel then proceeded with introducing the case, which was being heard on the “Urgent” list during the court vacation.

The issues before the court

The person at the centre of the case (“F”) was described as an intelligent, articulate woman. She is 38 years old and has end-stage kidney failure. She had refused dialysis between 28 July and 11 August 2020 and was at a real risk of dying – although the week before the hearing she had accepted two sessions of dialysis and had apparently agreed to another scheduled for the afternoon of the court hearing.  In the view of the applicant Trust (represented by Vikram Sachdeva), F’s continued compliance cannot be relied on, and so urgent determination was needed as to whether or not she has mental capacity to consent to, or to refuse, the treatment –  and if not, whether it is in her best interests to provide it against her wishes, including restraint if necessary to enable this.  F was represented by Nageena Khalique, via the Official Solicitor.

The Care Plan

All parties accepted that F lacked the capacity to make decisions regarding her treatment.  This was based on the evidence of an independent expert witness who found that F did not accept that dialysis was keeping her alive and believed instead that doctors were using it to try to control her. She was  diagnosed as having a  “complex psychotic illness” which, in this expert’s view, meant that F was unable to understand, use and weigh information about her renal failure and the fact that dialysis was life-saving.

Mr Justice Hayden accepted the evidence that F lacked capacity relatively early in the hearing saying that he was “not really struggling with the issue of capacity” and wanted to “direct my focus on the mechanics of the care plan and the question of best interests”.

Initially, the applicant Trust providing F’s treatment sought a care plan to provide 3 weeks of dialysis using restraint if necessary, and general anaesthetic in an emergency. The Official Solicitor did not oppose restraint, if necessary, but also presented for discussion some less restrictive measures that would encourage F to comply with further dialysis so that restraint would not be necessary.  Before issuing a court order, Mr Justice Hayden set out to understand why F was refusing treatment.  

Why was F refusing treatment?

It was stated early on that despite the fact that F is a trained pharmacist, she believes that homeopathic remedies could cure her.  But during the medical evidence in support of the care plan, it became apparent that F’s reasons for refusing treatment were deeper than a desire for homeopathic remedies. F believed the doctors treating her had malign intent. At one point, Mr Justice Hayden described her belief as amounting to the view that dialysis is “a punishment inflicted on her by medical professionals”.  Both F’s mother and F’s husband (they were currently going through the process of divorce) described her refusal of treatment as part of her emotionally disturbed state.  According to her mother “she’s not able to make rational decisions. She’s erratic and emotional”. She thought F was suffering from a mental breakdown.  Her husband reported that F had “conspiracy theories” more generally and mentioned her views about fluoride in drinking water and food contamination.  According to the Official Solicitor, F was also suffering from an “extra layer of human suffering and sadness” as she went through the process of divorce from her (arranged) marriage.

The care plan as originally filed concentrated on dialysis and on enforced compliance with it. It did not include mention of her psychological and psychiatric health.  Mr Justice Hayden considered the need for psychological and/or psychiatric treatment to be intrinsically linked with the treatment relating to her kidney disease.  The problem with ‘talking therapies’ is that such therapy requires active engagement – which based on F’s history with dialysis would be unlikely. The resolution reached was a dosage of anti-psychotic medication which takes 4-6 weeks to have any beneficial effect. It suddenly became clear to Mr Justice Hayden that the care plan envisaged had increased in length dramatically compared with the 3-week period originally envisaged.  

Further questioning of the witnesses from the NHS trusts revealed that the proposal was for F to receive dialysis treatment from one NHS Trust and psychiatric treatment from another Trust entirely. Mr Justice Hayden was quick to require that both be dealt with by the same NHS Trust in the same hospital. All agreed that this would be in F’s best interests. Mr Justice Hayden did not approve the care plan in its present form and asked for an amended care plan to be submitted after the hearing.  This will include approval for restraint, if F refuses dialysis.

How could restraint be in F’s best interests?

Having determined that it was in F’s best interests to receive both dialysis and psychiatric/psychological treatment from a single hospital, and for a dosage of anti-psychotic medication to be administered, the question remained of how dialysis would be provided if F refused it. She had, of course, recently accepted dialysis treatment on several occasions, although nobody quite knew why she had been willing to do this.  One of the treating doctors suggested it was because “she doesn’t feel she has a choice”.  Mr Justice Hayden noted that she seems to get on much better with female carers.  Restraint might be avoided if (and when) the anti-psychotics start to work (but that will take up to 6 weeks) or with what counsel instructed by the Official Solicitor described as “cajoling”.  In the meantime, both physical restraint and – if necessary – general anaesthetic were on the table. 

Hearing from an Acute Service Manager (a registered mental health nurse by background), the three levels of restraint included in the care plan were explained. Restraint was seen as “a significant last resort” – preceded by other attempts to enable dialysis such as “therapeutic support”, “verbal de-escalation” and “verbal reassurance”.  All three levels were low level restraint and ranged from a straight arm hold to something called a “finger and thumb hold” designed to prevent F from lashing out. To me, his evidence appeared rehearsed and as if speaking from a textbook. A welcome interjection from Mr Justice Hayden reminded the witness that the application concerned F’s best interests. Any restraint could only be imposed for a maximum of a few minutes. Dialysis takes several hours. The witness explained that restraint would be used for any immediate agitation to try and calm F down and encourage her compliance, though he admitted it may reaffirm her malign intent beliefs. There was also debate over the use of general anaesthesia (GA) in emergency situations – especially given that there are inherent risks to administration of GA.  It was clear that authorisation of general anaesthetic was limited to specific, well-defined and unambiguous life-threatening situations (although as I didn’t see the care plan, and this was not specified in court, I’m not sure what those were).

Mr Justice Hayden noted his strong resistance to making orders restraining patients saying that it is “counter-intuitive for judges in this jurisdiction”.  However, he also said that in his view, “making an order for restraint would mean it isn’t necessary.  Often giving orders is all that is needed”. Whilst this logic can be followed, it appeared to me to be overly optimistic, considering F’s state of mind, to authorise restraint as a bargaining tool in obtaining compliance with dialysis. The traumatic ramifications of such restraint being carried out against F’s will sat uneasily with me, albeit I can accept that it would be the lesser evil compared with allowing F to make a decision – originating from her mental illness – to refuse life-saving treatment.  My concern is that F requires regular dialysis to survive and, in principle, F could be restrained each time she requires dialysis for the entirety of the court order, currently 12 weeks. With F’s human rights in mind, every part of me does not want to order potentially limitless restraint. However, I equally want F to survive. If it follows that no other means of ensuring her survival exist, and only by ordering restraint can F be saved, then I reluctantly reach the same conclusion as Mr Justice Hayden.

Where did F’s wishes fit into best interests?

We did not hear directly from F herself in the court.   From the outset, counsel instructed by the Official Solicitor explained that F had been invited to participate in the proceedings and had said she did not want to. Despite Mr Justice Hayden expressing his wish to speak with F and advocating video-conferencing technology to allow such conversation to be in private, F turned down the proposal citing that she had submitted a written statement and did not want to speak with a stranger. She was asked again in the lunch break and returned the same answer, leading counsel to say that “it would not be helpful to, how shall I put it, labour the point”.

There was no suggestion that F wished to die.  In her husband’s view, F’s recent compliance with dialysis on the last occasion was as a result of his taking her children (whom she “loves dearly”) to visit.   Mr Justice Hayden clearly found this statement powerful and compelling evidence that F did not want to die. It seemed that she lacked the capacity to understand that not having dialysis would result in her death, despite the fact that she has “end stage” renal failure.  According to Mr Justice Hayden, “her delusional belief system has caused her to disconnect from her central wish to live and to get better”.  He authorised compulsory treatment, with physical restraint and general anaesthetic “in extremis”.  He saw these measures as “necessary and proportionate because it is necessary to save the life of this still young woman who has much to give and indeed much to receive”. 

Conclusion

The wishes of F were clear – and expressed in two handwritten letters to the court (which I of course could not see and which were not read out). She does not want dialysis. She does not accept that it is life-saving. The most difficult aspect of this case is that F requires ongoing and regular treatment. Restraint was authorised for an unknown number of occasions in the 12-week period following the hearing. Moreover, it was acknowledged that imposing restraint would reaffirm F’s delusional paranoid belief system (that doctors are trying to control her) and likely inhibit the progress of her psychiatric treatment. To override F’s wishes without hearing directly from her (since she declined to participate) was harrowing to observe and it somehow felt like the wrong conclusion. Having said that, F has a mental illness from which she can recover. She loves her children. She does not want to die. She ought to be saved. I have sympathy for those responsible for determining best interests in circumstances as difficult as these. Each competing factor pulled me in a new direction and proved illuminating to witness. In conclusion, and with all things considered, my discomfort with the authorisation of restraint in this case is ultimately lessened considering that no other means exist for ensuring she gets treatment,  and on the basis that F ought to be kept alive. Indeed, my guiding light is the optimism held out by Mr Justice Hayden that F will go on to lead a fulfilled and loving life.    

Matthew Timm is an aspiring barrister who has just started the Barrister Training Course in London. He has experience working for an NGO and is interested in Human Rights. He tweets @matthew_timm

Photo by JESHOOTS.COM on Unsplash

%d bloggers like this: