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 Howarth – 11th 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

Lasting Powers of Attorney: Preferences and Instructions

By Heledd Wyn – 3rd September 2020

Hearings in the Court of Protection sometimes include consideration of Lasting Powers of Attorney (LPA). Did the person have capacity to grant the LPA? Do they have capacity to cancel it? Is the attorney acting in the person’s best interests?   In this blog I consider the importance of LPAs as part of advance care planning, with particular focus on one part of the LPA form – the section on Instructions and Preferences.

The Mental Capacity Act 2005 introduced for the first time a provision for people to appoint someone of their choice to make health and welfare decisions for them if the time were to come when they were not able to make these decisions for themselves (ss. 9-14).  This is the Health and Welfare Lasting Power of Attorney.  There is separate provision for a Property and Financial Affairs Lasting Power of Attorney (which replaced the earlier Enduring Power of Attorney).  More information about both the “Health and Welfare” and the “Property and Affairs” LPAs (and guidance about how to make one, including a telephone information line number) can be found on the government website here. 

A power of attorney is a document that must be entered into as a deed under which one person (“the donor”) grants to the other person or people (“the attorney(s)”) the power to act on behalf of and in the name of the donor. Without getting too legally technical, a deed is a written document which is signed with a number of formalities and creates a binding obligation once it has been signed.  This is important when considering creating and using Lasting Powers of Attorney as a deed, once signed can only be revoked by another separate deed. 

An LPA must be completed using the specific form designed for that purpose (here) and must be registered with the Office of the Public Guardian (OPG).  It is possible for members of the public to complete an LPA form online themselves, or there are solicitors specialising in this area who can help.

No matter how you choose to complete the LPA forms (whether online yourself, on a paper copy requested from the OPG, or with professional assistance) you will be asked to consider setting out your “Preferences and instructions”. This is the part of the form where you can tell your attorneys how you’d prefer them to make decisions, or where you instruct them as to what they MUST do.  The form tells you that this is optional and that “Most people leave this page blank – you can just talk to your attorneys so they understand how you want them to make decisions for you”. 

To my mind, this section is the most important part of this form! 

Simply signing a piece of paper giving authority to another person is really not very useful. How is an attorney to know what you would like them to do when the time comes to make decisions? An attorney – whether they are family, friend or professional is required, by law, to act in the best interests of the “donor” (the person on whose behalf they are making decisions) and this means – amongst other things – giving great weight to the incapacitated person’s values, wishes, feelings and beliefs.  Unless you wrote down what those were, it can be hard for the attorney to feel confident that they are doing a good job.  

LPAs are not simply pieces of paper to be bandied around. They are powerful documents and ones that really should have a lot more thought put into them than simply slotting in names and addresses of those who have been persuaded that they can take on the mantle of managing the life of another adult who no longer has capacity when they have little concept of the difficult burden this can be.  In fact, attorneys sometimes become “frozen” – overwhelmed by the responsibility of making potentially life-changing decisions for someone, perhaps having accepted the role of attorney without any appreciation of how difficult this can be, or not having adequately discussed or been informed about the person’s wishes.

By giving proper consideration to the section called “Preferences and instructions”, these documents can be infinitely more useful, providing support and information to the attorney about what the donee wants them to do. 

Let us take each in turn and look at some of the questions that should be asked, the answers considered carefully & proper note made of them. 

Property & Financial Affairs

Some things that you may want to consider are:

  1. Who is on your existing professional team? Think accountant, financial adviser, lawyers. 
  2. Where are all your bank accounts/investments held? Do you have a neat ‘black book’? Or are you someone who keeps their financial affairs in total disarray – yet you know where everything is. 
  3. Will your family know how to contact your financial adviser/solicitors/accountant? Do they have their contact details? Incidentally, I think it is a good idea to use the opportunity to ‘notify’ these people in the LPA form – that way there is always a record of the team & they can be tracked down much more easily. 
  4. Do you have any particular views on investing; e.g. ethical investing? Will your attorneys know to honour these wishes? 

Instructions will use the words such as “must”; essentially a command to your attorneys that they have to do something specific. Examples of “instructions” given in the  OPG Guide include:

“My attorneys must send annual accounts to my brothers and sisters.”

“My attorneys must continue to donate to charities that I have supported or for which I have set up standing order payments.” 

Preferences will use words such as “like” or “prefer”, and are intended much more as guidance to your attorneys what they might want to think about rather than being prescriptive. Examples of “preferences” given in the OPG Guide include:

“I prefer to invest in ethical funds.” 

“I would like to maintain a minimum balance of £1,000 in my current account.” 

Health and Welfare

This is possibly the most important section to complete as it allows you to discuss, consider and specify, key issues such:

  1. Where you might like to live in the future
  2. Who your attorneys should consult with when making decisions?
  3. What your current health is like – including any diagnosis and prognosis
  4. What medication you are taking that may affect decision making ability
  5. Whether you have hearing aids or glasses?
  6. Who is your existing GP, dentist and optician?
  7. What is your religion?
  8. What food and drink do you like/not like?  
  9. What hobbies do you have?
  10. What sort of treatment would you accept or decline?
  11. Do you have an existing advance decision?
  12. Have you discussed your wishes about DNACPR with your GP/hospital consultant? 

Examples of “instructions” given in the OPG Guide include:

“My attorneys must not decide I am to move into residential care unless, in my doctor’s opinion, I can no longer live independently.”

“My attorneys must ensure I am given only vegetarian food.”

Examples of “preferences” given in the OPG Guide include:

“I would like to take exercise at least three times a week whenever I am physically able to do so. Whether or not I am mobile, I would like to spend time outdoors at least once a day.” 

“I’d like to be prescribed generic medicines where they are available.” 

The possibilities here are endless, but there may be some things that are absolutely ‘set in stone’. If these things that are so important to you are not written down, how is anyone to know what they are in the future? 

An alternative view? 

If you are not sure that you are able to commit to these instructions or preferences – then you may want to consider a letter of wishes or a side letter. This is a separate document to the LPA and can contain all these instructions and preferences. However, unlike if they are included in the LPA itself, they are not legally binding. They should act as a guide to your attorneys and they may feel themselves morally obliged to pay attention to what you have set out. However, unlike something that is set out in the LPA (as part of the formal deed) these wishes could potentially be overridden. 

What should I do? 

Much will depend on your own views and whether you have strong views on things that you are sure will not change or whether you are someone who likes to ‘tinker’ with things as life moves on. If you are determined that something should or should not happen – then it should go in the LPA. If you want the flexibility, then put it into a side letter as you can then alter this as life changes. However, if you do take this option, make sure that your attorneys know where you have kept your letter of wishes – they are of little use separated from the LPA! 

If you are very clear on how your attorneys should act, this would mean less ambiguity. Less ambiguity means fewer opportunities for (mis)interpretation of your wishes and feelings. Should your attorneys be called upon to explain their actions – either by the OPG or the Court of Protection, it will be much easier for them to simply point to the instructions and  preferences you have set out.  If there were ever any form of ambiguity or dispute, it is far better for all concerned to have a set of instructions and preferences to rely on rather than having to second guess someone’s wishes and feelings. 

Heledd Wyn is Director and Head of Long-Term and Elderly Care at Gregg Latchams Solicitors providing full consultancy services relating to estate planning, long term care and asset protection. Heledd has experience in inheritance tax planning, NHS Continuing Health Care Funding and complex Court of Protection applications.  She tweets @Heledd_Wyn 

Photo by Scott Graham on Unsplash

Justice Delayed

By Gill Loomes-Quinn – 1st September, 2020

In February 2017, as part of my PhD research, I spent a month at the Court of Protection at First Avenue House, High Holborn, in London. In this blog, I share my observations from the first of fourteen hearings I observed during this time – focusing on what was to become a key theme across my observations: that of Delay as a feature of cases in the Court of Protection. I consider the causes and impact of delay in this particular case, as well as my responses to these observations as a disabled activist and socio-legal researcher.

If anyone were to ask me for advice on how to approach a PhD, something I would emphasise first and foremost would be to grasp any opportunity that comes your way, and to keep your eyes open for ways to create your own chances. It was this approach that led me to London, to the Court of Protection at First Avenue House, High Holborn. And so it was, on 3rd February, 2017 that I arrived for the first in a month of hearings I observed – accessing the court as a public observer under the (at that time) relatively newly implemented Court of Protection Transparency Pilot. I have written elsewhere about my experience of using the Transparency Pilot to access “Open Justice” in the court, so here I introduce the first hearing I observed and consider it from the perspective of what it reveals about mental capacity “law in action” in the Court of Protection, and about the role of the court in the lives of disabled people.

The Hearing

The hearing was part of an ongoing case – Case No. 12275212 ADHB v Rotherham Metropolitan Borough Council and was listed for 10.30 am before District Judge Glentworth. I arrived at court with Paul Magrath of the Transparency Project who had kindly agreed to accompany me to my first hearing, and we found our way to the waiting room where Paul explained the Transparency Order to me. A key feature of my observations, conducted physically in the court (as opposed to the remote hearings being conducted as a consequence of the Coronavirus pandemic), was the contribution of the waiting room to my experience. Across the month, the waiting room functioned as an interview space for me to talk to counsel in a hearing I was observing, or to court staff in order to learn more of the work of the court, and their views on “transparency”. It also enabled me to observe parties arrive and introduce themselves to each other informally before entering the court room. This was sometimes extremely useful for figuring out the roles of the different “actors” (although it was not always easy, and my assessment was sometimes incorrect). In this instance, it was my classroom, as I attempted to soak up everything I could about “transparency in action” and what it meant for the legal culture that surrounded me. This was a steep learning curve.

On entering the courtroom itself, Paul and I were directed to a row of seats against the back wall. No desks or other writing surfaces were available, and when Paul asked the member of court staff directing us if we could use a desk in front of us with a sign reading “for parties’ use only” on its top, he was answered with a shake of the head. This presented a practical problem in terms of how I might take notes during the hearing (recording of hearings is not permitted), and also materially shaped the role of public observer – as someone apparently expected to watch the “performance” of proceedings, but not to engage with the substance and the discourse of the hearing in the depth that required the taking of detailed notes. 

Everyone stood as the judge entered, and the hearing began. The judge asked Paul and me to give an account of our reasons for attending the hearing – “for the tape”. She also referenced the Transparency Order, confirming that we had been given a copy, but not requiring us to confirm we had understood it. While there did not seem to be any suggestion that we should not be there, I experienced it as a little daunting to be asked to speak in court. On reflection, I also question the fact that we were required to explain our presence in a hearing listed to take place in “public with reporting restrictions”. It seems to be an unnecessary barrier to Open Justice for a member of the public to be expected to justify their presence in a “public” court. After this preliminary procedure, the substantive hearing began.

The hearing was part of an ongoing case concerned with “varying or terminating an urgent or standard authorisation under the Deprivation of Liberty Safeguards”. It began with what was to become a theme across many of my observations: delay. In this instance, the respondent (the Local Authority) had requested an adjournment to this hearing following three previously vacated hearings. Following the court’s refusal to adjourn, the Local Authority had informed the judge by email of its decision not to attend. So the Authority was not in attendance or represented at this hearing – a circumstance that the judge described as “staggering”. I then heard of the litany of preceding delays to the progress of the case so far – including in obtaining an appropriately qualified psychiatrist to assess P’s capacity. This was highlighted as particularly concerning as P’s condition is progressive, and it is possible that at the start of the process of attempting an assessment (around November) he may have had the capacity to make the relevant decision(s) himself. There were then further subsequent delays (of around 55 working days) and adjournments to allow the Local Authority time to identify a possible placement for P, which may involve his social worker “outsourcing” this placement.

The judge summarised her concerns about the impact of ongoing delays on P, saying she was aware that he had “expressed impatience”, and “must be wondering whether the court cares”. She also discussed with counsel for P the fact that P had expressed a wish to attend hearings relating to his case, but no steps had been taken to facilitate this. It would apparently be difficult for him to attend court in the morning, but, as the judge put it “the court is responsive” and an afternoon hearing would be possible. In principle, it would be possible for P to attend court with the support of carers, although today the care home did not believe it to be in his best interests to attend. There was a question as to whether it would be possible for the court to visit P at his care home, though the judge commented that resource issues may prevent this, as “we’re down on numbers”[1]. It was concluded that it was for those representing P to make the arrangements for a visit and that his solicitor should take responsibility for this. This was apparently “in accordance with the terms of the order” – which had presumably been agreed at a previous hearing and was unavailable to me, so I was not clear what exactly the terms of the order were. Such gaps in my decoding of proceedings were to become an ongoing feature of my observations, as judges and barristers frequently referenced documents to which I did not have access.

At the time of this hearing, P was resident in a “nursing home” and was described by the judge as “not an easy person to place”. I learned that he “wants something he can’t have” i.e. to live with his wife – this was not possible because it was apparently not what his wife wished. There was some confusion about P’s precise diagnosis relating to his loss of capacity – with it initially being described as Korsakoff’s Syndrome. However, Counsel for P informed the judge that a psychiatrist had questioned this, suggesting an alternative diagnosis of “alcohol-related dementia”. At this point, I was struck by the care and precision the judge applied to being clear about what was and wasn’t known about P’s condition, and to emphasising the boundaries of her professional role and expertise – “I’m not a psychiatrist, I don’t understand the distinction if there is one. I think we should be talking about alcohol-related dementia”. Without the respondents (the Local Authority) present in court, there was very little scope for progress in the case. Following discussions about the delays and their impact, it was arranged that a further hearing should be scheduled for 14th March 2017 (a further 5 and a half weeks away), and that arrangements should be made for P to attend “if the Official Solicitor considers it is in [his] best interests to do so”.

I then heard the judge say, and hastily scribbled down, that she was going to order costs against the respondent Local Authority under Rule 159. I had no idea what this meant, but after the hearing attempted to decode it, beginning by consulting the Court of Protection Rules[2]. I found that Rule 159 is concerned with “departing from the general rule” i.e. for determining the payment of costs for hearings to do with property and affairs (Rule 156) or personal welfare (Rule 157). As this hearing was concerned with a personal welfare decision, Rule 157 dictates that generally there will be no order made as to the costs of proceedings. The departure ordered today meant that the respondent Local Authority must cover the court costs of themselves and the applicants as a consequence of their failure to attend the hearing. I also heard the judge refer to “Rule 89”, and subsequently read that this concerns “orders made without a hearing or without notice to any person”. It means, among other things, that the order must contain a statement of the right (of P, any other party, or any other person affected by the order) to apply for a reconsideration of the decision. I took this to mean that because the respondent Local Authority was not represented in court, the judge was required to make clear that they had the right to apply for the costs order to be reconsidered. This was also my first experience of attempting to follow technical details of Court of Protection proceedings with which I was not familiar and scribbling them down to try to decode them later. It brought home to me that a degree of legal literacy and research skill can be needed to truly engage with open justice in the Court of Protection, and that it can be necessary to “hold your nerve” scribbling down complex, unfamiliar details and hoping that you will be able to piece them together later.

An Activist’s Immediate Response – Responsibility and Opportunity

My thoughts immediately after the hearing can be divided into two categories: (1) to do with the operation of the Mental Capacity Act 2005 in practice; and (2) to do with being a public observer in the Court of Protection.

Justice Delayed

Concerning the first of these points, my overriding impression was a sense of outrage at the impact that the delays described were demonstrably having on P and on his quality of life. This “touched a nerve” as I recalled the times, when I had found myself waiting – caught in a trap of disability-related bureaucracy. And I felt a sense of righteous anger on P’s behalf. It seemed that the court hearing had played out (on a formal “stage”) a type of experience that will be familiar to most disabled people and our families and others who support us, but that can often feel isolating, and hidden from the rest of society. I have no way of knowing the cause of the delays in this case, beyond the judge’s comment that P was “not an easy person to place”. But I was prompted to reflect on my personal and professional experiences of often well-meaning and compassionately motivated professionals working as part of a system rooted in intransigence. I found that afterwards, as I went to buy lunch on Chancery Lane, I could not shake the sense of outrage at the possibility that bureaucratic delays may have led to a person with a progressive, degenerative condition having been robbed of the right to make a decision of such obvious importance to him (had the capacity assessment happened at the point when it was suggested he may still have had capacity), and then subsequently of the right to attend court and participate in his own hearing (on the three occasions when scheduled hearings were adjourned at the request of the Local Authority). Gladstone’s legal maxim that “justice delayed is justice denied” seemed frustratingly apt in this case, and it seemed that the laudable principles at the heart of the Mental Capacity Act 2005 – particularly that “all practicable steps” should be taken to promote the capacity of a person at the centre of a decision (s.1(3) MCA 2005), had fallen prey to the grinding gears of local government (in)action. My quest for “law in action” in the Court of Protection had begun with an exposition and interrogation of the consequences of inaction.

Bearing Witness

This leads to the second part of my initial thoughts on this hearing. I was left with the impression that as a public observer in the court, I had borne witness to the exposition of an injustice that would likely otherwise have been felt only by P and those immediately surrounding him. I had seen and heard the judge condemn as “staggering” the decision of the respondent Local Authority not to attend the hearing, and to use the court’s discretion to award costs against the Local Authority, departing from the “general rule”, as a way of further sanctioning this behaviour. While these may accurately be understood as responses to inferences of disrespect shown towards the court (as opposed to P), the judge’s references to P “wondering whether the court cares” meant that the authority of the court practically and symbolically ensured that P remained the central focus of the proceedings. As a consequence of this experience of “bearing witness”, I also felt a sense of responsibility – that I had seen and become aware of an aspect of social injustice, and that I should take this knowledge with me. I felt I could not just ignore or forget about it. I think this highlights the intensely personal, but also intensely public/political nature of the Court of Protection; and the reason why principles and practices of open justice and transparency are so intensely important.  At the centre of this hearing was a decision about where one individual should live. However, woven into this decision-making process are themes of social injustice – of delay and discourtesy – that are not unique to this individual, or to this case. In observing this hearing, I was able not only to see law in action, but to witness “on the ground” the experience of a disabled person that enabled me to “join the dots” with my own personal and professional experiences, and that informed and fuelled my activism. This meant that while I had no knowledge or involvement with P, who remained (quite rightly) anonymous to me, the knowledge I took from that, and the other hearings I observed during my month at the Court of Protection, have enabled me to “pay it forward” in shaping my activism through research and advocacy. In this sense, the enactment of mental capacity law in the Court of Protection embodies the maxim that “the personal is political”.

For disability rights activists, the transparency agenda affords us new opportunities to strengthen and inform our activism. So much of our experience of oppression – of discrimination, and of bureaucratic intransigence – happens behind the closed doors of doctors’ consulting rooms, or of local government offices. But here, in the Court of Protection, it is played out before the authority of the court, and now, before us – the public. Shining a light on collective injustice might be the first stage to challenging and changing it – if we can seize the opportunity.

Gill Loomes-Quinn is co-director (with Celia Kitzinger) of the Open Justice Court of Protection Project. She tweets @GillLoomesQuinn

Photo by noor Younis on Unsplash

[1] It is worth highlighting that the move to “remote justice” in response to the Coronavirus pandemic has widened the scope of ways in which P may access, and participate in, her or his court hearing(s) remotely from their home or hospital, with technology being harnessed routinely in order to facilitate such remote participation. (See, for example, the compelling account of “listening to Mr A’s voice” from his hospital bed, detailing the steps taken to ensure that P was able to participate on his terms in a hearing in which he was first respondent, in Kitzinger et al., 2020 – here).

[2] SI 2007 No. 1744 (L.12)

“I have reached a clear conclusion that AB lacks capacity to decide whether or not she should be tube fed.” – Commentary on Judgment

By Lily Wildman and Emma Christie – 28th August, 2020

The judgment in the case of AB, the anorexic woman refusing tube feeding, was handed down this week (Northamptonshire Healthcare NHS Foundation Trust v AB [2020] EWCOP 40 (16 August 2020))

We observed the final hearing (and blogged about it here) as well as one of the earlier ones (here). In this blogpost we reflect on Mrs Justice Roberts’ judgment and consider whether an opportunity was missed to recognise the limited circumstances where patients with severe and enduring anorexia nervosa may have the capacity to make decisions with regards to their nutritional treatment.

This case concerned a young woman (AB) with anorexia nervosa. In a previous hearing it had been established that AB had litigation capacity and could instruct her own legal team.  In the final hearing, the issue for the court was whether AB had the capacity to make decisions relating to her ongoing medical treatment – specifically, in relation to naso-gastric (NG) tube-feeding, which she wished to refuse.

In fact, the Applicant NHS Trust was not seeking to administer NG tube-feeding. Doctors employed by the Trust were in agreement that NG tube-feeding would not be in AB’s best interests. The key question was whether NG tube-feeding would not be administered because it was not in her best interests, or whether it would not be administered because she had refused it.  The issue of whether AB had the capacity to make her own treatment decision goes to the heart of her autonomy and the principles at the core of the Mental Capacity Act 2005 (the Act).

Mrs Justice Roberts decided that AB lacked capacity to refuse NG tube-feeding. She also held that NG tube-feeding would not be in her best interests. There is a presumption in favour of capacity ( s. 1(2) of the Act) and a lack of capacity cannot be established as a result of a condition which might lead others to make unjustified assumptions about a person’s capacity (s 2(3) of the Act).   In previous cases before the court (such as E, L, X, W and Z,[1]as discussed by Emma Cave and Jacinta Tan), the very nature of anorexia nervosa has been articulated by medical experts to mean that patients lack capacity to make their own decisions about nutrition because they are unable to weigh information about their nutritional treatment, due to their extreme aversion to weight gain.  We discussed whether this approach encroaches on the creation of a blanket presumption of incapacity for patients with anorexia, meaning that they are unable to have autonomy over decisions about their nutrition.

Mrs Justice Roberts recognises this general description of anorexia nervosa as applicable to AB, describing it as ‘the development of a profound and illogical fear of weight gain’.

It seems that the judge was unable to view AB as having capacity due to the ‘insidious’ influence that anorexia nervosa had on AB’s decision making, infecting AB’s reasoning to the extent that it was no longer capacitous in relation to decisions that might result in weight gain. We understand the reasoning of Mrs Justice Roberts, who was unable to see in the case before her an example of reasoning that was not critically impaired by an irrational fear of weight gain. This is despite her observation that “AB is an intelligent and emotionally responsive young woman who is both thoughtful, articulate and insightful in terms of the position in which she now finds herself.” (para. 46 of the judgment)

While every case turns on its own facts, similar expert views were expressed in A NHS Foundation Trust v X [2014] EWCOP 35 140 BMLR 41 and In Re W (Medical Treatment: anorexia) [2016] EWCOP 13 151 BMLR 220, decided respectively by Cobb J and Peter Jackson J (as he then was).  Both judges concluded that he individuals in those cases lacked capacity in relation to decisions about their illness and treatment. Therefore, previous case law falls overwhelmingly in favour of the medical assessment that anorexia nervosa patients lack capacity to make decisions about their nutrition due to their inability to weigh the relevant information. However, it is clear from the judgment and previous statements throughout the hearings, that Mrs Justice Roberts explicitly recognises that AB and her interests are what lie at the very heart of this case, and that her decision must not be based on a comparative analysis of case law.

As Cave and Tan argue:

 “The courts should take a patient-centred rather than clinician-centred approach to framing the decision that is subject to a capacity assessment. Whilst Anorexia Nervosa sometimes affects decision-making capacity in relation to nutrition, this does not preclude a finding that the patient has sufficient capacity regarding end of life decisions.” (p. 5)

Cave and Tan, 2017

Nevertheless, we feel a slight sense of disappointment as a legal opportunity may have been missed. We agree that AB may lack capacity to make decisions with regards to putting on weight. Given the severe and enduring nature of AB’s anorexia nervosa, it may be correct to argue that this condition means that she is unable to weigh information about putting on weight, as envisaged in s 3(1)(c) of the Act. However, it was agreed by the NHS Applicant Trust and Counsel for AB that NG-tube feeding would not lead to AB’s recovery from anorexia, nor was it likely to save her life (in fact it posed its own risks to her life via ‘refeeding syndrome’).  This was why NG tube-feeding was found not to be in AB’s best interests. Accepting this agreed position, then, we see the relevant decision facing AB as one about end of life care, rather than about nutritional intake as such.

A patient-centred assessment of capacity will flexibly interpret the decision about which capacity is assessed by reference to the patient’s views on the value of treatment. A patient who lacks capacity to make a decision about their nutrition may have capacity to determine that treatment is no longer worthwhile. 

We agree with the patient-centric approach advocated by Cave and Tan, and apply it to this case to argue that, in the context of a decision about palliative care, AB may indeed have the capacity to refuse consent to the NG-tube as (potentially) life-sustaining treatment.

The decision confronting AB could be characterised as choosing between a (possibly) shorter life of better quality (at home with her family and pets) and a (possibly) longer life – dominated by restraint and NG-feeding (which itself could cause death from refeeding syndrome, and which her medical team was unwilling to administer).  We did not see evidence presented to the court suggesting that AB lacked capacity to judge whether quality or duration of life was more important. The same point is made by Daniel Wang (cited in Cave and Tan), who argues that the narrow way in which the patient’s decision was characterised by the Court in an earlier case (A NHS Foundation Trust v X [2014] EWCOP 35)

 “… led to an application of the Mental Capacity Act 2005 that is incompatible with the UN Convention on the Rights of Persons with Disabilities because, based on a diagnosis only, anorexia nervosa patients were denied the right to decide where the balance lies between quality and duration of their own lives”

Wang (in Cave and Tan, 2017)

As in the case analysed by Wang, we suggest that the relevant decision for which AB’s  capacity assessment was required was not necessarily whether to refuse or accept nutrition, but whether to refuse or accept treatment that she considered futile. (p.14)

With these issues in mind, we suggest that rather than assessing AB’s capacity in relation to naso-gastric feeding which may (or may not) improve her physical condition, instead it may be more appropriate to assess her capacity to decide between continuing treatment which has a low chance of success and opting for palliative care. We tentatively suggest that with regards to this latter issue, there may be insufficient evidence to rebut the presumption in favour of capacity.

The outcome of the judgement is the same for AB, regardless of whether she is deemed to have capacity or not, since NG feeding is judged not to be in her best interests.  But a judgement in line with our argument would have given effect to her autonomy and recognised that it is her decision to seek palliative care, rather than a best interests decision made by the judge on her behalf.

Lily Wildman is an aspiring barrister who has justgraduated with a law degree from Durham University and will be commencing the Bar Practice Course in September this year.  During the COVID-19 pandemic, she worked as a Care Assistant at a Nursing Home, which honed her awareness of the safeguards surrounding adults who lack capacity. She tweets @lilymwildman

Emma Christie is an aspiring barrister who has recently graduated from Durham Law School and will be returning to pursue an MJur researching the Domestic Abuse Bill (2020).  She has experience volunteering with dementia patients. She tweets @emmaleechristie

Image by Iñaki del Olmo on Unsplash

[1] Re E (medical treatment: anorexia) [2012] EWHC 1639; The NHS Trust v L and Others [2012] EWHC 2741; A NHS Foundation Trust v Ms X (Official Solicitor) [2014] EWCOP 35; Re W (medical treatment: anorexia) [2016] EWCOP 13; Cheshire & Wirral Ptnr NHS FT v Z [2016] EWCOP 56.

When P is in prison

By Celia Kitzinger, 20th August 2020

It’s shocking to log on to a regional Court of Protection video hearing (COP 13524261 before Her Honour Judge Davis in a regional court) and to discover that P is attending the hearing from Her Majesty’s Prison.

Instead of the domestic clutter of a family home, or the familiar backdrop of a care home or a hospital, the person at the centre of this hearing (let’s call him Joseph) was seated at a table with a blank wall behind him in a stark institutional prison setting. 

He looks to be in his mid-twenties, but I later learn he’s still a teenager.  He seems shy, overwhelmed perhaps by what is happening, not particularly communicative but obviously pleased to see his mother, who has also joined the video-conference.

We’re all on line, waiting for the judge who eventually turns up half an hour late, apologising profusely that her previous case took longer than expected. 

During that half hour we are a captive audience as Joseph’s mother engages with her son, delighted to see him after a long separation: “Hello sweetheart!  I love you Joey, my little darling. I’m here Joey.  I’m always going to be here for you, fighting your corner.  You’ll be out soon, so don’t you worry.  I miss you Joey!  I love you so much!”  She asks the sort of questions any mother would ask of a teenage son she hasn’t seen for a while: is he eating well (“you look as though you are”), is he sleeping well  (“you need lots of sleep, a growing lad like you”) and does he get enough exercise (“just 15 minutes of walking around, that’s life in here, that’s just how it is”).  She passes on messages from the family (“Nan says hi”; “Tell her I said hi back”).  She talks about what might happen when he gets out of prison – suggesting a haircut and a shave.  “I look like Big Foot!” he says.    She repeatedly reassures him that “we’ve got your back”; “I’m your Mum and I’ve got your back for ever and ever“.

It turns out that Joseph, who has autism and mental health challenges, is in prison due to an incident where he assaulted a carer and caused criminal damage to his room.  According to his mother (with whom I have spoken twice since the hearing), social services called the police and said, in effect, “nick him and charge him” (her words).  This is – says his mother – a completely inappropriate response to someone with Joseph’s problems:

“It’s just not right.  It’s wronger than wrong”, she told me. “This shouldn’t be happening to Joseph or to anyone else like him.  He’s a beautiful soul. He has his problems because he’s autistic and has mental health problems, but that doesn’t mean you can treat him like an animal and just lock him up.“

The main issue to be addressed in the hearing is where Joseph should live when he’s released from prison in ten days time. 

Unusually and – to me – again shockingly, it is Joseph’s mother (and not the Local Authority) who has brought the application to Court.  This is because the Local Authority was treating Joseph as someone who had capacity to make decisions for himself.  Joseph had refused services, challenged his autism diagnosis, and said he wanted to live in a flat on his own.  So the Local Authority had withdrawn all services.  They appeared to be content to leave him with no services on the basis that he had capacity to refuse them.

When it became clear that her son, left without services and living in a flat on his own, was involved with “bad people”, using illegal drugs, “smashing everything up”, “burning stuff”, and – once – assaulting her, his mother “begged for help”.  She was told Joseph was an adult now, and “we have to let him make his own mistakes”. 

“They were telling me I was an over-protective mother, but I knew he would be dead if I didn’t get him the help he needed.  It’s been nightmare after nightmare.  They’ve really let my family down.  There have been years of failings in services. The system is broken.“

Her view is that “they wanted to say he had capacity so they could wash their hands of him”.

Joseph’s mother had never heard of the Court of Protection at the time she made contact with the Mencap Helpline.  I spoke (with her permission) to Julie Hinnigan, who is part of the legal team which supports the Helpline (now the independent legal charity called Access Social Care).   Julie Hinnigan told me:

 “The Helpline team was very concerned about the safeguarding issues she was raising – and she had a number of reports indicating that he may lack capacity to decide about residence and care.  At best his capacity seemed borderline.  We get so many calls from parents in this situation: they’ve been fully involved in care, and then their child hits 18 and all that experience that the parents have of bringing up the child is just lost, and the focus is switched on to autonomy.  We wrote a very detailed letter outlining the safeguarding issues – self-neglect, he’d been a victim of cuckooing – and we said back then that there was a ‘risk of impulsive behaviour leading to police involvement’.  The reply was brief: ‘our social worker has assessed him as having capacity and we’re not going to disclose anything about that, we’re not going to undertake a safeguarding enquiry and we don’t agree that an independent capacity assessment is needed’.  End of.  So, then we had to find a legal firm willing to take it on.“

Once the court hearing started (with Joseph represented by Rhys Hadden for the Official Solicitor) it was apparent that some progress had been made, and a potential placement had been identified and agreed by the parties.  Counsel for Joseph’s mother (Katie Scott) summarised some of the problems ensuring the appropriateness of this placement.  Previous placements, she said, “have broken down – including in ways that have led to prison”.

“When Joseph ‘kicks off’ the only response has been to call the police and then he ends up in the criminal justice system, and his mother – for obvious reasons – is extremely keen to ensure that doesn’t happen again.  He’s also been sectioned and spent time in hospital.  The Official Solicitor and [Joseph’s mother] have raised some concerns about whether this is going to be any more effective than previous placements.” (Katie Scott, Counsel for Joseph)

The proposed placement hadn’t been discussed with Joseph because there had been no available virtual visiting slots at the prison.  It did feel to me, as an observer, as though everything had been cobbled together at the last minute.  As with many court hearings, there was mention of a prior advocates’ meeting just before the hearing started, and the sense that agreements had been reached under the pressure of knowing that the case would shortly be before the judge.

An interim placement order was agreed, with follow-up arrangements in place to see how Joseph was getting on after the move, and another hearing in early September 2020.  Meanwhile, his mother tells me that she Face-timed Joseph recently and he told her the placement was “really really good”.  He’d been baking cookies, making pizza, playing football and TV games and been to the beach!  She plans to visit (all being well on the public health front) for a family birthday in a few weeks’ time.

According to Julie Hinnigan, the failings in social services were in part due to lack of knowledge and support for autistic adults – especially those, like Joseph, who don’t also have a learning disability.  “Services for autism are often way behind specialist services for learning disability”, she says.  “People with autism like Joseph can present as very able and mask very well.  It can be genuinely very tricky for non-specialists to assess their capacity”. 

So far, at least, this story has a happy ending.  The Court of Protection has lived up to its name.  It has protected and ensured support for a vulnerable young man who is now flourishing in his new placement. 

The tragedy is that this situation arose in the first place – that he was left so much at risk, ricocheting between psychiatric hospitals and prison, without the support he needed. 

Celia Kitzinger is co-director (with Gill Loomes-Quinn) of the Open Justice Court of Protection Project. She tweets @KitzingerCelia

Image by Matthew Ansley on Unsplash

Questions of Capacity

By Louise Burrell, 19th August 2020

This judgment has since been published here: DP v London Borough of Hillingdon (Rev 1) [2020] EWCOP 45 

As an Adults Social Worker, I consider people’s mental capacity on a daily basis and complete formal documented mental capacity assessments probably once or twice a week. When financial management is involved this often results in paperwork for a Court of Protection (COP) application. I know the COP is there in the background to my work but once my paperwork is sent in, I have never given it much further consideration.   When the opportunity to observe a COP hearing arose I was very keen to see “what happens next”.

Having just been allocated a case concerning a lady in a care home who wanted to return to her own home, with a mental capacity assessment needed and a possible Section 21a appeal on the horizon, I was particularly keen to attend a Section 21a hearing.  With hearings only published late on the previous day, it was a very frustrating 4 hours that morning – sending emails and hoping for responses to attend whatever hearings I could find across England and Wales that could be identified as about a Section 21a appeal.  Attendance at 3 hearings was attempted: one was vacated, and I got no response from the other in time. I cancelled my request to attend the third one, listed for the afternoon, after Celia Kitzinger, co-director of the Open Justice Court of Protection Project came to my rescue and facilitated my attendance at Case No.11173747 Re DP before Mr Justice Hayden, from the Family Division of the Royal Court of Justice list.  She had attended the first hour or so of the hearing from its start that morning and, knowing of my interests and hearing of my frustrations, she emailed to let me know that I might want to join the hearing-in-progress via MS Teams.

The Question before the Court

This hearing was an appeal to a lower court’s decision on a Section 21a appeal.  Having missed the first hour or so, I was thankful that Celia was able to email a quick summary about DP (the person at the centre of the case) and the issues before the court.  DP was a gentleman in his 70s who, having lived in a care home for 16 years, wanted to move to an alternative care home to be closer his one and only friend outside of the care home environment.  He was not objecting to being in a care home as such. 

At the earlier hearing (on 6 May 2020 before DDJ Chahal QC), DP’s representative argued that there was insufficient evidence to rebut the presumption that P had capacity to make his own decision about where he should live.  The local authority had argued that there was indeed sufficient evidence to rebut that presumption, especially given that what was being requested was an “interim declaration” (under s48 of the Mental Capacity Act) and not a “final declaration” (under s15 of the Mental Capacity Act).  The judge in the earlier hearing had looked at the evidence on DP’s capacity – which was an assessment carried out by a doctor (not present at the hearing)  – and found various problems with the assessment, including that the doctor did not explain to DP why he was visiting him and asking questions, and the fact that the doctor did not discuss the specific decision in relation to which DP’s capacity was being assessed,  i.e. should he stay in this care home or move to another one.  Despite finding fault with the capacity assessment, the judge had concluded nonetheless that the quality of the evidence was sufficient for an interim declaration that (in the wording of s48) “there is reason to believe that P lacks capacity” to make the relevant decision.

My first thoughts were: “why on earth is this before such a senior judge? If he has capacity to make a decision about where to live then, great, get on with the move that’s he is requesting;  if he hasn’t got that capacity, then update your mental capacity assessment and get on with a best interests meeting so the gentleman has at least an answer, be that positive or negative”. 

For DP, the issue was whether or not he could make his own decision to move to another carehome so as to be closer to his friend.  For the Court, the issue was what the court should do if the capacity evidence in the DOLS authorisation wasn’t good enough to rebut the presumption of capacity.

The starting point for the judge at the previous hearing was Re F in which HHJ Marshall QC, discussing the capacity test and differences between an interim declaration and final declaration stated:

The “presumption of capacity” reinforces the general approach of the Act, that “P’s” basic right to have the power to make decisions for himself is to be respected and protected, and can therefore only be displaced by sufficient evidence establishing that he does not have capacity in the relevant respect. However, such a finding is what ultimately grounds a formal declaration under s15 of the Act, and s48 expressly confers powers on the court to take steps “pending” the determination of that question. It follows that the evidence required to found the court’s interim jurisdiction under this section must be something less than that required to justify the ultimate declaration. (Re F [2009] EWHC B30 (Fam)). 

In this case DP, acting via his Accredited Legal Representative with Victoria Butler Cole as his counsel, was challenging the fact that he remained deprived of his liberty despite the manifest shortcomings of the mental capacity assessment that were identified by the judge.  His argument was that if the court is not satisfied that the mental capacity requirement was met, it should either terminate the standard authorisation under the Deprivation of Liberty Safeguards, or vary it to a very short period (the time period of perhaps 2 weeks was mentioned) while a better mental capacity assessment is elicited.  What should not happen is what has happened in this case: it was turned into a standard welfare case, which means considerable delay (now nearly a year) in arriving at a final declaration of capacity.   Basically, the argument was that if the presumption of capacity has not been rebutted, the court cannot make even an interim decision to deprive DP of his liberty.  As the judge said, “It is deeply troubling in a mature democratic society if we are restricting people’s liberty with no foundation to do so.”

Human Rights

Although not quite the learning I had envisioned, observing the discussions between the judge and the legal representatives was very enlightening and has given me a much broader understanding of the law, and in particular the application of human rights.  I had already identified in recent weeks a personal knowledge gap in the application of human rights in my work.  Human rights, like the role of the Court of Protection, have been “lingering in the background” but in the hubbub of my daily practice rarely got real consideration.   Every aspect of the 5 hours of discussions I observed repeatedly returned to consideration of Article 5 (right to liberty and security) and Article 8 (respect for family and private life).  (I have since found the Equality and Human Rights Commission Publication GD.13.401 very helpful). 

The judge repeatedly stated that we should be guided by the principles of other Articles such as Article 6 (right to a fair trial).  Consideration should be given to P being able to access an independent and impartial hearing:  this should be within a reasonable time, without excessive procedural delays, with good conduct and diligence by all parties.  It came to light than DP may have a future claim for damages for unlawful deprivation of liberty.

Mental Capacity & DOLS assessments

It was very worrying to hear the opinions of both judge and legal representatives when discussing mental capacity assessments that are presented to them.  

  • They are often “poor”, “bad”, “inadequate”, “not sufficient”, “unsatisfactory”  or “perfunctory”.  Declarations of incapacity might be made “on the thinnest of evidence”.  
  • The judge commented on “little insights into capacity” that can be identified from very personal touches and day to day information such as a person’s actions, behaviours, likes and dislikes etc. but which are not evidenced in assessment documents. He specifically asked about what job DP had done before he had the strokes (in 2000 and 2003) that led to his residence in his current care home. (He was a computer programmer.)
  • The judge said that the doctor who carried out the capacity assessment “had not explained to [DP] what he had come to assess” adding, “that’s fundamental error” because it  does not give someone the  opportunity to prepare for the assessment or create for them  the best opportunity to provide evidence they can understand, retain, weigh and communicate the relevant decision
  • There are often instances where it appears that the assessor has not taken all reasonable and practicable steps to support the person’s capacity
  • It is not always clear that the assessment is based on a presumption of capacity that has been “displaced” (this is a “fundamental civil right”).
  • In some cases, as here, the assessment may not be assessing the right issues, and therefore missing the mark.  In this case, DP was not asked specifically about whether he understood and had weighed up the pros and cons of a move to another care home.
  • Assessments may be rooted in a paternalistic /protectionist approach aimed at protecting P.  This is “missing the point”.  One should “not eclipse or occlude the right of people to assert their own autonomy for good or bad”
  • There is a possibility of discriminatory practice due to assumptions related to diagnosis. 
  • There is an obligation to avoid unnecessary delays

Similar comments were made about the DOLS reports and the paperwork they considered “not fit for purpose”. If the work of trained professionals is in many cases inadequate, it will be interesting to monitor the situation when the Liberty Protection Safeguards are introduced and care home managers will share the responsibility. 

For me as a practitioner completing mental capacity assessments, and considering training as best interests assessor, it was rather worrying listening to these criticisms.  The judge did comment when he said this is “not surprising considering the volume and pressurised circumstances in which they are undertaken” and that “a pro forma is being used”. These comments have made me take an even more critical look at my own reports and also I have now developed the confidence to insist on multiple visits if required and enough time to complete the assessment to the best of my ability.  Having recently chaired a peer discussion group on the theme of “all practicable steps under COVID restrictions” my colleagues are all finding it difficult to maintain the standards they would like in the current working environment. 

Using a Video-Platform

In recent months, having had to attend or chair meetings on video-platforms, it was useful to observe the judge at this hearing.  I have not yet, under COVID restrictions, needed to hold a remote best interests meeting necessary to gather information and opinions of multiple professionals in order to come to a decision.  Mr Justice Hayden said that, after many months into the COVID enforced ways of working, relying on telephone conference calls, which had been the case in the initial hearing, were unsatisfactory. He felt video calls and being able to see each other were important and should be “standard practice”. 

Mr Justice Hayden was critical of DP’s care home who had been unable to make arrangements for a video call conversation (as opposed to a phone call) with him.  The judge described this as “disappointing” and said: “All creative measures should be employed to enable people in care homes to have access to their family face-to-face. I’m a little bit concerned that this care home hasn’t mastered the video-conferencing platform. Can you later get someone in your team to query this?”   I found this very reassuring because during the hearing I observed, the details of DP’s situation were not much discussed.  All parties were well acquainted with this information through the previous hearing and documents I had not seen and time was spent on the technicalities of the law.  Nonetheless it was obvious that DP remained central in the judge’s thoughts and he was making an additional effort to talk directly to DP himself. 

During the hearing I noticed that there were long periods of silence during which Mr Justice Hayden appeared to be thinking carefully – processing information, gathering his thoughts and considering his wording.  My own experience of video-conference meetings is hurriedly writing inadequate notes, in a kind of short hand that I’m confident I will understand later – and then don’t! After observing this hearing I will have no problem in asking meeting participants to pause a minute whilst giving me time make better records. 

Outcome

I was going to title this section “Conclusion”, but that would be inappropriate. At the close of this particular hearing DP still did not have a decision.  With the capacity assessment deemed inadequate, the previous judge not having addressed the key question of the Section 21a appeal and some administrative errors, Mr Justice Hayden concluded that DP’s case needed to be reheard “expeditiously” before a different district judge – so really, starting all over again.   With my very limited knowledge of the legal process, the process so far appears to be an appalling waste of resources with the time delays very unsettling for DP and detrimental to his wellbeing.  On a positive note, shortfalls have been acknowledged and are now being addressed.  I do hope that by the time the next heating is arranged a new – and better – capacity assessment will have been completed in preparation and that those responsible will not be waiting for the hearing to say a new one is needed. 

Would I observe again ?—- Yep!

I have found the whole observation experience very beneficial.  The googling, looking up of legislation, reading up of quoted case law – both during and after the court attendance – has given me a crash course in legislation, that I now realise, I only thought I understood. Listening to a talk about how the Mental Capacity Act is implemented in the courts is one thing – actually observing it as it happens is very different! 

Human Rights has become real and applied.  I can see more clearly that down at the coal face, we have real opportunity to empower our service users.  And based on what I have observed, I have confidence that if the situation of our service users  should ever require consideration by the Court of Protection,  the judge will ensure their right to participate is facilitated and their right to self-determination, if at all possible, is respected. 

I did not find the process of being able to attend a hearing easy.  Fortunately, this was how I chose to spend my day off.  Being able to respond immediately to an email, being able to set aside anything else you might have on to attend a hearing starting in 20 minutes, on an unknown topic and of an unknown time duration, is not compatible with a busy day’s work with deadlines looming.  

But by gum, I’ve learnt so much more than from the mandatory eLearnings I have recently completed.  Having got to grips with the legislation, I’m now on the lookout for a court hearing before a district judge so as to be able to observe the discussions and decision making regarding capacity, autonomy etc that challenge me on a day to day basis.

Louise Burrell is a locum social worker currently completing assignments in Local Authority Adults social care teams.