What does the Court of Protection need to know about “borderline personality disorder”?

By Keir Harding, 18 November 2020

Editorial note:  In a blog post about a Court of Protection hearing (here), Celia Kitzinger reported that the person at the centre of the case had been diagnosed as having an “emotionally unstable personality disorder” (also known as a “borderline” personality disorder) and that this constitutes “an impairment of, or a disturbance in, the functioning of the mind or brain” under s. 2(1)of the Mental Capacity Act 2005. The contested nature of the diagnosis was not mentioned or engaged with in the Court of Protection hearing (nor was it addressed by Celia in her commentary on the case) – and so we asked Keir Harding to write a piece about the diagnostic category and the way it is used by way of raising awareness, both in the legal field and more broadly in health and social care, of some of the issues involved.

“Borderline Personality Disorder” and “Emotionally Unstable Personality Disorder” are interchangeable terms for a mental health diagnosis typically given to someone who has difficulty managing their emotions, copes in ways that can cause problems for them, and has difficulties with relationships. In theory, it is a diagnosis given by a qualified mental health professional. It is classed as a mental disorder which means that a person with the diagnosis could be detained under the Mental Health Act (1983). There is a NHS webpage about it here, and a Mind page here

For the diagnosis to be given appropriately according to the psychiatric criteria,  people’s symptoms should meet the 3 Ps. Their difficulties should be: 

  • Persistent – Not waxing and waning, not relapsing and remitting but relatively constant. 
  • Pervasive – In every area of life. They shouldn’t function brilliantly in one area and not in another. 
  • Problematic – It has to cause distress to them. 

All of the above is theory. But these diagnoses are in reality very contested, and in my experience and the experience of many people who have these diagnoses, the diagnosis can be arrived at after a very brief consultation and without a thorough assessment. I argue that this means, in respect of the Court of Protection, that in proceedings where P has one of these diagnoses, it is important to establish how the diagnosis has been arrived at – and to confirm that it is the result of a rigorous assessment, rather than the ‘gut feeling’ of a clinician. The Royal College of Psychiatrists recommends that “diagnosis should only be made by those qualified to make it and only following a thorough assessment”. 

A Contested Diagnosis

There are 10 different types of personality disorder listed in the Diagnostic and Statistical Manual of Mental Disorders (the ‘DSM 5’) – which is published by the American Psychiatric Association, and used to diagnose mental disabilities in the United States and some other countries. These are: paranoid, schizoid, schizotypal, antisocial, borderline, narcissistic, histrionic, avoidant, obsessive-compulsive, and dependent. It’s also possible to be diagnosed with a “mixed personality disorder” or with a personality disorder that doesn’t quite meet the criteria for any of these diagnostic categories (“a personality disorder not otherwise specified”).

I’ve worked in a variety of mental health settings for the past 20 years and I have met fewer than 10 people with a personality disorder diagnosis that isn’t  either “borderline” or “antisocial”.  So, while in theory there are 10 types of personality disorder, only 2 of them seem to be regularly diagnosed.   

In my experience, if you are a woman who self-harms, you will get a Borderline Personality Disorder (BPD) diagnosis regardless of whatever else is going on.  Something in this system is definitely wrong. 

Research suggests that if you can be diagnosed with one personality disorder, it’s highly likely you’ll meet the criteria for another two.  So that’s 3 personality disorders in all.  In a system that aims to put people into a neat tidy box so that we know a care pathway, it becomes messy because they’re actually in 3 boxes (and they probably display some traits from a few of the other diagnostic categories too).  

Let’s take borderline personality disorder in the DSM 5 diagnostic manual as an example:  To be given the diagnosis you need to match 5 of the 9 relevant criteria.  Let’s say my friend Ian and I are on the same hospital ward.  He meets criteria 1-5 and I meet criteria 5-9.  So, we have the same diagnosis, the same treatment plan, and yet we share only one characteristic.   

Borderline Personality Disorder could certainly be argued to be the most stigmatised diagnosis out there. As long ago as 1988, an article in the British Journal of Psychiatry (“Personality Disorder: The patients psychiatrists dislike”) reported research showing that psychiatrists treated patients with this diagnosis as more difficult and less deserving of care compared with other patients.  The authors wrote:

“The PD cases [sic] were regarded as manipulative, attention-seeking, annoying, and in control of their suicidal urges and debts. PD therefore appears to be an enduring pejorative judgement rather than a clinical diagnosis. It is proposed that the concept be abandoned.”

A story of two mental health staff talking goes like this: 

“I’m having problems with my patient with Personality Disorder” 

“How do you know they have personality disorder?” 

“Because I’m having problems with them.” 

This is why I feel it’s very important that when the court accepts that someone has the diagnosis of BPD they ensure that this is based on a thorough psychiatric examination from an expert in the field, using a trusted rating scale and finding the person to have met the diagnostic criteria.  A person does not “have BPD” simply because their care team find them challenging.   I frequently meet people with this diagnosis who do not meet the criteria but have this label written all over their notes.  

Even when people are shown to have met the criteria, the court should be aware of the subjective nature of assessment for this diagnosis.  Those deciding that anger is “inappropriate” (Criterion 8) or that attempts to avoid abandonment are “frantic” (Criterion 1) may well have difficulty appreciating the unique set of circumstances those they assess are living through. 

There is a language around people with this diagnosis that invites people to treat them badly or even cruelly. They are often described as attention seeking, manipulative and in many ways not truly deserving of care. They take up places in the healthcare system that could be used for people who are “really ill”. They are ascribed mythical powers to be able to tear apart previously high functioning teams and, despite a suicide rate of 1 in 10, are rarely taken seriously when describing being suicidal. It is very hard to be helpful to people when you label them as disordered and see them as holding all the characteristics above. This isn’t something I’d expect caring people to do.

Perhaps a more useful way of thinking about this is through the lens of trauma. Up to 80% of people who receive this diagnosis will have experienced some form of abuse. I’ve very rarely worked with anyone where the difficulties they have now don’t make sense in terms of previous experiences of neglect, abandonment and abuse. If we can remember what has happened to people, we tend to be empathic. When we label that person as disordered, we tend to locate the problems in them rather than the people or circumstances that hurt them, or the circumstances of their trauma. I would bet money that this label is disproportionately applied to the girls who survived the child sexual abuse scandal in Rotherham – but the people we sympathise with now will be the people who are blamed for their problems in the future. 

Jay Watts writes of testimonial injustice once this label is applied. The words of those given the diagnosis are seen as meaningless because an expression of pain is viewed as just seeking attention, and a legitimate complaint is ‘typical PD’. “Inappropriate anger” is one of the criteria for BPD and what greater power imbalance can there be for someone whose reactions to injustice are labelled by others as “inappropriate”?

Many would argue the diagnosis can be useful and I sometimes find it helpful for those I work with, if only because it comes with ‘NICE’ (National Institute for Health and Care Excellence) guidelines (see here and here) that recommend specific ways of helping people with this diagnosis. I help a lot of people leave compulsory treatment because the care they are receiving bears no relation to what is recommended in the guidelines.  In the face of risk, teams move from “being with” people and start “doing to” people.  Collaboration ceases and as people respond badly to the restrictions (whose potential for harm is spelled out in the guidelines), this is only seen as evidence to restrict more.  Recommended therapies are not provided or are provided by those who are untrained – and despite a recommendation not to prescribe medication for BPD, polypharmacy (the prescription of multiple medications to one person daily) is rife. 

Another common theme I see in legal reports is for someone’s current presentation to be generalised to their entire life.  It can be forgotten how an inpatient environment is often perceived as harmful and not recommended for people with this diagnosis, with the ‘NICE’ guidelines telling us admission should only be used during a crisis.  When people are compelled to reside in a harmful environment, it would make sense that their behaviour changes substantially.  With that in mind I would always want the court to think about whether behaviour used as evidence for anything in one environment can reliably be applied to different environments where often that behaviour has never occurred.  

The Consensus Statement for People with Complex Mental Health Difficulties who are diagnosed with a Personality Disorder was published in 2018. In this statement  many people with lived experience and some professional bodies including the British Psychological Society stated “We would like to abandon the term ‘personality disorder’ entirely” .  That won’t happen any time soon though, and with the new edition of the diagnostic manual used in the UK (the World Health Organisation International Classification of Diseases – version 11) being published next year, it is possible that more people will qualify for a disordered personality with all the implications already outlined.  This is a scary prospect and while seeing that someone has a diagnosis of BPD will tell you much about their relationship with those who should care about them, it will tell you nothing about the value of their personality. 

I very much hope that the contested and controversial nature of personality disorder diagnoses that I’ve described here is understood and borne in mind by the Court of Protection whenever it makes decisions concerning people with one of these diagnoses.  

Two very readable lived experience pieces describing the impact of being given this label can be read (here) and (here).

Keir Harding is an Occupational Therapist and Dialectical Behavioural Therapist with 20 years’ experience in mental health and an MSc in ‘personality disorder’.  He has been a lead therapist NHS services and is now Clinical Lead for Beam Consultancy.   Keir works closely with people with lived experience to provide training, expertise and therapy to help avoid long term hospitalisation. He serves on the executive board of the British and Irish Group for the Study of Personality Disorder.  He tweets @Keirwales

Photo by Priscilla Du Preez on Unsplash

Deprivation of Liberty at an Urgent Hearing

By Caroline Hanman[1] – 17th November 2020

The person at the centre of this hearing (pseudonymised as “Michael” in this post) is a young man under the age of 18. He’s autistic and he has learning difficulties and ADHD (“attention deficit hyperactivity disorder”).  He sometimes exhibits challenging behaviour which on occasion has resulted in physical injury to other people and destruction of property. The key question before the court is where he should live – and this needs to be decided urgently because his current (temporary) placement is entirely unsuitable.  This was a directions hearing. Substantive decisions about where Michael will live will be made at the next hearing on Wednesday 18th November 2020.

Background

Until recently, the local authority (LA) provided Michael with a package of care consisting of 3:1 (and at times 5:1) staff support and he was under constant supervision. However, no application to authorise his deprivation of liberty has ever been made to the Court of Protection.  (For a useful explainer about deprivation of liberty for 16 and 17 year olds under the Mental Capacity Act 2005, see this Guidance Note from 39 Essex Chambers).  It is unclear why no such application was made.  When a person is unlawfully deprived of their liberty, a claim for damages can be brought under the Human Rights Act 1998.

This court application had been precipitated by events on 2nd November 2020.  Michael was then living in his usual placement.  He became upset and caused quite severe property damage and injured at least three people.  Police officers were called and Michael was restrained and taken to hospital where he was detained under s. 136 of the Mental Health Act 1983 and then removed to a “place of safety” (in this case, a residential care home).

The following day (3rd November 2020) it had become clear that Michael was not detainable under the Mental Health Act 1983 and a couple of days later a second opinion (requested by the Local Authority) confirmed this.  So, Michael could not remain in the “place of safety” to which he’d been taken. 

The Local Authority was unable to source a suitable placement for Michael and so he was admitted to an unsuitable placement as a temporary measure. He was admitted to psychiatric unit for teenagers with severe mental health problems on 6th November 2020.  Again, though, the LA did not make an application to the court to authorise this deprivation of liberty.

As the LA had not applied for authorisation to deprive Michael of his liberty, the organisation running the unit at which Michael had been placed sought to do so. They made contact with a barrister (Ian Brownhill of 39 Essex Chambers) who tried and failed to get hold of the LA by phone and then moved rapidly and efficiently to get the case before the court.  His actions demonstrate what can be done by lawyers who understand the system and are willing to work at unsocial hours to ensure that vulnerable people get the protection they are entitled to.  Mr Brownhill found a solicitor (Katie Webber) willing to act as Michael’s accredited legal representative (ALR) and made an out of hours application on behalf of the current placement organisation to regularise Michael’s care arrangement.   The out of hours judge, Mr Justice Poole, heard the case via email and in the early hours of Saturday morning he appointed the ALR and authorised Michael’s deprivation of liberty until the date of this court hearing.

Listening to the background to this hearing was a useful reminder of how rapidly it is possible to get cases before the court, and of the fact that the Court of Protection works (as Ian Brownhill has tweeted) 24 hours a day, 365 days a year. 

The hearing

The matter is listed before Your Lordship today”, said Ian Brownhill, “to consider Mr Justice Poole’s order and to determine if Michael’s deprivation of liberty should continue”. 

This case was listed – without a case number – as an “Urgent Hearing” before Mr Justice Cohen at 10.30am on 10 November 2020. (The case number eventually provided was COP 13677686).  So, we were observing developments in a case that had been launched only late on Friday 6th November and was here in court four days later for a directions hearing i.e., a hearing for the judge to review the case and consider what further information, evidence or action taken by the parties was needed before he could make decisions about the substantive matters before the court – here, where Michael should live).

 Michael is in a setting where he ought not to be – a setting for people who are having acute episodes under the Mental Health Act.  This is negative in terms of his best interests and also for the wider community in [this geographical area] because one of the places of safety cannot be utilised because Michael is there inappropriately.

Ian Brownhill

As the case unfolded it became clear that the LA was actively seeking an alternative placement but was having great difficulty finding somewhere that might be suitable.  I was pleased that the judge made the point that, geographically, some placements would be unsuitable because of the importance of Michael’s family being able to retain regular contact.

The LA (represented by Abid Mahmood of No5 Chambers) clearly was in a difficult situation, and no doubt was on the defensive, but at times his contributions appeared evasive and not terribly helpful (for example: “If any delay has been caused by the LA then there is an unreserved apology for this...” – when it was abundantly clear that they had caused delay).

I was pleased that Mr Justice Cohen took the time to speak directly to Michael’s parents, present in court throughout.  He ensured they had received, read and understood the draft Order (they confirmed it had arrived that morning) and he checked that Michael’s mother wanted to become a party to the proceedings, saying “You’ve obviously been a constant in Michael’s life and very much part of his ‘care package’ if I can put it that way, and I’ll happily join you as third respondent”. 

Mr Justice Cohen went through the draft order carefully, allowing for comment and adding further detail where he considered this to be appropriate.  Observers do not have a copy of the order but from what we heard in court it seems to say that Michael should stay in his current placement, which “clearly” (said the judge) has restrictions in place which amount to a ‘deprivation of liberty’ – but that these restrictions should be as limited as possible and only as necessary “for him continue to reside there”.  He paused at this point and said: “Does one not need to add in:and to prevent him causing harm to himself and to others?’”

The judge also asked Michael’s mother whether there was anything in the order that “causes you anxiety” – to which she replied “Nothing I’ve seen looks untoward. It looks absolutely fine to me, thank you.”

This exchange[2] also brought a touch of humanity to the proceedings:

This was an interesting case to observe and I feel I have learned a lot.  My professional social work experience is with adults, and although I knew, for example, that the Deprivation of Liberty Safeguards do not apply to people aged under 18, I had not fully appreciated that the court can approve a deprivation of liberty application for younger people if they lack capacity (see the guidance note here).  This admission will be stating the obvious to many people but this point had gone over my head even though I know that when the new Liberty Protection Safeguards (LPS) are introduced they will apply to people aged 16 and over.

Attending these hearings is still very new to me and I am on a steep learning curve. I had not realised that you should have your camera off (in part to preserve bandwidth) unless asked to turn it on.  And I was surprised to discover at the end of the hearing that a journalist, Brian Farmer, invited the judge to provide more detail about the restrictions imposed in the Transparency Order. I did not know that observers could (possibly) ask questions and I found it slightly odd that a journalist seemed to be making it harder to secure transparency within the Court of Protection by suggesting additional restrictions on what can be reported.  I appreciate not everyone would share this view though – and he was clearly concerned to report responsibly and not to provide the media with information that could upset the parents or risk leading to Michael being identified.

I would personally recommend that all social workers take the opportunity to observe Court of Protection hearings, whatever your specialism. They provide useful insight into how the law operates in practice and how decisions taken by professionals can impact on human rights. I feel humbled by the experience.  Remote attendance has opened things up and really helped me reflect on my practice and what I want to achieve when I (soon) return to work.

Social Work has a solid value base which demonstrates a real commitment to ethical practice and to promoting the rights of individuals.  Yet in the two COP hearings I have attended so far, I have had cause to query if this has happened and if so, where the evidence is. In this hearing it is apparently the case that Michael lacks capacity to make his own decision about where to live.  Michael’s parents were in attendance to speak on his behalf (as was his ALR and a representative from the Official Solicitor who will take over from her as his litigation friend).  But it was unclear to me if Michael had been asked if he would like to attend court or what he felt about what was happening. I cannot in all honesty say I heard Michael’s voice at any stage. He may be autistic, he may have learning difficulties, and he may lack capacity, but I would have liked to know more about him and to feel confident that his voice (the most important of all) was really being heard in the court where decisions were being made about him.

I hope to attend the next hearing and to learn how things have progressed with this case, and how Michael’s wishes and feelings are accessed and factored into the decision-making process.

Caroline Hanman is in the process of returning to Social Work following a career break, and will shortly be taking up a post in a local authority Adult Social Care team. She tweets @CarolineRTSW


[1] I am grateful to Celia Kitzinger who also observed this hearing and was sent (as I was not) the Position Statements by both Ian Brownhill and Abid Mahmood.  This enabled her to cross-check what I had written against the facts as provided in those documents and so to improve the accuracy of this report. (Celia also contributed some of the as-close-as-possible-to-verbatim quotations, including the exchange between the judge and Michael’s mother.)

[2] Observers are not permitted to audio-record hearings so all quotations in this blog post are as accurate as possible but based on written notes scribbled down during the hearing and unlikely to be verbatim.  In addition, a request was made – following a question from the Press Association journalist Brian Farmer – not to mention Michael’s specific age, but to use the term “late teens” which (according to the judge) “is one more blanket of anonymity for him”.  In the exchange above, Michael’s age was indexed twice – once by his mother and once by the judge (i.e. “a xx-year-old lad”) and the extract has been adapted to remove these references.

Photo by Phil Desforges on Unsplash

Privacy, Capacity, and the Judge’s Communication Skills

By Celia Kitzinger with Jacqui Graves, Sophie Jones, Sophie Keegan, Kris Price, Katharine Shipley and Adam Tanner, 13th November 2020

The person at the centre of this case, Ms P (in her mid-40s), has granulosa cell cancer for which she has declined recommended treatments for more than a year.  Recent scans show that the tumour has increased in size over that period, with possible metastases.  She’s also in pain.  The recommended treatment is now total hysterectomy with oophorectomy.  Ms P has continued to refuse consent to treatment.

This hearing (COP 13672912) was before Mr Justice Hayden sitting in the Royal Courts of Justice, on 2 November 2020.  It was a directions hearing to agree what needed to be done in order to make a determination of Ms P’s capacity to make her own decision about her medical treatment – and if she does not have that capacity, then what would be in her best interests.  Another hearing before the end of November 2020 will make those determinations.

There have already been three capacity assessments by people associated with the Trust, and a fourth (at Ms P’s request) by an independent psychiatrist.  All four find that she lacks capacity to make decisions about her cancer treatment.  The Trust was now asking the judge to approve another independent psychiatric report of Ms P’s capacity (which he did).

In conversation with the judge, Ms P made it quite clear that if she is found to have capacity she will continue to refuse the recommended treatment.

PRIVACY

The right to privacy turned out to be one of Ms P’s fundamental values and she was fiercely protective of her own privacy during this hearing. 

Counsel for Ms P (Debra Powell QC, instructed by the Official Solicitor) opened proceedings by reporting that Ms P  “strongly objects to members of the public being present” and that she would like to make an application for this to be a private hearing.  

As we have noted before (e.g. here), there can be a gulf between the position taken by P’s legal representative in the Court of Protection and the position taken by P herself.  Counsel for P was at pains to point out that the application for a private hearing came from Ms P herself, and did not represent the position of the Official Solicitor.  So, the judge asked Ms P why she didn’t want the public to have access to the court.

Ms P was attending via telephone, having declined the opportunity to join the video-platform since she did not want to risk her face being seen. Pressed by the judge to explain why she objects to video-conferencing, she said she was concerned about the security of the software: “there are technological flaws that cannot be protected against”.  Explaining why she didn’t want the public present, she said: 

It’s a very private case.  I’m aware that I may be asked questions that are of a personal nature that I don’t want to share with the public. It’s to protect my privacy. I don’t believe there’s anything in this case that wouldn’t have been covered by many other cases.” (Ms P)

After checking that both advocates – the applicant Trust (represented by Kiran Bhogal) and the Official Solicitor  (Debra Powell QC) were content for the hearing to be held in public, Mr Justice Hayden refused Ms P’s application.  He explained the Transparency Order to her, explaining that her name and identity could not be revealed, and highlighted the importance of open justice:

Like many cases that come to the Court of Protection, the applicant Trust is asking the court to declare legal a course of treatment that is highly invasive concerning an adult whose capacity is in issue.  This sort of case is of human importance in a mature, civilized, democratic society and it manifestly engages issues of civil liberties.  In society at the present time, every day, a whole gamut of civil liberty issues are raised and I cannot think of any period when it’s been more important for the court to be vigilant to maintain civil liberties.”  (Mr Justice Hayden – Note, like all other quotations in this blog post, these are as accurate as we can make them, given that we are not allowed to record hearings so they’re unlikely to be word perfect)

He added “if questions enter a particularly sensitive sphere, I will revisit the application and consider whether I can temporarily ask members of the public to leave”.

Ms P seemed reassured by the fact that her identity would remain confidential. She was referred to as “Ms P” throughout the hearing (unusually, we observers never got to know her real name); nor did we see her on screen. Nonetheless it felt quite uncomfortable to remain in the court given Ms P’s views. Knowing how important it is to Mr Justice Hayden to acknowledge and respect P’s choices, and also his commitment to open justice, I watched him wrestle with the dilemma of which of two competing values to honour on this occasion – and I found myself willing to put my trust in his judgment, his experience, and his knowledge of the case based on the bundle.  I was actually reassured that I could trust his decision on this when, later the same day, I logged on to observe another hearing before him and found that an application had been made to hear that hearing, too, in private.  On that occasion, Mr Justice Hayden granted the application and asked observers to leave. 

Katharine Shipley

As soon as it became apparent that P did not want observers to be present, I felt a strong urge to remove myself from the video hearing out of respect for her feelings. I hung on, half expecting the judge to ask us to leave at the beginning, but clearly open justice is not always entirely compatible with the right to privacy.  I felt guilty not leaving though, because P did not want us there and it felt almost sordid that there were a number of us sitting in silence and P had no idea how many of us were there, who we were and why we were listening.  The formality of the court process maybe also paralysed me a little to take action to leave.  Writing a blog about the case seems important, because of the issues it raises, but I also wonder if this is disrespectful of Ms P’s strong wish for privacy, even with anonymity.  

Judge Hayden listened to Ms P, he carefully considered her requests and he explained well the efforts that would be taken to ensure anonymity.  He assured Ms P that he would monitor the sensitivity of questions and discussions and said that he would ask observers to leave, if he felt that parts of the hearing should be heard in private. Nevertheless, this was clearly an extremely stressful situation for Ms P, and she was initially unclear about what the Judge’s decision had been regarding observers. I wondered how she was feeling and about the impact of this decision. I hope she had someone to support her.  

Sophie Jones

Mr Justice Hayden went into detail of how he will safeguard her privacy throughout the hearing. He explained to Ms P that the court is “crafted to protect P’s identity”.  He reassured her by saying “I entirely understand and I am hugely sympathetic for your desire for privacy”. I felt his communication skills with Ms P were exceptional. 

Sophie Keegan

After a brief discussion of the application made by Ms P for the hearing to be conducted in private, the Judge (along with counsel for the Official Solicitor), explained clearly and concisely to Ms P why the hearing should be in the public domain. I thought both did this in a respectful way, which sought to reassure Ms P that the hearing would still be highly anonymised despite her application for a private hearing being refused.

Adam Tanner

Hayden J had to weigh the principles of open justice, and the need for the public to be aware of matters of a serious nature, against Ms P’s personal feeling of privacy. Ultimately Hayden said that should matters arise which he felt encroached on Ms P’s privacy, and would stop her fully participating in giving evidence, then he would ask the public to leave at that time. It is a hard balance to strike between these two fundamental principles of the Court of Protection. I believe Hayden struck an acceptable balance whereby we as observers cannot see Ms P, do not know her name, and are bound by an injunction to protect her identity, and yet we are still able to observe and uphold the principle of Open Justice.

Celia Kitzinger

The extent of Ms P’s commitment to safeguarding her own privacy became still more clear as the hearing unfolded.  She objected to having to explain – to the capacity assessors and to the judge – why she did not want the recommended surgery.  She was being asked this question in order to assess her capacity to make this decision: can she understand, retain and weigh the information relevant to deciding one way or the other?  But Ms P does not wish to discuss her reasons with the capacity assessors – and as Mr Justice Hayden pointed out, a person whose capacity is not in doubt would not be required to explain their reasoning.  The competent person’s reason for refusing treatment is irrelevant: as Lord Donaldson MR said in Re T (Adult: Refusal of Treatment), the patient’s right of choice exists whether the reasons for making that choice are rational, irrational, unknown or even non-existent”.  Mr Justice Hayden summarised Ms P’s position like this: 

there is an inherent bias in the process because the only way Ms P can establish her capacity is by engaging in discussion about something she doesn’t want to engage in discussion about, and her capacitous coeval would not have to do that.” (Mr Justice Hayden)

Ms P also objected to some of the materials that had been included in the bundle before the court, which she believed should properly be confidential between her and her legal advocates.  She said she had not agreed to disclosure of the attendance notes written by her solicitor recording conversations with her, nor to the report written by the Independent Mental Capacity Advocate (IMCA).  It is absolutely standard practice for such documents to be included in the bundle before the court.  On the other hand, attendance notes for other parties (recording, say, conversations between the Trust and their solicitor) would never normally be disclosed to the court.  If a person has capacity, attendance notes are privileged and would not be disclosed: instead there would be a witness statement and P would decide what to say in it.

Referring to the attendance notes, Ms P said, “these are transcripts of a private conversation which I wasn’t told would be revealed”.  On the IMCA report: 

I didn’t get to see it, or review it, and I wasn’t asked whether it reflected my views accurately.  I also allowed a personal friend of mine to speak to the IMCA, not knowing that she’d report these conversations to the Trust.  I would never have allowed this to take place if I’d known what would happen.  I was told she was my advocate and would champion my perspective.  Her report doesn’t do that.  It seems to be a transcription of private conversations, pasted together and handed to the Trust.  This is a betrayal. She broke trust with me.” (Ms P)

The IMCA report was (I think) withdrawn from the court bundle after Mr Justice Hayden expressed the view that it “doesn’t appear to add a great deal” and asked, “Given that Ms P values her privacy, and the sensitivity of the point she makes, does this document need to be disclosed?” The information in the attendance notes seemed to be trickier, with counsel for Ms P saying that she would need to take instruction from the Official Solicitor (note – not from Ms P, who – despite being wholly clear and articulate about her wishes, is deemed to lack capacity to litigate).  

Ms P’s concern with the way the attendance notes and IMCA records had been disclosed raised important issues that I hadn’t previously considered. The private and confidential relationship normally assumed between advocate and client is here not the case. This is part of the wholesale removal of control that happens when a litigation friend is appointed.  For me this raises concerns, especially when (as I believe is the case in this hearing) the litigation friend has been appointed on the basis of an interim decision that P lacks capacity to conduct proceedings without there having been a full consideration of this issue.  

CAPACITY

I (Celia) have seen articulate, eloquent, intelligent and assertive Ps (like Ms P) in the Court of Protection many times and blogged about them here and here. (See also the blogs by Clare Fuller (here), David Thornicroft (here) and Jenny Kitzinger (here)). 

 “Some people subject to best interests decision-making in the Court of Protection are a long way from the popular imaginings of the typical “incapacitous person” [and] some can present very clear and compelling statements about the choices they wish to make for themselves.” (Jenny Kitzinger)

For some observers, this was revelatory: 

Kris Price

As a trainee capacity assessor (without, as yet, having started training) I found this hearing a real eye-opener.  My knowledge about lack of capacity has been gained in the context of dementia, rather than mental health issues.  Watching this hearing made me realise that I had preconceived ideas about how someone who lacks capacity to make a decision would present in the court.  I’m ashamed to say that I had stereotyped views that they’d be obviously incoherent or a complete emotional wreck.  Yet there had been four different assessments of Ms P’s capacity to make a decision about surgery and they had all – including the independent one – concluded that she did not have the mental capacity to make this decision.  That was a real epiphany moment – to realise that someone can be articulate, coherent, engaged with court procedures, and still lack the capacity to make decisions about her own body. 

Jacqui Graves

I was really surprised that Ms P was not only present at the hearing but was able to speak for herself and not through a legal representative.  She was amazingly articulate in expressing her understanding of her situation.

Celia Kitzinger

There was concern from some observers that Ms P’s capacity had been called into question because she was making an “unwise” decision to refuse medical treatment.  This impression was reinforced by the following exchange:

And that was, indeed, the impression created for many observers – along with a sense that the Trust had not provided Ms P with sufficient information about her treatment options.

Jacqui Graves

Ms P was not challenging her diagnosis, but was challenging the assessments that she lacked capacity to make treatment decisions, just because she was going against medical recommendations.  Article 8, the right to private and family life, home and correspondence is the Article protecting our autonomy: anyone with decision-making capacity can refuse treatment.  It was clear to me that Ms P felt she hadn’t been given sufficient information about her treatment options to make an informed choice and therefore had refused treatment on that basis.  She wants to know not only the full range of treatment options available to her now but also the likely impact of those treatment options on her quality of life.  This seems completely reasonable to me and what I would want for myself or my family and friends if I was faced with a similar decision.  

Sophie Jones

Ms P was eloquent and appeared to be educated around the topic of capacity and her rights to privacy. The most interesting point I felt was made by Ms P and Mr Justice Hayden, which is (in short) whether Ms P’s capacity is being determined/judged by her refusal to accept the recommended treatment, rather than her ability to make the actual decision for herself. 

I find that this can indeed happen in practice, and at times I have felt the (unintentional) judgment of professional opinions being imposed on clients. We must always remember that our clients are allowed to make unwise decisions, as we all do through life. I often reflect back on the Mental Capacity Act 2005 and ask myself “Is the client making this decision for themselves? Have I given them all the information in an accessible manner, for them to make their own choices? If the client appears unable to make the decision, how and why will this be assessed”. 

Ms P alluded to the Trust not engaging in discussions with her around treatment options, and gave an example of trying to discuss alternatives she had sourced, and getting no response back. If this is true, then I am not surprised she has declined treatment options to date.  Additionally, Ms P appears to be in conflict with the NHS Trust surrounding the timeline of events and delays which may have impacted her treatment options (which Mr Justice Hayden explained was a matter for another court).  Ms P stated that due to the Trust deeming her to not have capacity, she was unable to explore legal aid for litigation on the matter. From this point and as a Health Professional, my thoughts go to the fact that we are held by a duty of care to our clients. I found it sad that Ms P appeared to be hinting towards a conspiracy between those assessing her capacity and the Trust. I felt that this issue was impacting her ability to move forward with her current situation and how the professionals involved can improve her quality of life.

Katharine Shipley

It seems likely that the only reason Ms P’s capacity has been called into question at all is because of the gravity of the decision in hand and the fact that her decision to refuse medical treatment has been considered to be unwise.  The right to make unwise decisions is one of the central principles of the Mental Capacity Act.  It is difficult to speculate about this in this case, without more information about the capacity assessments that have taken place, and indeed the outcome of a new independent assessment that has been commissioned. It was disheartening to hear that Ms P felt that her medical team had not considered all treatment options and that precious time had been lost, resulting in fewer options now being available to her.

There was reference to a previous suggestion from her medical team that if Ms P engaged with the treatment process, the application to the Court of Protection would not be made.  Judge Hayden was unimpressed, remarking that this was not the test for capacity and reflected “paternalism at its most dangerous”.  

THE JUDGE’S COMMUNICATION SKILLS

There was unanimous approbation for Mr Justice Hayden’s communication skills from all the observers. 

Sophie Jones

Overall, I felt that Mr Justice Hayden handled this hearing with exceptional communication skills, ensuring that P was listened to throughout, whilst also asserting himself appropriately when she was not wishing to be “pressed” any further. 

Jacqui Graves

It felt quite relaxed and Judge Hayden came across as very warm and very human. I was expecting something much more formal, clouded with lots of legal language, that would make it inaccessible to me. The Judge was very respectful towards P and reassured her that her views were important to him, which in turn reassured me that she was not just being dismissed.  

Sophie Keegan

I was surprised by the fluidity of the hearing and by the range of what was discussed. I had presumed the hearing would focus on the issue of capacity in relation to the medical procedure involved and that would be it– but it became obvious that numerous other issues needed to be addressed and both the Judge and the advocates moved flexibly between issues, and addressed them fully when they arose. 

There was extensive interaction between the Judge and Ms P herself.   The Judge frequently asked questions directly to Ms P and gave her the chance to voice her concerns fully to the court. It was reassuring to see a high level of involvement by P in the case (although I appreciate this may not be possible in all cases). Ms P was very articulate and it felt right that she was able to get her own views across in her own time and in her own words directly to the Judge. The Judge was always sure to state that he took Ps views on the issues seriously. On numerous occasions, he referred counsel for the Official Solicitor to the “valid points” raised by Ms P to him, and sought the Official Solicitor’s response to them. 

While this was a case of a very serious and sensitive nature, the Judge through his interaction with Ms P herself created a comforting but efficient environment (with some light-hearted moments along the way) and it was encouraging to feel that Ms P herself was at the heart of this hearing. 

Kris Price

I’m a novice observer to this type of hearing and was really surprised by how informal the courtroom seemed and how sensitively everyone approached Ms P.  I would not have expected her to have been given as much space and time as she was to address the court and to get her views across.  I thought that was excellent. Her views were taken very much into account in formulating the next step. 

The judge seemed both sympathetic and empathetic.  I was very impressed by him.  I thought it was a pity that, because she’d chosen to phone in and not to use the video-platform, she couldn’t see him.  I think she missed out by not being able to see him – because you could practically see the cogs of his mind ticking over as he was contemplating the best way forward.  He was very engaged, very thoughtful, very concerned to do the right thing.  There were some really long pauses where you could see him weighing up the pros and cons of different approaches.

Adam Tanner

In addition to this application, Ms P asked the Court about the processes that Hayden J would have to adhere to in deciding whether or not she had capacity and whether or not she would have to undergo the proposed procedures. Hayden J, not unusually for him, took the time to slowly and succinctly explain the law behind the MCA and how the Court decides whether a person lacks capacity and how it is an issue specific decision, not simply deeming her to lack capacity at all times

Here’s how I (Celia) noted down that exchange:

Adam Tanner

Hayden J has been at the forefront of ensuring that the voice of P is heard in the Court of Protection and that P is included in the hearing about them as much as is feasible (something I also observed in an earlier hearing here).  Although Ms P was represented, it was nice to see Hayden J take the time to ensure that she was fully aware of what was going on and that she understood how capacity and best interest decisions are made. Patient-centred discourse has been promoted widely – and this hearing embodied that, with Hayden J taking the lead in ensuring that Ms P’s voice was not only heard but that she fully understood the proceedings. 

The next hearing (which some of us hope to attend) will determine whether or not Ms P has capacity to make her own treatment decisions, and – if not – whether the treatment the clinicians recommend is in her best interests.

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

Jacqui Graves is a nurse and currently the Human Rights Lead at Sue Ryder.  She tweets @GravesJacqui

Sophie Jones is Director of Beacon Case Management Ltd, practising as a Case Manager having qualified as an Occupational Therapist in 2010. She tweets @sophiebenko

Sophie Keegan is an LLB Law and French and a BPTC graduate due to start as a Pupil Barrister next year.

Kris Price is a trainee capacity assessor.

Katharine Shipley is a clinical psychologist and Court of Protection Special Visitor. She tweets @KatharineShipl2

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

Photo by Priscilla Du Preez on Unsplash

Advance decisions on intimacy

By Alex Ruck Keene, 11th  November 2020

Editorial Note: We invited Alex Ruck Keene to contribute a blog about advance decisions on intimacy after widespread engagement with our blog post about a hearing largely devoted to hearing expert evidence on P’s capacity to engage in sexual relations.  Advance consent in the context of psychiatric treatment is explored in another OJCOP blog by Magdalena Furgalska (click here).

Individuals with impaired decision-making capacity who wish to express themselves sexually are caught between two competing legal and ethical policies.  The first seeks to uphold the vital importance of consent to sexual activity; the second seeks to uphold the right for such individuals to respect to autonomy, privacy and the enjoyment of relationships on an equal basis with others.  

The legal framework relating to capacity and sexual relations is complex, not least because it involves both the criminal sphere (in England & Wales, the Sexual Offences Act 2003) and the civil sphere (the Mental Capacity Act 2005).   The English courts have returned repeatedly to the question of what it is to have decision-making capacity in relation to sexual relations, most recently in the case of A Local Authority v JB [2020] EWCA Civ 735.  

As Sir Mark Hedley identified in CH v A Metropolitan Council [2017] EWCOP 12: 

Society’s entirely proper concern to protect those who are particularly vulnerable may lead to surprising, perhaps even unforeseen consequences. Such, however, may be the price of protection for all.

The consequences appear to be particularly surprising in the context of those with dementia, who may previously have enjoyed sexual activity with a partner but now cannot be said (on even the most expansive approach) to have capacity to engage in sexual relations.  At that point, very difficult questions arise as to whether they should be stopped from doing so as to prevent their partner from being exposed to a risk of prosecution, or (where relevant) to stop support workers or others from also being expose to such a risk.  

In an article shortly to be published in The Gerontologist,[1] a proposal is advanced for an “advance decision on intimacy” to enable people who are living with dementia to make decisions about how they would wish to express their sexuality at a material time in future when they would have lost capacity to consent to such acts.  The proposal builds on recognised models of advance decision-making contained within the Mental Capacity Act 2005 to tease out how such an instrument could be created, what conditions might be required for it to be valid, and what complexities it gives rise to. 

From ‘stress-testing’ the proposal in different settings, it is clear that the proposal gives rise to strong feelings – both acknowledgement of the potential benefits, and of the possible downsides.   It also poses challenges to conceptions of what we are willing to empower people to decide about in advance, and about how expressions of sexual preference could be ‘housed’ within such decisions where they may clash with the views of others around the person about what they consider to be acceptable.  At a minimum, though, what is currently a thought-experiment may help focus attention on whether it is really necessary for all those living with dementia to pay the price identified by Sir Mark Hedley, or whether there is another way in which to achieve the same goals. 

Alex Ruck Keene has been in practice at 39 Essex Chambers in London since 2003 and specialises in the field of mental capacity and mental health law. He blogs regularly here: https://www.mentalcapacitylawandpolicy.org.uk


[1] Sorinmade, O., Ruck Keene, A., & Peisah, C. (2020). Dementia, Sexuality and the Law: The Case for Advance Decisions on Intimacy. The Gerontologist.

Photo by Artyom Kabajev on Unsplash

Should life-sustaining treatment be continued?

Note: The judgment has now been published and is available from BAILII here

By: Vedamurthy Adhiyaman, Emma Christie, Upeka de Silva, Rosemary Doherty, Moira Hill, Julie Morton, Adam Tanner and Hugo Wolfe (Edited, curated and with an introduction by Celia Kitzinger). 9th November 2020

Nine public observers attended (via MS Teams) an all-day hearing in the Court of Protection before Mr Justice Poole (COP 1353507, 30 October 2020) concerning whether or not life-sustaining treatment should be continued.  Such cases typically polarise opinion and attract contrasting ethical assessments – and this case was no exception. In what follows, eight observers reflect on what they saw and how it relates to their own professional experience (which spans health care, social work, social policy and law).  

My (Celia Kitzinger’s) position as an observer was unusual because, unlike the hearings I usually observe as part of the Open Justice Court of Protection Project, the person at the centre of the case (“P”) was someone I have met[1].  Over the last 18 months I’ve been in regular contact with P’s daughter as I’ve supported her in trying to ensure that her father’s voice is heard.  I’ve visited P in the care home where he lives, and spoken with fourteen different members of his family about his wishes, values, feelings and beliefs.  I know a lot about him as a unique individual and also about the medico-legal context in which he is enmeshed.  I’ve read his medical records, communicated with professionals involved in his care, and contributed to best interests meetings about his treatment.  I also attended the two previous court hearings (on 17 March 2020 before Mr Justice Mostyn and 16 October 2020 before Mr Justice Williams) and wrote about one of them here.

In this collectively authored blog post, I’ve drawn only on information in the public domain in presenting a background to the hearing, and I’ve not provided my own commentary. I will do that, in consultation with P’s daughter, in another forum.  

In the context of the Open Justice Court of Protection Project, the role of the blog posts is to enable and support people who’ve observed court hearings to describe and share their experience, and to reflect on what they saw – and that’s what I’ve aimed to facilitate here.   I’ve taken a ‘light touch’ approach to editing these contributions – largely limited to making minor comments on sentence structure, requesting clarification where points were unclear, and suggesting expansion where observers were making novel points not otherwise represented. 

In the first section I provide an introductory background to the case before the judge, and to the relevant law; in the second section, the 8 observers’ commentary is presented organised with reference to some key themes.

1.  INTRODUCTION – BACKGROUND TO THE HEARING

Under English law, medical treatment decisions about an adult who (at the relevant time) lacks the mental capacity to consent to, or to refuse, treatment are usually covered by the Mental Capacity Act 2005.  Such decisions must normally be made in the person’s ‘best interests’ (s. 4(1)) – which gives great weight to, but is not always the same as, what the person themselves would want. It is usually the treating team who bear the responsibility for deciding what course of action is in a person’s best interests, and although they should consult the family, and others who care for the person, about the person’s likely wishes, those people’s views do not determine the outcome.  Family (or ‘next of kin’) do not have the right to make decisions for the patient unless that person has previously appointed them as a Health and Welfare Attorney (s. 9) and granted the requisite power (or unless they are appointed by the court as a Deputy for Health and Welfare after the person has lost capacity – but this is rare and restricted in scope). 

In an earlier blog post, I summarised the position for this family as it was at the end of March 2020. I referred to P as “AF” (the initialisation used in the judgment of March 2020), and to his daughter as “Sarah” (the pseudonym she chose for herself).  After suffering a stroke, his treatment refusals were deemed to be incapacitous – and since he had no Advance Decision to Refuse Treatment (s. 24-26), AF’s treating team made the decision to go ahead with treatment because they believed it to be in his best interests.  The following account is taken from my earlier blog post.

He had a stroke on 5 May 2016.  About a week later, while AF was still in hospital he started refusing to eat and drink and said that he wanted to die.  Doctors decided that AF lacked the mental capacity to make his own decisions and inserted a naso-gastric tube against his wishes.  He turned to his daughter immediately afterwards and said, “this is wrong”.  He pulled the tube out several times – despite attempts to stop him by putting mittens on his hands and a bridle on his nose to lock the tube in place.  Because he was “non-compliant” with treatment, doctors (again against his wishes) made a surgical incision in his abdomen and inserted a feeding tube directly into his stomach (a Percutaneous Endoscopic Gastronomy [PEG]).  He was then discharged to a nursing home where he has remained ever since.  At first, AF was “uncooperative” with feeding and personal care but this has diminished over the years.  Sarah believes he has just become “ground down” over time, because he has tried so hard to tell people that he doesn’t want the medical treatments that are keeping him alive, but he has been given them anyway.  He still refuses to eat and drink enough to sustain his life – a short trial without clinically assisted nutrition and hydration found he quickly became dehydrated.   Sarah’s barrister was presenting Sarah’s case:  that PEG feeding should stop and that her father should be allowed to choose for himself whether he wanted the food and drink that would continue to be offered to him.  Sarah accepts that he would probably refuse to eat and drink and would probably die. As the judge acknowledged, Sarah does not want her father to die but was “fighting for his right to die” because she believes that is what he would want. Sarah lost the court case.  The judge said that: “it would be categorically contrary to AF’s interests for him to be set on the path that will lead to his inevitable death ….  This may be a diminished life, but it is a life nonetheless which has, as I have said, intrinsic quality and from which AF derives pleasure and satisfaction.” 

From blog post. for the Transparency Project

The full judgment is published here.  Sarah was angry and upset by this judgment and felt that her father’s voice (and her voice) had not been heard.

Not quite seven months after this first court hearing, Sarah’s father (now 80 years old) was admitted to hospital because his feeding tube had perished and fallen out.  National guidance (here) had not been adhered to and no advance care plan had been put in place to determine what should happen under such circumstances.  Clinicians responsible for her father’s treatment believed that replacing the PEG tube would be in his best interests.  Sarah expressed the view that replacing the PEG was not in his best interests and not what he would want.  A best interests meeting was held at which the participants were unable to resolve their differences.  The Trust therefore made an application to the Court of Protection for a declaration that it was in Sarah’s father’s best interests to have a PEG reinserted, and that – pending a full-day hearing to resolve this question –  he should continue to be provided with nutrition and hydration via the insertion of a balloon gastrostomy.  

The second court appearance was a one-hour hearing in the “urgent” list before Mr Justice Williams on 16 October 2020.  Sarah was without legal representation and appeared as a Litigant in Person.   The judge approved the order from the Trust.  A replacement balloon gastrostomy tube was inserted (the tract having been kept open with a stent over the previous few days.).  The full hearing was delayed by a couple of weeks in order to allow Sarah time to find legal representation.   Sarah was subsequently offered pro bono (i.e. free) legal support for the third hearing  from solicitor Kate Jackson and barrister Peter Mant, who had also acted pro-bono for her in the earlier hearing before Mr Justice Mostyn.  

Between the second and third hearings, Sarah’s father – who had returned to the care home following successful insertion of the replacement balloon gastrostomy tube – became unexpectedly ill with pneumonia.  He was readmitted to hospital, treated with intravenous antibiotics and briefly placed on an “end of life pathway”.  Sarah and her husband were informed about this at around 10pm on 28th October, and were told that he was likely to die overnight, that all active treatment had been discontinued and the plan was to keep him comfortable. 

By the following morning, he was observed to have responded well to antibiotics and was no longer for end of life management  – although as Sarah reported in court, nobody phoned to tell her about this and she uncovered the information during a conversation with a nurse who’d been involved with her father in his previous hospital admission.   

Recognising that Sarah’s father was on “a trajectory of recovery”, the treating clinician prescribed further antibiotics, along with other medications, including:  digoxin for atrial fibrillation, blood thinning medication to help him avoid another stroke, anti-cholesterol medication, and Clexane to limit the likelihood of thrombosis – all of which are life-sustaining treatments.  This was the situation at the point when the case returned to court on 30 October 2020.

At the hearing before Mr Justice Poole on 30 October 2020 (the third hearing)  the applicant Trust was represented by Vikram Sachdeva QC, Sarah was represented by Peter Mant and Sarah’s father (“P”) was represented by Bridget Dolan via the Official Solicitor. 

Both the Trust lawyer and the lawyer appointed by the Official Solicitor to represent Sarah’s father took the position that life-sustaining treatment was in his best interests.

The Consultant Gastroenterologist from the Trust was called as a witness and reported that Sarah’s father was “robust” and “responding well to treatment”.  She said she “would not consider it clinically appropriate to consider withdrawing treatment because he has a reversible illness”.  She anticipated that, following medical treatment, he would make a full recovery to the same baseline level that he had been before admission (i.e. not dissimilar to the state he was in when Mr Justice Mostyn made his judgment back in March). Her view was that once he had recovered from pneumonia, the PEG should be replaced. 

When Sarah gave evidence in court she said: 

“The doctor earlier never referred to my dad as a person.  To her, he’s just a robust body. But what about his soul, his brain?  Don’t do it just because it’s medically possible.  Do what’s the right thing to do.” (Sarah)

Sarah’s lawyer argued on her behalf that it was in her father’s best interests to be “placed back on a palliative care pathway” and that it was “not in his best interests to continue with active treatment” (i.e. no further antibiotics, and no clinically assisted nutrition and hydration should be provided).

This hearing was unlike most of the other court hearings about life-sustaining treatment I have observed in the Court of Protection in that a judgment had already been made that it was in the person’s best interests to receive clinically assisted nutrition and hydration via the PEG (at the hearing in March 2020).  Sarah said in court that she believed the decision in March was wrong.  However, the decision in March had not been appealed, and so the question arose as to what place this earlier judgment should occupy in the current proceedings.  The  barrister appointed by the Official Solicitor to represent Sarah’s father focused in court on the jurisdictional issue about whether, as a new judge in this case, Mr Justice Poole could make a different decision about tube feeding from the decision Mr Justice Mostyn had made in March 2020 – and if he could what process should be adopted for doing so.

Yes, you can make a different decision, because of the way the Mental Capacity Act is framed and the way decisions are made in the circumstances that prevail at the time a declaration is made.  The practical reality is that no decision of a judge in the Court of Protection is ever really a final decision.  It can always be reviewed and changed.  That’s why the wording of judgments so often includes, “in the prevailing circumstances of the case”.  But unless there is a relevant change of circumstance [she referred to the Von Brandenburg case],  it would be an abuse of process to make a different decision.  If you are to make a fresh decision because there is sufficient change in circumstance, how are you to make that decision?  Must you take account of all the evidence afresh? De facto, a different process has been adopted here, so I want to look at the jurisdictional basis for doing that. (Bridget Dolan)

(Note: this is quoted as accurately as possible based on my notes made at the time but is unlikely to be verbatim given that we are not allowed to audio-record court hearings)

This jurisdictional issue will be explored in the published judgment.  My understanding of the gist of it is that it means that this hearing – and any subsequent hearings – take place under the shadow of Mr Justice Mostyn’s judgment back in March.  The court cannot “go behind” that judgment (i.e. re-litigate it) if the facts (e.g. P’s medical condition) remain the same.  The court cannot, for example, reopen the question of the values, wishes, feelings and beliefs that Sarah’s father lived by, or the wishes that he expressed, before (or in the weeks after)  his stroke – because Mr Justice Mostyn had that evidence before him at the time he made the judgment in March 2020, and that evidence has (obviously) not changed since then.  Only if new information were to turn up (e.g. “earlier correspondence from P about his wishes, falling short of an advance decision”, Bridget Dolan) could the question of his prior wishes be reconsidered.  This position accounts for the relative absence of information before the court about P’s values and beliefs and the decision he would have made for himself if he were able. (Note added 13 November 2020: see the subsequent blog post by Alex Ruck Keene for a discussion of “For how long does a Court of Protection judgment remain binding?“.)

The judge, in his short ex tempore ruling, found in favour of making the order sought by the Trust, and will lay his reasoning out in full in a published judgment. He said that “at the very least the earlier judgment [by Mr Justice Mostyn] should be treated by me as having very great weight, subject to any changes in circumstance” and ordered that it was in Sarah’s father’s best interests to undergo insertion of the PEG and all ancillary procedures (such as antibiotic treatments and repeat blood tests).  He left it to the clinical judgment of the treating team to decide when Sarah’s father is medically fit enough for the PEG to be reinserted.  He also directed that an advance care plan should be drawn up (as Sarah had been requesting for the past 7 months). 

Observers comments below on the unhappy situation that Sarah and her father find themselves in, reflect on what they saw in court, and describe what they learnt about the importance, for all of us, of planning ahead for future loss of capacity. Most of us would want to minimise the risk of being in this sort of situation and putting our families through painful experiences of struggling with the dilemma of not knowing what we would want, or knowing but finding it impossible to persuade doctors (or the courts) to do the ‘right’ thing.

There are three key advance planning tools provided for by the Mental Capacity Act 2005, all mentioned in these commentaries:  

  • a Health and Welfare Attorney (ss.9-14 MCA 2005):  this would have given Sarah a bit more authority as a spokesperson for her father, but I suspect it would likely not have worked in the end,  since attorneys must make decisions in the person’s best interests, and can be challenged in the courts if clinicians believe their decisions are wrong; 
  • an Advance Decision to Refuse Treatment (ss. 24-26 MCA 2005): if Sarah’s father had made a valid and applicable Advance Decision refusing a feeding tube, he would never have been fitted with one, since such treatment refusals are legally binding on clinicians; 
  • a (written) Advance Statement (s. 4(6)(a) MCA 2005) expressing values, beliefs, wishes and feelings (not legally binding, but taken very seriously as part of best interests decision making – something in writing from Sarah’s father saying that he’d rather die that lose his independence and privacy would carry much more weight than second-hand reports from family members that this was his view). 

Anyone interested in implementing these advance planning tools for themselves can check out the excellent (free) resources at the charity, Compassion in Dying, which also has an information telephone line.  

OBSERVER COMMENTARY

A heart-rending case

Julie Morton, social worker

The whole experience was very emotional throughout, especially when the daughter gave evidence. I was balling my eyes out at this point and felt the pain she was in. I was thinking throughout the hearing that it would have just been a blessing for him to pass away with the pneumonia, as I’m sure P’s daughter felt when being phoned by the hospital. How awful to have had to sit there all night waiting on a call to say he’d passed away, when in fact he was put on antibiotics and getting better! 

Adam Tanner, PhD researcher

The evidence given throughout this hearing was incredibly emotive, P’s daughter had a very clear view of what she believed her dad would have wanted, and that he wished to be allowed to die. She said that “Dad would not have wanted the PEG, full stop… He would be horrified to know he was being treated for no purpose”. She also questioned how this “invasive” treatment, which she described as “horrific”, could be in his best interests. P’s daughter strongly believed that the decision being made was focusing on the views and feelings of everyone else, and not on P. 

Vedamurthy Adhiyaman, Geriatrician

P’s daughter made a very powerful and emotional plea to the Judge and said her dad would not want to live a life like this. She said he lives in a body with no soul and has no meaningful quality of life.  I was really distraught when I heard what the daughter said.  From what she said, I was absolutely convinced that P clearly would not have wanted to be kept alive like this.

As an observer, I had very deep sympathy for P and his daughter. This decision would have been devastating for her as it was very clear that her dad would not have wanted this. I also had sympathy for the medical team caring for P and the doctor who gave the evidence, because they were doing what they should do: abiding by the core principle of preserving life and the law, especially in the context of the previous judgment. And when someone is admitted to hospital, the default position is always to treat the condition unless there is an advance care plan advising not to do so. 

Responses to P’s daughter

Julie Morton, social worker

P’s daughter was great throughout giving her evidence. She should be very proud of how she was in court.  I would have been terrified and hope that I never have a similar experience. She certainly put up a good fight for her father’s wish not to be kept alive.

She really got her point across especially to the solicitor from the Trust who said he understood how she felt.  She stopped him immediately and told him he didn’t. Of course, he didn’t: he wasn’t talking about a close relative as she was – just a patient. I would like to know how he would have felt in the same circumstances if someone official was telling him they understood his situation.  

I really liked how she spoke about her father and the proud man he is, his history of working in the health service for many years and that he always said he wouldn’t want to be a “body in a bed”. I can actually hear someone saying that and know what is meant by it. It put a different spin on it and added weight in my mind that he worked in “health” and had no doubt seen many different scenarios of death. This allowed him to make his own informed wishes about his own passing, when the time comes.

I lost my father last year so it was very emotive for me. I know my dad wouldn’t have wanted life extending treatment either, but thankfully for me, he passed away in his sleep so we didn’t need to make such awful decisions for him like his daughter did. 

Rosemary Doherty, End of Life Care Education Lead

The judge said that P’s daughter was “mourning the father that he used to be’.  This really struck me. The judge is conveying his appreciation of where the daughter is coming from in her views. I do not wish to presume how the daughter is feeling but evidence shows once a poor outcome (such as a life changing illness) is conveyed and accepted, the loved ones can begin to grieve for what is lost. 

Moira Hill, former nurse and End of Life Coach 

As I listened to P’s daughter give evidence, I was struck and saddened by how distressed and angry she was – both at the decision to re-start antibiotic treatment, and at the hospital’s failure to notify her of her father’s positive response to treatment, and the fact that he may survive this acute illness. The breakdown in communication was acknowledged, but I cannot help but feel that perhaps the emotional impact the whole situation has had on her was greater than an apology for not informing her could appease at this time. 

She appeared to be grieving the father who was no longer there. The man he had been, and the role he had played in her life.  Sadly, perhaps amidst this grief, she appears unable to recognise any positives in the life her father still lives. 

Many people find that when a loved one is ill, particularly for a long time, they experience a series of losses – some big, some small, and they accumulate. Sadly, anticipatory grief is not always recognised or acknowledged and therefore appropriate support is not always sought. Whose role is it to identify a family member or carer is struggling? And what help are they offered? Perhaps this is something that needs to be made clearer.   

Cross questioning P’s Daughter

Hugo Wolfe, aspiring barrister

I observed that the questions asked of the medical witness differed from those asked of P’s daughter. This was not just in content but in nature. Questions asked of the clinician were more evenly paced and were not repeated. Whereas P’s daughter was asked the same question multiple times. Unfortunately, this did not help her. The interruptions and specific questions complicated her evidence. This was upsetting to watch in particular because she had to defend her position on what P would have wanted while being cross-examined by the person appointed as P’s legal representative. 

Upeka de Silva, Policy Officer on End of Life Care

The daughter was compelled numerous times to defend the fact that she was not able to visit her father because of Covid. She had to try to disprove that his recent communications were an indication of his happiness (an impossible task); and she had to repeat her belief that placing her dad on an end-of-life pathway was what he would have wanted. No one wants to utter those words but she had no choice.  These observations reinforced my view that people choosing to appoint a Health and Welfare Attorney to represent their wishes when they cannot need to identify a confident and fearless person for this role. Life and death conversations are truly tough and heart-breaking. They have to be ready for a fight.

Where is P? 

Upeka de Silva, Policy Officer on End of Life Care

During the first two hours of the four-hour hearing, I was not able to find P.  P was present only in terms of his white blood cell count and his National Early Warning Score. His voice, his values and what mattered to him were missing. 

The doctor’s report about the PEG and antibiotics was professional and unbiased but focused only on the clinical process of insertion, the risks associated with the procedure, and the likely extent of P’s physical recovery. No one, not even the Official Solicitor (who is supposed to represent P), asked if these treatments were what P would want.  

The Official Solicitor’s cross examination of the gastroenterologist consisted of a summary of the clinical evidence she had already provided, and a statement that the replacement of the PEG is a simple “five-minute procedure under light sedation”. At that point, it was clear to me that P’s voice and values would remain unheard.

It was only through P’s daughter’s powerful testimony that we heard that P had worked for the NHS for many years; that he never wanted to be a “a body in a bed”; and that many of his family members who were devout Catholics had provided statements confirming that he would not want his life prolonged in this way.  Finally, in the third hour of the hearing I saw P as a person and not as a body. 

There was evidence of P’s views having been recently ignored in treatment decisions but that evidence was mentioned and not pursued.  For example, it was disappointing to hear that although P’s daughter was contacted when a decision was made to withdraw active treatment from P, she was not contacted when the decision to re-start active treatment was made. Strictly speaking, that second decision cannot have been a properly made best interests decision, since it did not include her views about whether P would have wanted active treatment.  I am sad that I am not surprised that clinicians did this, and that lawyers let it pass.  It is not that clinicians and lawyers are malicious but that the focus is always on the clinical not on the personal. 

Hugo Wolfe, aspiring barrister
From the outset, I noticed that there was a difference in the legal teams. Both the Official Solicitor who was acting on behalf of P, and the CCG, were represented by experienced barristers, known as Queen’s Counsel. Whereas P’s daughter was represented by a junior barrister working for free. It was upsetting to watch Queen’s Counsel, representing P, cross-examine P’s daughter – especially when she passionately explained that the two barristers simply did not and could not understand P as she does, having known him for more than 50 years. It was like watching a gulf open between P’s representative and P’s daughter, who strongly believed that she was speaking on his behalf.

They disagreed diametrically about what should happen to P and his future treatment. This uneasy experience made me question who properly represents P?  Is it the ‘objective’ and best interests focussed Official Solicitor?   Or is it the daughter who had known P for many years? 

‘Quality of Life’

Rosemary Doherty, End of Life Care Education Lead

This term was used by a number of people in court, but it really does not mean much unless you can hear from the person themselves, who can tell us how they experience their ‘quality of life’.  Of course, we can’t always do this in any meaningful manner, so how do we rely on others to determine QoL?

The care home staff were quoted as saying the patient enjoys poetry being read to him, listening to music, and watching films. The patient’s daughter stated that he stares at the ceiling all day. How much weight can we put on these opinions? How much do we observe the non-verbal signs in someone who cannot always meaningfully communicate how they feel?  Is passivity a sign of contentment or a sign of depression and apathy?  

On the other hand, this also makes me reflect on patients I have cared for in the past. There have been times when I’ve personally felt like questioning how they are able to get up in the morning because I have deemed their QoL to be so poor – but that person believes themselves to have an acceptable QoL and derive pleasure from certain aspects.  The only opinion about quality of life that really matters is the person’s own. 

Moira Hillformer nurse and End of Life Coach

Ann Bowling wrote ‘It appears that doctors often rate the quality of life of the patient as lower than the patient perceives it, and the life itself of lower value than the patient rates it. The only way to face ethical dilemmas about treatments is to ask the patient about their perception of their quality of life and their treatment preferences.’   (p. 149, Bowling, A. (2009) Quality of life in health care decisions, in Medical Ethics and the Elderly Third Edition, Edited by Gurcharan S Rai, Radcliffe Publishing.) Ultimately, the only person who can judge what is an acceptable quality of life is the person living it. 

Upeka de Silva, Policy Officer on End of Life Care

I was brutally reminded of how diverse our individual values are when it comes to quality of life. P’s “joke” that he was 70 and not 80; his reaction to a movie; and a noise that he made which sounded like a chuckle were interpreted by the care home and almost everyone at the hearing as P not being unhappy and having a life worth living. Meanwhile, his daughter found the idea of her dad being given a soft toy and being read poetry to every two weeks as degrading treatment of a proud independent man.  Without your own values written down, the court is left to make this evaluation. That is a tall order and one that I would rather avoid for myself. 

Missing Advance Care Plan

Upeka de Silva, Policy Officer on End of Life Care

The other missing element that came to light towards the end of the hearing was that nobody had put a comprehensive advance care plan in place for P.  Apparently the GP had refused to communicate with the daughter about putting an advance care plan in place – and so a plan had not been developed. Every single guidance document published over the last few months by the NHS and other medical bodies (e.g. British Medical Association, Care Provider Alliance, Royal College of General Practice [here])  highlights the importance of advance care plans.  How this was considered acceptable is beyond belief. 

Rosemary Doherty, End of Life Care Education Lead

The daughter described lack of communication from teams caring for her father.  This should not be happening. And it should not take a court case for a GP to be told to transfer care of a patient to another GP if they are unwilling to interact with the person’s family. 

Moira Hill, former nurse and End of Life Coach

It is clear that advance care planning must now be a priority, something all parties and the judge agreed.  Working in partnership is so important when planning care, and when delivering and reviewing goals of care. Doctors, nurses, carers and family and friends all play a valuable role in ensuring someone lives and dies well, in line with their values, wishes, beliefs, preferences and decisions. And, if communication breaks down, as it appears to have done between P’s daughter and the GP, it is important to be proactive in changing the situation. It should be remembered that family often need individualised support too, and this should be recognised.   

“Palliative Pathway” and “End of Life Care”

Rosemary Doherty, End of Life Care Education Lead

This term ‘palliative pathway’ was used interchangeably with ‘end of life care’ during the hearing.   There needs to be clarity about what these terms mean.  We generally avoid using the term “pathway” as this implies something like the Liverpool Care Pathway which was the subject of a Department of Health enquiry and is no longer used.   The preference when talking about plans for end of life (defined as when someone is likely to die within the next 12 months, General Medical Council) is to refer to an individualised “end of life care plan”.  

Palliative care is a holistic approach to support a person with a life-limiting illness and those important to them (World Health Organisation). A person may need specialist palliative care services at any stage of a chronic illness – not only when death is imminent. A person may need specialist palliative care service even around time of diagnosis as a short-term intervention and still have many years to live. “Palliative care is not just for the end of life – you may receive palliative care earlier in your illness while you are still receiving other therapies to treat your condition” (NHS 2018

We always encourage health care professionals to be clear and unambiguous when communicating with others, and this should extend to lawyers in the courtroom.  

Planning ahead for future loss of capacity: Advance Decisions to Refuse Treatment and Advance Statements

Adam Tanner, PhD Researcher

In the absence of an advance decision (or advance statement) from P himself, it is impossible to know if his wishes are ever being adequately adhered to. 

Moira Hill, former nurse and End of Life Coach

The daughter’s wish was that antibiotics should not be given, as they would prolong her father’s life. The fact she was not able to achieve for her father what she believed he would want, clearly distressed her. Yet with no LPA for Health & Welfare in place, and no Advance Decision to Refuse Treatment (ADRT) or Advance Statement (AS) describing what her father would or would not find an acceptable ‘quality’ of life – even though she was clear that he would not wish to exist as ‘a body in a bed’ – it is hard to see any other outcome than the medical team continuing to treat a reversible condition in the circumstances presented to them.  

Julie Morton, Social Worker 

It has shocked me to think that verbalising your wishes and feelings to family members isn’t enough and that this can be completely overruled in court. The lack of written evidence of someone’s wishes seems to allow these to be totally dismissed.
It has definitely made me think about my own wishes and feelings and those of my loved ones. I will encourage them to write down how they feel and now to complete an Advance Decision to Refuse Treatment. How simple the process could have been for P and his daughter if this had been done, yet how often is this publicised? I’ve never heard of it.   

Upeka de Silva, Policy Officer on End of Life Care

“I am the only one fighting for my dad in front of all of you” – this is when I was convinced without a doubt that if anyone has strong views about how they wish to be cared for, they must write it down in an Advance Decision and an Advance Statement (freely available on www.compassionindying.org.uk) and they could also appoint someone as a Lasting Power of Attorney for Health and Welfare who is ready to stand and fight for them.  If you don’t want to be silenced when you lack capacity to make treatment decisions, don’t just talk about your wishes, write them down. Otherwise, traditional paternalism will get in the way of patient choice.

Rosemary Doherty, End of Life Care Education Lead

Watching this hearing brought home to me how we as a society must get better at sharing our views with our loved ones and documenting them in the form of Advance Statements and Advance Decisions to Refuse Treatment – especially if we have strong wishes about treatments that we would not want. I think while this discourse is happening in the healthcare community, we need to get it to become part of everyday conversations.  For that to happen, we need the media to help. Dr Kathryn Mannix (in an online seminar I attended) suggests getting a well-known soap opera to develop a storyline covering advance care planning.  The impact of that could be huge! 

The Covid-19 pandemic brought advance care planning (ACP) into sharp focus and this has been one of the main focuses of recent teaching sessions I run. Staff want to know how they can best support patients in ACP and desire training and education to be able to be comfortable in initiating these conversations. There is a clear need for ACP and talking about death and dying is needed in the public domain so we all can be comfortable with discussing these issues. Death is inevitable for us all and if we have strong wishes about what may be important to us at this time we need to get them written down – because,  although the opinions of those important to the person are listened to (as in this court hearing), unless there is documented evidence of their wishes and decisions, there will be further anguish as decisions are made by strangers about the person’s care, treatment, and life.  Watching the court hearing had a huge an impact on me. It’s time to practice what I preach! I have now written my Advance Statement and shared with my sister and my partner. Writing it was actually more difficult than I thought. I worryingly assumed that it would be easy for me as I talk about this on a daily basis, but facing one’s own mortality in this way brought up emotions I wasn’t expecting. Nonetheless it is done – although interestingly my sister had a few questions and felt it wasn’t clear in parts so I need to get moving on version 2! 

Emma Christie, Aspiring Barrister

In this hearing I saw a patient’s daughter articulately and passionately express her view that her incapacitated father would not have wanted life-sustaining treatment.  But the opposite decision was made by the court. She said that her father had expressed the view that he would not want to be ‘a body in a bed’ before he was incapacitated and she had a clear understanding of what he meant and that his current situation would be intolerable to him. The daughter’s anguished plea for what her father would have wanted did not sway the decision of the judge. And so the importance of making a formal Advance Decision to Refuse Treatment became clear to me.  I realised there were situations when I, too, would not want doctors to give me life-sustaining treatments to keep me alive.  For me, these would include if I were in a continuing vegetative state, for example, or unable (long-term) to recognise my family. In such situations I want to refuse life-sustaining treatment, as I would like to die with dignity, before I became unrecognisable to my loved ones and before they had to watch me suffer through a highly reduced quality of life.  I made my Advance Decision to Refuse Treatment on the day after this court hearing. I used the “Compassion in Dying” online tool  and it took me no more than 30 minutes to complete.  I now feel confident that my views would be respected if I were to lose capacity to make my own decisions in future.  I also feel reassured that my family and those close to me would be clear about my wishes, and not have to battle, like P’s daughter to try (and perhaps to fail) to get the right decisions made.  

Vedamurthy Adhiyaman, Geriatrician

We all have the right to choose what we eat, wear, buy, travel, read, watch etc. However, when we lose capacity, our situation changes dramatically forever.   Others decide how we should be treated – even when our families know that the decisions being made are not what we would want for ourselves.

The only way we could prevent such a situation and avoid unnecessary distress to our families (and to healthcare professionals) is to write a valid Advance Decision clearly stating what treatments we want to refuse and under what conditions.  If we don’t, there is a good chance that we might end up in a situation like P.

I urge anyone reading this to write a valid Advance Decision (and Advance Statement) as I have done for myself, prompted by what I have seen in my work as a doctor.  For me, my Advance Decision is important because it means that I won’t be forced, like P, to live my life in a state that I wouldn’t want.  By making my own decisions in advance of losing capacity I’ve ensured that I’m not vulnerable to others having to make decisions on my behalf, based on their perception of my quality of life and my best interests. 

The ‘right’ decision?

Julie Morton, social worker 

I swung from one extreme to the other thinking ‘he should continue to be fed’ to ‘no, he should be allowed to die’. I’m still in mental turmoil as to what decision I would have come up with, if I had been the judge.  I’m still not sure the person’s voice was fully heard. 

Moira Hill, former nurse and End of Life Coach

The daughter is firm in her belief that it would be best for her father if he were to die sooner, rather than go on living the best life he can. And, whilst it was clear that this is not the life her father would have chosen to live, it is the one he has; and the one that has been decided is in his best interest to continue to live – at least for now. It may be that prolonging life in this case would be wrong. But hastening death, by stopping treatment that puts him back in a position he was in at the previous hearing, may be equally wrong.  

Adam Tanner, PhD researcher 

The issue of best interests was peppered throughout the hearing and was highly contested by his daughter. I found that, as emotional as it was, the Official Solicitor and NHS Trust were doing what they truly believed to be in P’s best interests. I similarly do not believe that, on the evidence given, the views and feelings of the care home and others were being given higher regard than those of P. Huge amounts of discussion was had throughout the case from both sides about who P was and is. He was described by counsel for the Official Solicitor as having small conversations, getting joy out of certain things and expressing to the care home staff that he “wasn’t unhappy” with his current situation, something clearly disputed by the daughter.  I am in the midst of writing a PhD on life-sustaining treatment for patients who lack capacity, and have seen a number of contested cases such as this over the past 3 years. They are always highly emotive for all parties involved and this case was no exception. I believe it is completely understandable how P’s daughter felt, and why she believed that she and her father were not being listened to.  However, it would be disingenuous to suggest that both this Court and the previous Courts had not given great amounts of thought and respect towards what is in the best interests for P, having heard many days’ worth of evidence. As Mr Justice Poole stated, I do not believe this is the end of this very tragic case, or that this is the last time P will be back before the Court, but with all the evidence which was given in this hearing I struggle to see how any different decision can be made, unless or until there is a significant change in P’s physiological state.

Vedamurthy Adhiyaman

During the recent COP hearing, I heard that the case came to court earlier this year and out of interest I searched for the judgment from March 2020 and found it here:  A Clinical Commissioning Group v AF & Ors [2020] EWCOP 16. I found the judge’s decision unacceptable and struggled to comprehend mainly based on two facts.  

First was the evidence given by P’s daughter. It was so compelling that P would not want to be kept alive for the sake of being alive. 

“Because my dad worked in hospital, he would often talk about the fact that it is cruel to keep people in a bed for so long if they can’t do anything for themselves. He would often say it was not how it should be, being ‘a body in a bed’ and that he wouldn’t want to be that way. He spoke about the indignity of being in such a situation. He was a very dignified man. He would make remarks such as ‘just put me in a corner by the range with a gun and I’ll sort it out meself’. His wishes and feelings about this could not have been clearer.”

P’s daughter, quoted in the March judgment

I was very perplexed and found it very difficult to believe that professionals had totally ignored the daughter’s report of P’s wishes and initiated – and then continued – clinically assisted nutrition and hydration for P. 

Second was P’s physical and mental retaliation against nasogastric feeding. He had refused to have it, pulled it out, told his daughter that “this is wrong” and even with mittens and then a bridle to restrain him from removing the tube, he managed to remove it again in May and June 2016. He then also resisted feeding via a PEG tube.  These are not the actions of someone who was just delirious. These were categorical ‘no’s. This begs the rhetorical question of how many times a person has to say no before one should accept their decision? 

In my view, dismissing his actions on the basis that he lacked mental capacity and “the workings of an incapacitated mind are a largely undiscovered country” (a phrase from the judgment quoted by counsel for the Trust in the hearing I observed last week) was wrong.

We face the problem of feeding issues following stroke on a regular basis in my own clinical practice. We explore the views of the person before commencing naso-gastric feeding. We have had patients flatly refusing by pushing us away or shaking their heads when we go near them with a naso-gastric tube. We make a decision as a team (speech and language therapists, nursing and medical) and discuss with the family. If it is very clear that a patient does not want a naso-gastric tube, we do not force it.

In my view, by force-feeding P against his wishes, the professionals have violated P’s human rights on many domains. They have breached article 3 (torture and inhuman or degrading treatment), article 5 (right to liberty), article 8 (respect for private and family life), article 9 (freedom of thought and belief) and article 10 (freedom of expression). 

Stating that clinically assisted nutrition and hydration (CANH – the feeding tube) is appropriate because P is now accepting his feed and seems to be enjoying some small things in his life is an example of subordination of a person. What choice does he have after finding that resistance does not work and his will to resist has been totally destroyed? 

For me, this case has involved ethical, moral and physical wrongdoing on the part of the treating teams.  The court has had three opportunities to right the wrong, but has failed miserably. I disagree with the judgment that P’s CANH should continue. The judicial system has not only failed P and his daughter, but also the core values and beliefs of human rights and respect for bodily integrity. By supporting a wrong decision, the Court is sending a signal to the medical profession that they do not need to accept a person’s wishes and can continue to do what they feel is right for a person based on their own perception of what is in that person’s best interests. 

Vedamurthy Adhiyaman (Adhi) is a geriatrician based in North Wales, with a special interest in managing stroke victims and people with fragility fractures. He tweets @adhiyamanv

Emma Christie is a Masters of Jurisprudence candidate at Durham Law School  researching emerging domestic abuse law in the UK, and a future pupil barrister. She has previously blogged for the Project several times (e.g here).   She tweets @emmaleechristie

Upeka de Silva is the Policy Officer at Compassion in Dying and supports people to plan ahead in line with the Mental Capacity Act 2005. She has previously blogged for the Project here.  She tweets @de_upeka

Rosemary Doherty is an End of Life Care Education Lead in Southwest London, with a special interest in ethics and human rights in marginalised groups at end of life. She tweets @rosiedoherty0

Moira Hill is a former nurse, with an MA in Healthcare Ethics & Law. Now, as an End of Life Coach, she supports people to have conversations about death, dying & grief, and the making of end of life plans. She tweets @moirahill67  

Julie Morton is a social worker and best interests assessor. 

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

Hugo Wolfe is an aspiring barrister who graduated in Medical Law LLM from Queen Mary University of London (QMUL). He tweets @HugoWolfe1.


[1] My (Celia Kitzinger’s) involvement with P in this case came about as a consequence of the support I have offered to many families as an offshoot of the work I do with the Coma and Disorders of Consciousness Research Centre.

Photo by Martha Dominguez de Gouveia on Unsplash

Psychiatric Survivors’ Views on Advance Consent and ‘Forced’ Treatment

By Magdalena Furgalska – 5th November 2020

At the moment, the law in England and Wales permits a person who (under the law) has relevant mental capacity to make an Advance Decision to Refuse Treatment in advance of a time when they lack the capacity to make such a decision for themselves (ss. 24-26, Mental Capacity Act 2005). But what of people who wish to consent to treatment in advance?

A recent Court of Protection hearing (described in a blog post by Celia Kitzinger here) concerns a young man she calls “Paul” who has a diagnosis of “emotionally unstable personality disorder” and is living with end stage kidney disease.  His capacity to consent to (or refuse) treatment fluctuates.  In order to stay alive, Paul needs to receive regular haemodialysis – and he does want to stay alive, not least to spend time with his child.  When Paul is not in mental health crisis (the ‘well Paul’) he complies with his kidney treatment. When experiencing mental health crisis, the ‘ill Paul’ resists haemodialysis – stating that he wants to die.  For some time, medical professionals have administered haemodialysis to ‘ill Paul’, believing it to be in his best interests.  But this causes distress and trauma to medical professionals and to Paul himself as administering dialysis contrary to ‘ill Paul’s’ wishes requires that they restrain and sedate him (with associated psychological and medical risks). The decision faced by the court was whether or not it was in Paul’s best interests to continue administering dialysis when (lacking capacity) he refuses the treatment.

In her blog post, Celia Kitzinger points out that such difficult ethical and practical dilemmas are commonplace for patients with fluctuating mental capacity. She notes that sometimes doctors do choose to follow incapacitous refusals over forced treatment. She also explores the potential of ‘advance statements’ in which a person can set out their preferences for receiving medical treatment in advance of a time when they may lose capacity to consent to such treatment (noting their legal limitations). “Advance consent” is not currently lawful in England and Wales.    She also points out that, in the absence of legislation providing for ‘advance consent’,  any decision to respect ‘well Paul’s’ statement that he wants to be given the treatment he declines when he is ill must be a decision made by others in Paul’s best interests, rather than Paul’s own autonomous decision.  His stated wish to consent to treatment in advance is not determinative.

Voices of Psychiatric Survivors

Advance consent to treatment is a live issue for many psychiatric survivors who (when well) want to receive treatment that they know they have a history of refusing when ill. People may also wish to make advance consent to treatment when they are worried that their fluctuating capacity means they might not be able to make independent decisions.  I’ve interviewed twelve self-identified psychiatric survivors (7 female, 4 male, 1 non-binary, age range 27-72, representing a diverse range of diagnoses) for my PhD research on ‘Achieving Social Justice for Psychiatric Survivors: Capabilities and Advance Consent to Mental Health Treatment’.   My findings suggest that the opportunity to give formal advance consent to treatments would be welcomed by some psychiatric survivors and has the potential to improve treatment experiences for people who might be in a situation similar to Paul’s.

Some other legislatures already permit advance consent e.g. India (s.5 of the Mental Health Care Act 2017) and the longest-standing example of such legal recognition of advance consent in the world: British Columbia, Canada (s.19 of the Health Care (Consent) and Care Facility (Admissions) Act 1996). However, regardless of whether advance ‘consent’ is legally enforceable in a given jurisdiction, a review of evidence suggests that it is a desirable mechanism for many psychiatric patients – who try to find a way to incorporate it into their advance directives. In Scotland, Reilly and Atkinson (2010) found that of 55 advance directives made by psychiatric patients that were presented to the Mental Health Tribunal, 45% contained attempts at advance consent to specific medications; while in the U.S. 93% of the psychiatric advance directives in a 2006 study by Swanson et al contained advance consent to treatment. Psychiatric survivors’ attempts to make an advance decision to consent to treatment suggests that the law might have some ‘catching up’ to do.

What does my research tell us?

Most survivors I interviewed were very clear about their desire to be able to consent in advance to treatments they have previously refused or are likely to refuse when unwell. E.g. one participant – I will call her Lucy, has a diagnosis of schizoaffective disorder. When experiencing mental health crisis, she has previously refused treatment because voices tell her to do so. If she does not follow the guidance from the voices, they threaten to kill her mother. Lucy says that her mental capacity has not been questioned in some of those instances of mental health crisis because she has learned how to present well, and she does not disclose that she is hearing voices. Lucy says that at times when her refusal was overridden and the psychiatrist administered treatment anyway, she felt relief knowing that the voices are likely to disappear sooner rather than later and will not drive her into self-harm. She says that advance consent permitting treatment on such occasions would be “life-changing”. Without it, her suffering is prolonged and that has devastating consequences for her personal life. Lucy was not the only participant who expressed a desire to avoid the challenging consequences of her illness by consenting in advance to treatment: Sophie, who has a diagnosis of bipolar disorder, says she is likely to decline treatment when manic because she feels “on top of the world” and she does not want the treatment to take that away. However, when ‘well’, Sophie wishes that the treatment had been administered sooner because mania makes her behave recklessly with money.

Of the psychiatric survivors who spoke with me, the vast majority (11 of the 12) supported the idea that they should, when well, be able to give ‘advance consent’ to treatment they might refuse when ill or might wish to consent to treatment in case they are not  deemed to have mental capacity to make independent decision when in mental health crisis.  They argued an advance decision to consent to treatment would (and should) be given a lot of careful consideration (most believing that this should include accessing medical advice), and that patients should be limited to consenting in advance to treatment that they know and have previously received. One suggestion was that when it comes to treatment for a specific condition, it may be helpful for a medical professional to give the patient a document outlining the treatment they have previously received for this condition (including dosage, frequency etc), along with information about associated risks and potential side-effects. This could be a way of the patient and medical professional cooperating to make a decision about treatment.

There was some concern that advance consent should be reviewed regularly. Indeed, Eve felt it should be obligatory for patients and medical professionals to periodically (or when relevant circumstances change) review the advance decision to consent to treatment.  This would ensure that the treatment in question is a) still safe and appropriate should there have been recent changes in medical history, b) up to date, or c) does not require the patient to consider new emerging treatments stemming from medical or technological developments.  As Eliza put it:

We are the patients and they are medical doctors and so their expertise and point of view comes from medicine. And in medicine, we treat people with objectively scientific treatments. But the treatments are experienced by our bodies and not the administering doctor’s.

‘Eliza’

Participants wanted their advance decisions to consent to treatment to be accepted by medical professionals even if (perhaps especially if) they were refusing those treatments when they were ill.  One participant thought that it was “unimaginable” not to follow an advance decision to consent to treatment (she refers to it here as a “living will”) in such circumstances. She sums up the crux of the issue here:

Of course, people with mental health problems get paranoid. They might think someone wants to poison them, for instance. I think, that if I had made a living will and then I got paranoid and delusional and ended up in a hospital and said ‘well, I don’t want it anymore, I’ve changed my mind’ and they [doctors] listened to me,  I think I would be really cross. I think I would turn around and say ‘look, we agreed in advance when I was in my right mind, when I spent all this time considering this decision (…) that you would treat me and you didn’t’. I think, there could be instances where requested treatment is not medically possible then, you know, that’s tough but okay. But if they gave up on my advance consent too quickly, despite me considering all side effects and all possibilities, yes, I’d be cross. I would be really cross that nobody respected what I agreed when I was in my right mind.

‘Eve’

Before considering the limitations of the current law regarding advance consent, it is important to emphasise that support for advance consent to treatment was not universal among my participants. Two lines of argument were presented: Firstly, Helen thought the opposite. “In no way, shape or form” did she support the notion of advance consent. Helen thought that in most of her experience any consent she has given to treatment was coerced and that she was “never supported” in those decisions. She felt that advance consent would further “deteriorate” opportunities to “decide for [her]self”. Helen thought that she was “always able to judge what is best” for her and wanted to know what she could “refuse treatment at any stage”. This speaks to long-standing concerns of those questioning why autonomy interests of the ‘well’ patient should prevail over that of the ‘ill patient’. A potential practical solution to this ethical dilemma was proposed by Eve, i.e. to “let the individual decide for themselves because it [advance consent] is not going to work for everybody”. The second line of argument came from Albert, who supported the idea that advance consent should be available to patients in theory, but said that he “tend[s] to follow what doctors say anyway” and “no treatment was particularly effective” so he “probably wouldn’t make one”. Other empirical research suggests that some patients would not make an advance statement as they ‘accept they make poor decisions when “unwell” and prefer the treating team to make decisions for them’ whilst another group of patients thought ‘they wanted to make their own decisions at all times.’ So it seems that for reasons such as distrust of medical professionals or distrust of one’s own judgment, some patients would wish to avoid consenting to treatment in advance of a loss of capacity. This suggests that (in parallel with the Advance Decision to Refuse Treatment already set out in law) advance consent mechanisms would not be appropriate for everyone.

Current law in England and Wales

As I’ve shown, my research (along with findings from other jurisdictions where advance consent is currently possible) shows a strong preference for the opportunity to consent to psychiatric treatment in advance of losing capacity. However, the law in England and Wales does not currently allow for this. Presently, only advance refusals have legal force in the Mental Capacity Act 2005, ss.24-26. 

Advance decisions to refuse treatment are treated in law as equivalent to contemporaneous refusals;  “the decision has effect as if he had made it, and had had capacity to make it, at the time when the question arises whether the treatment should be carried out or continued” (s. 26(1) Mental Capacity Act 2005).   So, a valid and applicable advance decision to refuse treatment is legally binding upon medical professionals (and everyone else who might otherwise administer treatment) and the treatment refused cannot lawfully be delivered.

Some participants were baffled as to why they could not make a parallel document giving advance consent to treatment.  Like ‘Paul’ in the Court of Protection hearing that prompted this blog post, they did not want their incapacitous treatment refusals to be followed. 

Forced treatment

What then of the force that might be necessary to deliver treatments refused by an incapacitous patient?

Treatment without consent might be experienced as forced treatment (Note even when the physical force is not present – forced treatment can include administration of medication without consent, administration of psychiatric drugs, as well as physical measures such as restraint). If ‘Paul’ had been able to give advance consent, recognised by the law, to treatment (and related restraint) despite his at-the-time incapacitous refusal, then his treatment is less likely to be experienced by him as coerced or forced onto him. The question arises, would it still feel like forced treatment, given what is required (e.g. being held down by four staff members to stop someone kicking out while he’s shouting ‘leave me alone’ etc)? 

To an extent, it would certainly feel like ‘forced’ treatment, both to “ill-Paul” and to the staff restraining him. But I am inclined to agree with Kitzinger’s observation that an advance statement setting out a patient’s wishes would provide staff with some comfort. They would know that this is exactly what the patient had said he wanted staff to do at a time when he had the mental capacity to make these decisions. Even greater comfort could be provided by a formal “advance decision to consent” to treatment and necessary restraint, if the law were to permit this.  In addition, legally enforceable advance consent would also protect medical professionals from liability, e.g. should associated risks of administering the treatment in question materialise.

Finally, the quote I cite above from Eve suggests that patients might feel more abused if their advance consent is not followed, than if it is followed contrary to their non-capacitous wishes.  Treatment involving restraint and given against a person’s current wishes is often experienced as coercive and abusive, particularly at the moment that it is taking place, but psychiatric survivors recognise that it is sometimes necessary and even lifesaving. In hindsight, some are grateful that they received forced treatment regardless of what it felt like at the time.

Advance consent that is a carefully considered and voluntarily chosen treatment might reduce ways in which force is experienced. Some of the worst experiences of force described by my research participants arose because the person was not provided with (sufficient) information about risks and side-effects. Perhaps the most extreme example of this is found in Lucy’s account of finding out five years into taking a specific medication that it causes chemical castration. She was only given this information after inquiring whether the medication should be withdrawn as she was trying to conceive. Lucy felt that the treatment she received for five years was ‘without [her] consent’ and abusive because she was not given the information that the drug had such high potential of altering her life forever. So, to minimise experiences of force, all risks and side effects must be disclosed to a patient – whether the consent is being sought at the time of treatment, or in advance.   In the Court of Protection case of ‘Paul’, it seems he was aware of the dangers of restraint and sedation alongside the administration of haemodialysis. He understood that there was a substantial risk of death or brain injury, but he also understood that without taking this risk, he would certainly die as a consequence of untreated kidney failure.  Full disclosure concerning the risks and benefits of treatments is essential for informed consent, including advance decisions to consent.

Autonomy

For ‘Paul’, the outcome of the court hearing was the one that he wanted: the judge ruled that it was in his best interests to continue to receive dialysis, via force if necessary, on those occasions when (lacking capacity to do so) he declined treatment. In that sense, as Celia Kitzinger says in her blog, the court decision may have enhanced 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.

If the law were to provide for an “advance decision to consent” to treatment, this would offer scope for the opportunity for self-determination for psychiatric survivors (and others) sought by the vast majority of the participants in my research. It would not be left to others to make such decisions in their best interests (as the Court of Protection did for ‘Paul’). In this way, for such people, advance consent could provide a mechanism for enhancing their autonomy.

In this blog post I have explored the potential of advance consent as expressed through lived experience. I have not explored in detail the legal or practical problems that might be associated with advance decisions to consent to treatment. However, I remain hopeful that by highlighting cases such as Paul’s and learning from lived experiences of psychiatric survivors, we can make small steps that will lead to better experiences of treatment for those in mental health crisis.

Magdalena Furgalska is a final year PhD Candidate at the Birmingham Law School, University of Birmingham (funded by the Economic and Social Research Council) with a broad area of expertise in mental health law, medical law and human rights.  She tweets @MagdaFurgalska Email: mwf149@bham.ac.uk

Photo by Clay Banks on Unsplash

When Expert Evidence Fails

Editorial Note 2: The interim judgment addressing the concerns with expert evidence on capacity that arose in this hearing has now been published (18th November 2020) and is available here: https://www.bailii.org/ew/cases/EWCOP/2020/58.html

Editorial Note 1: The Final Report from the Working Group on Medical Experts in the Family Courts was published three days after this blog post and makes some helpful suggestions for managing (and averting) some of the problems we identify. It is available here.

By Celia Kitzinger with Claire Martin, Beth Williams and Katy Dobia[1], 2 November 2020

A hearing before Mr Justice Poole (COP 13551368) listed for three days (26-28 October 2020) was adjourned, only part-heard, because of inadequate reports from the expert witness.  

The expert witness, Dr Q, a consultant psychiatrist, gave evidence that the person at the centre of the case (let’s call her Barbara) lacked mental capacity to make any of the decisions before the court.  His evidence simply collapsed under cross-examination.  

The Local Authority (represented by Brett Davies) had relied on this expert evidence to support their position that Barbara lacked mental capacity in many significant areas of her life.  After cross-examination from the other parties revealed gaps and weaknesses in Dr Q’s report, Brett Davies requested a half-hour adjournment to “anxiously reflect” with his clients on what had happened.  He returned to court to report: “It is now the Local Authority’s position that Dr Q’s evidence isn’t sufficient to rebut the presumption of capacity in respect of the issues under discussion.”

There were, he said, “lessons to be learned”.  The judge thanked him for his “realism”. Plans were then set in train to adjourn the hearing, to appoint a different expert, and to continue the hearing in mid-January 2021.  

In the meantime, there is likely to be an interim judgment by Mr Justice Poole that takes the opportunity to “teach lessons for others” about the kind of evidence a capacity assessor (whether expert witness or practitioner) should properly display by way of evidence.  The judge asked for written submissions from the parties as to the deficiencies in the evidence before this court and how they might be avoided in future.  (A similar judgment concerning the deficits of a different expert witness report, which – as in this case –  wasted three days of court time, has been published here.)

Background

Barbara is 68 years old and has dementia.  She’s lived in a care home since early July 2019 though she still has a tenancy on the flat she was living in, alone, before then.   

After moving into the care home, Barbara struck up a relationship with another resident, “John” (not his real name).  Back in December 2019, the couple were seen kissing and holding hands in communal areas and were several times discovered lying down together in bed – and Barbara has been found naked in John’s bedroom.   Barbara would like to marry John, and to leave the care home and live with him in extra care housing.

Staff at the care home became concerned that Barbara may not have capacity to consent to – or to engage in – sexual relations, or to make other important decisions such as where she lives and the care she receives.  The care home manager made a referral to Barbara’s social worker, who visited her towards the end of December 2019 and again in January 2020 and assessed her as lacking capacity to consent to sexual relations.  Barbara did not agree with this capacity assessment and was clear that she wanted to be free to have an intimate relationship with John. 

This led to a series of court hearings in January, March, and July 2020.  Barbara acquired an Accredited Legal Representative (ALR); her son was briefly joined as a party and later removed with his consent; and at some point (I’m not sure when) Barbara’s partner, John, also got legal representation.  John asserts that Barbara does have capacity to decide where she wants to live and to make her own decisions about what kind of relationship she wants to have with him.

The expert witness, Dr Q, was appointed shortly after Barbara was deprived of her liberty under an urgent authorisation in mid-January 2020. He was asked to report to the court on Barbara’s capacity to conduct the proceedings, and to make decisions about where to live, what care she receives, her contact with others, and her sexual relations – and also her capacity to make decisions about her property and finances including terminating her tenancy agreement.   Interim declarations were made that she lacked capacity in all those areas.  These interim declarations (or “orders” and “directions”) under s. 48 of the Mental Capacity Act (MCA) 2005 are made where “there is reason to believe that P lacks capacity in relation to the matter” and “it is in P’s best interests to make the order, or give the directions, without delay”.  They are made pending subsequent determination as to whether or not, in fact, the person does or does not have the capacity to make their own decisions – and that subsequent determination was the goal of the hearing I observed. 

Relevant law

It is a fundamental principle of the Mental Capacity Act 2005 that each person is presumed to have capacity unless it is established that they lack capacity ( s.1(2)). According to Mr Justice Hayden: “The presumption of capacity is the paramount principle in the MCA. It can only be displaced by cogent and well-reasoned analysis” London Borough of Tower Hamlets v PB [2020] EWCOP 34)

A lack of capacity to make a decision cannot be established simply by reference to some ‘condition’ that a person has (e.g. dementia) (s.2(3)(b)): it must be shown that the “impairment of, or a disturbance in the functioning of, the mind or brain” (s.2(1)) causes the person to be unable:

(a) to understand the information relevant to the decision,

(b) to retain that information,

(c) to use or weigh that information as part of the process of making the decision, or

(d) to communicate his decision (whether by talking, using sign language or any other means). (s. 3(1) MCA 2005)

The courts have warned about setting the bar too high since this could operate as an unfair, unnecessary and discriminatory bar against mentally disabled. It’s also been stated that the person must understand the salient information but it is not necessary for them to understand all the peripheral detail (LBC v RYJ [2010] EWHC 2665). 

What counts as ‘relevant information’ depends on the decision being made and the circumstances of the case.  In relation to sexual contact, a recent decision by Lord Justice Baker in the Court of Appeal (A Local Authority v JB (Rev 2) [2020] EWCA 735) found that the relevant information includes the mechanics of sexual intercourse, the fact that both people must have capacity to consent (and must in fact consent), that pregnancy is a reasonably foreseeable consequence of (heterosexual) intercourse, and that there are health risks involved such as sexually transmitted diseases, the risks of which can be reduced by use of precautions such as a condom.  In relation to residence, the relevant information that a person must be able to understand, retain, and weigh includes: what the options are, including what sort of properties they are and what sort of facilities they have; the sort of areas the properties are in and any risks attached to that; the difference between living somewhere and visiting it; what activities the person would be able to do if they lived in each place; whether they would be able to see family and friends if they lived in each place; who they would be living with, and so on. (Re B (By her Litigation Friend the Official Solicitor) v A Local Authority [2019] EWCA Civ 913). 

If Barbara is deemed to lack the mental capacity to engage in sexual relations, then she must be ‘protected’ from sexual relations altogether. This would mean supervising her contact with John and monitoring the couple to ensure that they did not engage in sexual relations. It is not possible for anyone to make a ‘best interests’ decision on her behalf that she should be able to have sexual relationships, because this is an ‘excluded decision’ in the Mental Capacity Act:

 “Nothing in this Act permits a decision on any of the following matters to be made on behalf of a person— (a) consenting to marriage or a civil partnership; (b) consenting to have sexual relations…” (s. 27(1) MCA 2005).

The criminal law, in the form of the Sexual Offences Act 2003, is also relevant in this case since a sexual act with someone who cannot consent to it (no matter how willingly they assent) is an offence.  Offences can be committed by others who facilitate or enable such sexual activities (e.g. by carers who deliberately avoid entering a resident’s room when they know – or ought to know – that they may be involved in sexual activity and that the resident lacks capacity to consent to sex).  There is increasing concern about what this means for the fundamental human rights of disabled people, both in relation to the right to private and family life (Article 8 of the Human Rights Act) and in relation to the UN Convention on the Rights of Persons with Disabilities

Our experience of the hearing

For two observers (Beth, a social work student, and Katy, a law student) joining a remote hearing was a new experience:

“It was easy to gain access – via MS Teams – but it did feel a little surreal, joining court from my living room” (Beth Williams)

“Despite requesting access only one hour prior to the beginning of the hearing, I received a link and Transparency Order very quickly. It was definitely a strange experience watching a court hearing happen on a video call platform.” (Katy Dobie)

The hearing opened, as usual, with the judge ensuring that observers had received and understood the Transparency Order (information he repeated at intervals during the hearing as successive people joined).  He also let everyone know that, at Barbara’s request, he’d spoken with her earlier that morning and had just sent a note about the meeting to all the representatives.  We weren’t told what had been said in that meeting 

The applicant Local Authority was represented by Brett Davies.  Barbara was represented by Joseph O’Brien (via her Accredited Legal Representative).  John was represented by Ben McCormack.  Others in court included Barbara’s son, her social worker, some solicitors and (at times) Barbara and John themselves. Although Barbara did not formally attend court, it became clear later in the hearing that she and (it seemed more often) John were observing much of the hearing on a tablet in a room at the care home.  Neither of them spoke in court.

It was evident from the outset that most of the hearing would be devoted to questioning Dr Q about his reports – but it turned out he was not available until midday.  This gave some time for Brett Davies to explain the background to the case (summarised above).   The task of the court over the next three days, he said, was to consider the evidence of Dr Q, provided over four separate reports, and to determine whether Barbara has capacity to make her own decisions in key areas of her life.   He added that it was a “troubling feature” of the hearing that it was starting some ten months after the initial application to the court.  During that time Barbara and John have been subject to supervision and monitoring and denied opportunities for intimacy on the grounds that “there is reason to believe” (s.49 MCA) that Barbara lacks capacity to engage in sexual relations. 

The parties were in agreement that Barbara has dementia and that this constitutes an impairment in the functioning of her mind or brain for the purposes of s. 2(1) MCA 2005.  The final report from Dr Q (which public observers have not seen) claims that this impairment – he diagnoses, specifically, frontal lobe dementia – causes Barbara to be unable to understand, retain, and weigh information relevant to all the decisions he was asked to consider.  But there was a question mark over his report from the outset:

“It isn’t clear from Dr Q’s reports what relevant information was shared with Barbara and what it is that he says she hasn’t been able to understand, or retain, or use and weigh in relation to that information.” (Counsel for the Local Authority)

Dr Q’s evidence in chief, in response to questioning from counsel for the Local Authority, was that Barbara (now) lacks capacity “in all areas”.  (This contrasts with earlier reports, especially the report he made in June 2020.)  He said “her deficits are markedly obvious” and described her responses to him as “dismissive,” “glib”, “fatuous” and “superficial”, saying that these responses were “typical of frontal lobe dementia”.  

Dr Q seemed anxious to convey that these descriptions were not intended to be harsh judgments about Barbara’s behaviour.  He kept emphasising that “she’s not deliberately trying to thwart me – it’s her underlying impairment”.  He repeatedly asserted that Barbara wasn’t being deliberately “rude” or “difficult”: he explained that she “can’t help it” – all of which served only to underscore how challenging he had found his attempts to engage with her.  

He’d found it hard to pursue lines of questioning because he “met with a wall on her part”.  At one point he said that in trying to extract evidence of her ability to understand, retain or weigh information he “ran the real risk of her saying: ‘this interview is over. Please leave now’”.  

When the judge tried to “drill down” into what efforts he had made to assess her understanding of specific relevant information, for example about how to protect against sexually transmitted diseases, Dr Q sounded exasperated:

Dr Q attributed Barbara’s sexual interest in John as due to “disinhibition”.  Ben McCormack, as counsel for John, addressed this head on:

I did not hear any answer from Dr Q – only a suggestion that her capacity would need to be reassessed anew every time she wanted to knock on John’s bedroom door.

All of us, as public observers, were baffled and dismayed by Dr Q’s evidence.  

“I found it very difficult to follow the process that Dr Q had conducted and I didn’t see any evidence that each decision was systematically interrogated and reported on for the court, nor any clear account of how the process had been attempted and why it had stalled. I found myself thinking ‘He might well be right about P’s capacity – but he can’t account for why he might be right’. He couldn’t show his workings out, in other words. I felt a bit discombobulated by this – a consultant psychiatrist, expert witness, must surely have followed the fairly systematic MCA process of trying to establish whether P has capacity for each individual decision?  I kept coming back to a sense that the presumption of capacity was not his starting point; rather, that the starting point was that P had dementia and, therefore, was unlikely to have capacity.”  (Claire Martin)

Both Claire and I (Celia) – who have observed a range of other Court of Protection hearings – were also surprised and disheartened by how little information was taken into account about Barbara as a unique individual person with her own values, wishes, feelings – both before her dementia diagnosis and subsequently:

“At hearings I have attended previously, I’ve always left feeling that I have some sense of who P is: the way they liked to live their life (prior to any question of mental capacity), their values and wishes. I did not hear about P as a person during this hearing or in the evidence presented.  I later became aware that P was observing some of the proceedings from the care home where she resided and wondered what she made of hearing that she had been ‘glib’, ‘superficial’, ‘fatuous’ and other such words. Of course, these descriptors are common psychiatric parlance when assessing someone’s mental state and not intended pejoratively – and they are especially common when talking about fronto-temporal dementia (which was P’s diagnosis). I simply felt for P if she were hearing these words about her, in the absence of balancing descriptions of her as a whole person with a history and a life now.” (Claire Martin)

Under deft cross-examination by Joseph O’Brien (on the second day of the hearing), the deficiencies in Dr Q’s evidence were fully exposed, as he was taken through each of the four reports in turn.  The following exchange between Joseph O’Brien and Dr Q (as close to verbatim as I can make it given that we’re not allowed to record the hearings) concerns the first of Dr Q’s reports, in February 2020.

The second report by Dr Q (based on seeing Barbara in May) was apparently much more detailed – and it also differed from the first report about three months earlier, by finding that Barbara did have capacity for some decisions, at least some of the time.  In particular, Dr Q said in this second report that it was only when Barbara displayed disinhibited behaviour that she was unlikely to have capacity and on balance she had capacity the rest of the time.  This was odd as Dr Q had earlier said that he would not expect a person with frontal lobe dementia (FLD) to regain capacity over time (i.e. between assessments conducted in February and then in May, with the assessment in May formally submitted to the court in a report in June).

The doctor replied with something to the effect that the two reports differed because Barbara behaved differently on the first and second occasions.

The third report (in August) was not based on having actually seen or assessed Barbara but drew on reports from her carers.  Dr Q’s fourth report (at the end of September) was based on a meeting with her in person at the care home – relatively unusual given that capacity assessments during the pandemic are often done remotely.  He found “a more global deterioration”:

Later, Joseph O’Brien emphasised the draconian effects of a finding that P lacks capacity to engage in sexual relations – in that she will then be prohibited from having sex altogether.

Dr Q comes perilously close, here, to disowning his own reports, in which case, as Coulson J has  noted in a very different case (here) the “court cannot sensibly have any regard to them”.

After Dr Q left the (virtual) court – i.e. logged out– counsel for the Local Authority accepted that (contrary to the position he had taken initially and the claims made in his Position Statement): 

“Dr Q’s evidence isn’t sufficient to make a final declaration of P’s capacity under  s.15 MCA 2005 because of the failure of Dr Q to explore the relevant information for each of the decisions to be made, and to record that in his report, and to say whether it was specifically a problem with understanding, retaining or weighing.  His oral statements have not been able adequately to supplement his written report. There are lessons to be learnt here.  We are of the view that we need a further expert opinion”.

Nobody disagreed.  In considering expert evidence on capacity, as Alex Ruck Keene has highlighted, “what carries weight is the reasoning, not the conclusion” (Lord Prosser in Dingley v Chief Constable, Strathclyde Police 1998 SC 548, 604, cited by Alex Ruck Keene here)

The judge and three barristers were fairly circumspect in the public context of the courtroom in their reflections on Dr Q’s evidence, saying simply that he “hadn’t quite lived up to expectation” and that his evidence was “not up to the mark”.   One commented: “We anticipated a more comprehensive report, more compliant with the MCA 2005”.  

The observers, direct messaging between ourselves during the hearing, were more forthright in our views of Dr Q’s evidence as he was being questioned.  “It’s my first time hearing expert evidence, but it feels like he’s done a poor job in his reporting”, commented Katy Dobia.  “Yes, it’s really scary that someone in his position cannot provide clear coherent evidence” (Beth Williams).  Both students expanded on this when I invited them to contribute to this blog.  

“When the cross-questioning started, it quickly became quite apparent that the expert who’d assessed Barbara wasn’t able to answer the questions coherently.  This made me feel quite uncomfortable, as I believe – like many people – I would put my trust in someone who had the authority and power that this doctor had to determine someone’s life.  This really opened my eyes to the complexities of the Mental Capacity Act (2005) and how on paper it can appear easy to understand, yet in reality it can be extremely complex to ensure the decisions are being made to enhance the individual’s life rather than limit it.”  (Beth Williams)

“Listening to my first CoP hearing was such an insightful experience, but not exactly in the way I expected it to be. Having researched expert evidence and discussed it in a classroom context, I was shocked to see at first-hand how it can be more detrimental to a case than it may be helpful, if not diligently conducted.  One of the main things that I found took me by surprise was the contradictory statements which the expert had made.  He initially mentioned how Barbara’s condition would deteriorate and that there may be a stage of ‘plateauing’ or a ‘halt’ in deterioration but there would never be improvement. But under cross examination, it was pointed out that he’d reported that Barbara had not had capacity in February but that she had got capacity (for some things) in May – which suggested she’d actually improved by the time of their second interaction.  It was extremely significant to point out this gap as it was largely contradictory to his original statement regarding Barbara’s deteriorating condition.  I was reassured to see that the court did not accept that this expert’s evidence was sufficient to rebut the presumption of capacity.  Counsel for John made a very important point in the hearing: ‘The presumption that Barbara has capacity to make her own decisions is as important a presumption as the presumption of innocence in criminal trials’. While listening in on what the expert had to say about Barbara’s  capacity to consent to sexual relations in particular, my fear was that she would be deprived of the  right to make her own decisions about her personal life on the basis of poor quality evidence. I was so relieved that didn’t happen. It does give me some faith in the Court of Protection!” (Katy Dobia)

As an NHS Consultant Clinical Psychologist working with older people, Claire Martin reflects movingly on what this means for the person at the centre of the case. 

“I felt very sad at the end of the proceedings. Since the end of 2019 Barbara has been (consistently) expressing, verbally and through her actions, wishes to live and have sexual relations with the companion she has met in the care home.   She has been waiting almost a year now for these issues about her life to be determined. At the same time, I am mindful of the law in relation to lack of capacity and sexual relations. If sexual acts were allowed to take place in the home, without a determination of capacity, this could constitute assault or rape. Care home staff are often in invidious positions – trying to offer person-centred care whilst also having to police people’s actions. So, over all I felt very sad for Barbara, and for those caring for her who will need to walk the tightrope of her care before the case is heard again in January 2021. We must not forget that this is a woman in her 60s, whose dementia is becoming worse and time is of the essence for her to potentially be allowed to live a life she wants to live.” (Claire Martin)

Understanding the Problems and Moving forward

The deficiencies of this expert report, and Dr Q’s inability to ‘plug the gaps’ in his oral evidence, clearly have negative consequences for Barbara, for her carers and for John – who has already had a visit from the police warning him about the criminal sanctions attached to sexual relations with someone who is unable to consent to them.  

Although the judge commented that “Barbara clearly enjoys kisses and cuddles and it would be a shame if the regime in place were to prevent her from any form of affectionate contact with him”, Ben McCormack (as counsel for John) was clear that the Sexual Offences Act 2003 

 “sets a low threshold for an offence to be committed, so once the court makes an interim decision that P may lack capacity to engage in sexual relations, one needs to be very careful about permitting anything that could be seen as constituting sexual touch.”  

This raises, as Joseph O’Brien said, “a question of interference with my client’s [Barbara’s] Article 8 rights, and with Mr McCormack’s client’s [John’s] Article 8 rights, but there’s no answer to the Sexual Offences Act.”   

Barbara and John now have their relationship “on hold” until mid-January 2021, when a new (carefully selected) expert will give their assessment of  Barbara’s capacity to consent to sex (and marriage) and to make her own decision about residence, care and other important aspects of her life.  Only after this new expert evidence has been submitted and evaluated will the court finally be able to make some decisions on these matters.

The deficiencies of the expert evidence in this case meant that a court sat for three days – involving a Tier 3 judge, solicitors, barristers, care staff, a social worker, and others – without being able to make a declaration on the issue upon which the court’s judgment was needed.  Admittedly some of the work done in preparation for this hearing can be recycled for the next hearing (the Position Statements for example are unlikely to need rewriting from scratch), but nonetheless this was effectively three wasted days in court. In addition to the harm caused to Barbara and John, this is a waste of public money to the tune of at least a five-figure sum:  some lawyers (not associated with this hearing) from whom I asked for ball-park figures estimated in excess of £25,000.  

All three legal representatives in court hoped that the judge would be minded to make a short interim judgment about what had gone wrong and how expert witnesses should properly use the information relevant to decision-making and include, in their evidence,  a discussion of how they determined that P has, or lacks, capacity through the prism of P’s ability to understand, use and weigh that information.  “It’s a problem that we see not infrequently” said Brett Davies, “and it’s a point that could be made to inform practice on a wider scale”.  “The opportunity to teach lessons for others can be taken where appropriate,” said Ben McCormack, suggesting that the judge might like help with crafting an interim judgment in the form of further submissions from counsel setting out the expectations the court has of expert witnesses.  

I (Celia) have watched dozens of expert witnesses give evidence in the Court of Protection and I have never seen anything remotely like what happened in this hearing.  Some have been very impressive, and many are very good. I assumed, until Joseph O’Brien said otherwise, that Dr Q was simply bad at his job, but apparently not: “he’s an expert that lots of solicitors use, and the courts use, and he’s one of those experts who’s willingly gone into care homes to produce the best possible evidence for the courts”.  This, said Joseph O’Brien, was “my first experience of Dr Q not living up to the mark, as it were”.  The problem seems to be that, as he said himself, he ran into a “brick wall” of cooperation in trying to get this particular P to engage with him.  Dr Q was clear that this wasn’t her fault (her behaviour towards him “is a manifestation of the disorder itself”), but also that it wasn’t his fault either.  Recognising that he was struggling with his evidence, and as he was progressively brought to acknowledge its failings, he came several times close to apologising to the court: 

The interim judgment will perhaps address the issue of what’s expected of experts when they run into this kind of “brick wall of cooperation”.  How should they proceed? What evidence should they provide of their efforts to support P’s engagement?  We await the interim judgment with interest. 

The barristers in court also displayed some concern about the way in which public criticism might alienate people who might otherwise be willing to act as expert witnesses: “we need to hold close our experts in the Court of Protection – there aren’t that many of them” (Ben McCormack). It is also my experience as a public observer that there is a limited pool of expert witnesses in the court: I keep seeing the same ones over and over again (see my tweet about this here and the very interesting thread that resulted in which lawyers engaged with this issue).  

Joseph O’Brien suggested that “the crippling factors” limiting the pool of expert witnesses are “the nature of the work, the remuneration that’s paid, and the intensity of what’s expected in court.”   These concerns were also identified by the President’s Expert Witness Working Group Symposium (see the report by Malvika Jaganmohan here), at which participants identified shortages of expert witnesses as due to poor remuneration (also identified as a problem by an anonymous expert witness here), pension tax implications, lack of peer support, lack of feedback from the court, anxiety about media coverage, fear of rough treatment from cross-examining lawyers, and reputational damage.   

We end this blog post by recording a moment in court which felt very appropriate and fitted to the person-centred ethos and fundamental principles of the Court of Protection.  After accepting that “the court cannot be asked to make a final declaration on the basis of the expert evidence provided”, Mr Justice Poole displayed his awareness of the effects of this upon Barbara – who may or may not have been listening in to the hearing at the time (the tablet had been left connected during the whole hearing, but with microphone and video turned off).  I remembered as he spoke that he’d had a conversation with her that morning, before the hearing began.

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

Claire Martin is Consultant Clinical Psychologist. Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust, Older People’s Clinical Psychology Department, Gateshead. 

Beth Williams has a first degree in Psychology and is currently studying for an MA in social work at University of Chester. She tweets @Bethwilliams_96

Katy Dobia is a student in the Law School at University of York.  



[1] Celia observed the entire hearing from beginning to end. Claire observed almost everything (minus an hour on Monday and Tuesday mornings). Beth only observed Tuesday morning and Katy only Tuesday afternoon.   We are grateful to Brett Davies for a clear and comprehensive introduction to a rather complex case which made it as easy as possible for observers to follow what was going on (and Celia sent her notes from this introduction to the other observers). Such introductions add a great deal of practical support for the principle of transparency in the Court of Protection. We are also grateful to the court for releasing the Position Statements for all parties which are again hugely helpful in understanding the legal arguments involved – most especially the very detailed 60-paragraph submission from Joseph O’Brien, which was a legal education in itself.

Photo by Ricardo Moura on Unsplash

From black letter law to real-life decision making

Editor’s note: This is a report of a later hearing in the same case as the one covered in a previous blog here.

By Lucy Williams, 29 October 2020

I am studying a module on Health Care Law at the University of York.  We explore how decision-making capacity is determined on the basis of the Mental Capacity Act 2005, how best interests decisions are made, and the Court of Protection’s role within this process. 

This module sparked my interest in observing a Court of Protection hearing as I was intrigued to see how black letter law and the details of legislation are translated into court decisions.  In particular, I wanted to see for myself how much weight is given to the individual’s wishes in best interests decision making once it is determined that they lack capacity to decide for themselves.  

According to the Mental Capacity Act 2005, a person making a decision in someone’s best interests must, “so far as is reasonably ascertainable” consider “the person’s past and present wishes and feelings” (s. 4(6)(a) MCA 2005).  I wanted to see what that looks like in practice.

The case I observed was before the most senior (Tier 3) level of judge.  Here’s how the hearing was listed on the Royal Courts of Justice site (here). 

Before MRS JUSTICE LIEVEN, Also sitting as a Judge of the Court of Protection, Monday, 12 October, 2020, At 10:30 AM, FOR HEARING IN OPEN COURT, COP 13520726 Re ‘RT’ MS Teams Hearing

There was no information as to what the hearing was about in advance – the RCJ website provides no details (unlike the list by First Avenue House here).  

It turned out that this was not the first court hearing regarding the treatment of the young lady at the centre of the case. A previous hearing had been observed by several public observers who had blogged about their experience here.  This was especially useful because no summary was given at the start of the hearing.  According to the blog post about the previous hearing, no summary was provided then either despite summaries having been recommended by Mr Justice Hayden (Vice President of the Court of Protection) here.

From the blog post about the earlier hearing I learnt that P is a young woman who sustained a brain injury in a road traffic accident last year (although I remain uncertain about what specifically this injury entails).  Two main issues were discussed at the previous hearing: a request for an injunction to limit contact with P against a man who was deemed ‘dangerous’ and had recently been released from prison; and P’s care plan and how it would be paid for. The second of these was also the main issue discussed in the hearing which I observed. 

I found it extremely easy to gain access to the hearing.  I sent an email directly to the court clerk past at about 9.40am (for a 10.30 hearing) and got a response with the Microsoft Teams meeting link within 10 minutes. The hearing was short, only about 45 minutes in total, and the technology worked smoothly, although there were a few times I couldn’t make out what the counsel for the local authority was saying due to issues with his microphone. 

For me personally, the fact that the hearing was virtual rather than in person increased the accessibility to Court of Protection cases: to observe in person I would have needed to travel to London but instead I was able to view the proceedings more than 200 miles away in York. 

There were quite a few people in court during this hearing, including a few other observers, Key participants were the Judge, Mrs Justice Lieven, and counsel for P’s mother (Parishil Patel QC) , who was the applicant, counsel for P herself (John McKendrick QC)  and counsel for the local authority (Jon Holbrook).  

The hearing was focused around creating an appropriate care plan for P, who needs neurorehabilitation to help her achieve her goal of returning to university to continue her studies in 2021.  There was discussion about a residential placement for her rehabilitation, but P did not want to this because she wanted to stay close to her father who is very ill (and is likely to die within a year).  “We would be incredibly reluctant to force P to leave home and leave her father in such circumstances” said Patel.  Counsel for P herself agreed with this position and said: “It would be quite wrong to act against her wishes and feelings by sending her to an establishment when she wants to be at home.”  The hope was that there would be a residential placement nearby so that she can both receive therapy and be near her father at the same time.   Counsel for the LA also broadly agreed with this position and discussed what was being done in the meantime to provide (and fund) P’s therapy.

The wishes of P to remain near her father were respected by the judge who accepted that it was not in P’s her best interests to be sent far away.  She supported the view that a search should be conducted for appropriate residential care facilities nearby P’s home with experience in her specific type of injury, referring to the possibility of a “quasi-residential placement – like a day boarding school where you can get release” so that P could return home and be with her father when she wanted to. This showed me how well the court respected P’s wishes after she had been deemed to lack decision making capacity and how her wishes influenced the court’s decisions. 

The judge focussed on what was needed to make this a reality in practice. It seemed not to be very clear to anyone in the hearing exactly what would constitute appropriate therapy for P: there were references to three different models – intensive neurorehabilitation, a stepdown approach in a residential placement and community rehab – but no clear impression of what they looked like in practice or which would be most appropriate for P.  

The  judge said that “rather than the LA reinvent a wheel they’re not familiar with” they should talk to ‘Barts’ (I assume this is referring to Barts Health NHS Trust which is a children’s hospital in London) about what places there are in P’s geographical locality for people with the kind of neurological damage P has sustained,  and then provide a statement of this in the next hearing.  In response to the suggestion that there should be an order requiring Barts to provide a statement, she said “Don’t sit and wait for 28 days for Barts to produce a witness statement.  Give them a call and between the two of you work it out.  Have a conversation”.

The judge also raised a concern about what should happen if P’s behaviour and mental health deteriorates and there is a crisis. There have been such crises in the past during which she’s been sectioned.  “I want that interim scenario covered in the plan,” said the judge, “so that next time I see you we’re not all in disaster mode”. 

What I found particularly interesting in my observations of the hearing was the attitude of the judge, which I had expected to be more distant and formal.  Instead she came across as very engaged and human.  For example, when questioning counsel for the local authority about their plan for managing a crisis response, she responded to his attempt to answer by saying: “I think you’re ducking the issue to be frank.”  From her tone, it was easy to infer that Mrs Justice Lieven was exasperated by the legal representation for the local authority and their inaction in helping P. A similar forthrightness was witnessed in the previous hearing before this same judge:  one public observer suggested the judge was ‘somewhat acerbic’. The judge’s frustration was also evident when she described the hearing as “not a fantastic use of court time and public money”, referring to the number of times the case was coming in front of the judge without seeming to move forward significantly to benefit P.   When arranging the date for the next hearing she said: “there are some cases where I feel if I don’t have a hearing, nothing happens!”  While this attitude could be seen as sharp and critical, it seemed to me to be necessary in ensuring her stance was made clear and understood by all parties while pursuing the best outcome for P. 

For me as a student of health care law, this experience of observing the Court of Protection in action illustrated the reality of applying the ideals of the Mental Capacity Act 2005 to real life.  In theory, it’s easy to say that decisions should be made in P’s best interests, but even when – as in this case – everyone agrees what that is, judges have to deal with real-world issues like which rehabilitation unit would be suitable, how to find one with a vacancy in a particular area, how to manage a situation that could change unpredictably before the right rehabilitation unit is available, and how to ensure that the local authority and others responsible for P’s care keep up the momentum in finding the right treatment for her.  Understanding the Mental Capacity Act 2005 is not just about analysing black letter law and statutes and discussing it in the abstract. I’ve learnt that the Court of Protection’s role is also about managing the concrete particular details of a particular P in the specific conditions of her life and in the context of over-stretched health and social care services.  

Lucy Williams is an aspiring solicitor, who is currently in her second year of studying law at the University of York. Her email address is lw1972@york.ac.uk and she tweets @lucyfeywilliams. 

Photo by Ilyuza Mingazova on Unsplash

A COVID-Secure Attended Hearing

By Adam Tanner, 28th October 2020

Over the past seven years I have worked within the justice system and have been an observer as a law student and PhD researcher in several hundred in-person court hearings.  

Since the lockdown restrictions commencing in March 2020, there has been a new feel to the justice system in the United Kingdom. The vast majority of hearings have taken place not in a physical courtroom but via telephone or on Microsoft Teams, Zoom, and other kinds of remote platforms. 

With the recent easing of restrictions, some cases are now once again being heard ‘in-person’ as ‘attended’ hearings, where parties travel to the Court. I went to one of these ‘attended’ hearings on October 12th 2020 at  First Avenue House, the administrative headquarters of the Court of Protection in Holborn, London.

It was not like any hearing I have ever attended before.

Due to limitations on the numbers of people who are allowed to attend a hearing at one time – for this court hearing it was just nine – I was placed on a wait list to see if I could be granted access to the hearing.

On the day of the hearing I arrived at First Avenue House and was stopped at the door by security, who asked if I had shown any symptoms of COVID-19 within the last 72 hours. I was then asked which case I was a party to. This caused a slight issue as I was not ‘party’ to any case, but merely an observer. I was, therefore, sent up to reception (after having a socially distanced security search from a metal detector at arm’s length, while facing away) to check myself in with the Court of Protection team. The entire Court building has a huge, maze-like, one-way system of hallways with reminders on the floor every six feet to stay apart. I was asked to sign in and was presented with a copy of the transparency order for the hearing and was then asked to sit in a waiting area, to see if I would be granted access to the hearing. The waiting area had most of its chairs removed, so as to allow for social distancing. 

After a short wait I was approached by one of the Counsels in the case who said that due to unforeseen absences of some parties there would definitely be room in the Court for me. While I waited for the hearing to be called on there was not a single, non-HMCT employee to be seen. The Court was a ghost-town, unlike any Court I have ever worked in or visited. Anybody who has ever visited a Court will know that they are usually full of clients, defendants, lawyers and other interested parties. In most Courts people are fighting to find a seat, or somewhere quiet to have a conversation. This was certainly not the case on this day.

The hearing was called on and I took my seat at the back of the court, next to other taped off seats. Counsel for the parties sat two metres apart and signage on each desk advised parties where they could and could not sit, so as to allow for distancing. Upon the arrival of the Judge the first discussion was that of mask wearing. Masks are, of course, mandatory within all HMCTS buildings. District Judge Ellington told parties to do whatever they felt most comfortable with but said that masks should be worn by parties who are not speaking. Similarly, the issue of witnesses was discussed and how the flow of persons coming into and out of the courtroom would be managed with distancing. 

I was then addressed by the District Judge and asked if I had read and understood the transparency order given to me.  I was also read the standard warning about contempt of court should I not comply with the rules of the order. 

The hearing itself was rather stop-start as parties were running late to the Court, meaning we had to leave the courtroom and await their arrival. However, once the hearing was underway it was much like any other in-person hearing. At the end of the 3-hour long hearing Judge Ellington addressed me again to see if I wanted sight of any Court papers and what my reasons for wanting them were. She ordered that counsel provide me with any relevant papers before the hearing came to an end. 

If people have never attended a court hearing in person, I believe they should try it when they feel it’s safe for them to do so. See justice in action before your own eyes! I have worked for judges and magistrates in hundreds of cases and it never ceases to be an interesting experience. Although we can gain greater access to the Courts via remote hearings, they are in no way the same.  Attended hearings do not succumb to the same technological difficulties which so often befall MS Teams or Zoom hearings. 

COVID-19 has, of course, changed the way in which the Court system works and the current COVID-Secure hearings are definitely more intimidating, daunting and less pleasant experiences. Sitting in cold courtrooms in a mask for hours on end is not an enjoyable thing to do.  But compared with sitting behind a computer screen, an attended hearing really gives you a different feel of the court, and it’s worth it for the sake of open justice!

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

Photo by Adam Nieścioruk on Unsplash

Where P should live

By Bridget Penhale, 22 October 2020

In recent days I have attended three Court of Protection hearings – all of which dealt, in part, with the question of where P (the person at the centre of the case) should live.

The first of these (COP 1361430T, before DJ Mathura) was about an older woman with dementia who lives in a care home.  She wants to return to live with her husband but cannot do so because of the unsuitability of their house to meet her needs due to her physical health and mobility difficulties, which mean that she cannot use the stairs any longer. The LA has been tasked with finding Extra Care accommodation for both her and her husband and then sourcing associated support to enable them to live there.

The second case (COP 13629309, before HHJ Rowland)  relates to a young adult, subject to a protection order and currently living with parents, about whether he had capacity to consent to marriage – and ultimately to determine where he should live in future and who he should have contact with and what his care arrangements would be. There was a secondary concern about whether he might be subject to a Deprivation of Liberty in his home within the community and part of the hearing revolved around how an assessment relating to this might take place within the context of the pandemic.

In the third hearing (COP 13600925, before DJ England) there was again a question about where someone should live and about steps to be taken in relation to his accommodation, including the location of that accommodation, and  also what might need to happen to improve his well-being and quality of life in his current setting, in advance of any planned move.

These were all interim hearings and in all of them there was a very clear sense that there was some way to go before resolution would, or could, be reached via a final hearing. They were heard in different parts of England in different regional courts and concerned very different individuals and sets of circumstances. It was evident from the hearings that significant amounts of work (meetings and roundtable discussions) had taken place between hearings in order to reach some sort of agreement about the next stages and for these to be endorsed by the relevant Judge at the point of the (interim) hearings with clearly laid out plans for further steps that needed to be taken prior to any eventual determination via a final hearing.

As a former social worker, social work manager and academic with interests in older people, mental health and mental capacity, being able to attend these open court hearings virtually has been of great interest – both professionally and academically. 

One of the most relevant and pleasing aspects of the hearings has been the evident attention paid to the involvement of P in proceedings. Although P did not attend any of these hearings, what did come across and was clearly conveyed was a real sense of P as an individual and what their views, wishes and feelings were/are in relation to the life-matters affecting them.

 In the first case, P’s husband, himself a party in the proceedings, was present and the Judge made great efforts to include him throughout the course of the hearing and to check that he understood what was being said and what was happening – and also to seek his views about the situation. 

This was less apparent in the second hearing – although P’s parents were in attendance: an interpreter was needed in order to ensure that the parents were supported to participate in the hearing – but even here the Judge made sure that the interpreter understood what had been said so that the parents could remain involved as far as possible. 

In the third and final hearing, a very real sense of P as an individual with clear wishes and opinions about what he wanted to happen as outcomes of the hearing(s) came across throughout the course of this hearing and the Judge was quite central in making sure that this happened. It was clear for example that P was concerned about his spiritual wellbeing and would like to attend Mass. This is challenging at the time of the global pandemic, but a social worker was attempting to make contact with a local priest. P had also expressed a wish to go fishing, but apparently this wasn’t possible given the care home rules at the moment.  The judge was, as he put it “baffled” by this:

Of course, the Mental Capacity Act 2005 and in particular the Code of Practice that was developed to accompany it, is very clear about the central position of P within issues relating to decision-making and capacity.  Witnessing this in action within the judicial process, albeit some 13 years after implementation of the Act, was very useful to me. This is particularly relevant since some of my work (relating to undertaking Serious Case and Safeguarding Adult Reviews) has concerned situations in which professionals have either not understood  requirements or failed to act in accordance with the terms of the Act (sometimes both!). 

And although all of the hearings contained areas of tension – notably concerning disagreements about what ‘lack of capacity’ meant in the context of individuals and views contesting the determination of lack of the individuals’ capacities to make their own decisions about certain matters – for example where and who to live with – there was a sense that the issues were being dealt with in the context of individuals’ lives and that there was sensitivity towards both individuals and the contextual situations that had led to the matters being brought before the Court. 

At the end of these three hearings I find myself looking forward to following the hearings relating to these individuals further, if possible, and to attending other COP hearings about different types of matters in future.

Bridget Penhale is Reader Emerita at the University of East Anglia, Norwich and also an independent consultant on elder abuse, adult safeguarding and adult social care. She tweets @bpenhale

Photo by Bundo Kim on Unsplash

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