‘Vindicated!’ The experience of P in the Court of Protection

By JH and NB (with an introduction from Celia Kitzinger), 29th January 2023

Editorial Note: The judgment has now been published: NHS Surrey Heartlands Integrated Care Board v JH [2023] EWCOP 2

Introduction (by Celia) 

There was an urgent Court of Protection hearing at the end of last year before Mr Justice Hayden.  In this blog post, the person at the centre of the case (JH) describes – in his own words, as recorded by a family member- his experience of the hearing. This is a first! 

The Open Justice Court of Protection Project was set up (in 2020) to support members of the public to observe hearings and to blog about their experience of the court.  We’ve very occasionally published blog posts in which family members describe their experience of cases we’ve also observed (e.g. here and here).  But this is the first time we’ve had the opportunity to publish an account of a hearing by the person most affected by it, the person at the very centre of the case.  

Ethics

It’s really important that the people most affected by the justice system are supported to speak out about their experience – and that the rest of us listen to them.  It’s a vital part of open justice.  But it’s new territory for us.  When JH contacted me (via a family member) and offered to contribute to a blog post, I had to think carefully about the issues involved.  I consulted with other members of the Project team (which includes people with personal and family experience of autism) and put out a call for input via our twitter feed (receiving more than 30 responses from Court of Protection lawyers, social workers, and others). 

I have no reason to doubt that JH has capacity to decide to tell his own story in public and to give consent to publication. In the published court judgment of his case there is no finding of lack of capacity in any domain. He was found to have capacity to litigate, and did so as a Litigant in Person during a hearing of several hours.  

He chose to contribute via an ‘interview’ with a family member.  I was reminded (thank you Daniel Cloake aka @MouseInTheCourt) of the BBC Guidance on working with (potentially) ‘vulnerable’ contributors or anyone who might be at risk of harm as a result of contributing their story.  I’ve read and discussed this guidance with NB, who is JH’s cousin and ‘interviewer’.  She supported JH to tell his story, and will provide ongoing support after it is published.  

After typing up his interview, NB checked it with him and I’ve seen the text message in which he confirms that he is “fine” with publication of his interview, and that he “hopes it helps someone else” to know that it is possible to stand up for one’s rights against (what he experienced as) coercive attempts to impose medical investigations that he did not want.  He was also happy to contribute his story anonymously – as required by the Transparency Order, which was a relief as otherwise I’d have needed to help with an application to vary the Order.

After we’d agreed the text of his interview, NB wrote her own account of the background to the case, and I wrote the first draft of this “Introduction”, to contextualise what JH said in relation to the published judgment.  Then NB read the whole thing – my introduction, her background account, and his story – out loud with JH, checked he was happy with it, and returned it to me with some suggested additions and changes, all of which I’ve incorporated.  Finally, I received an audio-recorded  message:  “I’m just giving you my permission to publish it, and thanks for your support and help. It’s very much appreciated”.  (JH also chose the illustration for this blog post from a selection of four candidate images I sent over for him to look at.)

For JH, the process of telling his story for this blog post has been (he says) “empowering”. He is rightly proud of his role in the Court of Protection proceedings and feels that the outcome of the case has enabled him to be “a free man. Vindicated!”.  It’s a story he wants to tell so that other people who get caught up in disputes with health or social care teams can learn a bit more about how those disputes can be resolved in the Court of Protection – and perhaps they will be a bit less stressed and anxious by the idea of going to court when they realise from this blog post how “friendly” the judges can be.  He also wants to encourage other people to make Advance Decisions: “If you don’t have one of them, you have no chance! If you do, you have some protection for yourself”. 


The case of JH

The case concerned the validity of an Advance Decision made five years before.  (The Mental Capacity Act 2005 deals with Advance Decisions at ss. 24-26.)

The person at the centre of the case, JH, is in his 40s and was diagnosed with what the judgment refers to as “Asperger’s Syndrome (now recognised as Autistic Spectrum Disorder)” when he was 16.  He suffers from gastrointestinal pain and discomfort which has plagued him since childhood, and which now makes it difficult for him to eat.  For some years he’s been consuming only Fortisip high-calorie drinks and mineral water. He now weighs around six stone (says his GP) and has multiple vitamin deficiencies.  Doctors say his life is at risk.

In the past, he’s had lots of investigations, which he’s found intensely distressing, and he has consistently refused colonoscopy and gastroscopy. According to the published judgment (NHS Surrey Heartlands Integrated Care Board v JH [2023]  EWCOP 2):

“Such investigations were considered necessary and appropriate by his treating clinicians then, and by Dr W [his GP] now, to enable direct visualisation of the bowel and to allow biopsies to be taken to facilitate any diagnoses of a further range of bowel conditions that may be responsible for his symptoms. It is very clear from the evidence I have read and what from what JH has told me directly, that these extensive investigations of his childhood which necessitated such incessant hospital involvement has left him profoundly anxious and he is now entirely unprepared to attend hospital. Additionally, JH is deeply resistant to any form of invasive medical treatment.” (§2, Re JH)

I’ve been in touch with members of JH’s family since 2020, when JH’s cousin contacted me because JH was feeling “hounded” by health professionals who wanted to investigate his eating problems. I was told they had raised doubts both about his capacity to refuse those investigations and about the validity of his Advance Decision to refuse them.  He was feeling “disempowered” by their “paternalistic” approach. 

With JH’s knowledge and agreement, his aunt sent me a copy of his Advance Decision and details of the concerns raised by the local authority. His cousin, NB, also consulted a lawyer.  Apparently, the lawyer and I gave broadly the same advice about how to make his pre-existing Advance Decision ‘watertight’.  My suggestions included sorting out the date (the year was given as “20027” which doesn’t make sense) and separating out treatment refusals from broader wishes and feelings (which properly constitute an ‘advance statement’ (MCA s. 4(6)(a) rather than an Advance Decision).  I also suggested adding a specific refusal of clinically assisted nutrition and hydration (a feeding tube).  In my view, this was covered anyway by the refusal of “tubes inserted into my body” but I thought refusing the feeding tube should be separately listed since some people (including some doctors) don’t understand that food and water delivered through tubes is considered by law a ‘medical treatment’ (and not basic care).  

These amendments were discussed with JH and he planned to make changes to his Advance Decision (or to redo it) but for various reasons – including the challenges of the COVID-19 pandemic – he didn’t actually do so. So, the Advance Decision before the judge in December 2022 was the original version.  

The case finally came to court well over two years after I’d been alerted to the serious conflicts between health professionals and JH: for years there had been ongoing suggestions that he lacked capacity to make his own decisions, and might have done so when he made his (purported) Advance Decision. It seems to me that JH might have been spared a lot of distress if the case had been brought sooner, so that matters could have been resolved earlier.  It seems that it finally came to court when it did because professionals thought he might die over the Christmas period and wanted to be sure that they would not be held liable for withholding the tests and treatment that JH was refusing.  As the judgment says:

“…. whilst Dr W considered that it was feasible that JH had made a valid advance decision in 2017, a court determination was requested due to the stark consequences to JH if investigations leading to potential treatment did not take place, which would include his premature death.” (§2, Re JH)

Typical of Mr Justice Hayden, his judgment conveys a strong sense of the person at the centre of the case:

“Initially, I had formed the impression that JH had led something of a reclusive life, but in fact, it is clear that he sees his family his son, mother and daughter (in particular) on a very regular basis. They are all and each of them hugely important to JH.  attentive, kind, loving family, who bring much warmth into his life. He is a man whose interests in nature and the outdoors can find expression even within the limited confines of his own garden. His enthusiasm for birds and nature is one which he has passed onto his son. He is a keen musician. At 12 years of age, he saved up his pocket money and bought a Fender Stratocaster American guitar. It brings obvious pleasures to JH who plays it every day. He is, from what I have been told, an accomplished guitarist. He is modest about his own accomplishment, but Dr W has told me that JH has played for him and that he considers JH plays very well indeed.” (§25, Re JH, punctuation etc as in published judgment)

The judge was very complimentary about Dr W, the GP, who has been for the last 13 years  “absolutely dedicated to [JH’s] care, above and beyond professional duty or obligation”: JH and his GP have “a convivial relationship and there is obvious mutual respect” ((§4, Re JH)).  He drew attention to the fact that Dr W considered that JH was likely to have had the capacity to make the Advance Decision in December 2017, and “It is important to record that a capacity assessment undertaken in 2017 also concluded that JH had capacity” (§19, Re JH).

The legal situation, as outlined in the judgment is that there is:

“… no obligation on a patient, who has decision-making capacity, to accept life-saving treatment. Doctors are not obliged to provide treatment and, perhaps more importantly, are not entitled to do so in the face of a patient’s resistance. This reflects a mature understanding of the importance of individual autonomy and respect for human dignity”.  (§9, Re JH)

The judgment quotes from several earlier judgments which have established this point, including this extract: 

“Even when his or her own life depends on receiving medical treatment, an adult of sound mind is entitled to refuse it” (St George’s Healthcare NHS Trust v S [1999] Fam 26 cited at §12, Re JH)

The judgment describes the Advance Decision  made by JH in 2017 as being – apart from the muddled date –  “pellucidly clear” in relation to the current decision before the court concerning colonoscopy or gastroscopy.  I agree!  

The judge added that if the Advance Decision had not been valid (or not applicable to these investigations) and he’d been in the position of having to make a best interests decision, he “could not have contemplated a situation in which the envisaged investigations could have been forced upon him” – not least because JH had told Dr W that he would continue to refuse them, that it would need physical restraint to compel him to have them, and that he would feel “violated” by the investigations:

“The strength of his feelings, the consistency with which they have been held, for so many years, and his obvious distress at the contemplation of such an intrusive investigative process would, in my judgement, be brutally corrosive of JH’s autonomy. It would both compromise his dignity and cause him great personal trauma. It could not be reconciled with any concept of “best interests” in the manner required by the MCA.” (§23, Re JH)

There are at least two other published reports about this judgment. Legal commentator Alex Ruck Keene raises issues about retrospective ‘presumption of capacity’ (here) and journalist Brian Farmer, who attended the hearing, produced a report which appeared in the Evening Standard and the Independent (here). Neither of these reports –  nor the judgment itself – tells the ‘full story’.  

In what follows JH’s cousin and then JH himself tell the story of this case from their own perspectives.

1. Background to the hearing: By NB

JH is my cousin.  We spent a lot of time together growing up. Family has always been really important to us. Our Grandmother ‘Nanny Mary’ was from a big Irish family and her door was always open. She looked after everyone and we all looked after each other. 

In 2008 I was working for a local charity for people with profound and multiple learning disabilities. One of our trustees ran a training session on the Mental Capacity Act 2005 (MCA), he was a lawyer and had been involved in writing the Code of Practice for the MCA. I thought it was really interesting.

In 2017, JH’s Mum told me that he was being assessed by a familiar dietician and another less familiar clinician. She and he weren’t sure why –  but I suggested the learning disability team might be assessing his ability to make decisions for himself. They both looked horrified and had no idea that it was a mental capacity assessment. I’d remembered enough of the training to realise this wasn’t how the MCA was supposed to work. JH has made the same decisions around his health for over 20 years, never wavered.

I contacted another lawyer trustee who put me in touch with a human rights lawyer. She suggested completing an Advance Decision and directed us towards the website ‘Compassion in Dying’ for the template. I also called their helpline for advice and spent two evenings reading the whole of the Code of Practice for the Mental Capacity Act.

Then I printed out the Advance Decision forms from Compassion in Dying and gave them to JH to read in his own time. When he was ready, I sat at the computer with JH at the end of the phone and read out the questions to him. I typed up his responses, printed them up and gave the Advance Decision to him to check through and make any amendments. He also talked through it with his Mum. I made any changes and gave them both a final copy to check. I trained as a community advocate in the 1990’s, and knew it had to be JH’s words. I informed JH that he could change the Advance Decision at any time and we could use the same process.

A school friend of mine who had known JH for many years agreed to witness his signature.  She said to me at the time that she couldn’t understand why the team were questioning his capacity as she thought it was obvious that he had full capacity. 

Here is a crucial part of JH’s Advance Decision. It’s also reproduced in the judgment. It shows how an Advance Decision can be used to convey a clear sense of what someone wants.

“If my health deteriorates or if I should collapse and not have capacity to make decisions: 

I do not wish to attend any hospital/ medical setting. 

I do not wish to have treatment which involves inserting tubes into my body, operations, x rays or MRI scans. I am willing to have bloods tests at home and to be weighed. I wish to continue with diabetic treatment and medicines around that. 

I wish to have involvement with G.P, G.P practice nurses, Social Worker and Dietician but no involvement from other team members. 

I do not wish to have any unannounced visits from the Dietician. If the Dietician attends, I wish for the appointment to be pre-arranged and for a family member or my advocate to be present. 

I do not give permission for practitioners to be looking back through historical case notes. 

I do not wish for Multi-disciplinary meetings to be carried out without my knowledge and if a meeting needs to be carried out about my care, I wish to be fully informed beforehand. 

I wish to be fully informed of any discussions between practitioners about my case. 

I would like to be included by telephone or if I am unable to be present or on the phone, I wish to receive an agenda beforehand and written notes to inform me what has been discussed. 

I do not wish to be kept in the dark about my care or for practitioners to talk about my care without fully informing me. 

I do not wish for any assessments to be carried out on me without full written information regarding the assessments. 

I do not wish to discuss my history going back to my childhood treatment. 

I do not wish to make on the spot decisions about my care. The best way to enable me to make a decision is to provide the information and then give me time to think about the decision when I don’t have the pressure of time restrictions”

We requested a copy of the capacity assessment from the Learning Disability team, which was never forthcoming. I was told over the phone by the dietician that the outcome of the assessment was that he did have capacity. It is our view that a lead clinician in the team who had never met JH, later questioned the Advance Decision and his capacity at the time he made it.

Over the years, more and more clinicians within the Learning Disability team became involved. They had meetings about him, without him. The more they pushed, the more JH backed off. Some of them spoke to him like a child. They didn’t listen to him. They were at his door relentlessly. He asked me to phone them to say that he hadn’t given permission for them to attend his house. I called them and they still turned up banging on his door. They asked for a key to his flat. They gained a court warrant (JH still has the copy) resulting in police officers breaking into his flat. He was out at the time and they left a note for him to contact them immediately. As soon as the police officers spoke to him face to face and saw his Advance Decision, they realised he had capacity and left. 

I wish the Learning Disability team members instigating this had stopped for one minute and thought ‘how would I feel if someone treated me this way?’

It seemed as though they were looking for loopholes in the Advance Decision. Unfortunately, none of us had noticed that JH had made a mistake with writing the date. 

Over time , JH put a complaint in about certain members of the team and received a written apology. He took the complaint to the LGSCO (the Local Government and Care Ombudsman). These complaints weren’t highlighted in the hearing!

At this point I connected with Celia Kitzinger and observed a couple of hearings with the support of the Open Justice Court of Protection Project. I read many of the blogs and kept a close eye on the cases which I thought might be relevant to my cousin’s case. One case gave me hope. It was a case before Mr Justice Hayden involving a young man who had been given a colostomy, despite his (unwitnessed)  Advance Decision saying he wanted to refuse anything that would lead to a permanent stoma (which this had). In this case (Barnsley Hospitals NHS Foundation Trust v MSP), his family (like ours) agreed that his wishes were of utmost importance. There was another case where a ‘best interests’ decision was made not to force a feeding tube on someone, even though the young woman concerned was viewed as not having capacity to refuse it at the time: there’s a blog post about that case here: “Just listen to me please”. 

As a family member, I have been appalled at the paternalistic approach of the Learning Disability team and feel that JH was dehumanised by them. At every turn I thought it would be resolved, as to us it was obvious he had capacity and what his wishes were, but they continued to chase him. 

JH’s choices aren’t easy for us to accept, especially for his Mum and Dad and his children.  But others controlling his life and removing his ability to choose what he does would be a thousand times worse. 

He is his own person. He lives independently – near to family. He has a wicked sense of humour and he has such a blunt but lovely way of saying things. I remember when a psychiatrist (the one we suspect of having opened up questions about his lack of capacity) told him she was an expert in autism, JH replied: “So am I. I’ve had it all my life“.

So many decisions of the team were absolutely not in his best interests –  in his view and in the view of the family.  Maybe the Learning Disability team should have brought this to the Court of Protection years back? We were aware of their lawyers checking the Advance Decision a few years ago. Why was his case not referred then?

Now to the hearing, which JH didn’t realise was going to be a hearing until he was on the phone that morning with his Mum (my Aunt) by his side.  He just thought the judge was calling to ‘meet’ him and hear his views.  

He’d messaged the night before to say the judge was calling and I texted back ‘You’re amazing! You can eloquently put your point across. I have faith in you’. I imagine it was to his benefit that he had little time to stress,  but that night sleep did elude him, unsurprisingly. 

The next day I found out that he had represented himself in a five-hour long hearing and had won the case. He is absolutely amazing. It just goes to show what we all knew all along. 

My aunt said she felt like her brain was about to explode when she realised it was an actual hearing but said she had to remain really calm on the outside for JH. 

Most of the hearing is a blur to my aunt, but JH was able to recollect a lot of it and agreed for me to interview him. 

I have to finally add our thoughts about his amazing GP, Dr W. This man is the epitome of care and empathy. He has empowered JH, listened to him, given him time and treated him like a fellow human being. All these things built trust and safety. JH has said he is indebted to him. When JH completely disengaged from the Learning Disability team, I suspect Dr W spent a lot of time dealing with them on JH’s behalf, and this must have been a challenge at times. He spoke up for JH at the hearing with honesty and integrity. Our family and JH himself cannot ever thank Dr W enough. 

2. JH’s account of the hearing (as told to his cousin NB)

NB:  What was your first point of realising the Court of Protection was going to be involved? 

JH:  Dr W phoned at 8:30 on Monday morning to tell me that the NHS was taking it to the Court of Protection. He apologised for the distress, worry and upset.  He then arranged to come out the same day with a mountain of paperwork and explain things.  Dr W said he didn’t think it would be in court until after Christmas or the New Year which would give me time to find a lawyer and he gave me a list of lawyers’ names.  He marked down the recommended lawyers.  So, I thought at that time I had a few weeks to get a lawyer for after Christmas. 

Dr W then called again the following Sunday and said it was going to court next week and he came out Monday morning with yet more paperwork. At 5:30pm on Monday I got a phone call [we think from the NHS lawyer] demanding I get a lawyer and I was told the Judge would call me at 9am on Tuesday, the next morning.  At this point we still didn’t realise that it was an actual hearing as I was told it was just a chat with the judge.  

At 9am on Tuesday morning I was by the phone with my Mum.  Court admin called and told us that it was a hearing, here and now,  and asked where my lawyer was.  I said I didn’t have one.  At the time, I was on a £10 mobile from Tesco. It wasn’t fully charged and had around £10 credit on it.  Court admin wanted to hold the hearing online but I am not connected to the internet,  so Mum and I ended up on the phone with everyone else present in the courtroom. Dr W was also on a phone link.  The phone line wasn’t that great: at times it cut out but we were able to understand the overall themes.  We both took the oath before giving evidence.

NB: How did you feel at this point?  

JH: I felt angry that it had been sprung upon me.  But before the oath I was given the option to delay the hearing to allow me time to get a lawyer and I said I’d just about had enough, I wanted to get the decision over and done with and I still wouldn’t have had the treatment anyway.  My GP spoke up for me nicely.  He was very protective in his attitude towards me and manner. He did everything he could to get them to leave me alone.

NB: How did you find the experience of giving evidence.

JH: By this point I thought I’ve taken the oath and I’m going to tell the truth anyway and if people don’t like it, it’s up to them. The judge didn’t interrupt me. He gave me time to talk, time to explain things. He listened and took notice of me.  He came across as very genuine and understanding of my difficulties.  It felt like he was really listening to me and my voice.  The judge asked me about my family, so I told him.  He asked about my hobbies, so I told him about those too. 

Listening to what the NHS had to say, it felt like it was all about them and what they wanted to do to me. I’ve had about ten years of bullying and harassment and being told to ‘do as you’re told’ kind of attitude. It made me feel like I was worthless and had no control over anything. Like I was a criminal and I was being punished for something. I was ducking and diving and hiding from them and going out all day to avoid them. 

They said my Advance Decision might not be valid because it was from an internet service and they queried the date and thought I didn’t have capacity at the time.  The judge asked how I got the Advance Decision written and who helped me.  I said my cousin got it from the internet and my cousin and mum helped, and my cousin’s friend witnessed my  signature.  I told the judge they were all my own thoughts, wishes and words but my cousin typed it up as my writing isn’t neat.

It felt like every time I had something to say, they produced another piece of paper about me.  My IQ was mentioned and all. They couldn’t find the correct documents for my diagnosis. Also, the judge said he was led to believe that I was a recluse!  Not true!  

The judge asked me if I wanted a summary and decision today and I said yes, today.  Then, they broke for about 30 minutes and cut the phone off.  They asked me to ring back but I said I didn’t have enough credit, so the court called me back and I got the judge’s summary of the evidence and the decision.

NB:  And what was the decision?

The judge said that my Advance Decision was completely valid and that when I made it,  I had capacity.  He said (about the date) that many people make mistakes on paperwork.  As far as he was concerned, what I do from this day onwards is no one else’s business but my own.  The judge asked if I would like to say anything and I said, yes I would.  I said, thank you for your time, your patience, for listening to me and respecting my wishes.  Then it was all over. I was a free man, vindicated.

I am happy with the judge’s decision and his attitude towards me as he was really nice to me.  He came across as a friend, not at all like a judge, all stiff collared!

I was pleased I represented myself as I know myself better than anyone else.  I feel elated now that I never have to worry about being made to have investigations and treatments again.  I hope that no one else has to go through the same harassment that I got from them, and their controlling and paternalistic attitude.  I really hope this helps other people to stick up for themselves. 

Celia Kitzinger is co-director (with Gill Loomes-Quinn) of the Open Justice Court of Protection Project.  She is very grateful to NB and JH for their contributions to understanding the work of the court and the way it impacts on families.

Observing my first hearing: Plan to terminate contact if father is abusive to carers

By Josie Seydel, 23rd January 2023

On Tuesday 17th January 2023, with encouragement from Celia Kitzinger (thank you!) I decided to observe my first hearing in the Court of Protection. I have been studying the Mental Capacity Act (MCA) 2005 online, (with e-Learning for Healthcare run by Health Education England NHS) as part of my return to practice as a Practitioner Psychologist, and re-registering with the Health Care Professionals Council (HCPC), after a 5-year career break. I have found studying the MCA 2005 surprisingly enlightening and interesting but like so much of my personal experience of study it only really comes alive with ‘real world’ application. 

I actually had no idea that it was possible to observe a Court of Protection hearing and had made the false assumption that these were not open to the public until I was pointed towards the Open Justice Court of Protection Project (by following up on case law referred to in the course). Since the pandemic, many hearings are now online, making them even more accessible. I am not very ‘techy’ so my biggest anxiety was actually about joining via MS Teams and using the software correctly and not accidentally putting on my microphone or camera during the proceedings, but it all went very smoothly and I was able to listen to the whole hearing without any technical issues, even on my ancient laptop.

The hearing before Sir Jonathan Cohen (Case COP 11895778) concerned a 29-year-old man (P) described by counsel for the applicant local authority (in her introductory summary) as having Autism, a Learning Disability and, at times, ‘challenging behaviour’ (one example was given of him ‘ripping his clothes’ when distressed). I had no other background information about the case and none was specifically given. I also had to intuit who was who at the hearing as the barristers were not introduced as part of the opening summary and I wasn’t familiar with them, or court hearings in general to know. However, the Judge was obvious and fulfilled my stereotype! P’s father was expected to attend also.  When the judge observed that “we don’t yet have the benefit of P’s father here”, someone explained that he was often late, and it wasn’t unusual for him not to be present at the start of the proceedings.

The case has, I believe, been on-going for some time (possibly years). At this point, P is receiving 24-hour care in his own home through a care agency. It appeared from reports made by the Local Authority in charge of his care, that he is generally doing well – occasionally going out to the shops or to the park – but his regular, day-to-day activities and access to regular outings (such as day-care centres, education and recreational activities) were not detailed, and the Judge was concerned about this and requested that these be recorded and brought to his attention before the next hearing. 

After some further discussion about P’s general care and welfare, safeguarding issues were raised and requests made for additional powers to be granted to the Local Authority in charge of P’s care. Initially, knowing nothing of the case, I was confused as to the nature of these issues and thought they were about P himself, but it became clear that they actually concerned P’s father. He was described as often ‘kicking off’ and becoming verbally abusive to staff, at times requiring the threat of, or actual intervention from, the Police.  This, it was explained, was distressing to P and to staff caring for him, and there was concern about how to set clear boundaries with P’s father without creating a further breakdown in his relationship with P’s carers.

At this point, 30 minutes late, P’s father made his virtual entrance (by telephone). His behaviour in court vividly illustrated the problems the staff must be facing when he visits P.  For the next 12 minutes he produced a torrent of ‘colourful’ language directly insulting the judge, alongside allegations of staff abusing P, not washing him, not feeding him properly and denying the father access to his son. The Judge remained calm and did not display much of a reaction (apart from one brief wry smile and raised eyebrows) despite some pretty offensive insults! 

The Judge asked P’s father to desist and to stop interrupting, but he seemed incapable of doing so. The Judge warned him that he would be removed from the hearing if he continued to behave in this way and indeed, after a brief, but very feisty 12 minutes of attendance, court staff removed him from the (virtual) hearing.

Despite his challenging attitude, I was concerned that P’s father had raised some very serious allegations and that these might be lost amongst the necessity of dealing with his difficult behaviour in court and towards the Judge. I was assured, in an email later with Celia, who has been following this case for some time, that at least some of these concerns had been raised before and dealt with at previous hearings (though clearly not to the father’s satisfaction). It is an important part of the considerations of this case that, despite his contentious approach, P’s father has a right to be heard and have his concerns treated with due consideration. Disregarding his concerns would be a serious breach of justice, yet his offensive and threatening behaviour clearly needed addressing. 

The Local Authority asked the Judge to endorse a risk management plan enabling staff to terminate the father’s contact with his son if he becomes abusive towards staff.  They made clear that they were not seeking a penal notice in connection with this. The Judge endorsed this.  It seems that the father’s contact arrangements will be further reviewed at a later (final) hearing and in the light of a third party Disclosure Order for a police report about the father’s behaviour toward staff, which was also approved by the judge. 

It concerned me that P’s father did not have legal representation (I’m not sure why, but I made the assumption that this was for financial reasons) and that he could benefit from some emotional support and assistance so that his actions and behaviours do not actually become detrimental to the welfare of his son, which I think appears to be the crux of this case.

At this first hearing I think I was given quite a spectacle. I have a great deal to learn still about the case, the Mental Capacity Act and legal processes, but this was a really beneficial, though-provoking and useful experience and I feel very grateful to have been an observer.  My appetite is definitely whetted for more.

Josie Seydel is a Chartered Counselling Psychologist, based in Devon, with a background in forensic, adolescent, in-patient, and complex mental health care. She tweets @JosieSeydel76

Deprivation of Liberty Safeguards: A course for families

By Amanda Hill (previously written as ‘Anna’, daughter of a P)

Update: Following the court changing the Transparency Order for my mum’s case in March 2025, I can now reveal my identity

I’m involved in a Court of Protection s 21A application concerning my mother and the origin of this case was a Deprivation of Liberty Safeguards (DoLS) application.

So when I learnt about this course run by Edge Training specifically for family members of people in care homes and hospitals under DOLS, I was interested in finding out more. 

The day before the course (on 8th December 2022), I received an email containing the Zoom link and a copy of the pack of slides for the course. This proved to be very useful. I had a quick flick through them before the course but I also had the slides on my ipad during the course, which I accessed from my laptop, and of course they will be handy to refer back to in the future. I’ve attended a lot of courses where participants have asked whether the slides will be available afterwards, or I’ve had to take screen shots myself, so I appreciated being sent the slide pack in advance. 

I logged on a couple of minutes before the scheduled start time. Normally you sit in a waiting room but this time I was admitted straight away. I heard soft piano music and saw a couple of slides on rotation, informing participants to get in touch with the administrators if they couldn’t hear anything, or hadn’t received the slides, and information about how to ask questions. I could see other participants had joined too, although all cameras and microphones were off. Overall, I found registration and access to the course very efficient and organized, and helpful for participants. 

The course was led by Aasya Mughal, who started by introducing herself and Edge Training. She explained that Edge Training is a firm that provides legal training, particularly in the field of human rights issues, mainly concerning the health and social care sector but also for other organisations such as the police and the military. The trainers come from a range of professions and include judges, lawyers and social workers. Aasya is a barrister and director of Edge Training. 

I was quite surprised when, after her introduction, Aasya asked participants to introduce themselves and why they had wanted to attend. She stressed that the course was not being recorded and all personal details would be confidential, and she made it clear that people should only speak about what they felt comfortable saying. There were only six participants, and the course is always capped at 20, so this ‘personal’ approach is always possible. Everyone introduced themselves and most people put their cameras on to do this. This set the tone for the course, as it was quite interactive. Aasya encouraged participants to ask questions either through the chat or through raising a virtual hand (cameras stayed off whilst Aasya was going through the slides), and she mostly answered them as they came in. This approach was an alternative to going through all the slides and then having questions at the end, and it worked quite well as it meant the questions were relevant to the information on the slides.  

The content of the course was very informative. It covered the legal background to DoLS, some relevant statistics, what it is and who is concerned, the process, different types, criteria, the role of different professionals, protection and rights for those under DoLS, what can happen if procedures are not followed correctly and some other interesting legal information. 

The content could have been difficult to follow for us lay people attending, but Aasya explained it all in a very easy-to-understand way. And she took the time to explain anything that anybody said they didn’t understand. She made it very accessible. 

From my perspective, I also feel that what added to the value of the course was participants sharing experiences and stories, and in this way, we could learn from each other. This wasn’t “overdone”, it was mainly Aasya talking, and it was done in a safe way so that everybody only said things that they felt comfortable saying. This aspect of the course is dependent on the people who attend, but Aasya’s manner certainly helped:  nobody felt pressurized to speak. Some people had positive experiences of the DoLS process and some more negative and it was helpful to discover different perspectives. 

One thing I came away with is that (as I’ve experienced with my mother) families can feel at sea in relation to DOLS and unsupported. The more knowledge gained, the better the ability to navigate the process. This course would be really beneficial to family members whose loved ones are subject to, or likely to be subject to, a DoLS authorization. Most of the participants on this course were a certain distance along the path but it would definitely be useful for people at the start of the process as well. Aasya answered individual questions where possible or pointed people in the right direction to find out more. 

Aasya explained that more courses for families, like this one, would be run if there is enough interest. I for one would thoroughly recommend it for relevant families and I wish I’d had the opportunity to attend it earlier, at the time when my mum first became subject to a DoLS authorization. It would certainly have helped me to understand the whole process and its implications much more. There are still certain aspects that I don’t fully understand but this was not a bespoke consultation for me and I learnt a lot in a short time. I would encourage any families seeking to understand DoLS more to attend future courses. 

These courses are run regularly, so check out the Edge Training website – where there are free DoLS Rights resources if you need information before then (click here). 

Amanda Hill is a PhD student at the School of Journalism, Media and Culture at Cardiff University. Her research focuses on the Court of Protection, exploring family experiences, media representations and social media activism. She is a core team member of OJCOP. She is also a daughter of a P in a Court of Protection case and has been a Litigant in Person. She is on LinkedIn (here), and also on X as (@AmandaAPHill) and on Bluesky (@AmandaAPHill.bsky.social)

“He deserves a chance”? Continuities and shifts in decision-making about life-sustaining treatment

By Jenny Kitzinger, 14th December 2022

Mr P, an active and relatively healthy middle-aged man, had a heart attack at home on 3 September 2021. 

His family, and then subsequently, paramedics, delivered Cardio Pulmonary Resuscitation [CPR]. This was successful, insofar as he remained alive and his heart was re-started. However, he suffered devastating, irreversible hypoxic brain injuries. He has been left in a prolonged disorder of consciousness [PDoC]. This outcome is sadly not uncommon after CPR, a fact which complicates a general public narrative about CPR successes and ‘saving life’.

The medical evidence (from his clinical team and from two independent experts) is that P is currently completely unaware of himself or his environment and has been for the last 15 months. He is in a ‘vegetative state’ (one of the sub-categories of PDoC). There is a very small chance he might, in future, move into Minimally Conscious State minus, another category under the umbrella term PDoC. This slight shift in his level of (un)consciousness is very unlikely to occur. Even if it does it would, for him, simply involve, as one independent expert described, having the ability to feel pain, for example, but no ability to even distinguish between individuals around him. 

His future is likely to involve further physical deterioration (e.g. infections and increased spasticity). His life-expectancy, if current interventions continue, could be seven years. Meanwhile he is at risk of another heart attack or might die because of his increased risk of respiratory infections.

Mr P had not made an advance decision to refuse treatment or appointed anyone with Lasting Power of Attorney for health and welfare. It is, therefore, in the first instance his clinical team and (now) the judge who must make decisions about which of the medical treatments available to him are in his best interests. 

His clinical team is no longer willing to offer CPR or antibiotics for life-threatening infections.

They are apparently still willing to offer clinically assisted nutrition and hydration (CANH). However, they (and independent experts) do not think such treatment is now in his best interests. Efforts to reach an agreement about this with his family (including via formal mediation) has not succeeded. 

The questions before the court in this case were whether it is in P’s best interests for life sustaining treatment (specifically CANH) to be withdrawn, or not (or as more properly described, whether such treatment should continue to be provided). 

Alongside this, the court was also being asked to decide whether the Trust’s proposed palliative care plan is in his best interests.

I was interested in observing this hearing because I have been researching family experiences of having a relative in a Prolonged Disorder of Consciousness for over a decade now and am co-director, with Celia Kitzinger, of the Coma and Disorders of Consciousness Research Centre. We’ve published widely in this area and contributed to guidelines about the care of PDoC patients from the Royal College of Physicians. We’ve also developed resources for families and online courses to support clinical teams with law, ethics and best interests decision-making.

I have been observing court cases for a long time now – and also providing support to families going through them – so I am also interested in how the law, and the conduct of hearings, has shifted over recent years.

In this blog I describe the efforts by everyone involved to try to work out P’s best interests and specifically what P might want in his current situation. This work was done by family and friends on the one hand, and the clinical team/Trust and the Official Solicitor, on the other. Attempts to determine what he might want built on the same evidence (medical information combined with testimony about P’s values and how he lived his life) but different parties had come to different conclusions.

I conclude by reflecting on how this hearing is situated within the context of changing professional guidance/practice and case law over the last few years (including the ground-breaking Supreme Court judgment in Re Y (An NHS Trust & Ors v Y [2-18] UKSC 46).

Who was who in court

The hearing I observed was on Wednesday 7th December 2022 in the Royal Courts of Justice before Mrs Justice Arbuthnot.

The application was brought by the Trust responsible for P’s care, represented by Ian Brownhill of 39 Essex Chambers. The first respondent was P, represented by his Litigation Friend, the Official Solicitor – the barrister was Nageena Khalique KC of Serjeants’ Inn Chambers. The second respondent was P’s eldest daughter (supported by the rest of P’s family) – she was represented by Ben McCormack of Garden North Chambers.

Written evidence had been provided by P’s family and friends and by P’s clinical team. There were also reports by two independent experts (both Consultants in Neurological Rehabilitation). Professor Derick Wade provided a report in January 2022 and Dr Andrew Hanrahan, a jointly instructed expert, provided another independent report in July 2022.

The medical evidence presented in court

The medical evidence was not contested. Neither of the two independent experts gave oral evidence to the court and there was no cross-questioning or direct challenge to the medical consensus about P’s current state or likely prognosis. The level of certainty about his diagnosis and prognosis seemed compelling, informed by knowledge of the nature of the original incident, evidence from brain scans, the fact that it was now 15 months since the hypoxic injury, and evidence from repeat testing over time.

Hearing from family and friends in court

I think this hearing was originally planned to be entirely ‘in person’; however, in the event, it was actually hybrid (due to difficulties experienced by family members in getting to the Royal Courts of Justice on the day). 

Use of technology ensured effective participation from all parties and from people “engaged in caring for [P] or interested in his welfare” (s.4(7)(3) MCA 2005) e.g. a friend who provided oral testimony by video-link. Mr P’s wife and three daughters (also all on video-link) appeared together from their home, with his eldest daughter taking the lead to represent the family and provide an oral statement about her father. Although patients’ relatives can feel that they should be (or want to be) in the physical courtroom, facilitating the option of online connection can be very valuable. Online access allows  family members to support each other while giving evidence from a familiar environment, and avoids additional time and financial stresses at a point when they are often very overstretched and want to be at the bedside.

Everyone in court was consistently committed to ensuring that information about P as an individual was central to the hearing. When the friend due to give evidence had technological challenges joining the hearing, the court allowed plenty of time (half an hour) for this to be resolved and made a point of appreciating the efforts he had put in to participating once he did establish a connection. When the daughter became upset and faltered giving her testimony, the judge gently suggested that the order of witnesses be changed to allow time for her to compose herself. The judge said she wanted to be sure that P’s daughter would be left with no regrets, and would know that she’d been able to communicate what she wanted to in court. 

A point was also made about sharing photographs of P “in happier times”, before his injury. Although not formally filed, all parties were content for these to be shared and counsel for the family gave these to the clerk to pass on to the judge to look at. 

There also seemed to be a very positive relationship between Ben McCormack and the eldest daughter who he was representing. I hope this, and the general approach from the court, meant that the family felt heard, respected and supported.

Witness statements about P as a person

Oral evidence from the eldest daughter: P’s daughter showed great determination in speaking out about her father and painted a vivid portrait of him. I noticed how (like many of the family members with relatives in PDoC I’ve interviewed), she switched between past and present tense when talking about her father, perhaps revealing a tension between acknowledging the extent of what had been lost alongside recognition of his ongoing physical existence and some hope for his return in some form in the future.

“He was an all-round great dad. We have so many great memories”, she said, “He did anything for anyone – he would give the clothes off his back. He is just a great guy”. It is, she said, “really hard to see him [as he is now].” At which point she faltered and could not go on.

Returning to give evidence later, she started by saying that, whatever his current condition, “His presence now is just as powerful as what it was before”. It was clear that even if entirely unconscious, this man is still very much ‘there’ for the family who visit him daily as the much-loved father and husband he has always been.

During her testimony P’s daughter gave more detail about what kind of person he had been. He was, she said, “a loving soul”, a husband who had (until his cardiac arrest) not spent more than one night away from his wife throughout their long marriage. He was also a father devoted to his children, being sure to make time to collect them from school, and – now some of them are older – collecting them from work too, as the whole family continued to live together. He came across as a father committed to raising strong, resilient and independent offspring. He taught his daughters how to plaster walls, change engine oil, and spray paint cars. “Coming from a mixed-race household”, his daughter added, “ he always made sure we were comfortable in our own skins, and true to ourselves”.

A strong theme in the evidence about P was that he would always want to be with his family. His daughter described an incident at work when he fell off scaffolding and broke his leg. In spite of being in great pain, he insisted on being driven to the hospital closer to his family, rather than the hospital closest to his workplace. “Even though he was going through the worst pain imaginable, he still wanted to be closer to us so we could see him.” Her father, she said, would “always fight to come back to his family”.

Although they did not directly dispute the medical evidence, there was a sense that this family found it hard to reconcile what they were being told about P’s condition and what they experienced when they visited him (a very common challenge for PDoC families). During the process of his assessment, we heard the family had shown assessors a video of him. One clip showed him rapidly blinking, for example, which to them seemed to be in response to instruction, but which the experts assessed as a common spontaneous behaviour. Even on the day of the court hearing, the family wanted the judge to see a video too, of what he had been like the day before. Although the video was not formally submitted as evidence all parties were happy for this to be shared with the judge. (For discussion about the use of family videos in other court cases see, “Seeing is Believing? Patient Videos in Life-Sustaining Treatment Disputes”).

The family also seemed to hope against hope that P might defy the odds. “He was a fighter – there wasn’t anything he couldn’t do’, said his daughter. “All we want is to be given more time, he deserves a chance”…and later “All we want is more time. If there is any chance at all, he’d want to take it, to get back to his family”.

Evidence from a friend: The image of this much-loved man was reinforced by evidence from a close friend. Describing P as “like a brother, more than my own brothers”, the friend told the court how Mr P would “never turn anyone away….the generosity of the man just overwhelms you”. He also had huge physical strength and energy. His friend described moving a piano with P; four people on one side, and P on his own on the other, lifting that side all by himself. Prompted by the family’s barrister to talk more about “inner strength”, this friend also underlined that P had great mental strength and a “willingness to do whatever his family needed from him”. Expressing his own difficulty accepting the medical view he added:

“He’s got his eyes open – not focusing on me, but he lifted his head off the pillow which shocked me. I still think he’s in there, fighting. They tell me it’s just muscle spasms, but I find it hard to believe that when he lifts his head. Knowing the man I do, I believe he’s fighting to come out of that coma.” 

He added “I’d like to see him up and about again, to be with his family. I’d like the court to give him that opportunity”.

None of the barristers had any questions for P’s daughter or his friend. They were simply thanked for giving evidence.

Closing submissions and queries from the judge

In his closing submission Ian Brownhill, for the Trust, emphasised that no amount of medical intervention is going to return Mr P to his family. His future is bleak. He’s at risk of physical deterioration, totally dependent on nursing staff to meet personal needs, and at risk of respiratory infection, which, left untreated, are likely to bring his life to an end. He asked the judge to consider whether Mr P would want to live in his current state or, alternatively, be allowed to die with dignity in a hospice surrounded by the family and friends by whom he is so clearly loved.

The judge had some questions for counsel for the Trust. She asked for confirmation that the only reason P had continued to receive antibiotics last time they seemed to be potentially useful was because the family had at that point agreed to mediation (a few weeks earlier, in November 2022) – “so clinicians decided to treat rather than need an urgent hearing or face an unplanned death for Mr P?’” Ian Brownhill confirmed this was correct. She also asked about the current situation about antibiotics and was told by Ian Brownhill that “He won’t be given antibiotics again”. No court order was needed in relation to antibiotics as the clinicians were not willing to offer antibiotic treatment. A similar situation applied to CPR. 

The judge then asked whether the experts were saying there was “no prospect of recovery at all, is that right?” She was told by Ian Brownhill that, if anything, his condition was worsening. There followed some discussion about ensuring that the palliative care plan (should a decision be made to discontinue CANH) was fine-tuned to address P’s and his family’s needs, especially in relation to religion and culture. The plan had been carefully drawn up and, Ian Brownhill said, met the gold standard of clinical care (as outlined in the Royal College of Physician’s guidance on care in these circumstances). However, the family had felt unable to engage with end-of-life planning so far. The judge wanted to be sure this would now happen and expressed concern about, for example, ensuring that P’s large family could be with him at the end (rather than the practical and covid-informed limit of four visitors in the room at any one time, which was the hospice’s general policy).

The court then moved on to hear the closing submission from Ben McCormack. He underlined the fact that family and friends opposed the Trust’s application to withdraw CANH. They had, he emphasised, conveyed a vivid picture of P and the code and principles by which he lived his life: it was a matter of priority to them that this be considered by the court. He also highlighted that the family accepted the medical facts, but they did want to challenge the suggestion that his muscle tone was worsening; this was not their impression from their experience of helping with physiotherapy for him, and it was important to the family that this point be made. 

Ben McCormack also drew attention to P’s religion: “He was a Muslim who believed only God could choose a time of dying. He wasn’t a regular attender at mosque but would have held himself up to be a practicing Muslim”. He highlighted an extract from a written statement submitted by P’s brother: “He would say to me ‘when your time is up, your time is up, until then you don’t give up, no matter what’”. He also highlighted other statements from family about religion: “taking away nutrition would go against his beliefs” (daughter) and “a vital tenet of his faith is the preservation of life” (wife). 

Ben McCormack asked the judge to give due consideration to P’s possible attitude towards ‘chance’. He acknowledged that doctors are unlikely to go into print definitely stating that there is ‘no chance’ of any change, he agreed that the medical evidence was that even minimal change was “spectacularly unlikely”, but invited the court to consider the fact that the family feel that “even if these prospects are really small, this is a man who can and would want, to fight on”. Mr P was an individual who “doesn’t take no for an answer, whether it’s carrying a piano or manoeuvring a steel joist into a building. His family invite you to ensure those core beliefs are accounted for”. 

During this discussion P’s daughter intervened to raise another concern. She described what the family had experienced when P’s catheter had become blocked and “he’s maybe trying to push the water out. To us that means he can feel pain. So, withdrawing nutrition is a really cruel thing to do to someone”. Clearly the family needed to know how any possible pain would be managed if CANH were withdrawn. The issue of how many members of the family might be able to be present at one time was also raised again by the judge and Ian Brownhill asked his instructing solicitor to step out of court to contact the hospice to raise this question with them.

The final closing submission was from Nageena Khalique KC (acting for P, via the Official Solicitor). She outlined Article 2, the right to life and the strong presumption in favour of preserving life – but this is “not absolute and can be rebutted”. She described how reasonable steps had been taken to prolong P’s life over the 15 months since his heart attack and how the MCA Code of Practice indicates that in a limited number of cases treatment could be futile, overly burdensome with no prospect of recovery. She underlined the need for “anxious scrutiny” of what a treatment can do. In this case, she said, there is “a volume of evidence that treatment is not going to change the condition of Mr P…The most that can be expected from treatment is to fend off the infections, pressure sores and worsening contractures”. Quoting from an expert report she highlighted the clear expert view of “what can be expected for Mr P for the remainder of this life”.

“In practical terms ‘there is no doubt’- I pause there – ‘there is no doubt’ about what will happen for the remainder of his life.” 

The words written by the independent expert, she emphasised were ‘clear and unambiguous’ and ‘very stark’. Mr P will not have any autonomy or ability to control any area of his life. He will, by extension, not be the provider he’s always been. He will not have any functional abilities – even to the level of scratching an itch himself. He won’t be able to interact socially “at any level, even at the level of being able to recognise a particular individual”. This was, Ms Khalique KC surmised, something that, “had he had the opportunity to consider” he would be “extraordinarily distressed about”.

Quoting from a joint statement provided to the court by two of P’s daughters, she drew attention to their view that “We wouldn’t want our dad to live in this condition for the rest of his life, and dad would not want that either. But if there is any chance of recovery, he would want that”. She argued that “The whole basis of which the family would want him to continue is based on the possibility of a miraculous event going against all the medical evidence, that he might improve or recover”. There was, she said, “incontrovertible evidence about fixed and extensive” damage to his brain. Addressing the question of what Mr P might wish for in these circumstances she argued that “while the court may accept he’d want a chance at recovery, the court must forensically examine whether there is, in reality, a chance at all”.

Turning to the question of his religious faith Ms Khalique KC quoted from earlier case law and argued that “Religion may well be integral to character but that should not lead to assumptions that P would have taken a particular theological position based on his religion” and that it is “impossible to know what Mr P’s attitude would have been to life being sustained artificially”.

Finally, she highlighted that there was no evidence that Mr P was deriving any pleasure from existence, but that there were some concerns about the possibility of pain. She concluded that for his dignity and autonomy in his final days, it was right for life-sustaining treatments not to be continued. A palliative care plan which allowed him to die with his family around him was now in his best interests.

The hearing concluded with further discussion of the palliative care plan, some discussion about the Transparency Order, and the statement that the judgment would be handed down on Friday. The judge again thanked the family for giving evidence.

The judgment – Friday 9th December 2022

The judgment was handed down the following Friday morning in open court. (It is not yet publicly available in written form but should be posted soon on The National Archives and I’ll add the link when it appears.)

The oral judgment was given online, and everyone (including the family) joined by video-link. 

Mrs Justice Arbuthnot outlined the legal reasoning behind her decision and declared that it is lawful and in Mr P’s best interests for the treating team (a) not to provide ventilation or life sustaining treatment in the form of CANH, and not to provide CPR, and (b) to provide palliative care. 

In handing down this judgment the judge was careful to acknowledge both the kind of man P had been and the family’s concern. She highlighted P’s daughters’ view that withdrawing life-sustaining treatment might “stop what God has written for our dad”. But she said, “The life sustaining treatment delivered thus far has already interfered with what God has written for their father” – and was at pains to point out: “the time of death has nothing to do with the decision of this court”. After CANH is withdrawn: “nature will take its course”.

Execution of this order was delayed until noon on Tuesday 13th December 2022. This was to allow family to consider whether they wanted to appeal (I understand there won’t be an appeal) and to give them time to meet with the palliative care consultant and input into the palliative care plan if they now feel able to engage with this process. 

Reflections: continuities and shifts over time

Since the landmark Supreme Court case of Re Y in 2018, withdrawal of CANH from patients in a vegetative (or minimally conscious) state no longer requires a court application. 

Before Re Y, there were many court hearings at which clinicians and family agreed that withdrawing CANH was in the person’s best interests, but doctors and palliative care teams were unable to proceed without the approval of the court. The decision in Re Y means that decisions about CANH for PDoC patients now come to court only if there is disagreement about what is in the person’s best interests, or the decision is ‘finely balanced’. 

Clearly this case was in court because of disagreement between clinicians and family, and the bases for that disagreement are very familiar to me. 

Like many other families (including those who eventually – years later – ask for treatment to be withdrawn), the family in this case was holding on to the smallest glimmer of hope to stave off the devastating certainty of loss if their loved one died. Like so many people, they also had a belief that their family member was the one who would defy the odds – he is a ‘fighter’ whose sheer determination will enable him to overcome catastrophic brain injury. They also conveyed their strong sense that the person they knew is still ‘in there’, in the warm and moving body, that looks so different from how one imagines a classic ‘coma’.

The hearing was typical of most hearings I’ve observed in recent years, in that the court’s central focus was on working out what P himself might want in the circumstances. 

Mr P meets all the criteria for the diagnosis of a ‘Permanent Vegetative State’ [PVS] (as defined by the RCP PDoC guidelines). The diagnosis of PVS is one which for various reasons, is less emphasised nowadays, in favour of recognising a continuum of consciousness between absolutely none and the flickering awareness of the minimally conscious state, and combining this with a detailed discussion of prognosis. This is a change that comes with pros and cons in terms of family reactions and understanding (CDoCTraining, “Introducing Prolonged Disorders of Consciousness: Unit 3). In earlier hearings,  the suggestion was sometimes made that someone in PVS has ‘no interests’ (an argument made by the Official Solicitor in the Bland case (Airdale NHS Trust v Bland [1993] AC 789). This point was notable by its absence from this hearing (and I have not heard the ‘no interests’ argument mentioned recently at all in court hearings). At the very least, it was acknowledged that Mr P – even if entirely unconscious – had an interest in the manner of his death, and as a devoted family man, he would care about his family’s experience of his end-of-life care, their future wellbeing and how they might remember him. 

There was also no suggestion that Mr P’s values or statements of beliefs should be anything other than core to the decision. Even though there was no evidence of explicit statements about what he would have wanted in his exact circumstances (and no advance decision) a great deal of thought was put into trying to see things from his potential perspective based on what was known about how he had approached life, his faith, his commitment to his family and the code he lived by. It was clear that this would be given significant weight in the best interests balance sheet. This, of course, was not always the case. In W v M, heard in 2011, the judge stated:

“Given the importance of the sanctity of life, and the fatal consequences of withdrawing treatment, and the absence of an advance decision that complied with the requirements previously specified by the common law and now under statute, it would be in my judgment be [sic] wrong to attach significant weight to those statements made prior to her collapse.”

I would be very surprised to see a similar statement in a judgment today, over a decade later.

The other element of this hearing that stood out for me was how well-prepared the case was (at least at this stage in proceedings). It seemed clear that Mr P’s clinical team had taken ownership of their responsibilities in relation to best interests and that they had also sought out independent opinion in a timely manner: the first independent expert report was commissioned within a few months of Mr P’s anoxic injury. All the appropriate evidence was in place for the hearing. Although the judge said it was unfortunate that there may have been a delay in enacting Mr P’s best interests because of the mediation (in November 2022), I thought that must have been a hard judgment call for the clinicians trying to work out the best way forward. 

From what I could deduce from the hearing, the action of clinicians in this case reflected what I have seen since the Supreme Court decision in Re Y – which is that clinical teams are increasingly building up the confidence to take responsibility for going through a full best interests process and making every effort rigorously to adhere to the (very clear) RCP and BMA guidelines. It was also good in this case to see explicit statement from clinicians that some treatments were simply not on offer (something which has been more ambiguous in other hearings I’ve observed, where clinicians seem to say that they do not think they should offer a treatment, but would if the judge decides it is in P’s best interests to do so).

Finally, what was evident in this hearing, and I have increasingly observed in other best interests decision-making discussions (both inside and outside the courts) was adherence to the principle that CANH should be treated in law as a life-sustaining treatment like any other and subject to the same best interests processes (as is spelt out by the BMA/RCP guidelines). Alongside this, there seemed to an acceptance that death following CANH-withdrawal might even be preferable to death from, for example, an untreated infection. This can seem counter-intuitive, and certainly challenges the popular discourse around ‘dehydrating and starving to death’ but the suggestions that this can be a relatively ‘good death’ is something supported by family reports to us (see Deaths after feeding-tube withdrawal from patients in vegetative and minimally conscious states: A qualitative study of family experience;  see also CDoC Training: ‘End-of-Life care course: Unit 4, ‘Positive experiences’).

Evidence that death following discontinuation of CANH can be relatively peaceful is also supported by clinical experience. Lynne Turner-Stokes and her colleagues published an invaluable review of ‘experience and lessons’ from the last eight years of decision-making about life-sustaining treatment for PDoC patients in their care. They note that: 

“However sensitively managed, BI discussions regarding elective CANH withdrawal can be very difficult for families, and they require support in their own right. Nevertheless, the feedback from families has been very positive with many expressions of gratitude to the team for supporting a dignified and peaceful death…our experience has been that dying in this situation has often been more peaceful than dying a respiratory death.” 

Understanding of Prolonged Disorders of Consciousness, the care of patients, support for their families, and the law around treatment decisions has undergone rapid evolution over the last decade. Clear monitoring and auditing of patient pathways and decision-making about (dis)continuing life-sustaining treatments is needed, both in the courts and in the clinic, but it seems to me there have been positive developments. I think Mr P’s family can be confident that a huge amount of skill, care, time and experience has gone in to trying to make the right decision, or ‘the least worst’ decisions, in the tragic circumstances in which he, and they, now find themselves. 

Jenny Kitzinger is Professor of Communications Research at Cardiff School of Journalism, Media and Culture. She also co-directs (with Professor Celia Kitzinger) the Coma and Disorders of Consciousness Research Centre and runs online training for healthcare professionals about law and ethics. She tweets @JennyKitzinger

Researching the Court of Protection: Accessing hearings as a PhD student

By Rhiannon Snaith, 9th December 2022 

I’m starting a PhD looking at the media reporting of Court of Protection decisions about life-sustaining treatment. I’m lucky enough to have an ESRC scholarship to do this work, under the supervision of Professor Jenny Kitzinger at Cardiff University. 

As part of my project, I obviously want to study hearings, understand how journalists have access to and negotiate what they can say about a case and look at published judgments, as well as press and TV coverage. 

I hope my work will be useful to the Court of Protection, all those involved in court cases, and to journalists. I also hope it will contribute to open justice principles and to general public understanding of the work of the court

In this blog I want to reflect on the experience of trying to observe a hearing as part of my PhD – and ask for help with this study!

I initially heard about the CoP case (COP 13938884) at around 10pm the night before the hearing was due to happen (on 7th December 2022). It was listed for 10am the next morning before Mrs Justice Arbuthnot at the Royal Courts of Justice (RCJ). It was only at this point that I learned that the case concerned life-sustaining treatment. The court listing did not indicate the subject matter of the hearing (I understand that hearings in the Royal Courts of Justice – unlike COP hearings in the regional courts – never do) – but Celia Kitzinger (co-director of the Open Justice Court of Protection project) had asked on twitter and been informed that it concerned withdrawal of clinically assisted nutrition and hydration. 

At this stage I didn’t know whether there would be an opportunity to view the hearing remotely (it was not listed as remote or hybrid), but as that was the only option for me, it was worth trying to see if online access was possible. So, following the example my supervisor had sent, I emailed the RCJ to request a link to observe the hearing, and cancelled all my appointments for the next day, keeping my fingers crossed I could join virtually.

Preferably, such cases would be good to observe in person but due to the last-minute nature and the fact that a journey to the RCJ would take me up to 5 hours, an online hearing was more feasible. However, I was pleased to learn that a public observer who lived in London was able to get to the RCJ at short notice and we’d be able to have a conversation with him afterward too.

The next morning, I grabbed a quick breakfast, rallied up anything that might be needed including pen, paper, snacks, water etc. and began checking for a link and scrolling through the tips and ‘what to expect’ emails my supervisor had sent me to help prepare for the upcoming observation (if we managed to get in). 

The general rules were to ensure your mic and camera were off, though there is always a possibility that you could be asked to turn them on, which is why it is important to make sure you are appropriately dressed. It is also important to never take any photographs, videos, or voice recordings of the hearing and I was advised not to make any public comment about the case. (Jenny and Celia have live-tweeted from CoP hearings in the past, but Jenny was clear with me that this involved greater skill and understanding than I currently have.). You must also be on your own while observing (unless you’ve previously asked the court for the link to be shared with someone else) and you must not share the link to the hearing with anyone.

Jenny also reminded me that due to the nature of the cases brought to the Court of Protection, it’s important to take care of yourself and take a break, if necessary, at any point during the hearing. However, she advised, it would be best not to exit the video-platform, as there is no guarantee you will be let back in.

The hearing was scheduled to start at 10am, but the link to the hearing did not come through to me until 10.16am. I promptly followed the link and the instructions that came along with it and entered the online conference room. In preparation, I had already ensured that my camera was not only ‘off’ but covered with a sticker and was obsessively trying to check that my mic had been turned off – it was. 

Once I entered the video conference, I was greeted by a black screen that stated ‘No one is presenting’ with a list of names on the lefthand side that told me who was a guest and who was a host: among them I recognised Jenny’s name. Satisfied that we had both made it into the online room, we privately messaged each other (via text message, during which time we ensured our cameras were off and that we were on mute.

Halfway through this exchange Jenny tried to help me by describing which barrister was which by reference to where they were sitting on the benches, as she explained that there had been no introductions (or if there were, we were both admitted too late to hear them). Up until this point I had been under the impression that the hearing had been delayed and I was merely waiting for it to start – but because of her comments I realised Jenny could see and hear things I couldn’t. 

Though I’d followed all the instructions and used the Google Chrome extension, which is recommended, I’d somehow ended up in some sort of holding pen, unaware that the case has started. I exited the online room and attempted to follow the link again – it worked this time and let me straight into the hearing. At this point it was 10.44am so I was really worried that I had missed a lot. But actually, the hearing had been put on hold due to technical problems on the part of one of the witnesses. I was unsure as to who was who, but Jenny thankfully knew some information, even without having heard an introduction herself (e.g., she knew who the barristers were and who they were representing) and she emailed me this and a summary of the bits I’d missed, which made deducing what was going on much easier. I don’t think the hearing would have made as much sense to me without this help. Also, it would have been really helpful to have had position statements, but I gather these weren’t yet available because of issues with the Transparency Order.

At the end of the hearing, the journalist physically present in the court room, Brian Farmer, asked a series of questions about what he could and could not report about the case. This was something he particularly needed to clarify as there was no Transparency Order available. This was really interesting – potentially – and important for my research but I strained to hear what he said as Mr Farmer was, unfortunately, off-mike. The camera was only on the judge at this point, and I had to try to deduce what the journalist was asking from the Judge’s responses.

During the hearing, I began making notes, attempting at first to be consistent with including time stamps (to allow Jenny and me to compare notes easily and to ensure I knew how much time was given to different witnesses etc). Unfortunately, I soon forgot about using time codes in my haste to write up as much as possible, as accurately as possible. In future, I need to find a way to remind myself to jot down the time every 2 minutes or so. This would be beneficial as later, whilst going through our notes, had I put more of the times down both myself and Jenny would know where to go in our notes to compare. 

I made sure that I made both a summary of what was being said (and by whom) and made a note of specific quotes that stood out to me. Following the proceedings was fairly straightforward though, inevitably, there were terms and phrases that I did not recognise or took me a moment to place. I have a growing list of ‘Key Terms’ in a separate document to aid me with this and have researched key aspects of the Mental Capacity Act 2005 which spell out how best interests decisions should be made.

I did find the case itself was upsetting, not surprising for a case where there is disagreement about life-sustaining treatment, but I debriefed with Jenny, and it did seem like the case was well run and the family had a voice. It was good to get a strong sense of the patient, and the lovely and much-loved man he had been, and to feel he was at the centre of the case. 

The hearing was concluded fairly quickly, ending at roughly 12.50pm.  The judgment is on Friday this week, which I also hope to attend. Meanwhile, I’m looking for the media coverage. 

I felt very privileged to have been able to observe this court hearing – but it was only through luck and with a lot of help that I was able to do so, and parts were rather frustrating, from the point of view of a researcher.

A final disappointment was to learn that the Open Justice colleague who’d been going to attend in person, didn’t do so.  He’d arrived at the court room to find a notice on the door saying “Private: No Admittance” and had left the building as a result.   

I can see it is going to be hard to study CoP hearings about life-sustaining treatment – time-consuming and tricky. 

If anyone can help me learn about hearings about life-sustaining treatment in advance, I’d be very grateful, as I hope to attend some hearings in person, and to be able to observe others online.

Rhiannon Snaith has an ESRC PhD scholarship to study reporting of End-of-Life Decisions. She’s just started tweeting @Rhiannon_Snaith and is looking forward to joining in online discussion of law, ethics, end-of-life and the role of journalism. 

Observing a remote hearing in court with the judge

By Celia Kitzinger, 7th December 2022

It was listed as an in-person hearing (COP 13641809) at First Avenue House in London on 28th November 2022.

I was in London for a conference and had the afternoon free, so I thought I would take advantage of the (for me, rare) opportunity to observe an in-person hearing. 

On arrival at First Avenue House (after putting my backpack through the X-ray scanner, phone and lap top out, emptying my pockets and taking a sip from my water bottle), I took the lift up to the 5th floor where the Court of Protection sits.

Court staff greeted me and said the hearing had been “rejigged as a Teams meeting”.  I asked how this would work: should I go away again and find somewhere quiet to sit and watch it via the Teams link?  No.  I would be shown into the courtroom, where Her Honour Judge Hilder would be sitting, and watch her interacting with the lawyers, who would all be attending online, visible on a big screen.

And that’s what happened.

There was a bit of a delay starting, which I think was occasioned by the need to produce a Transparency Order. 

It later transpired that the hearing had originally been expected to be “private” (in which case it had been incorrectly listed).  

“We are sitting in private”, said Nicola Kohn, counsel for the local authority. (I wasn’t sure, during the hearing,  who was counsel for which party because, although the judge did a generally very helpful opening summary, it didn’t include which barrister was acting for which party. I’ve subsequently received a copy of Nicola Kohn’s position statement  – thank you! –  which is enormously helpful.)

“Since Professor Kitzinger has taken the trouble to come to court,” said HHJ Hilder, “I made a Transparency Order and we are sitting in public”.  And, “just to clarify,” added the judge (turning to address me) “you would have been welcome to attend if it had been a private hearing”. 

It was a slightly surreal experience to be the only person in an otherwise almost empty courtroom, seated opposite the judge and a member of the court staff (an usher? a clerk?).

Normally, observers sit at the back of the court, and even though I knew there wouldn’t be any lawyers in the courtroom today, I somehow couldn’t bring myself to sit on the front benches, in the seats they would normally occupy.  Sitting several rows back was a mistake though – I couldn’t see the screen very well, or read the names of the lawyers on screen. Ironically, I’d have had better access to the hearing if I’d attended remotely like everyone else. With hindsight, I should have asked for the link and could have had it open on my laptop on silent: I’ve done that before – and since! – in hybrid hearings when I’ve been attending in person, and it massively improves the experience.

My engagement with the judge felt slightly awkward too.  Although there was no instruction to “All rise!” as is usual in in-person hearings, I did what the lawyers do in courtrooms and stood up when she entered at the beginning of the hearing – and again at the end when she left.  (This standing-up thing is not practised in remote hearings.)  

I expect the experience of having me in court was slightly odd for the judge too!

The judge introduced the hearing by explaining that KD (the person at the centre of the case) is 18, autistic, and has severe learning disabilities. He does not communicate verbally. He has previously been found to lack capacity to make all relevant decisions.  He lived with his parents until their relationship broke down, and then with his grandmother until being the subject of a care order.  He’s been living in a registered children’s home  – but he’s no longer a child and the focus of the proceedings has been to identify a suitable adult placement for him.  

The last hearing was on 20th October 2022 at which concerns were expressed about the lack of progress and non-compliance with orders.  

The judge had ordered that the next hearing should be listed as “in person”, meaning the legal team from the Bolton area would need to travel to London for the hearing,  “unless the parties could agree that progress had been made and non-compliance issues sorted so as to make attendance in person not necessary”.  And that, said the judge “was only confirmed this morning”.  

Nicola Kohn said there had been “a good deal of cooperation between the applicant and those instructed on [KD’s] behalf”, including a Round Table Meeting “as a result of which the Official Solicitor was satisfied that issues of non-compliance were resolved” – and a subsequent meeting had led to an agreed draft order that was now before the court. 

The judge said she was “fundamentally concerned with the lack of progress in finding KD an adult placement”, since it looked as though nothing would be available until he turned 20.

That was still the case, but the current placement was apparently content to keep him until then – although the judge asked for confirmation of this in writing.

This matter has remained before the court (rather than progressed as part of the streamlined process) owing to the court’s concerns as to KD’s vulnerability and the need for careful planning of his transition to adult care. 

“I’m not satisfied it’s appropriate for an adult to remain in a children’s home,” she said, as she tried to explore what was being done to locate an alternative placement – checking whether all placement options, including single tenancy (something that had caused concern previously because of the risk of social isolation), were being checked out. 

There was also some overview of arrangements for KD to go to his grandparents for (unsupervised) overnight visits. They needed appropriate training and to learn about KD’s routines. 

The grandmother wanted to be joined as a party, but the judge asked: “would the needs of the proceedings be better met by inviting [the grandparents] to attend and share documents, without formally joining them as parties, with the risks as to costs” – and that’s what was decided. (It appears they had been joined previously and were discharged, due to lack of engagement.)

The judge also raised questions about the use of a harness – which the grandparents say they never use, but it may be that the placement uses it (that was unclear) and the judge asked for “specific dates as to if and when it has been used since 1st July 2022” and “the learning disability nurse’s view as to its future use”.  

The next hearing will be remote at 11am on 7th March 2022.

This turned out to be a salutary opportunity for me to experience a “judge’s eye view” of a remote hearing.  I can now better appreciate the somewhat isolating and disjointed experience it creates for the decision-maker sitting in the nearly empty courtroom. My thanks to HHJ Hilder for admitting me.

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

“It will all work out”: The limits of a positive attitude in the Court of Protection

By Upeka de Silva and Jemma Woodley, 6th December 2022

We work with Compassion in Dying, a national charity that supports people to make their own decisions about end-of-life care in line with the Mental Capacity Act 2005. 

We promote the rights of capacitous people to document their care preferences using Advance Statements, Advance Decisions to Refuse Treatment and/or Lasting Powers of Attorney for Health and Welfare. 

Recently, we launched a call for guidance on voluntarily stopping eating and drinking at the end of life and so we were keen to observe a case that would potentially address this theme.

Celia Kitzinger alerted me to the case (COP 14017521 Re: EJ, 1st December 2022, Before Sir Jonathan Cohen in the Royal Courts of Justice), having observed the directions hearing last week. Without this, based simply on the Court Listings, I would not have been aware that this matter was before the Court. 

The hearing concerned EJ, a 27-year-old woman who has been diagnosed with rapidly deteriorating Functional Neurological Disorder, which has resulted in her currently suffering from functional quadriplegia and an inability to swallow food and drink. EJ has had contact with psychiatric services since (at least) 2018.  She has a working diagnosis of “Mixed Personality Disorder”, has auditory hallucinations, and her mood dysregulation has raised suspicions of complex Post Traumatic Stress Disorder. She’s been an inpatient in hospital since April 2022, having walked into A&E on crutches, complaining of weakness in her limbs. 

In August 2022, EJ lost the ability to swallow and has been receiving nutrition, hydration and medication through a Naso-Gastric tube (“NG tube”) and/or hydration and (some) medications via a PICC line (an intravenous line).  

Since the end of October, EJ has consistently objected to the NG tube and regularly chews through them or dislodges them by violently shaking her head. 

The Trust has applied for a declaration that it is in EJ’s best interests to have a PEG ( a percutaneous gastrostomy) placed under general anaesthetic, to deliver nutrition and hydration (and medications) directly into her stomach.

The judge, Sir Jonathan Cohen, had to consider the following:

  • Capacity: Whether EJ had capacity to conduct these proceedings and to consent to the provision of treatment including clinically assisted hydration, nutrition and medication
  • Best interests: Whether it is in EJ’s best interests to receive clinically assisted nutrition and hydration, and if so whether this should be via NG tubes (as before) or whether she should have surgery to insert a PEG.

Our first experience of being in the presence of P

EJ appeared in Court, from hospital, by video link. We were pleased that she was part of the proceedings but were soon disappointed to realise that other than her own statement, the only witnesses were clinicians. No family members or friends were called. While we have no doubt that the clinicians sought to keep EJ at the heart of their deliberations, we felt anxious about the potential power imbalance.

While it was useful that the cross examinations were undertaken, not just for the benefit of the judge but for EJ too, on many occasions we felt uncomfortable about EJ hearing fairly blunt descriptions of her behaviour (calling a doctor a “robot”) and making claims relevant to her mental capacity to make treatment decisions (e.g. not understanding that she will die).

We don’t know much about P

Ironically, while it was the first time we had observed a case with P directly involved in court proceedings, it was also the first time that we left feeling we knew very little about who she was and what mattered to her. We learned a lot about the pros and cons of various mechanisms for artificial nutrition and hydration but we don’t know what quality of life means to EJ, or what her wishes, feelings, values and beliefs are.

What we do know is based on what she said, quite forthrightly after all the other witnesses had spoken:

“This whole thing is just bullshit. People don’t listen. Surely, I should get to choose happens to me.”

“I want to represent myself. Even Ted Bundy got to represent himself in court and he was a serial killer.”

“I am articulate and I have capacity spilling out of me. 

Yes, I did call that woman a robot. I’m sorry about that. (To the consultant) You  just spoke a bit robotically at the time. This is a waste of everyone’s time. Everyone has made up their minds already.”

“I don’t want a PEG. I don’t want an NG tube, thank you. Or a PICC line. I want to go home, ideally today. It will all work out – its about a positive attitude – fake it till you make it.”[1]

When EJ spoke, via video link, she clearly expressed a wish to go home and it left us wondering if more could have been done to explore and/or accommodate this wish. At Compassion in Dying we have become very familiar with the desires of individuals to remain in their own homes and avoid going into hospital. While this is not always possible, an honest conversation around this is always appreciated by the people we support. So while the issue for the court was centred around the insertion of a tube, we couldn’t help but feel great frustration for EJ as this strong desire to go home seemed to be overlooked in the deliberations. 

The judgment

As EJ had been unable to demonstrate that she understood the consequences of refusing treatment (that it would lead to her death) and as she also has impairments in the functioning of her mind or brain, she was found not to have capacity to refuse the NG tube or PEG or other medical treatments.

Sir Jonathan Cohen considered carefully that the PEG may lead to short term trauma and a further erosion of EJ’s trust of professionals, but the alternative is death and EJ does not want to die. Rather she remains positive that “things will work out” and so the presumption in favour of life-sustaining treatment weighed heavily in the judge’s considerations.  He found insertion of a PEG to be in her best interests. 

During the judgment, the main screen visible to me as a remote observer was EJ’s. For this, I was grateful, because seeing how she felt mattered to me greatly. I watched EJ nodding approvingly as she listened to the judge repeat her words in his judgment. However, as soon as he authorised the insertion of the PEG, she asked the nurses with her to help her leave the room.

Although deeply apologetic once it was brought to his attention by one of the barristers, the judge misstated EJ’s name multiple times during the judgment which (the barrister reported) caused her much distress. We fear this only added to EJ’s distrust of professionals involved and her belief that the outcome had already been decided before the hearing began. 

On the other hand, we felt optimistic about EJ’s future when the judge ordered that the case should be back in court (before him) for a review in a few months time. He said, given that EJ is “strongly opposed” to the course of action he has ordered, “I think the court owes it to P to consider the matter”. Will EJ adapt to her life with a PEG? Will the medications she’ll be receiving through it help with her psychiatric illness? Will she be retraumatised and feeling defeated? We worry about counting on resilience and psychiatric medication to make up for the loss of autonomy.

Reflections

At Compassion in Dying, we support thousands of people to complete Advance Decisions to Refuse Treatment. The people we support tell us how relieved they feel knowing that these documented wishes matter, clinically and legally. In this way, the Mental Capacity Act 2005 is incredibly empowering. 

When we support people to plan for their end-of-life care, we strongly recommend that they spend time explaining who they are as individuals and what quality of life means to them. Observing cases in the Court of Protection has reinforced how important this is for ensuring that decisions are truly person-centred. 

So, we both struggled today. We didn’t know what truly mattered to EJ.  We heard her objecting in no uncertain terms to the treatment being proposed but we don’t know why she felt this way. We understood that the risk of withholding artificial nutrition and hydration could be death, but hearing from the Consultant Neurologist that another person in a similar situation didn’t need a PEG made us question whether there was no other way to more closely align treatment with EJ’s preferences. 

We appreciate that it would be very difficult for clinicians and judges to take a path that would put EJ’s life at risk. Yet, the trauma of her autonomy being overruled, and the loss of trust in professionals and in her own agency are not insignificant considerations. 

The complexity of decision-making in this case reminded us of how important it is to never over-simplify matters relating to treatment and care, life and death. 

Upeka de Silva is the Policy and Advocacy Officer at Compassion in Dying and tweets @de_upeka

Jemma Woodley is Information Support Officer at Compassion in Dying and tweets @JemmaWoodley2

Compassion in Dying tweets @AGoodDeath

[1] Quotes based on contemporaneous notes as recording is not allowed. They are as accurate as I could make them but unlikely to be 100% verbatim.

Hoarding disorder, dementia and a wish to return home

Celia Kitzinger, 5th December 2022

This is the fifth Court of Protection case I’ve observed about someone with hoarding disorder. (Take a look at my previous blog post: “A case of hoarding” which describes plans to return a person home with safeguards in place to keep her safe.)

The woman at the centre of the case I’m reporting on today is 82 years old, with both dementia and a hoarding disorder,

She’s now in a care home under an urgent order which expires in two days’ time, and she wants to return home.

The case (COP 14017786) was heard remotely before Mrs Justice Morgan, sitting in the Royal Courts of Justice on 22nd November 2022.

Until October 2022 she’d lived in a care home, but then decided to return to her home – which was “dilapidated and in a dangerous state”. 

She was thought to have the capacity to make this (clearly unwise) decision, and the local authority worked with her to try to keep her as safe as possible.

Everything came to a crescendo last Thursday with a (third) forced entry into her home, due to a smell of gas.  She’s been using a butane gas cylinder to cook on.

She was admitted to hospital to be assessed for gas poisoning and made it clear that when she was discharged she would return home.

The local authority made an urgent out-of-hours application to convey her to a care home on discharge. That was approved and she was discharged from hospital last Friday to a care home where she is reported to be “relatively settled, but is clear that she would like to return home”.  It turns out that’s not going to happen (if it happens at all) before the end of January 2023.

Both lawyers (one for the protected party, one for the local authority) emphasised that she is “very articulate” and that “the capacity issue is not straightforward”.  

What’s needed now is a capacity assessment from an independent expert to determine whether or not she has capacity to make this decision for herself.  Counsel had hoped to appoint Professor Paul Salkovskis from Oxford Health NHS Foundation Trust who runs a national specialist clinic for hoarding and had been instructed in another case of hoarding earlier this year, Re: AC and GC (Capacity: Hoarding: Best Interests) [2022] EWCOP 39. But it seems as though he’s not available and they hadn’t yet located another expert

The case in which Professor Salkovskis was instructed earlier this year had some very similar features. it concerned a 92-year-old woman referred to as “AC”, also with both dementia and hoarding disorder.  She had been moved to a respite placement whilst the poor sanitary conditions and other hazards identified by professionals (including electricians and the fire services) were dealt with and she clearly and consistently expressed the wish to return home.  The judge in that case authorised a trial for AC to try living at home.  I don’t know how it worked out – but it was clear from the agreed statement of legal principles in that case law is very much on the side of honouring, where possible, a protected party’s wishes to live at home.  This extract is from Appendix 3 of Re AC)

In Re GC [2008] EWHC 3402 (Fam), Hedley J considered whether it was in the best interests of an elderly man to be discharged from hospital to the home where he had lived for many years and commented at para 21: 

‘GC is a man in the 83rd year of his life and my concern is to ask myself: how will he most comfortably and happily spend the last years that are available to him?…. Next it seems to me that for the elderly there is often an importance in place which is not generally recognised by others; not only the physical place but also the relational structure that is associated with a place …’

In connection with the issue of a ‘trial’ placement, Hedley J commented at para 24:

‘It seems to me that it would be wrong not to try, even with a degree of pessimism, a placement with a package of support’

The decision of District Judge Eldergill in Westminster City Council v Manuela Sykes [2014] EWCOP B9 is of relevance:

‘several last months of freedom in one’s own home at the end of one’s life is worth having for many people with serious progressive illnesses, even if it comes at a cost of some distress. If a trial is not attempted now the reality is that she will never again have the opportunity to live in her own home’

and that

‘although there is a significant risk that a home care package at home will ‘fail’, there is also a significant risk that institutional care will ‘fail’ in this sense (that is, produce an outcome that is less than ideal and does not resolve all significant existing concerns)’

Mr Justice Hedley held in P v M (Vulnerable Adult) [2011] 2 F.L.R. 1375, at para [34]:

“I am very influenced, rightly or wrongly, but it is only right everyone should know it, by the timescales in the case. I am very influenced by the desire to allow people where it is at all possible to spend their end time within the family rather than in an institution, even if there are shortcomings in terms of care which an institution could address.” 

Where (as here) there are serious risks attached to returning home, the court has:

“…confirmed that its function in challenges such as this can be to take decisions on behalf of P that public authorities feel are too risky for them properly to be able to take themselves, and that it is perfectly appropriate that responsibility for the outcome should fall on the shoulders of the court (Re M (Best Interests: Deprivation of Liberty) [2013] EWCOP 3456, Peter Jackson J (as he was then) at para 41)”. (Appendix 3, Agreed Statement of Legal Principles, Re. AC & GC)

I hope the 82-year-old in this case will have the opportunity to try living at home again, with the right support in place.  It may be, of course, that she has capacity to make that decision for herself. 

The next hearing – at which these matters will be decided –  will be on (or around) 30th January 2023 at First Avenue House, London.

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

Note: The facts of this case are as accurate as I could make them on the basis of the hearing (which included a helpful opening summary). However I have not received Position Statements from either party, nor have I received a Transparency Order, despite my requests.

“I don’t want to be here… I want to go home”

By Catalia Griffiths, 2nd December 2022

I am an assistant psychologist working with Older People at Bensham hospital in Gateshead. Claire Martin is my line manager. On my first induction day with Claire, she mentioned that, outside of work, she is a member of the core group of the Open Justice Court of Protection Project. I remember being amazed, thinking about how passionate she must be about promoting open justice in the Court of Protection to carve out time on her days off for it.

Since our first chat about the project, I had been looking forward to observing my first Court of Protection case. I finally got the opportunity on Monday 7th November 2022 at 10:30am – a remote hearing before DDJ Reeder (COP 1399280T) sitting at First Avenue House.

I remember the rush of emotions waiting to receive an invitational link to the virtual courtroom. I was simultaneously nervous and excited, unable to sit still at my desk. 

The email arrived, and attached to the link was a ‘Transparency Order’ document. Unsure of what it was, I clicked the file and my stomach sunk as the realisation set in. It was a document with a set of rules that must be obeyed around observing the Court of Protection case. Any defiance meant that you may be “sent to prison, fined” or have your “assets seized”. Although I was not planning on disobeying any of the rules, the formality and the authority of the document invoked a sense of fear in me. It reminded me a lot like being in the presence of a police officer. Although you know that you are not doing anything wrong, you cannot help but feel a little bit nervous around them. 

When Claire and I were let into the virtual courtroom, we were asked to turn on our cameras and to state who we were. Judge Reeder was happy for us to sit and observe the case: he even offered us 5 minutes of his time at the end to answer any questions (which is an extremely rare occasion). 

As soon as the case began, I remember feeling overwhelmed. As there was no round of introductions. I was trying to work out who was who, whilst also listening to Judge Reeder giving a brief summary of the case. It felt like I was trying to jump onto a fast-moving train. 

From the summary given by the judge, I gathered that the protected party (referred to as “GNK”) was an inpatient with Huntington’s disease. Her case was brought to the Court of Protection because her wishes are to be discharged from the hospital and go back into the comfort of her own home. 

The case first came to court on 24th October 2022. At that point, the judge said that she “awaited the consideration of a litigation friend. I reviewed that she lacked capacity to conduct litigation, based on [treating doctor’s] report.” The COP3 form from the Social Worker supported this view. 

The judge went on to set the context further: 

Judge: By that time an authorisation had happened regarding residence on the ward until 16th January 2023. We then constituted proceedings on the basis of Section 21a challenge – GNK said cogently “I don’t want to be here.” So, if so, when and to where? GNK said “I want to go home”. The Local Authority took the view that this wasn’t suitable, and …. discharge planning hadn’t reached a conclusion. We moved to highlighting two things – my concern that what was being talked about was a refusal by GNK to acknowledge her Huntington’s disease and a refusal to acknowledge the need for care. I asked [whether it was] lack of capacity or an unwise decision wanting to go home and look after herself. The other thing is [the] transition. I highlighted that for authority for chemical or physical restraint – I would expect the plan to detail clearly levels of escalation, triggers and the contents of each level, and the personnel involved at each level. [Then it was] relisted urgently for this hearing. 

I thought this was an important question from the judge: is GNK’s wish to move back home evidence of her making capacitous ‘unwise’ decisions or does she lack the capacity to understand, retain, weigh and communicate the relevant information in relation to this decision? The judge has requested a section 49 report from the Trust, hoping that this question will be answered. A future hearing has been arranged for the 29th January 2022 to address the issue. 

Judge Reeder also pointed out that although the option of GNK moving back home is not yet closed off, her services do not seem to be doing everything in their power to make it a more feasible option. For instance, making sure that her home is habitable, since it has been reported that the home is “significantly hoarded” and “not safe to get into”. They are also unaware of what kind of tenancy it is or what bills need to be paid in order for GNK to move back in. Judge Reeder mentioned that it would be pointless to send her home only for it to be repossessed within a few months. I agreed with his point, and wondered why her team was not doing everything they could to explore whether they could honour her wishes. 

Whilst the possibility of GMK moving back home is properly explored, there is the possibility that she might be discharged to an interim placement. The judge spent time questioning the draft order which outlined a transition plan, should she need to move somewhere in the meantime. He was especially concerned about the triggers for escalation to different levels, given that the draft order is requesting authorisation for physical and medical restraint. 

Judge: The thing I can’t see very clearly is the triggers to move between the levels of escalation. It starts with encouragement. I am reading for the first time … it’s written in a narrative. You’ll appreciate I understand that this is on the basis that restriction is necessary but it helps me to understand how those involved with P would move between these levels of escalation. 

Louise Thomson (counsel for the Local Authority): They don’t want to use any kind of restraint. It’s hoped that verbal encouragement and reassurance will reduce the need … if she actively resists then minimum restraint will be used on her limbs and a belt in the chair. I can’t see how it will be escalated further.

Judge: I can see one starts with verbal encouragement, then escalates to ‘physical assistance’ and then it reads that this may then be followed by physical restraint. I have to say it could still be a little bit clearer. The different trigger points for escalation. I can see work has been done to address the levels – I can see the contents of each level to a degree but I can’t see the trigger points. I appreciate it’s a difficult situation but for the court to authorise it I need to see the triggers to escalate the levels. It’s where we get to ‘restraint’ or ‘further restraint’. Please give it a bit more thought to make it clear. The reason I say this is because if it’s not clear to me, it may not be clear to others on the ground. 

Coming from a support worker background, where I have had to use physical and mechanical restraints on patients, I thought this was a necessary request from the judge. Using restraint is a serious process that can have a significant impact on patients and, in some cases, can result in re-traumatisation. Due to this, it is crucial to have a clear explanation of what the draft order refers as “triggers” to escalate the levels from “encouragement and reassurance” to “physical assistance” to “further restraint”. An unclear care plan can lead to unnecessary or unsuccessful use of restraint. A clear care plan will help “others on the ground” i.e. support workers or nursing staff, to work collaboratively and efficiently, minimising inappropriate use of restraint and therefore minimising distress and injuries to both P and staff during the transition.

As the hearing went on, I remember shifting my attention to GNK. She lay there quietly on her hospital bed, and you could tell that she was listening intently to everything that was being said. I remember thinking about how she might feel about being discussed in great detail in front of numerous professionals as well as two observers that she had never set eyes on. At that moment, I felt a sense of guilt; I wondered if she was informed beforehand that we would be there, and if not, should she have been asked if she was happy with it before the hearing began. I felt like I would have been more comfortable in knowing that she was comfortable with us observing. 

Judge Reeder concluded that GNK should be discharged to a place where she can “live with comfort and where her needs can be met”. Before the final decision can be made, as well as detailed escalation triggers for physical restraint, Judge Reeder has asked GNK’s services to explore what needs to be done to consider the option of GNK moving back home, including contacting her wider family members to see if they are “willing to help with property clearance”. 

Although very patient, Judge Reeder was clear that more efforts were needed: 

Judge: It would be unfortunate that if nothing has been done, it was repossessed. What I am trying to say is that you need to tweak the order – urgent effort needs to go into contacting the landlord, finding out about the tenancy, finding out about arrears and the basis on which landlord has sought possession and whether they intend to proceed with that. It would be unfortunate if it [GNK’s home] disappears by default whilst we are dealing with case management. Please give that some thought. [Judge’s emphasis]

Judge Reeder asked to speak directly to GNK herself. 

Judge: There’s a suggestion, GNK that you and I speak in due course, prior to me making any decisions about where you should live in the longer term. Is there anything you want to say now to me now? 

GNK mentioned that she does not know what people were referring to by the condition of her flat, and that any issues with the flat was supposed to be sorted by the property owner. 

Judge: We will have a really good look at your home to see if it’s okay to go back there. This is a temporary move whilst we make decisions about going forward. 

Although it was brief, I was glad that the judge spoke directly to GNK, asking if she had anything to say to him. At first it made me wonder, with Huntington’s disease having an impact on cognitive skills, how well she was able to understand and follow the entire hearing. However, from GNK’s question about the condition of her flat, it was clear that she was at least able to grasp a rough idea of what was being discussed. I was relieved by this as I could not imagine what it would feel like to hear your name being brought up but not understand the details that were being discussed. 

Although it was a shame that we did not get to hear more about GNK as a person, I did find the case extremely interesting and exhilarating. Having worked in inpatient services, I enjoyed looking at mental capacity from another perspective. It sparked my interest in a person’s mental capacity and how such a complex concept can be assessed. It made me query the reliability of mental capacity assessments. I aim to further my knowledge on the area, and hope to observe a mental capacity assessment being completed.

Catalia Griffiths is an Assistant Psychologist, Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust. She is based with Claire Martin in the Older People’s Clinical Psychology Department, Gateshead.

Note: Quotations are based on contemporaneous notes and are as accurate as possible but unlikely to be completely verbatim, as audio-recording is not permitted.

Coercive and controlling behaviour continuing after brain injury: Matters of finance and contact

By Joanna Booth, 30th November 2022

The person at the centre of this case (PB) is a 65-old woman who had a brain haemorrhage in 2018. This was so severe that it left her with a lasting brain injury and significantly impaired cognitive functions and since leaving hospital she’s been looked after in a specialist care home. She’s been found to lack capacity to determine her own residence, care, and contact, and to conduct proceedings.

 At an earlier hearing, her husband (MB) had been found to exhibit a pattern of controlling and coercive behaviour towards her. This had been a pattern of their marriage before her brain injury, and continued after she was admitted to full-time care – along with his overbearing and aggressive behaviour towards the care home staff.

The hearing I observed (via MS Team) on Wednesday 23rd November 2022 (COP 13615665) before Sir Jonathan Cohen sitting in the Royal Courts of Justice was to consider (again) matters of contact between husband and wife, and also how her financial affairs should be managed.

PB was represented in this hearing (via the Official Solicitor) by Mary-Rachel McCabe of Doughty Street Chambers. The Health Board was represented by Benjamin Tankel of 39 Essex Chambers. The local authority was represented by Rebecca Jayne Blackwood and MB (PB’s husband) was represented by James Holmes of Garden Court Chambers. 

Background to the hearing

Since April 2019, when PB was discharged from hospital, she has lived in a specialist care home where she receives a significant package of care that she is likely to require for the rest of her life. She is subject to a standard authorisation depriving her of her liberty at the care home.

From the early days of P’s admission to hospital in 2018, safeguarding concerns have been raised in respect of her husband (MB’s) conduct towards her and there have been, throughout, significant concerns about his “combative approach” to the medical professionals involved in P’s care. 

On 5 February 2020 it was alleged that MB had inappropriately touched PB in a sexual manner.  Soon afterwards COVID-19 restrictions were imposed on contact with care home residents and from 3 April 2020 the decision was taken to restrict MB’s contact with PB to 2 video calls per week.

In June 2020 MB commenced proceedings seeking an order that it was in the best interests of his wife to return to the family home and reside with him and that the contact restrictions were not in her best interests.

There have been several hearings already in this case.  In April 2021, Francis J made an order that contact between  PB and her husband (MB) should be severely restricted.  He made an injunction prohibiting MB from having direct contact with P and from entering or approaching the care home and severely restricting communication with any care home staff.

The last hearing was in February 2022 before Sir Jonathan Cohen, and the judgment was published on 15 March 2022, as MB v PB & Ors [2022] EWCOP 14.

His judgment covers both the ‘fact finding’ element of the proceedings and also his decisions on best interests.

He found (§61 of the judgment)

i)                   That there was a pattern of controlling and coercive behaviour before P’s admission into full-time care.

ii)                 That there was a pattern of coercive and controlling behaviour that continued after her admission into full-time care.

iii)               That MB has a controlling and overbearing attitude towards the care staff. 

iv)               That MB has sought to interfere in the provision of care by his refusal to accept what professionals tell him and his insistence that he knows best about what care P should be receiving.

v)                  That MB has sought to limit and control the contact that P has had with other members of the family particularly her children and her sister.

vi)               That at times P has found contact with MB to be upsetting and unwelcome.  Equally at other times she has derived pleasure from it.

The judge found that “the single most important factor in this case is to maintain P’s position in the care home.  There is no other venue in Wales that is felt able to meet her needs. Nothing would be worse for her than for the home to feel that it could no longer keep her because of the pressures and disruption created by MB.  If the choice is between MB’s contact with P and the maintenance of the home, the latter must prevail” (§66).  

But he was “concerned that the loss or cessation of all contact between P and MB may not be in her best interests” (§67) and asked the parties to consider “a trial period of contact over a number of visits whereby P’s reaction to the resumption of contact could be assessed, along with MB’s ability to comply with the restrictions required and the contract of expectations which he must sign up to”.  (§69)

The judge said he would “hold a further hearing when the parties have had the opportunity to consider this judgment”.

That was the hearing I observed.

Hearing on 23rd November 2022

The Health Board’s position was that  two  key issues needed to be determined: (1) Property and Financial Affairs Does PB have  capacity to manage her own financial affairs? If not, what steps should be taken in respect of the management of PB’s finances; and (2) Contact between PB and her husband MB. I’ll address each in turn.

Issue 1: Property and financial affairs

PB’s husband believes that she has capacity to make her own decisions about property and finance.  The Health Board’s position is that she does not have capacity to do so. Due to this disagreement, the court directed the Health Board to obtain an independent assessment, which was now before the court. 

It was reported in court that the finding was that PB has limited abilities in relation to communication.  She can utter single words but not always in an understandable order. She has severe word-finding issues. 

She has trouble understanding where in time or place she is. She struggles with complex information. She can understand basic information about food choices or what clothes to wear. 

During her assessment she struggled with recall. She has severe memory problems. 

The clinical psychiatrist tried to discuss house and property issues with her. 

She couldn’t tell him why she was at the care home or how long she had been there. She was asked about when she’d last been to her home and she said four months ago. It had actually been four years previously. She was unable to say where she was or why she was there. She did not know how her care was paid for. 

The MCA sets out a 2-stage test of capacity: 

First: 

….  a person is unable to make a decision for himself if he is 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)

Second: A person can only be found to lack  capacity to make a decision if their inability to do so is “because of an impairment of, or a disturbance in the functioning of, the mind or brain” ( s.2(1) MCA)

The Health Board’s position is that PB is unable to make her own financial decisions .Due to her brain injury, she cannot understand or retain, use, and weigh the information she is given. She can communicate but her answers are so variable that they cannot be relied upon. 

Therefore, the Health Board’s position is that a deputy be assigned to PB, to manage her financial matters. 

Counsel for PB’s husband argued that a deputy is unnecessary because her husband is already her DWP-appointed appointee. The Mental Capacity Act code of practice, s.8.36 specified that when a person has benefits but no property or assets, then an appointee can be assigned to them, which is within the remit of the DWP.

The local authority lawyer, Rebecca Blackwood, stated that PB does have property. It was also relevant that in the Judge’s previous hearing, reported in March, MB was found to be coercive and controlling. It would therefore be entirely inappropriate for MB to be kept or put in control of PB’s finances, in line with that ruling. 

The judge went on to state that it was plain that MB would not be an appropriate deputy for a wide number of reasons. There is also a conflict of interest: the funds that PB receives for her PIP are mixed in with MB’s finances and used to pay for utilities and the mortgage for the house they jointly own. 

Also, said the judge, the court does not have the power to appoint appointees; that is only for the DWP. The court only has power to determine the appointment of deputies. 

There were also issues with MB’s current control of PB’s finances. At the previous hearing, in February 2022, the court ordered MB to provide some money (a ‘fund’ or ‘float’ of £200 for PB so that additional items could be provided without having to rely on communicating with him. This system of having to ask MB for every payment required for PB was seen to be at one extreme a continuation of the coercive and controlling behaviour towards his wife, and at the other, unwieldy. He did not provide this fund until October of this year, seven months later. 

Issue 2: Contact

PB has been in the nursing home for four years. While indirect contact (video-calls) had been organised with the nursing home, there was no direct contact face-to-face after an injunction had been issued against MB. 

The indirect contact between the couple was to be facilitated once a week by a nursing assessor provided by the Health Board. 

The nursing or caring staff at the nursing home could not be used to facilitate contact because the home had refused contact with MB after his abusive behaviour. 

MB also requested through his team that when virtual meeting could not be held, that they were rearranged so they could still happen. 

The Health Board said they would look into it but could not guarantee it.

The court was looking at facilitating direct contact in other ways. MB had requested a list of conditions to be met and if he could meet them, then he requested direct contact. The conditions included finding a suitable care agency that would be able, with Health board approval, to facilitate a meeting. 

The judge felt it was important to at least attempt direct face-to-face contact. He suggested it was very worrying that a wife and husband had been separated for a long time and could not see each other.

“It doesn’t seem right that contact is forbidden if a suitable nurse can be found,” said Sir Jonathan Cohen.

The Health Board representative pointed out that there were huge obstacles in the way and they were mostly due to MB. 

He said, if conditions can be met, there would still be residual concerns as to whether direct contact would be in PB’s best interests. 

The meeting would be better in the garden of the nursing home where if she is fatigued or if there are concerns, she can leave quickly. In the community, where MB wants the meeting to be held, this would not be as easy. 

Also, in the seven months since MB proposed the conditions to be met, he has not found or looked for a suitable care agency, and the Health Board have not been able to find one either. 

There would be lots of stresses for this type of package, which would consist of an hour or half an hour a month. The carer would not have the knowledge of PB to understand, perhaps, when she was showing signs of distress and needed to be removed from the meeting. 

The judge stated that he did not underestimate the difficulties to surmount the hurdles. But if the conditions can be met then some dates in March or later in the spring should be provided, where PB could be wrapped up in the garden on a sunny, dry day, for a meeting. 

If a deputy is appointed, and the thresholds are met, then the care agency costs would be decided by the deputy. 

A best interest declaration by the deputy would be required, claimed the Health Board.

The judge stated that contact would be a good use of funds. 

The Health Board stated that the nurse assessor used for the virtual meetings would be available indefinitely subject to resource. 

The judge asked whether the nurse assessor could be used for the direct contact.

The Health Board replied that they were not willing to make the nurse assessor available for direct contact. MB had been found to target members of staff with hostile behaviour. MB does not accept the findings of the previous hearing and insists that everyone is out to get him. The Health Board is not willing to expose the nurse assessor to his behaviour. 

Judgment

The judge found that PB does not have capacity to manage her own financial affairs and ordered that the local authority should appoint a panel deputy 

In relation to contact, if  MB can identify a suitable care agency, with Health Board approval, and if MB pays for it, then arrangements for contact will be made and a date found in spring, when there’s better weather, so that PB could meet with her husband MB in the garden of the nursing home. 

For indirect contact, if virtual meetings can’t take place at the assigned time, then the meeting will be reorganised for another possible time. 

There are no orders for these matters to come back to court unless circumstances change.

Joanna Booth is a freelance journalist who writes at joannab.substack.com. She studied law, politics, and social research methods, and worked for years as a social researcher in higher education organisations. She works as a journalist, and is studying towards a PhD by publication on local media and political participation. She tweets as @stillawake.