Dental Clearance with Post Intensive Care Syndrome: A Compassionate Decision by Hayden J

By Mary Neal, 13th July 2021

Over the course of three days last week, I observed a hearing (COP 13418695) before Mr Justice Hayden concerning the proposed medical treatment of a man in his thirties (‘M’) who lacks capacity to make his own medical decisions because of a constellation of complex needs including autism and a learning disability. M also has physical challenges: he has dysarthria and uses a light writer to help him communicate; he is registered blind; and he uses a wheelchair. M lives at home with his father, with other family members also closely involved in his life and care. During the hearing his family relationships, and the trust he has in his close relatives, were described as the ‘pillar on which his life is structured’.

M has a complex medical history and it was strongly suspected that he suffers from ‘Post Intensive Care Syndrome’, a particularly distressing form of Post-Traumatic Stress Disorder that can affect those who have been treated in the ICU (as M has been previously). M is strongly resistant to, and very distressed by, any attempted medical examination or intervention, however minor. He has refused to allow his teeth to be examined for four years, and is now in pain with broken and bleeding teeth, and restricted to a very limited soft diet.

This hearing arose because a hospital trust (represented by Emma Sutton) has applied for welfare orders under the Mental Capacity Act 2005 to permit them (i) to perform a full dental clearance on M in hospital under general anaesthetic, and (ii) to use a combination of chemical and physical restraint in order to manage M’s transfer to hospital. What was proposed was the covert administration of 10mg diazepam in M’s soft drink, and if necessary (the Trust hoped it wouldn’t be) the use of blankets, pillows, and possibly ‘soft holds’ to restrain M physically and enable the 30 minute journey from home to hospital. 

A declaration had been made at a previous hearing (before Mr Justice Williams on 27th May 2021) in accordance with s.15 of the Mental Capacity Act 2005 that M lacked capacity to decide whether or not to undergo the proposed treatment. Thus, the issue before the court was primarily whether or not the proposed clinical treatment was in M’s best interests.  

The other parties were M (represented by his litigation friend, Michael Horne QC, for the Official Solicitor), the City Council and Clinical Commissioning Group (represented by Natalie Levine) and M’s sister, Dr O, who is herself a doctor and was a litigant in person. All parties accepted that dental clearance was clinically necessary and in P’s best interests, and agreed that he would not submit to it without restraint.  The issue was what kind of clinical restraint should be used.

Although I have observed many other court processes, both in person and ‘live streamed’, this was the first time I’ve observed a hearing in the Court of Protection, and the first time I’ve  observed a fully remote hearing. Following instructions provided by Professor Celia  Kitzinger of the Open Justice Court of Protection Project, I requested and received a link which allowed me to join the hearing via Microsoft Teams; thus, I found myself logging on at 10.30 am on the first day with little idea of what to expect.

The hearing

The first thing that struck me was that the virtual format did not result in any lack of formality. Mr Justice Hayden was physically located in the Royal Courts of Justice, and it was emphasised to all present that ‘this is still very much a court’. Everyone was reminded of the usual restrictions on reporting and recording, and the usual procedural formalities were observed, with the court being told to ‘rise’ when the judge arrived: and a witness who referred to a barrister by her first name was gently reminded to use title and surname instead. Although the judge was always courteous and often warm (of which more later), his authority was very clear at all times. The virtual nature of the hearing made it easier to observe than a live stream of an in-person (or hybrid) hearing, in that the faces and expressions of participants were clearly visible and their words clearly audible to everyone on the platform. 

Also noteworthy was that, although Hayden J had been presented with welfare orders for his approval, and there was broad agreement between the parties, the judge had insisted on a full hearing because he felt he could not do the matter justice as a ‘paper exercise’. He was particularly concerned about the plan for restraining M (he indicated that he would be generally unlikely to approve a restraint order without a hearing), and about the fact that everything that was being planned – the restraint, and the subsequent treatment – would be done covertly (because it would be impossible to implement the plan if M knew about it). The court heard evidence from M’s sister, Dr O, that M (who she described as ‘my favourite person’) was ‘someone who thinks, someone who knows how he feels, and someone who has strong views’. The transfer to hospital, she said, was highly likely to require physical restraint if only diazepam was used. This, she said would be ‘hugely distressing’ for M, and presumably also for the family members who would have to assist in it.

These factors clearly weighed very heavily with Hayden J during the three days of the hearing. He asked early on why the balance in the plan was in favour of physical rather than chemical restraint, and, clearly not satisfied that this was justified, conducted a thorough investigation of the options. A major concern was the sense M might have of having been ‘betrayed’ by those he loves most and ‘who have contrived to bring this about against his will and without his knowledge’. There was clear potential for serious damage to the key relationships of trust that are fundamental to M’s happiness and sense of self. Hayden J summarised the best interests assessment in this case as a matter of balancing a small risk of something very serious (the risks associated with deeper sedation, including aspiration pneumonia and a return to ICU) against a bigger risk of other kinds of harm (physical restraint, distress, and erosion of trust).

With Hayden J having made clear his uneasiness about approving an order that allowed for a high degree of physical restraint, Day 2 centred on discussion of what form of chemical restraint was in M’s best interests. The Trust’s plan envisaged the use of diazepam in combination with physical modes of restraint. Although they recognised that Dr O (his sister) had an alternative view, the Trust’s position was that it could be considered ‘micromanaging’ for the court to become involved with the type of chemical restraint required, and that – in any event – a doctor cannot be forced by the court to prescribe something that is not considered clinically indicated/appropriate.  The Official Solicitor accepted that midazolam was not an ‘available option’.  This issue – the type of chemical restraint to be used in the community – was the only difference between the parties.

Hayden J was ‘extremely anxious’ that M may need significant physical restraint, and feel betrayed by the involvement of those he loves most in a very distressing experience. He was keen to explore the possibility of using midazolam, having heard during Day 1 that M had tolerated it without difficulty on numerous occasions in the past. The particular attraction of midazolam was that it has a ‘retrograde amnesiac effect’ such that M would be less likely to remember being transferred to hospital, or the role of his close family members in that process, thus preserving his trust in them. Hayden J saw the retrograde amnesiac effect of midazolam as a ‘very significant welfare advantage’, so was keen to hear further expert evidence on whether it would be medically safe for M.

It emerged that midazolam had only ever been administered to M in hospital settings, not in the community (as would be the case here). Because midazolam provides deeper sedation that might suppress M’s breathing, the Trust did not, at this stage, consider its use to be in M’s best interests. The Official Solicitor considered that, on balance, midazolam was in M’s best interests if (and only if) safe transfer to hospital was available (i.e. transfer by ambulance with paramedics trained to monitor M in transit). At this stage, we were told (i) that such transfer was not available, and (ii) that the GP was unwilling to prescribe midazolam to be administered in the community.

A crucial moment in the hearing came during Day 2 when several experts had been giving evidence on the respective effects of diazepam and midazolam. The evidence seemed speculative and possibly contradictory, and it was unclear whether a higher dose of diazepam – which could be administered safely in M’s home – might also achieve the desired retrograde amnesiac effect, negating the need to consider midazolam. Hayden J cut through this uncertainty and lack of clarity by posing a carefully-calibrated question to the consultant psychiatrist, asking: “If you wanted to achieve a retrograde amnesiac effect, which medicine would you use?” The answer was clear: midazolam. This allowed the focus of the enquiry to shift to how the risks of administering midazolam in the community could be mitigated. This brief but watershed moment impressed on me the transformative benefit of a judge who is clear-sighted in the face of unclear expert evidence, and able to formulate the right question at the right time.

When the hearing began again on Day 3, we learned that the Trust had changed its position, and now agreed that midazolam was in M’s best interests. The rationale for the change was that the Trust, while regarding the question of best interests as ‘finely balanced’, now recognised the need to ‘protect key relationships of trust’, and that the issue of M’s trust in his family was ‘absolutely paramount’.  The Clinical Commissioning Group had sourced ambulance transport with trained paramedics, and the GP was content to prescribe midazolam to be administered to M at home. Thus, the Trust was now seeking approval for a different plan, in which restraint would be primarily chemical rather than physical, and M would have no memory of the transfer to hospital, leaving his key relationships of trust intact. Hayden J made the order accordingly.

Reflections

Having read many of his judgments, and having heard him speak extra-judicially, I wasn’t surprised to find myself impressed by Hayden J’s judicial skill. He had identified that a hearing was necessary (where someone else might have approved the plans on paper); summarised the heart of the best interests calculation; formulated the question that cut through evidentiary confusion and made the way ahead clear; and made effective use of the technique of ‘hot tubbing’ (the practice of examining witnesses concurrently). He also showed professional consideration in making his thinking clear to the parties throughout the process, reflecting that, during his own time at the bar, he had preferred it when judges let counsel in on their thinking, rather than surprising them with their conclusions at the end of the process. 

I also found myself very struck by the compassion Hayden J brought to proceedings over the three days. This was apparent in the meticulous care he took to determine M’s best interests and ensure that they were met, and also in the supportive atmosphere he created for all of those involved in the hearing. He went out of his way to be gracious to the expert witnesses, thanking them for their time, and asking them to convey his apologies to their patients because the time taken to give evidence had taken them away from their clinical practice. He ensured that everyone had ample time to take a lunch break, and that counsel had adequate time between sessions to consult with their witnesses and anyone else they may need to confer with, and to prepare any new or amended submissions following those enquiries. He commended parties when they changed their positions, saying that this was ‘a mark of strength and not a mark of weakness,’ and he modelled humility when he noted that ‘we’ve all got something to learn from this [process]’. 

Perhaps the most heartening moment of all was when Hayden J ended the final day of the hearing by asking to be updated on ‘how it all goes’. I came away from the experience reassured that, when led by a judge who clearly caresabout the people whose interests he is charged with protecting, Court of Protection proceedings can work very well. 

Mary Neal is Reader in Law at the University of Strathclyde. She tweets @maryfordneal

Capacity to Engage in Sexual Relations: A forthcoming Supreme Court hearing

By Charlotte Roscoe and Celia Kitzinger, 9th July 2021

Editorial Note: This blog post concerns a case in the Supreme Court. The Open Justice Court of Protection Project normally covers only cases in the Court of Protection. We have made an exception in this case (as we have before, for cases in the Court of Appeal, e.g. here) because it originated in the Court of Protection and will impact upon future judgments in the Court of Protection.

The image is taken from the website for the Supreme Court hearing listed for 15th July 2021, before Lord Briggs, Lady Arden, Lord Burrows, Lord Stephens and Lady Rose. (There are biographies of the judges here.)

The person at the centre of the case is a man in his 30s, JB, who lives with autism and impaired cognition.  He has a history of “behaving in a sexually inappropriate manner towards women” and he “lacks the insight or ability to communicate appropriately with women to whom he is attracted”.  In particular, there is a question about his capacity to understand that a sexual partner must consent to a sexual act, and continue to consent throughout.

The question before the court is whether an inability to understand that a sexual partner must give consent means that a person lacks capacity to engage in sexual relations.  

In the Court of Protection, on 17th September 2019,  Mrs Justice Roberts ruled that JB does have capacity to consent to sexual relations, and did not consider that understanding the need for consent from the other person was a necessary part of capacity.

On 11th June 2020, the Court of Appeal overturned that judgment.

The case is now before the Supreme Court.  

This blog post is intended as a briefing note for members of the public interested in learning more about this case and perhaps observing it for themselves.  

The Supreme Court

The Supreme Court is the final court of appeal in the UK for civil cases (and for criminal cases from England, Wales and Northern Ireland). 

Permission can be given to appeal against a decision in lower courts, including the Court of Protection (normally after a hearing in the Court of Appeal) if there is “a real prospect of success” in arguing that the earlier decision was “incorrect, or suffered from a serious procedural error or irregularity” or “some other compelling reason why the appeal should be heard” (Civil Procedure Rules 1998). 

The home of the Supreme Court is Middlesex Guildhall, a Grade II listed building in an art nouveau Gothic style, on the South West corner of Parliament Square in Westminster, directly opposite the Houses of Parliament.  It was controversially converted to house the Supreme Court for its relocation on 1st October 2009 – “a defining moment in the constitutional history of the United Kingdom with the separation of judicial power from its historic home in the nation’s legislature, the Houses of Parliament, and its transfer to the Supreme Court’s own building”.  There is lots of information about the history and role of the Supreme Court on its website

Currently, the building remains closed to the public due to the pandemic.  Parties to this case will be admitted to the physical courtroom where the hearing will take place. It will be live-streamed and available as a recording to watch afterwards  (as are many hearings in the Supreme Court).   To observe it you will need to go to the “Watch Supreme Court Live” page on the Supreme Courts website.  The hearing is listed for a full day – probably starting at 10am or 10.30am and running until 4.30pm (with a lunch break 1-2pm).

Background

As a consequence of his autism and impaired cognition and related problems, JB has lived in a supported living placement for the last 7 years. He has a comprehensive care package in place which restricts his ability to live independently. Under his care plan, he is supported 1:1 in the community, particularly when in the company of women, and has further restrictions on his contact with others and his access to social media and the internet. These restrictions have been imposed predominantly due to his tendency to behave inappropriately towards women. 

JB’s main desire for many years has been to have a girlfriend with whom he can develop a relationship and engage in sexual relations. In order to achieve this aspiration, he wishes to have time in the community without his 1:1 support, to have freedom to go on dates and also to have unsupervised access to the internet. However, because of his behaviour, which has reportedly included JB becoming fixated on particular women, contacting them via messages and making inappropriate and sexualised advances, JB has been prohibited from taking part in this range of activities. It should be noted that JB has not been convicted of any criminal offences, although an allegation of assault was made but not pursued by the police.  There is, however, a concern that his behaviours may result in a criminal conviction if left unrestricted.

One clinical psychologist reported that JB was at moderate risk of sexual offending by “sexually touching … without consent”. She said that “in terms of vulnerable women who do not have the capacity to consent to sexual relations, there is a risk of [JB] not recognising or respecting this fact, resulting in the potential for rape to occur.”  Another  clinical psychologist (quoted in the Court of Appeal judgment at para. 14 here), said that JB understands the mechanics of sexual acts and the risks of pregnancy and sexually-transmitted disease, but his “understanding of consent is lacking“. When asked, JB defined consent as “one party allowing the other party to have sex without the other party complaining“. The judgment reports what JB said when asked about withdrawing consent:

The psychologist concluded “there was a high risk that [JB] would commit a sexual assault in pursuit of a sexual relationship” (para 15.).

Capacity to engage in sex

Capacity to consent to sex is something the Court of Protection has ruled on many times before.  The Open Justice Court of Protection Project has blogged about some previous cases.  These include one concerning a woman with dementia who formed a romantic relationship with a man in the care home she resided in. She was found by a court-appointed expert first not to have capacity to consent to or engage in sexual relations (here) but then subsequently, by a new expert, to have that capacity (here).  

Under s.3 Mental Capacity Act 2005 a person lacks capacity if, because of an impairment or disorder in the functioning of their mind or brain, they are unable to (a) 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 communicatetheir decision. 

In the case of B v A Local Authority [2019],  Lord Justice Cobb confirmed  (just 3 months before Mrs Justice Roberts heard the JB case in the Court of Protection), that the relevant information in relation to capacity to consent to sexual relations includes:

Court of Protection

When the case of JB came before Tier 3 judge, Mrs Justice Roberts, in the Court of Protection, she was asked to consider a single issue: ‘does the information relevant to the decision [to consent to sexual activity] include the fact that the other person engaged in sexual activity must be able to, and does, consent to such activity?’ 

Mr Vikram Sachdeva, on behalf of the local authority, argued that  information relevant to the capacity to consent  to sex should include an understanding of the  fact that the other party must and does consent to the sexual act, in part because, for those with learning disabilities like JB, understanding this is key to protecting them from committing a criminal offence.

Mr Parishil Patel, on behalf of the Official Solicitor acting for JB, argued that the local authority’s attempt to expand the test for capacity to consent to sexual activity is an attempt to incorporate a requirement that those who pose a risk of sexual offending must have a sufficient understanding of criminal law. Mr Patel stated that the Mental Capacity Act 2005 should not be used to avoid the risk of criminal offending. Mr Patel further argued that adding this element of consent into the “relevant information” raises the bar from a deliberately low level which has been set in order to avoid discrimination against vulnerable adults, who should be entitled to exercise one of the most basic human functions.

Mrs Justice Roberts concluded that if issues regarding consent were difficult for capacitous people to grasp, then great care should be taken before imposing a requirement to understand the concept of consent on those who are potentially incapacitous. She stated that to include  in the “relevant information” an understanding of consent sets the bar too high.  The judge did not accept it as appropriate to potentially deprive those without capacity of a fundamental and basic human right merely because raising the bar for capacity might provide protection for P or for a victim of non-consensual sex. 

She said; 

To require him to demonstrate as an aspect of his fundamental capacity in this context a full appreciation of both his own and a partner’s initial and ongoing consent throughout the course of that sexual activity would be to impose on him a burden which a capacitous individual may not share and may well be unlikely to discharge. It is true that knowledge of the absence of consent might expose either to the risk of criminal prosecution but in both cases each is entitled to make the same mistakes which all human beings can, and do, make in the course of a lifetime. (A Local Authority v JB [2019] EWCOP 39)

Mrs Justice Roberts further concluded that it is not part of the function of the Court of Protection to seek to exclude P from future harm or exposure to the criminal law. 

The judge held that:

For the purposes of determining the fundamental capacity of an individual in relation to sexual relations, the information relevant to the decision for the purposes of section 3(1) of the MCA 2005 does not include information that, absent consent of a sexual partner, attempting sexual relations with another person is liable to breach the criminal law (para. 87, A Local Authority v JB [2019] EWCOP 39)

The case proceeded to a subsequent hearing at which Mrs Justice Roberts made final declarations as to JB’s capacity in the other areas identified in the proceedings and declarations that his care plan, which included provision for close supervision in the community and education to improve his social awareness to mitigate risks posed to others, was in his best interests. 

Court of Appeal

The Court of Appeal (Lord Justice Baker, Sir Andrew McFarlane and Lord Justice Singh) disagreed with Mrs Justice Roberts’ ruling in the Court of Protection.  The judgment is here: A Local Authority v JB [2020] EWCA Civ 735

Lord Justice Baker began his judgment by stating that in order to consider the question of capacity to decide to engage in  sexual relations they had to balance three fundamental principles: 

  1. The principle of autonomy. 
  2. All vulnerable people in society must be protected.
  3. The Mental Capacity Act and the Court of Protection do not exist in a vacuum; it is concerned first and foremost with the individual however it must adhere to general principles of law. 

Mr Vikram Sachdeva, on behalf of the local authority, submitted that the relevant information regarding the nature and character of the sexual act includes the fundamental characteristic that it is a mutual act which requires consent of both parties. Mr Sachdeva submitted that a fundamental aspect of sex is consent and that including this in information relevant to the decision is not discriminatory against people who lack capacity because whether the other person is consenting is a strong and determinative factor in a decision made by a person with capacity. Thirdly, the local authority argued that a person who lacks capacity to understand that consent is required should be protected from being placed in a situation where they could inadvertently commit a serious sexual offence. It was further submitted that including the other person’s consent as relevant information does not raise the bar too high and it should not be seen as a more difficult concept than, for example, the potential to fall pregnant. 

Mr Patel and Mr Ian Brownhill on behalf of JB submitted that capacity to consent to sexual relations should be assessed on a general and non-specific basis; information relevant to the decision should be kept at a relatively low level reflecting the simple and fundamental nature of the act.  Decision-making in consenting to sexual relations is, they said,  largely visceral rather than cerebral owing more to instinct and emotion than analysis; issues of capacity are different in criminal and civil law and that there is tension between the potential for exploitation of the vulnerable and P’s right to a sexual life. Mr Patel further argued that consideration of whether someone is consenting would turn the test from being act-specific to person-specific and it would add complexity to a test which needs to be kept simple. He further submitted that it would run contrary to the focus of the Mental Capacity Act 2005, which is to empower P and encourage autonomous decision-making. 

Lord Justice Baker summarised that the capacity in issue in this case was in relation to JB’s capacity to decide to engagein sexual relations rather than capacity to consent. 

The analysis of capacity with regard to sexual relations in the case law has hitherto been framed almost exclusively in terms of the capacity to consent to sexual relations. But as this case illustrates, giving consent to sexual relations is only part of the decision-making process. The fundamental decision is whether to engage in sexual relations. (para 92)

The word “consent” implies agreeing to sexual relations proposed by someone else. But in the present case, it is JB who wishes to initiate sexual relations with women. The capacity in issue in the present case is therefore JB’s capacity to decide to engage in sexual relations. In my judgment, this is how the question of capacity with regard to sexual relations should normally be assessed in most cases. (93)

He concluded that information relevant to the decision inevitably includes the fact that any person with whom P engages in sexual activity must be able to consent to such activity and must in fact consent,  as sexual relations between human beings are mutually consensual. A person who does not understand that sexual relations must only take place when the other person is consenting is unable to understand a fundamental part of the information relevant to the decision.

 Lord Justice Baker accepts that the test for capacity with regards to sexual relations needs to be as straightforward as possible but he states that that cannot justify excluding information which is clearly relevant to the decision. He further states that it is a responsibility of the Court of Protection to protect P from harm so such a matter cannot be left to the criminal justice system alone. Lord Justice Baker does not agree that including this aspect in the relevant information is discriminatory as it is a restriction which applies to all regardless of capacity and that we all accept restrictions on our autonomy which are necessary for the protection of others. 

There were three reasons for setting aside the judgment by Mrs Justice Roberts.

This decision by the Court of Appeal – that an understanding of consent from a sexual partner is necessary for a person to be deemed to have capacity to engage in sexual relations – is the ruling that JB (via his litigation friend the Official Solicitor) has appealed to the Supreme Court.

Why it matters

As was acknowledged in the Court of Appeal judgment, the issue of capacity to engage in sex “is of great importance to people with learning disabilities or acquired disorders of the brain or mind” (para. 3). As things now stand, since the Court of Appeal judgment,  capacity to engage in sex does require an understanding that the other person must have the capacity to consent, and does in fact consent, before and throughout the sexual activity.

This decision has been widely discussed, with commentators divided as to whether (as David Lock QC says) it is “sensible, balanced and should be welcomed by those acting in this difficult area” or whether it unfairly raises the bar for people with impairments in the functioning of the mind or brain who want to engage in sexual activity.  Some commentators are very concerned – like barrister Sophy Miles who analyses a subsequent case (Re HD) that was decided with reference to Re JB, and worries that there may be those “who may have previously enjoyed sexual relationships who now find themselves on the ‘other side’ of the capacity test and are expected to leave this aspect of their lives behind”.  

Feminist researchers have previously argued that “the approach under the Mental Capacity Act 2005 fails to place appropriate focus on consent as central to understanding sexual capacity” (Lindsey & Harding 2021) and have commented that “requiring an understanding of mutual consensuality is a crucial step in the right direction to ensure an added layer of protection, particularly for vulnerable women” (Subhi, 2021)   And from a social work perspective Lorraine Currie comments that the Court of Appeal decision in “makes it more challenging, but it makes it more real”.

If we are preparing young people for the ‘real world’ then consent of partners is part of that world. It says to me that we are actually considering that people may engage in sexual relationships and so must be prepared to think through what’s involved. That it is now more than the physical possibility of pregnancy and sexually transmitted infections, it is about the possibility that the other person may say ‘no’ or they may say ‘stop’. This has to be a good thing.” ( Lorraine Currie, Capacity, Consent and Sexual Relations: How latest case may help social workers navigate challenges, 17 June 2020, Community Care)

There’s also a fascinating video-discussion about the JB case (and other cases involving capacity for sex) between Nicola Kohn and Victoria Butler-Cole QC – the latter of whom points out the “peculiar” fact that the case in the Court of Appeal was “argued entirely by men and heard entirely by men –  not a single woman appeared, sadly, at any point in the Court of Appeal process, either as counsel or in terms of the judges”.   Victoria Butler-Cole also points to a gulf between the way in which professionals “on the ground” (psychologists, psychiatrists, speech and language therapists) have approached these questions in carrying out capacity assessments, and the “abstract” approach mandated by the court thus far, and speculates that the Court of Appeal judgment “will probably make more sense” to people working with those with mental disabilities whereas “previously there’s perhaps been more of a disconnect between the law and the way in which things are done on the ground”.   

Listening to this half-hour video-discussion would be really useful additional background for anyone intending to observe the Supreme Court hearing, or simply wanting to learn more about issues relating to capacity to engage in sex.

Note: Given the importance of this case to people with learning disabilities and cognitive impairments, the Open Justice Court of Protection Project has asked the Supreme Court to produce an “Easy Read” introduction to the issues, and we understand this will be produced before the hearing. We will link to it from here.

Charlotte Roscoe is a paralegal in the Public Law and Human Rights Department at Irwin Mitchell in Newcastle She has worked at Irwin Mitchell for nearly 5 years and works in areas such as mental capacity, judicial review and education law. She tweets @charlie_roscoe

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

Controlling and coercive behaviour: A hearing before Roberts J

By Celia Kitzinger, UPDATED 12th July 2021 to report on 3rd day of hearing (scroll down for new material)

This blog was originally written as a briefing note to assist anyone wanting to observe the hearing over the course of the 3 days..  It was a hybrid hearing, and members of the public were able to observe via the Cloud Video Platform link.   [Note: The blog post of 7th July was removed from the site at around 9.30am on the morning of its publication and reinstated around 2 hours later with revisions as required by revised (in my view, retrospective) reporting restrictions approved by the Court. I subsequently challenged these revised reporting restrictions and this issue will be the subject of a later blog post.)

This case before Mrs Justice Roberts, (COP 13503831 heard on 6th – 8th July 2021) concerns coercive control.  

Evidence from an expert psychologist appointed by the court, Professor Dubrow-Marshall, is that NC has formed a coercive and controlling relationship with BU, the protected person at the centre of the case.

In a counselling journal (pdf here), Professor Dubrow-Marshall has described controlling and coercive behaviour as involving (for example)  “isolating a person from their friends and family”, “monitoring their time” and “taking control over aspects of their everyday life, such as where they can go, who they can see and when they can sleep.” 

Controlling or coercive behaviour in an intimate or family relationship is an offence under s. 76 of the Serious Crime Act 2015.  The Statutory Guidance Framework describes it like this:

There’s a useful podcast by LawPodUK concerned with the issue of domestic abuse and coercive and controlling behaviour in the Family Courts here.

Issues in this case

The applicant in this case is BU’s daughter (represented by Parishil Patel QC and Ian Brownhill).   She is asking the court to:

  • make a declaration under s. 15 MCA 2005 that her mother lacks capacity to make decisions as to her contact with others 
  • make an order under s.16 MCA 2005 preventing NC from having contact with her mother and 
  • make an order (under the inherent jurisdiction) that no marriage or civil partnership should be permitted between her mother and NC – or, alternatively, a forced marriage protection order in those terms.  

The other parties are BU herself (represented by Bridget Dolan QC via her litigation friend, the Official Solicitor), NC (as a litigant in person), and the local authority (represented by Laura Twist).  

The age of BU is protected by the revised reporting restrictions “other than to say she is over 60“.  At a previous hearing (in November 2020) a final declaration was made that she lacks capacity to make decisions about her property and financial affairs.  A professional Deputy was appointed to manage her significant estate – the revised reporting restriction prevents me from reporting even “the approximate value of BU’s estate or its source“.

These earlier court hearings were prompted by some very serious concerns about the behaviour of NC who had moved into BU’s home a year or so earlier. In Spring 2020, the police became involved as a number of banks and building societies reported concerns in relation to activities on BU’s accounts. Some of BU’s funds are now missing and others have been used to buy items (which the revised reporting restrictions prevent me from describing) that are in NC’s name.

NC was arrested, interviewed under caution and released with bail conditions not to contact BU or enter the street on which she lives.

In the past, NC has been convicted of more than twenty offences, mostly relating to fraud and theft. His most recent conviction was in 2002 when he was sentenced to 9 years imprisonment.

BU has a life-long learning disability (not formally diagnosed) and recent arterial disease of the brain.  This affects her decision-making capacity in many domains, including managing her finances, but all parties agree that she has the mental capacity to decide where to live, what care to receive and, most significantly, she has capacity to decide whether to marry or have a civil partnership.

NC states that he is in a romantic relationship with BU and that he wants to enter into a civil partnership with her.  

BU is very angry about the interference in her life – by her family and by the courts.  

Because of the bail conditions imposed by the criminal court against NC she has been separated from him for a year, and is “desperately sad and most likely depressed” at being prevented from seeing him. She is angry about her family’s attempts to separate her from NC, and said that her “world collapsed” when she was prevented from seeing him.  She wants to get her life back – including managing her own finances, living with NC, and forming a civil partnership with him.

The judge heard from BU in private at the outset of the hearing.

Protection vs. Autonomy

The Official Solicitor has reserved her position on where BU’s best interests lie until the oral evidence has been heard.  She wishes to emphasise “the importance of respecting the autonomy and self-determination of BU in so far as this is commensurate with the need to protect her and to safeguard her interests”.  

The Official Solicitor acknowledges that the evidence overwhelmingly supports the view that NC is “a confidence trickster whose long-term lifestyle appears to have involved repeatedly inveigling money from vulnerable people through coercive control and, at least on three occasions, blackmail”.   Nonetheless, she considers that BU’s views should be relayed as clearly as possible to the court and the emotional consequences of her wish to live with NC being overridden should be properly considered. There is also a possibility (raised by Professor Dubrow-Marshall ) that BU and NC could be educated and counselled to better appreciate the coercive influence and power dynamics in their relationship and recast their relationship with those elements removed. 

It is particularly significant that BU has been assessed as having the capacity to marry or form a civil partnership: for a judge to prevent any such union under these circumstances would be a draconian move and a profound interference with BU’s Article 8 right to respect for family life and Article 12 right to marry.  The Official Solicitor points out that this would be “a significant step that requires the most compelling of justifications to be considered proportionate and lawful”. 

6th July 2021

On the first day of the hearing, Parishil Patel QC presented a very useful opening summary of the case.  

A Consultant in Old Age Psychiatry gave evidence about BU’s cognitive functioning and confirmed that she lacks capacity to make her own decisions about her finances and about contact – but that she does have capacity to marry or to form a civil partnership.  

Then Professor Dubrow-Marshall gave evidence about BU’s “total reliance and dedication” to NC, which he described as “a trauma bond”, or “trauma-coerced attachment”. He said, however, that there is “a genuine bond of love and affection between them” and suggested that NC was “less than fully aware of the effect of his behaviour – like the boisterous kid in the playground who doesn’t know his own strength“. According to this witness, NC is more “negligent” than acting “with malice aforethought” and “needs to be more reflective about his influence“. This analysis is disputed by BU’s daughter who believes that NC intends to coerce and control and unduly influence her mother.

There will be further evidence from Professor Dubrow-Marshall on 7th July 2021, and evidence from lay witnesses. The plan is for closing submissions on the morning of 8th July 2021. I understand that judgment is likely to be reserved.

7th July 2021

After some “kerfuffle” about the transparency order (more on this later), the court continued to hear from witnesses.

Expert psychologist

Professor Dubrow-Marshall (whose evidence in chief was given yesterday) was cross examined on his evidence that NC is coercively controlling and exerting undue influence on BU. He talked about the “unhealthily dependent nature of the relationship”, saying,  “he is her entire world… she is psychologically entirely bound up with him”.  This means that BU: 

 “… believes she’s making these decisions willingly but they are in reality part of the trauma-attachment and she cannot make authentic decisions independently of him.  Her true wishes are impossible to distinguish from NC’s”.  

Nonetheless, Professor Dubrow-Marshall reported that NC and BU have “a genuinely intimate relationship that does involve a very close bond”.  His assessment is that “NC is not cognizant, largely, of his influence on BU”.  

Professor Dubrow-Marshall reiterated his view that counselling and psycho-education should be attempted (with both NC and BU) to support them in an effort to rebuild their relationship, without the elements of coercion and control.  He was not optimistic about the success of this endeavour, describing it as: “a task as herculean as demolishing and rebuilding a house brick by brick”. 

He also recommended therapy should involve BU’s family.  At this point BU could be seen onscreen vigorously indicating her rejection of this idea.

Finance Deputy

The next witness called was the Finance Deputy, who reported some financial issues concerning the timeline at which NC had become more closely involved with BU and said that she did not accept that NC’s undue influence and moving in with BU at the time when he did was “coincidental”. 

BU’s daughter

BU’s daughter was asked about how she first became concerned about NU’s involvement in her mother’s life and talked about early financial concerns, and NU moving in to her mother’s house.  Anxious about what was going on, she had looked on the internet for information about BU’s business and found a Facebook group with complaints from customers.  This led her to speak to four other women who’d been “preyed upon” by NU.  A google search uncovered an incident when NC “went into a bank with a fake explosive strapped to him,  so I was able to find a newspaper article about that.  I was very concerned to find this type of person was in my mum’s house”.

She made it abundantly clear that she (and her sister) had previously had a very close relationship with BU.  

Counsel for the daughter, Parishil Patel,  read out the report of the social worker:  

BU appears to have completely turned against her family. Relationships are being destroyed because BU does not understand that her family are trying to protect her but feel that they are trying to control her and ruin her life”.

Because NC was a litigant in person, he was able to cross-examine BU’s daughter – which was a very uncomfortable experience to watch.  He seemed very calm, controlled and unemotional (and – to me – rather menacing).  It was often hard to understand where his questions were headed.   He seemed not to have any idea of how BU’s daughter had experienced his involvement in her mother’s life.  Counsel for the daughter intervened at various points where his questions were inappropriate.  

NC

Counsel for the daughter opened the questioning by asking NC whether he accepted Professor Dubrow-Marshall’s assessment that he was coercing and controlling BU and subjecting her to undue influence.  He replied that there was “a lot to take in” and that he needed to “think about it”.  When the judge intervened to push him on this, asking whether there as a possibility in his view that Professor Dubrow-Marshall may be right, he conceded that “the Professor may be right”.

However, he continued to maintain that BU was being controlled and coerced by her own family, who were trying to get control over her money. 

Asked again about the issue of the coercive control he allegedly exerts over BU, he said: “It’s a catch 22.  If I accept coercive control it’s a first step forward to seeing  BU again, but I don’t accept that I am doing that”. The judge said, “I am going to treat that as a retraction of your earlier evidence”. 

He denied allegations of wrong-doing in relation to other women – including those contacted by BU’s daughter, saying that this was “a collective accusation and a false accusation”.

Patel:  Are you saying that all these complaints were coordinated and 

            there was a sort of conspiracy to get you?

NC:      Oh god, yes.

Patel:  Oh you are?

NC:      Yes.

He projected (from my perspective) an impression of someone who felt aggrieved and misunderstood – a victim of conspiracy.  It was hard to know whether or not he actually believes this.

He acknowledged that he had breached the court order (and the police bail conditions) on multiple occasions by contacting BU. He also confirmed that he intended in the future to marry or to form a civil partnership with her. 

8th July 2021

On this final day of the hearing, all four parties (BU’s daughter, NC, the local authority and the Official Solicitor) presented closing submissions.

Counsel for BU’s daughter (Parishil Patel QC)

Speaking for BU’s daughter, Parishil Patel QC  said that she had brought the proceedings to prevent the continuing exploitation and manipulation of her mother.  He invited the court to find, on the balance of probability, that NC was deliberately coercing and controlling BU and unduly influencing her.  

There’s a plethora of evidence” said Parishil Patel, “that NC is a man who, over a number of years, has shown a particular modus operandi in which he befriends vulnerable people, gains their trust, and then exploits them financially”. 

He described NC’s evidence as the “wholly incredible” and “evasive” evidence of “a fantasist”.

The overall tenor of his evidence was that there was a conspiracy by a number of very disparate people, all of whom had got together, all of whom, on his evidence, were lying, with a common goal to discredit him.  But rather than this being evidence of a conspiracy, our submission is that this was evidence of his modus operandi of targeting vulnerable people.”

Following the evidence from the Consultant in Old Age Psychiatry (who gave oral evidence in court on 7th July 2021), BU’s daughter asks for a final declaration that NC lacks capacity to make decisions as to contact with others.  This position had been previously accepted by the Official Solicitor, the local authority and BU’s daughter, but not by NC – who has now had the opportunity to cross-examine the Consultant.

It’s very clear from the attendance note (when the judge met privately with BU) that BU does want to have contact with NC, but this (said Parishil Patel) accords with evidence from Professor Dubrow-Marshall that “her wishes cannot be disentangled from his – that her being has been subsumed entirely into his”.  He said that the court:

“… should place very little weight on BU’s present wishes as they don’t accord with her past wishes which, in accordance with s.4 of the Mental Capacity Act the court has to take into account.  The evidence of BU’s daughter is that her mother wouldn’t even countenance someone who got themselves into trouble, let alone someone with the criminal history NC has.  Nor would she voluntarily get herself into a position where she lost contact with her two daughters…”

The injunction against NC’s contact with BU should stay in place.  However, bearing in mind the “casual way in which NC breached that order on 40 occasions between July and August last year” it is apparent that he is “quite unable to see the seriousness of breaching the order”.  There is a risk that NC will breach it again, and either marry or enter into a civil partnership with BU.  This could be prevented either under the inherent jurisdiction or via a forced marriage protection order. BU’s daughter asks for an order to prevent marriage and civil partnership with BU under section 63A of the Family Law Act 1996.

NC (litigant in person)

As he has been over the last two days of this hearing, NC was an articulate and fluent speaker who had clearly prepared carefully for what he wanted the court to hear.  He said some “key words” had been mentioned in Professor Dubrow-Marshall’s evidence.  

The professor said that BU was lost in a totalisation state – that she’d been taken over by me”.  He read out some dictionary definitions of “totalitarian”, including this one from dictionary.com

These words were being used as a description of BU’s position”, he said.  The judge intervened:  “I think rather more-“  and NC interrupted to complete her sentence: “… of my behaviour”.

This is not the case at all”, said NC.  “BU has always and with some degree of certainty exercised her own will”.  He went on to describe how he has “facilitated” BU’s decisions, but “BU has been the first to decide and the last to decide on all the decisions to be made. I just helped her.”  He said that the couple had been “tested through the time of adversity and though we are hurt we are not fallen”.  

The words “trauma-bond” (also used repeatedly in Professor Dubrow-Marshall’s evidence) is “definitely not the case in my life with BU”.  

Judge:  So you don’t recognise the Professor’s description?

NC:       I recognise the description, but it’s not happening in our lives.  

His explanation as to why BU was not answering questions about why she wanted to spend time with him was that she was protecting her privacy.

NC:          She’s an extremely private individual with regards to her health, her finances, her home, her relationships and her family.  And because of the arrest, and the investigations into her finances, her health and her mental well-being, all the facets of her personality and home life are being forensically scrutinised.  She’s purposely not going into depth describing our relationship – which she’s perfectly able to – because that is the last bastion that is hers, that is private.  She’s purposely not answering questions because it’s special to her, and she’s protective of that.

Judge:   And you say that’s the reason for the superficiality of her answers.

NC:        Yes. She’s protecting something private and personal.

He ended by offering a public apology to BU. He said he was sorry that her involvement with him (“my personality and my offending history”) had resulted in this invasion of her privacy:  “I’m sorry your house got raided by the police.  I’m sorry everyone is saying you don’t know your own mind

The local authority (Laura Twist)

The local authority reiterated that they had “limited involvement” in this case.  They “understand the concerns and think appointment of the Deputy and the bail conditions mean that any risks are sufficiently mitigated”.  They have no objections to an order that BU lacks capacity to make decisions about contact, but will not supervise contact if it is ordered.  They characterised their position as “neutral”.

The Official Solicitor (Bridget Dolan QC)

The Official Solicitor is charged with representing the protected party’s best interests – as distinct from what that person states they want.  Bridget Dolan QC said that she “does recognise BU’s deeply held wishes and the affection she professes to feel for NC and he for her”.  But: 

… whatever his motives, and whether he intends this or not, there is coercive control and unhealthy dependency in which he’s substituting his mind for hers  – and the court should not allow this to continue.  No persons should be so controlled.  BU should be given the opportunity to regain and exercise her own autonomy.”

The Official Solicitor did not support contact: 

The risk she is entitled to protection from is not only financial exploitation but also totalising control, and estrangement from her loving and supportive family.  We accept that can only be achieved by separation from NC.  We accept the recommendation for person-centred existential psychotherapy and education to assist her in coming to terms with the loss of the relationship, or to reset their relationship to one which does not involve extreme coercion of her by him.”

Stating that “NC showed complete contempt for the civil injunction and bail conditions” and that he shows “clear distain for the authority of the court”, the Official Solicitor was not satisfied that a civil injunction alone was sufficient to prevent NC from meeting with BU and forming a civil partnership with her.  On those grounds, a Forced Marriage Protection Order (FMPO) should be considered.  The Official Solicitor acknowledged that “this is obviously a very significant step to take in respect of somebody who has capacity to marry and expresses the wish to do so” and said that a FMPO can “only be used when a person’s will is being overborne by another person such that it destroys their consent”. 

She referred to Re K (Forced Marriage: Passport Order)  [2020] EWCA Civ 190) as an authority that a FMPO can be made when a person does in fact have capacity to consent to marriage and also to that that it was ‘unlikely in all but the most serious and clear cases’that an indefinite order would be appropriate (paras. 27 and 77).   In fact, the applicant in today’s case was requesting a FMPO for one year and the Official Solicitor supported that as appropriate.  

Finally, the judge said:

I appreciate the need for a resolution of these matters for BU, for her wider family, and for NC.  The issues involved here, and the gravity of the consequences for all parties but especially BU, are such that it would be wrong for me to give my decision without the reasons for it.  I will endeavour to produce a formal written judgment before the long vacation.”

This means there may be a published judgment by 30th July (although it may be later than this). We will post a link to the judgment as soon as we know about it.

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

Note: We are not allowed to audio-record hearings, so quotations from the hearing are as accurate and I could make them but are taken from typed notes made during the hearing and are unlikely to be verbatim.

Photo by Agni B on Unsplash

On care, coercion and childbirth in the Court of Protection

By Ruth Fletcher, 5th July 2021

The decision in ‘An Expectant Mother’ is unsettling on many levels, not least because it takes a harsh legal approach when a care-full one is needed.  Instead of paying even more attention to the experience of the agoraphobic pregnant woman at the heart of this case, somehow the judgment has ended up turning her pregnancy and her agoraphobia against her. 

How has this Court of Protection decision come to authorise forcible removal, a planned delivery, chemical restraint, and physical restraint of a pregnant woman who wants to have a home birth?  How has P’s agoraphobia become a reason to deny her this choice, rather than a reason to support her in managing her anxiety and her childbirth at home?  

One of the frustrating aspects of this judgment is that it could have been so different.  The Court of Protection has sometimes delivered on the ‘empowering’ promise of the Mental Capacity Act 2005 by taking extra care to listen to and respect the wishes, feelings and values and beliefs of the Ps who appear before it.  

But here the Court has become a means of managing resistant pregnant bodies in anticipation of childbirth, and not for the first time (see Walmsley 2014, Butler Cole 2019).  Force and restraint, including the use of personnel trained in Prevention and Management of Violence and Aggression (PMVA) techniques, were authorised as part of the care plan in order to get a woman through childbirth.  A woman’s wish for a healthy baby was extracted from the collection of wishes, feelings, and knowledge that she has about her pregnant life, and joined with medical evidence (of a 10% risk of a need for urgent transfer from home to hospital and a 1% risk of a stillbirth) to justify orders permitting forcible removal, a planned delivery, and physical and chemical restraint.   

We know that the use of coercive measures in pregnancy, and in mental health, is a key process of generating gender, class, ableist and racialised inequalities for those who participate in life’s reproduction, a process which moves across policing and health care (Chadwick 2018, Thompson 2021).  We know too that pregnant people who are living with anxiety, phobias and other mental health conditions want support with difficult situations in their everyday experience and in moments of crisis.  What should we legal academics do with this knowledge when commenting on a case of this kind?  One thing we could do is draw on the contributions of Black feministsabolitionists and others who show us how to replace coercion with care, even in moments of crisis, and imagine what critical legal care might be.     

In seeking to practice some critical legal care with this blog, I try to avoid ‘blaming the judge’, even though I am critical of the way the judgment has been made.  With the possibility of rewriting judgments in mind, I approach the judgment not just as the judge’s authoritative words, but as the result of a series of legal moves, a series which could be arranged differently, and more care-fully.  I identify four legal moves that we – the public community to whom law is accountable – need to understand better if we are to participate, and succeed, in making law more care-ful and attentive to the richness of life’s diversity.      

The first move is the representation of the pregnant woman as someone whose key social role is the delivery of a healthy baby.  The value of her reproductive labour, and of her knowledge about how best to manage that labour, becomes diminished as she is seen by law as always, already a mother. A second move is that the everyday social aspects of making decisions get squeezed out of capacity testing.  The capacity test, which normally combines clinical diagnosis with assessment of functional criteria, becomes a biomedical diagnosis that sees a patient as being overwhelmed by, rather than responding to, her symptoms.  Third, the judgment has the effect of flattening what is usually a complex multi-stranded process for determining best interests into a legal concern for reducing the risk of stillbirth at all costs.  And fourth the consideration of the restraint issues as one dimension of the best interests determination, and without a fuller rights-based assessment of whether such restraint was necessary, has the effect of silencing P.  Her views on the use of physical or chemical restraint are not reported even though she participated in the hearing.   

1.  Seeing the pregnant woman as a mother in need of management 

When we law teachers ask students to draw out the significance of a case in a commentary, typically we ask them to first identify the ‘material facts’ of the case.  Selecting, and characterising, the material facts of a situation such as this one, where a pregnant woman is receiving support in managing her pregnancy while living with agoraphobia, is a vital legal process.  Such selection brings the facts of the person’s life to bear on the law and presents an opportunity to represent them as a whole person with likes and dislikes, quirks and trivialities (see further Rackley 2010).  This is a different, if complementary, factual process to the one where medical evidence about clinical risks is considered.  It preserves legal space for the curious and particular features of a person’s life, such as the lived experience of agoraphobia while pregnant, which an evidence base might not capture.  And it is vital in reminding us that life before the law is not just a matter of biological fact (see further Harrington, Series and Ruck Keene 2019), but a creative process of living in and making our own of socio-legal worlds.    

The selection of ‘mother’ in the name of the case and throughout the judgment as the way of characterising this pregnant woman is already telling us something about how the material facts of this case are perceived.   The case name tells us that this case is different from the usual incapacity cases where initials are bequeathed to the individuals involved as part of the practice of protecting people’s privacy.  And it tells us that the pregnant woman whose care is at the heart of this case is already a mother, even though she has not yet given birth.  If this one pregnant part of her story, a part that is important to her, becomes the whole story for law, the part comes to overwhelm the whole and disables her telling of her pregnant future.  The problem with this telling of the woman’s story is that her management of her gestational labour becomes invisible, and devalued, in the rush to allow others to manage her as the problem.       

2. Squeezing the social dimensions out of capacity and agoraphobia

The second move that I find interesting about the judgment is the way that her lived experience of agoraphobia is turned into a state of being overwhelmed by her symptoms to the point where she is unable to make decisions related to leaving home, but able to make decisions between modes of planned delivery in hospital and between types of anaesthesia. 

This happens as the court addresses the first legal issue: whether or not she has legal capacity to make her own decisions.  Capacity decisions are crucial legal decisions, which are often made in an everyday context by those mediating access to social care or health care for individuals, and can vary from context to context. If she has legal capacity to make her own medical decisions, then the doctrine of consent applies and she has the right to refuse recommended treatment for her own reasons even if it puts her pregnant life at risk.  If she does not have legal capacity, the doctrine of ‘best interests’ applies by virtue of s. 1 of the Mental Capacity Act 2005, and others – here carers and ultimately the judge – decide how she is to be treated.  

In response to the hospital’s request for an order and having heard from the woman’s litigation friend the Official Solicitor and two medical experts Holman J declared pursuant to s. 15 of the MCA, that “the respondent lacks capacity a) to conduct these proceedings; and b) to make decisions about the location of the delivery of her baby.”  

In getting to this decision however, Holman J does not frame his consideration of the capacity law issues by reference to the ‘cardinal principles which flow from the statute’.  These cardinal principles of capacity law were articulated by MacDonald J in C (2015) (paras 25-33), and are cited by MacDonald J in GH (2021) at para 21, the precedent to which Holman J refers for legal authority when he says:

The judgment of MacDonald J in East Lancashire Hospitals NHS Trust v GH contains a very thorough analysis of the relevant law at paragraphs 19 to 28. I have read it during this hearing. I agree with it, and I incorporate it into this judgment by reference as my narrative as to the applicable law.” (para. 18)

Rather he goes straight to medical evidence as the source for generating the legal reasons why she does not have capacity. The first reason that the court gives is that she has the kind of diagnosis that is required in order to make a legal finding of incapacity because she has ‘longstanding and deep-seated’ (para 10) agoraphobia.  Agoraphobia, the court notes “is a classified mental illness, and an impairment of, or disturbance in, the functioning of her mind or brain within the meaning of section 2(1) of the Mental Capacity Act 2005” (para 7).  The second reason is because the judge says that she cannot “weigh matters in the balance if the activity in point entails her leaving her home”, which effectively means that she has failed one of the four functional aspects of the capacity test under s 3(1)(c) of the MCA.  

There are several points worth noting about how the capacity rules are applied in making the decision here. First, the elaboration of the statutory framework is partial and incomplete.  While Holman J clarifies that section 2(1) MCA is the basis for the diagnostic test which is used to find whether people have capacity or not, he does not clarify that section 3 is the statutory basis for the functional test, including the ability to weigh information about options, and he does not follow the cardinal principles (GH para 21; C para 33) in applying the functional test first and the diagnostic test second.  

The sequencing of the tests matters because applying the functional test first is a means of delivering on the non-discriminatory objectives of the legislation.  This sequencing seeks to prevent diagnosis being prioritised over social functions in the capacity assessment, and to avoid any assumption of incapacity on the basis of the person’s condition.  Holman J also does not cite or apply relevant aspects of section 1 MCA, including the principle that unwise decisions are not in themselves evidence of incapacity, or that incapacity should not be found without first taking all practicable steps to help the person make the decision.  It’s as if the fact of substantial agreement on the incapacity of an agoraphobic woman pushes parts of the legal framework into the background.  

Second, he foregrounds biomedical knowledge over both legal and experiential knowledge in his application of the legal tests for capacity.  He does this by focusing on the diagnostic aspects over the functional aspects of the tests.  He also accepts the medical experts’ views rather than questioning them or contextualising them legally.  And he ignores the pregnant woman’s knowledge of her pregnancy, her agoraphobia, and herself, information that could be relevant to the question of capacity.  

Third, in making an anticipatory finding of incapacity he does not take the time-specific, or moment-specific, approach which is the generally accepted approach to capacity-testing.  Agoraphobia becomes a condition which reaches into the future and compromises this woman’s decision-making capacity on home-related issues with no consideration of how her own practice, or other social interventions such as support for her (see here and here), could reduce such compromising effects.  

3. Flattening a multi-stranded ‘best interests’ test into the avoidance of stillbirth at all costs

Before Holman J begins his assessment of what is in this woman’s best interests, he mentions one aspect of her wishes.  The wishes of an incapacitated person are legally relevant as one of the key components of ‘best interests’ under section 4 MCA, and as Hayden J says in R (2020), and MacDonald J says in GH (2021), it has become more usual for the Court of Protection to respect an incapacitated person’s wishes and feelings, even if that means accepting significant clinical risks, including a risk of death.  So Holman J’s reference to the pregnant woman’s wishes at this point in the judgment, as he is about to present his best interests assessment, is interesting and significant.  

We are told that the woman “dearly wishes to give birth to a healthy baby, undamaged by the process of birth” (para 10).  The purpose of telling the reader this is then revealed as the judge says that “the safety and wellbeing of the expected baby, as well as her own safety and wellbeing, are relevant to the consideration of the mother’s own best interests”.  In two sentences, the legal test of best interests is framed by reference to birth as a damaging process, the baby-regarding wishes of the pregnant woman, and the safety and well-being of the expected baby as part of the pregnant woman’s best interests.  The stage has been set for flattening the best interests test into an assessment of how to avoid stillbirth at all costs.  It could have been a very different judgment if the judge had framed his assessment of best interests by reference to the full statutory framework, Aintree v James [2013] UKSC 67, other CoP jurisprudence, and a fuller consideration of her wishes and feelings.  

The next interesting aspect of the judgment is this regard is its materialisation of the potential for an emergency as ‘the nub of the case’, so that a possible future crisis becomes the problem to be resolved in the here and now.  The effect (whatever the intention) of making the case a matter of crisis is, as Harrington has said in relation to previous similar cases (2017, 80), to authorise more authoritarian management.  Rather than actually manage contingency planning in the here and now so as to try and minimise the need for future authoritarian intervention, contingency planning becomes the means by which authoritarian intervention is delivered now, as the moment of crisis is brought forward.    

The judge’s next step in figuring out what is in the best interests of this pregnant woman is to consider information about foetocentric risks, rather than risks in the round.  Here again the judgment is being driven along by parts of the medical evidence rather than by the statutory framework, or by the situated experience of the pregnant woman.  Interestingly we learn that the foetus-baby appears to be developing normally and that there is no particular reason to expect anything other than a normal delivery: “The mother is physically healthy, and currently there are no specific indicators that she may not have an uneventful, spontaneous labour and vaginal delivery…  there is no case specific indication that any particular medical emergency will arise in this case” (para 12).  But that information does not end up having much legal weight given the ultimate decision to proceed as if there is an emergency.  Rather the legal weight is given to the risk of a need for an urgent transfer to hospital and to the risk of stillbirth or of a seriously damaged baby (para 13-14).  The latter is reported as being one in 200 hospital births, with that figure doubling to one in 100 with cases which start at homebirths, drawing on the expert evidence of Professor Walker, the consultant obstetrician instructed by the Official Solicitor.    

Having considered this information about the risks of a homebirth, the judgment then moves to a relevant legal rule, in the form of the precedent of East Lancashire Hospitals NHS Trust v. GH [2021] EWCOP 18 and the only case which is cited (paras 15-18) in this judgment.  It is more usual in terms of legal method to elaborate the rules first and then to consider how they should be applied.  GH similarly involved the application of statutory rules on capacity, best interests and related matters in the context of an agoraphobic patient whose labour was obstructed but did not wish to travel to hospital for the birth of her child.  After an emergency hearing between 10pm and midnight MacDonald J ruled that the pregnant woman “could, in her best interests, be transported to hospital using reasonable and proportionate force if necessary” (para 15). In the event, the woman’s labour progressed and the baby was delivered safely at home before the court’s ruling could be implemented.  

Holman J makes two uses of GH.  He adopts MacDonald J’s account of the relevant law as part of his legal narrative, but by directing us to GH for a fuller articulation of legal authority (para 18), he decides that the significance of GH overall is “the need to anticipate problems of this kind and to face up to them as best one can in advance, even if that involves speculation and/or reliance upon statistics” (para 17).  One of the advantages of such anticipation is that “the mother herself has been able to participate, and has participated,throughout the hearing, at a time when she is not in labour, pain or distress” (para 17).  Her participation, including by video link during the hearing, has not resulted however either in the judicial elaboration of her values, wishes and feelings, except by reference to her wish to have a healthy baby, and her agoraphobia-related wish not to leave her home.  And it has not resulted in a decision which is respectful of her knowledge, labour and wishes.  She may have participated, but she is not very present in the judgment.    

Having cited and considered the application of GH, Holman J’s next step is to identify four different actions, which may be necessary for a safe delivery of the baby to be, and decide whether they can be authorised as being in her best interests.  Transfer to the hospital (1) for a planned delivery (2), the use of sedation (3), and the use of physical restraint (4) are addressed in turn, although a planned, rather than spontaneous, delivery is only addressed as an aspect of the transfer to hospital and not on its own terms.  The assessment of these four actions in light of the different components of section 4 is however pretty uneven and lacking in detail. Holman J says: 

All the doctors who gave evidence in this case agree, the Official Solicitor now agrees, and I agree, that, for all the above reasons, it is preferable, and in the overall best interests of this particular mother and her baby, that she should give birth in hospital in a planned way around the EDD, but before she goes into spontaneous labour” (para 21).  

We seem to have an example of ‘hidden law-making’ (Montgomery, Jones and Biggs 2011Guilloud Doyle 2021) here as the apparent agreement of the medical experts and the Official Solicitor, and indeed the family members – everyone except the pregnant woman – becomes the basis on which the orders are authorised.  The only time that Holman J refers to section 4 MCA as the statutory framework that should be guiding the court in determining ‘best interests’ in light of the evidence, is when he notes that the views of her partner and her mother – in favour of a hospital birth – are legally relevant since s 4(7) directs consideration of the views of family members (para 21).  

Finally, at para 22, Holman J tells us what the pregnant woman wants for her childbirth.  These wishes are legally relevant as part of what section 4 requires.  Not only are they legally relevant, but the ‘wishes and feelings’ of an incapacitated person have come to be a primary consideration in best interests determinations at least since the decision of the UKSC in Aintree v James [2013] UKSC 67.  In that case Lady Hale said (providing a statement which is often cited in incapacity cases and related academic analysis): 

[I]n considering the best interests of this particular patient and at this particular time, decision-makers must look at his welfare in the widest sense, not just medical but social and psychological; they must consider the nature of the medical treatment in question, what it involves and its prospects of success; they must consider what the outcome of that treatment for the patient is likely to be; they must try and put themselves in the place of the individual patient and ask what his attitude to the treatment is or would be likely to be.” (para 39)

There is not much evidence in this judgment of the judge in this case having determined best interests in this way. 

Judges in the Court of Protection have recognised a trend towards respecting the wishes of incapacitated persons when it comes to medical treatment.  Hayden J said in R (2020), a case concerning the authorisation of a caesarean section in best interests but against the wishes of a woman with fluctuating capacity: 

I am being invited to determine whether, if the adult in question loses capacity, a medical intervention can be authorised which is contrary to her expressed wishes, whilst capacitous. In virtually every application that comes before this Court, relating to medical treatment, the answer to the question posed here would be a resounding ‘no’” (para 33).  

But the fact that the adult in question is pregnant means that Hayden J goes on to say: 

It is important that respect for P’s autonomy remains in focus but it will rarely be the case, in my judgement, that P’s best interests will be promoted by permitting the death of, or brain injury to, an otherwise viable and healthy foetus.” (para 63)

‘An Expectant Mother’, continues this pattern of making the childbirth cases go against the general trend of respecting the known wishes of incapacitated people.  And it does so in terms which recognise that the order might also compromise her health and well-being.    

Here Holman J says: 

The mother herself says that she would prefer to give birth at home, but she clearly expresses that that is due to her agoraphobia and fear of going out. I am satisfied that, but for her agoraphobia, the mother herself would opt for a hospital birth, as encouraged by her mother and partner.” (para 22)

 In one sentence he turns her wishes into the expression of agoraphobia, and conjures up a woman who would opt for a hospital birth ‘but for her agoraphobia.’   The wish is trivialised by turning it into an expression of mental illness, and she is imagined not as she is – a whole person who lives with agoraphobia – but as someone who would opt for hospital birth if she was not agoraphobic.  Her wish for a home birth is rendered delusional, the product of her agoraphobia, rather than the experience-based view of an agoraphobic person. The effect is to say that this is not the kind of wish that should be given legal weight.  Not only is the agoraphobia pushing up against the legal presumption of capacity (in a similar process to the anorexia cases), it is also perceived in this judgment to be a reason for diminishing the value of the incapacitated person’s wishes.   

4. Silencing the one to be restrained

Having decided that a planned hospital birth is in her best interests, the next legal question that is addressed is how much and what kind of restraint it is permissible to use in making a planned hospital birth happen.   We are told that everyone is agreed on the appropriateness of chemical restraint, but not on physical restraint, although this time it is not clear whether that ‘everyone’ includes or excludes the pregnant woman.  When the judge discusses the administration of sedation, he notes that it could be administered orally or by intermuscular injection, and he notes that the woman does not like needles but accepts the need for needles (para 25).  He does not report on her views on the use of sedation itself, so we have no explicit consideration of her wishes and feelings on the use of chemical restraint.  

On the use of physical restraint, the Official Solicitor, the woman’s litigation friend, opposes this unless an emergency arises, because it is more than is necessary for managing the situation.  The judge considers the expert opinion given by both psychiatrists that the use of force could have harmful effects (para 28), as well as noting that it would entail “a severe infringement of the mother’s personal autonomy and liberty” (para 30).  The use of force “may entrench her agoraphobia. It may damage or impair her bonding with her baby. It may give her long-term flashbacks. It may compromise her attitude to future pregnancies, or her dealings with persons in authority.”  As Ms Sophia Roper points out for the Official Solicitor, “these are known risks from the use of force or restraint’ and they should “outweigh the more speculative and statistical risks, if the mother goes into labour at home but may then require an urgent transfer to hospital” (para 28). 

Holman J also considers the practicalities that such a use of force would entail.  Two personnel trained in restraint techniques would be made ‘discreetly available‘ on the occasion of the planned transfer to hospital. They would be permitted “if necessary, to use to use physical force and restraint to her arms and upper body (but not lifting or handling her by her legs) so as to get her into the vehicle and get her from the vehicle to the maternity area of the hospital” (para 29). Physical restraint would exclude being placed in a prone position, or pressure applied to her diaphragm or abdomen. They would not be permitted to use, and the hospitals did not ask for so-called mechanical restraint, meaning handcuffs and straps or belts, apart from a necessary normal maternity safety belt in the vehicle (see para 29). Holman J says that the mother is clear that she does not want an acute emergency to “arise in the home from which the mother cannot be rescued before some catastrophe occurs to either her or her baby” (para 30). But he does not say what the pregnant woman thinks is tolerable to endure in seeking to avoid this.  We are not actually told at any point what her views on the use of chemical or physical restraint are.  

In spite of all this, in spite of judicial recognition that the use of force and restraint carries known risks of harm to her, and will be a severe infringement of her autonomy and personal liberty, and in spite of the fact that there is no reason to believe that her labour will progress anything other than normally, she is subjected to an order that would move her into a hospital, have a planned delivery of her baby, take sedation and be physically restrained.  Instead of capacity law empowering this woman, it has become a means for subjecting her to the threat of considerable restriction.  This forcible restriction would not be legally possible if the legal foregrounding of the diagnosis of agoraphobia had not rendered her incapacitated.  But even if legally incapacitated, such an order seems out of step with the Aintree v James oriented judicial trend to frame the determination of best interests by reference to P’s known wishes and feelings.  It joins other Court of Protection decisions, such as the recent amputation case (see here and here) in keeping alive a pattern of going against P’s wishes and feelings in certain instances.  But it does so in terms which do not even hear from P on the issue of restraint.  

The authorisation of restraint in best interests here, including the possible use of personnel trained in PMVA techniques as the care plan indicates, is profoundly troubling.  We have no evidence of what P thought about the administration of chemical or physical restraint.  It could be that she had expressed a view earlier that she would prefer sedation and even a measure of physical restraint in the form of persons guiding her. It is worrying that we do not know.  The possibility of working through some kind of non-binding advance expression of her wishes was there, and could have been engaged in order to make the best interests determination more accountable to her on the restraint issue.  Such a process could do a better job of addressing the fraught question of how best to respect the wishes of patients who want treatment that they may later refuse when ill and distressed (see here and here).

Second, the orders (4&5) indicate that the lawfulness of any restraint, which amounted to a deprivation of liberty, was secured by any such deprivation being in best interests, and that any restraint used shall be the ‘minimum necessary’.  But these references in the orders are the only place I can find that directly address legal questions about whether the restraint was rights-compliant under the Human Rights Act 1998 as distinct from MCA-compliant.  The use of restraint as part of the care for those who are legally incapacitated engages the right to liberty under Article 5 of the ECHR because restraint may breach that right to liberty.  A ‘best interests’ legal standard is not sufficient in itself to make a deprivation of liberty lawful, it also has to meet a human rights test of proportionality, by being the minimum deprivation necessary in order to achieve a legitimate objective – care of the person – for the deprivation.  But the judgment itself is silent on the substantive question of how this legal standard of necessity is to be met in this instance.  Holman J does mention that force is always to be the minimum necessary at para 27, but this goes to the question of how much force to use, not whether to use it or not in the first place.  Rather it seems that the question of whether reasonable force is necessary is to be delegated to those who would implement it on the day.  The judge does not elaborate any legal standards for deciding the issue.  In the event, the question of how much restraint was used is left oblique as we learn through the postscript that “she received 2mg of Lorazepam orally” and that “although initially resistant, she was guided by staff and her family into the ambulance and no restraint was required or used”.  As Suzanne Doyle Guilloud tweeted at the time, what do ‘guided’ and ‘received 2mg of Lorazepam’ mean? Especially in the shadow of an order authorising restraint?  

Pressuring pregnant bodies, expanding the risk of stillbirth

There are other lines of incapacity cases in the Court of Protection, such as the anorexia cases (Cave and Tan 2017Clough 2016), where even if the use of force was once authorised in order to feed a patient against her wishes, the trend has clearly become one of respect for the patient’s wishes and feelings even in a context where she might die.  The effect of this childbirth case is to say that the prospect of a stillbirth is an even worse scenario than the prospect of an anorexic patient dying.  Death through self-starvation is clearly a harm to be avoided as part of best interests determinations in the anorexia cases, but not at the cost of subjecting the anorexic woman to forcible treatment which violates her sense of self and could aggravate her illness.  But here stillbirth becomes an outcome which must be avoided at all costs, including subjecting the woman to forcible removal to the hospital, a planned delivery, and chemical and physical restraint. 

Clearly foetal life is ‘not nothing’.  Not to this woman.  Not to the public at large.  Not to law, given recognised public interests in supporting pregnancy.  Not to an intersectional feminism which has long fought for respect for life’s reproduction.  But separating out the legal interest in foetal life, turning it into the pregnant woman’s wish for a healthy child, and enforcing it against the life that gestates and births that foetus into a child, is to do legal violence to the wonder of entangled reproductive lives.  There are lots of ways to respect foetal life by supporting pregnant people and not turning foetal life into an oppositional means of degrading a pregnant person’s life.    

There is a problem with the way that the cited 1% risk of stillbirth has expanded on the pages of the judgment through the legal moves outlined above.  Other important concerns have been minimised as pressure on the pregnant woman is increased with the threat of physical and chemical restraint in non-emergency circumstances and in the absence of the woman’s advance agreement.  This case participates in the devaluation of childbirth as reproductive labour by undermining the pregnant person’s knowledge, wishes, feelings and values.  By bringing the risk of an emergency childbirth forward in time it squeezes the legal space for a more care-ful and less coercive childbirth in the here and now.  By discussing the legal moves through which this process happens perhaps we can redirect them too.    

Ruth Fletcher is Senior Lecturer in Medical Law at Queen Mary University of London.  She is interested in questions of reproductive justice and you can access her publications here. She tweets @fletcher_ruth

Photo by Cassidy Rowell on Unsplash

Delays in finding an Acquired Brain Injury Placement: “A very significant degree of muddle”

By Gaby Parker, 29th June 2021

On 23rd June 2021 I observed a hearing (via MS Teams) before Mr Justice Hayden in the Court of Protection: COP 1354439T Re. PH. 

The case was about finding a suitable placement for P who remains in hospital although he is fit for discharge and has been for a long time.

The hearing turned out to be a continuation of a hearing from two days earlier (which I had not attended). It was clear that issues in P’s care had been before the court on a number of previous occasions, with attempts to find a suitable placement for P first coming before Mr Justice Hayden in August 2020.

Counsel for P (via the Official Solicitor) was Ian Brownhill, whilst counsel on behalf of the Hospital Board was Roger Hillman. Hayden J very helpfully invited Mr Hillman to open the hearing with a history to the case. 

Background to the case

P was described as a man in his 40s with complex medical needs after suffering a range of serious injuries due to impulsive behaviour in the context of alcohol and drug abuse.  

We were told that in 2016 P drank highly corrosive hydrogen peroxide resulting in oesophagectomy (removal of part of his oesophagus), splenectomy (remove of spleen), tracheostomy and a colostomy with PEJ (percutaneous feeding tube into the small intestine).  

He has significant communication difficulties as a result of his tracheostomy and cannot talk, save for mouthing words. He also has a history of seizures, and his situation was further complicated in August 2019 when a severe fit triggered a diffuse hypoxic brain injury. This affected his cognitive function along with reducing his fine motor skills. 

He had previously been assessed by a consultant clinical psychologist in November 2020 who reported that P had an Emotionally Unstable Personality Disorder, Impulsive Type[1], which had been exacerbated by the acquired brain injury. He also assessed P as lacking capacity in a number of respects, including to litigate and to decide on his residence and care – although in a further report in February 2021 he noted P did have capacity to decide whether or not to accept his PEJ feed and the care associated with this.

There had been considerable difficulties finding an onward placement for P, primarily (it was said) as a result of his need for a tracheostomy and what were described as his “challenging behaviours”.  These were reported to include violent assaults on care and medical staff, fire-raising, removing his tracheostomy cuff, and also refusing to allow himself to be PeJ fed (his weight dropping to just 42 kilos at one stage).

P remains in hospital, despite having been ready for discharge since the end of 2019.  Two placements in specialist care facilities had broken down (in January and July 2020) as a result of the units being unable to manage his challenging behaviour and so he was returned to hospital to await a suitable placement.  Many enquiries had been made, but reportedly many potential placements had declined to accept P, saying they could not deal with the range of needs with which he presents.

On 19th January 2021, the court was told that P was awaiting a move to a planned rehabilitation placement specialising in brain injury, mental health and challenging behavioural needs.  This has still not happened.  The placement has not explicitly refused to accept him, but there had initially been delays because of the pandemic and lack of staff availability and more recently a succession of subsequent delays as the placement wanted a number of issues addressed in relation to the safe management of P’s needs. This has led, said  Roger Hillman (on behalf of the Hospital Board) to “a loss of faith as to whether [Placement] is ever, in reality, going to accept P as a patient“.

Two days before the hearing I observed, the court had been told that a key part of the problem with finding a suitable placement was the need for safe management of P’s tracheostomy – which he had pulled out in May 2021 and had since refused to have replaced.

The Hospital Board had assumed that the tracheostomy needed to be replaced. But counsel on behalf of P had not had sight of any capacity assessment or best interests analysis about this – and as it turned out, much of the hearing I observed concerned whether or not there was in fact a medical need for the tracheostomy.

Does P need a tracheostomy?

At the hearing just days earlier, it appeared that the position of the healthcare provider had been that there was a clinical need to replace the tracheostomy.  However, P’s partner had indicated to the judge that she had heard different opinions about this from the junior doctors, and this led the judge to order a formal report on the matter.  

Since the previous hearing, the healthcare provider had sought the opinion of a consultant otolaryngologist, who had advised that the tracheostomy was not necessary.

This was hugely significant, as this might lead to a change in opinion of various placements that had previously felt unable to accept P.

This revelation spurred the first of many challenges from Hayden J:

“On Monday I was told that, given the challenges regarding the tracheostomy, there was probably nowhere in the country that would have him.  It now seems, if I have got this right, that the many months of delay resulting from questions and concerns about the tracheostomy from [Placement] were all predicated on the assumption that the tracheostomy is needed.  And now it emerges that it isn’t.  Such muddle and confusion in a case before the High Court gives me cause for anxiety, and a particular anxiety that P is not being well-served.  It’s difficult to see, Mr Hillman, without meaning to press you, how you could not concede the very significant degree of muddle.[2]

Addressing Mr Brownhill (Counsel for P) Hayden J said “You must have been very surprised by [Consultant’s] report”.  “Very surprised indeed,” he replied, “there was a palpable shock when we read it.

The court heard evidence from the consultant otolaryngologist who had provided the new opinion regarding the need for tracheostomy, from the senior matron caring for P, and from P himself (although public observers were asked to leave while Hayden J spoke with him privately). It appeared there had been considerable breakdown in communications between different healthcare professionals in this case, with Hayden J noting “it is rare to see a breakdown on such scale”

If P had not decided to take his tracheostomy out himself, it would still be in. And it’s not needed.  And with it in, he cannot communicate with his partner or the outside world, and it has undoubtedly skewed the options for rehabilitation. I consider that to be pretty alarming.” (Hayden J)

However, towards the end of the hearing, P’s partner (who had been present throughout) raised a note of caution and asked for it to be “on record that I still have grave concerns about the tracheostomy.  [Consultant] said there would be a very low risk without it, but my understanding is ….”  She then gave a fairly detailed account of P’s medical history, including the fact that he “barely has any oesophagus left”:  She said  “he’s had his whole stomach removed as well, so the swallow has nowhere to go apart from into the lungs. Is [Consultant] aware of that?”  The judge reassured her that “what I want to happen now is a proper analysis of all these issues, so that we have a better picture of how his different clinical needs interrelate.”

To the barristers, the judge said that there “were features of [Consultant’s] evidence with which I could have been more comfortable than I was, but he only saw P once, he didn’t have access to the full medical records, and had relatively compromised recollection of the patient he saw”.  The medical necessity for the tracheostomy needs to be checked “so that [P’s partner] and I can be reassured”.  He added: “I don’t know what his needs are for the future. And the fact that I don’t know is what is worrying me”. 

A very significant degree of muddle”: My reflections

Listening to the contributions, a number of factors stood out as contributing to the catastrophic breakdowns in communication. 

The presence of P’s tracheostomy meant he could not speak, and the nursing evidence made clear that this was inextricably linked with behaviours that challenged the care staff. Since he had removed the tracheostomy, there had been a marked improvement in his engagement with care: the judge referred to him as “blossoming and restored to communication with the world”.

In the first few months his behaviour could be very challenging. I think initially he was very low in mood, and he was not complying with the recommendation of the nursing and medical team in relation to feeds.  …  Being able to talk, he’s changed significantly.  Being able to communicate he’s been laughing and joking with the staff.  He’s feeling more confident in himself.  His frustration really was not being able to communicate.  His whole impression about how his life is going to be able to move forward has completely changed.” (Matron)

Mr Justice Hayden asked whether anyone has told P that he doesn’t have to have a tracheostomy, but none of those in the courtroom at the time knew the answer to that question.  

During the lunch break, the judge visited P via the video-platform: “I told P that he was not going to be required to have a tracheostomy. It was fairly obvious to me that he did not know this.  He responded with obvious enthusiasm and put his thumb up to me in a celebratory gesture.” (Hayden J)

It was subsequently reported to the court that P was “very, very pleased that you included him in this discussion and was smiling considerably.  ‘Very chuffed’ were his words.”

One does not need to be a psychologist to appreciate that a person who cannot communicate through usual means will seek to do so by whatever means are available to them. In P’s case, he communicated his frustrations by controlling his nutritional status and rejecting care. It was not clear what (if any) efforts had been made to establish alternative, reliable communication methods with him. P was noted to use a tablet to watch Netflix and listen to music; I was left with many questions about whether this had or could have been used to support better communication at an earlier stage. 

There were also systemic, organisational factors at play. P was noted to have been admitted under the care of a medical consultant, but was being cared for on a surgical ward due to his tracheostomy needs. As such, he was an ‘outlier’ on the ward. He had then been identified as medically fit for discharge, and therefore it appeared there was no-one genuinely ‘leading’ on his physical healthcare needs. Possibly as a consequence, it was clear that different professionals on the ward held and expressed different views on what was required. This was a point Hayden J pushed on repeatedly whilst hearing evidence, highlighting the impact this was having on P and his partner’s understanding of their situation and the medical plans for his care.

Later in the hearing, it was mentioned that P was being cared for on the ward under the auspices of the Mental Health Act 1983; but no reference was made to involvement from mental health professionals in supporting his mood or behaviour. This begged the question in my mind as to how and why his psychological needs appeared to have been so overwhelmingly ignored by mental health provision, apparently being left to the nursing team to work through without a clear formulation. I wondered whether P’s complex psychological needs (which included emotional and cognitive issues as well as self-harming behaviours) had led to an over-shadowing of his ‘normal’ distress in the face of unwelcome healthcare interventions and his right to have an opinion about these. There was a sense that he had been silenced in his care, both literally and metaphorically; I felt distressed reflecting on the many ways that being silenced in this way would be experienced by any person who had been through significant trauma. It was apparent that P’s opinion had not been weighted highly in decisions made about him- if, indeed, any such best interests decisions were in fact needed. At one point Hayden J commented: “Without wishing to put myself in the place of the professionals … I did not feel I was interacting with a man who showed obvious incapacity on the key issues we are dealing with here” (we could see Matron clearly nodding as he said this).

I also wondered if the teams involved had become so paralysed by the complexities that their usual practices had fallen aside. Capacity assessments four months earlier had deemed P to   lack capacity to litigate, and to make decisions about care and treatment, but reference was made to this conclusion being somewhat “broad brush” (and it did not seem that there was any capacity evidence relating to the tracheostomy in particular).  I wondered whether due consideration had been given during those assessments to the fact that specific decisions in P’s care and treatment would vary greatly in their cognitive complexity, emotional salience, medical necessity and so on. No reference was made at any point to any efforts made by the treating team to support P’s capacity for these decisions. I wondered why it did not appear that anyone was considering whether to re-assess now that P was presenting so very differently.  I was relieved at the end of the hearing when Hayden J ordered updated capacity assessments. 

Overall, I was struck by what appeared to be a complete absence of a holistic formulation of P’s needs. I noticed how angry I felt about this –  the absence of what to me is a basic tenet of quality care for people with complex needs. 

The compassion demonstrated by the nursing team working with P, and their persistence in caring for him in the face of complexity, was not enough. Nor was the absolute dedication and support provided by his partner, on which Hayden J repeatedly commented. Their care needs to support from a robust plan in which each involved professional understands the ‘big picture’ and how their involvement with P connects to other aspects of his care. This seems as far from the reality on the ground as could be imagined. 

Hayden J expressed similar views, noting that what was needed was to go “back to the drawing board”.  The way P had been described to potential care providers was now out of date.

This is a relatively young man in hospital, showing at long last some resilience to his situation, some real improvements in his weight, his general demeanour is better and the clinical consensus is that although he’s still far from an easy man, he’s unrecognisably milder and more manageable than 9 months ago.” (Hayden J)

What was needed was to start with a “complete blank sheet” and to urgently reassess all of P’s needs and then formulate a care plan to meet them.  This would then form the basis for suitable placements to be  identified. Mr Justice Hayden advocated for a clinical lead to be appointed to oversee this process, with the aim of P having “…a plan that enables him to take advantage of his own advances…”.

On a few occasions Hayden J appeared to wonder aloud if his expectations (for clinical leadership, multi-disciplinary reviews, and so on) were unrealistic. My first reaction was absolutely not: these are basic principles of effective care and rehabilitation. I then connected with my own experiences of healthcare (as a recipient, carer, clinician, manager) in both NHS and independent sector contexts, acknowledging the frequency with which less than ideal practice occurs. We can so readily move to place the fault with individuals. This is simple, but wrong. Healthcare staff face increasing demand and complexity, in the absence of increased funding and effective systems and processes. These challenges were present before the pandemic, and have been exacerbated by it. The time to properly consider complex issues is increasingly squeezed away. In such rationed contexts, lines are drawn: we will do this, we won’t do that. And into the gaps between these lines can fall people like P. 

Holding these reflections in mind, I welcomed Hayden J’s comments that the hearing had been “in some ways quite a disturbing experience”. It was reassuring to me that those who hear such stories regularly are not immune to the emotions they evoke. He noted that he would not be making criticisms in a written judgment at this point, as he wished to keep the focus on P’s needs, but this would certainly not preclude him from doing so in future. 

The skill with which Hayden J communicated with all parties, highlighting weaknesses to be addressed without meandering into unnecessarily assigning blame, such that all parties could remain focused on P, was remarkable to witness. In effect, he modelled the role that the proposed clinical lead would need to take. Nevertheless, it seemed clear he would not countenance any further lack of action on the part of the healthcare provider. I left the hearing with a profound sense of gratitude that there are those who will advocate with absolute clarity for the rights of P to be respected, and to promote his quality of life going forwards. 

Dr Gaby Parker is a Consultant Clinical Neuropsychologist with Central London Community Healthcare NHS Trust, and has an independent medicolegal practice with Allied Neuro Therapy Ltd. She has a specialist interest in complex interdisciplinary community neurorehabilitation and mental capacity following acquired brain injuries. She tweets @gabyvparker


[1] It is acknowledged that many people with lived experience and/or who practice within mental health fields disagree with the use of ‘personality disorder’ to describe psychological experiences. It is included here as this was the term used during the hearing. For further commentary on the use of ‘personality disorder’ within the COP, see Keir Harding’s contribution to the Open Justice blog: What does the Court of Protection need to know about “borderline personality disorder”? – Promoting Open Justice in the Court of Protection (openjusticecourtofprotection.org)

[2] We are not permitted to audio-record hearings, so quotations are based on notes taken at the time and are unlikely to be verbatim.  They are as close as possible to what was said.  My thanks to Celia Kitzinger who supplied these direct quotes.

Image by Hans-Peter Gauster via Unsplash

Keeping Mum in her own home: Deprivation of Liberty and Powers of Attorney for health and welfare

By Celia Kitzinger, 28th June 2021

Update: I’m informed that the next hearing for this case (previously listed for 2nd July 2021) has now been vacated, and is re-listed for 4th August 2021 at 3pm. We will post information about how to observe on our home page in due course.

Most of the hearings we blog about originate from judges who are based either in the Royal Courts of Justice, or in First Avenue House in London.  It’s much harder to observe hearings in the regional courts.

It’s more difficult to find out about the hearings (it takes trawling through CourtServe) and it can also be challenging to gain access, not least because judges in the regions – especially District Judges – seem to be less well supported administratively.  We’ve found that emails sometimes don’t get forwarded to the judge,  and even when they do, the time it takes to add yet another person to a conference call can sometimes be just too much of a burden.

So, I was pleased to be granted access to a telephone hearing before District Judge Stone in the County Court at Barrow in Furness at 3.00pm on 7th June 2021.  I chose this particular case (COP 13759851) because it’s in Cumbria, where I live – and also because (unusually for CourtServe listings) the entry included the issues to be addressed: “Welfare – Residence & Care”.  

I received a response to my emailed request, sent to the Manchester hub, within two minutes (!) from a member of the court staff who said, “No worries I will just send this request over to the local court.” Twenty minutes later, I was sent an email from Barrow County Court, attaching something that purported to be a transparency order (it was actually a remote hearings order) and asking me to confirm my telephone number.  At 3.10pm the phone rang, and DJ Stone welcomed me to the hearing.

The hearing

It was (as most hearings I observe are) a directions hearing, i.e. a hearing for the judge to review the case and consider whether there needs to be further information or action taken by the parties, before a final hearing at which the judge makes a final decision based on all the evidence, reports and all the points put forward by both parties.  (For more information on types of hearing see this Guide.). I’m pretty sure, from what I heard, that this was the first ever court hearing about this case.  

It concerned a person (P) with dementia, of whom the representative for the local authority (I think a solicitor, rather than a barrister) said: “the dementia is quite advanced and there’s no capacity at all with this lady”.  

She lives at home and is cared for (via direct payments) largely by her daughters (and, I think it was said) her next-door neighbour.  They spend a lot of time at P’s home. 

The local authority has brought this case to court because they have recently become aware of the “restrictions” that P is subject to.  Due to her dementia, she is unsafe leaving the home alone, and there have been real concerns in the past when she’s gone out and then  “been found in circumstances that could have been very detrimental” (judge).  So, the doors of P’s house are locked and she cannot leave on her own.  Cameras have been set up inside the home too, again with the aim of keeping her safe.  

This, said the representative for the local authority, amounts to a deprivation of liberty following the Cheshire West ruling: i.e. P is under continuous supervision and control and she is not free to leave the place in which she is residing.

The local authority representative appreciated that the motives of the daughters were to “facilitate P’s independence”: “They are trying to do the right thing by having this lady live in her own home as long as possible”.  Later she reiterated, “They are doing everything they can to keep Mum in her own home”.

But they were concerned that this arrangement may not constitute the least restrictive option for P.  Also, they had asked the daughters what ‘emergency plan’ was in place in the event that P needed to leave her home quickly (e.g. fire) and the answer was “not forthcoming”.  They reported a “lack of information from the family”. 

Both daughters had confirmed that they didn’t want to attend the hearing or be joined as parties – despite holding Lasting Power of Attorney for both financial decisions and for health and welfare.  The local authority representative expressed the view that they would prefer the attorney-daughters to be parties “to make joint working easier”.  

The judge said that “Family members are clearly doing their best to ensure P can remain in her own home, given the distress they believe she would feel if forced to move to other accommodation.  But they have set up a situation that may amount to a deprivation of liberty, and so it is necessary for the court to obtain full information”.  

The judge made an interim order (s. 48 MCA 2005) that there was reason to believe that P lacks capacity to litigate and to make her own decision about where to live.  A social worker was present in court and I believe she had assessed P’s capacity and completed a “COP 3”.  

The judge also made directions inviting the Official Solicitor to act as P’s litigation friend.  The representative from the local authority remarked that  “the last request for the Official Solicitor got lost in London”, leading to some discussion as to how to ensure that the matter is dealt with efficiently this time.  

The judge said that the “current care arrangements can continue until further consideration of the evidence” and listed another hearing on Monday 28th June at 11.30am, via BT MeetMe, for one hour and 30 minutes.  He emphasised that the case was “urgent” and that a decision could not be delayed.

Before that hearing, there is supposed to be a roundtable meeting, and “a continued invitation to the daughters to attend the hearing, so they can understand the decisions the court is being asked to make on behalf of their mother”.  

A personal reflection

If I were to lose capacity in the future, I want someone who knows me well to be the designated decision-maker. For me, this would be self-evidently preferable to decisions made by Court of Protection judges who don’t know me, my values, the way I’ve lived my life and the things that matter to me. And so I have appointed my wife and (if she is unavailable to act) my sister with Lasting Powers of Attorney for Health and Welfare. They know my wishes and beliefs very well, and would weigh them heavily in any best interests decision they had to make about me.

Also, several family members have chosen me to act as their attorney for health and welfare if they were to lose capacity to make their own decisions.

So I was alert in this case to the apparent limits of the daughters’ powers, as attorneys, to make the decision to deprive their mother of her liberty in her own home. This has implications for anyone who has appointed someone to act as their attorney and/or is the designated attorney for someone else.

The court did not actually explicitly discuss the relationship between Lasting Power of Attorney and Deprivation of Liberty – but it was clear that the judge took for granted that decisions concerning deprivation of liberty (like locked doors and cameras in the home) were decisions that properly fell to him, and not to the daughter-attorneys.

I did some research to find out more about this after the hearing, and I’m still not entirely clear about why or how the decision-making powers of attorneys are restricted in relation to deprivation of liberty – although it’s clear that they are.

So, even if someone has given me clear and strongly-worded directions that I am to keep them out of a care home at all costs – which might include locking them inside their home and using video-cameras to keep them safe – I gathered from this hearing that I’m probably not able to do that without the Court of Protection getting involved.

The ever-helpful Alex Ruck Keene explains it like this:

… it is important to note that it is not possible for a donor to ‘opt out’ of DOLS by providing that an attorney can consent on their behalf to the deprivation of liberty, and any attempt to include such a provision in the instrument is likely to end up being struck out upon the Public Guardian’s application to the Court of Protection (see the unreported decision of Senior Judge Lush in Re Stewart).   So even if the attorney considers that the arrangements are in the person’s best interests, and what the person would have wished, this does not obviate the need for the DOLS authorisation procedure to be invoked.  The courts have not decided whether the ‘substituted consent’ of an attorney would also obviate the need for an application to the Court of Protection in the context of a deprivation of liberty taking place outside a care home or hospital, but the decision in Birmingham City Council v D  would suggest that a court would approach such a proposition with considerable caution.” (Alex Ruck Keene, “Powers of attorney, care homes, best interests and deprivation of liberty”, March 7th 2016, Mental Capacity Law and Policy Blog)

This hearing prompted the realisation that it would probably be helpful to the person I have appointed as my own attorney to have something in writing from me, making clear my current (capacitous) views on the matter of depriving me of my liberty.  So. I have now written a short piece expressing my values, wishes, feelings and beliefs about a possible incapacitous future in an institutional setting vs. in my own home.  If my attorney is required to contribute to best interests decisions about where I should live and/or whether I should be deprived of my liberty, she will need to show that she is taking into account my own views on the matter: a record of my position on the weight I give to being safe and protected, vs. being free and at risk of harm would (I hope) help to support the decision-making process. I have also requested the people for whom I might find myself acting as attorney in the future to do likewise.

Meanwhile, I look forward to the next hearing in this case.

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

Photo by phil cruz on Unsplash

“You can’t ask the High Court to turn a blind eye to illegal detention”

By Claire Martin, 25th June 2021

A man with Alzheimer’s disease, FS, was living with, and being cared for by, his daughter until mid-April this year when he “became poorly” and was admitted to hospital for treatment.  

A few weeks later, when he was ready for discharge from hospital, on 12th May 2021, the professionals held a best interests meeting (not attended by FS’s daughter) and decided that he needed to go to a care home. That’s where he’s been living for the last four weeks. 

His daughter does not agree with this decision. She wants him to return home, where she’ll be the primary carer, with some help from professional carers. 

He’s still in the care home without (at the time of the hearing) a standard authorisation for the deprivation of his liberty.

FS’s daughter made an application to court to get her father home again, and the first hearing of her case (COP 13751629 ) was before Mrs Justice Lieven on Monday 7th June 2021 via MS Teams. It lasted for about an hour. 

The hearing

The applicant, the daughter, had succeeded (eventually) in getting legal aid and was represented at this hearing by barrister Ben McCormack. The Local Authority was represented by Emma Waldron.

Normally, when there is a disagreement about where someone should live, and an argument that the person is unlawfully deprived of their liberty, the case comes before the court as a s.21A application.  But in this case the daughter couldn’t make a s21A application (challenging a DoLS Standard Authorisation) because no standard authorisation had been made!

There were various problems with the organisation of this hearing: there were no position statements, and an order had gone astray, so neither the CCG nor FS himself were represented at this hearing. Clearly, the decision about where FS should live would have to be delayed (“I am not going to be able to safely discharge FS today” said the judge).

There was a suggestion that the whole thing could be sorted outside of court.  It seemed that Mrs Justice Lieven hoped initially to avoid what she called “a massive piece of litigation”, saying “we may be able to cut through this … and can just get FS back home with his daughter and a support package”.  Addressing Emma Waldron, she  asked: 

What triggered all of this? [Daughter] was looking after [FS] for years – with no concerns. I understand there were some relatively standard  tensions to do with COVID and tensions between professional carers and the daughter. But it all seems to have escalated in ways I don’t understand. The obvious thing when he was fit to be discharged was for him to go home with a care package. Why didn’t that happen?”

Nobody seemed to know the answer to that question.  Counsel for the LA, Emma Waldron said:

I am not in a position to answer that. I need a witness statement from the Social Worker. There is some suggestion that [FS’s] needs had changed.”

Later she added:

The LA hasn’t had a significant amount of time to consider. … There has been no proper assessment of [FS’s] current needs. He is awaiting a CHC [Continuing Health Care] assessment via the CCG [Clinical Commissioning Group] – then the LA can conduct their own assessments.”

So, it’s not at all clear how this situation has arisen.

At another point in the hearing Mrs Justice Lieven described it as “a pretty minor falling out that has led to a quite inappropriate level of legalisation”.

This seems an inappropriate escalation. I would so much rather the money the Local Authorities spend on barristers and solicitors in cases like this, got spent on the care of elderly people! Think how many care workers could be paid with what a half-day hearing in the High Court costs!”

In the meantime, as Ben McCormack starkly reminded the court:

All parties agree that [FS] is deprived of his liberty in the care home There is no authorisation in place at present. As we sit here today, he’s unlawfully deprived of his liberty.”

 The judge asked whether FS’s daughter had been able to see her father at the care home:

Ben McCormack: No, she’s very nervous about the position she’s been put in – all of a sudden, after many years of caring for her dad, then suddenly safeguarding alerts. A cloud of suspicion has been placed over her and she’s not sure what that cloud of suspicion contains.

Given that there is no standard authorisation for deprivation of liberty in place, there’s nothing – in principle – to stop FS from leaving.  As the judge said to counsel for the daughter: “If they don’t issue a standard authorisation, your client is legally and morally within her rights to walk in and say ‘okay Dad, let’s go home’”.  She noted that FS’s daughter had been very reasonable and “sensible” in that she “hasn’t tried to walk in and grab the wheelchair and take him home”.  

But, she added, “the LA needs to decide very quickly whether or not to make a standard authorisation”. Turning to counsel for the LA she said, “You really need to do something about this standard authorisation, don’t you.  You’re wide open to a deprivation of liberty claim”.  

Emma Waldron stated that the LA was aware of this and it “was being looked at as a matter of urgency”.  

Judge: You have to do better than that.  You can’t ask the High Court to turn a blind eye to illegal detention. If this was an immigration case, I would be letting him out now. You can’t unlawfully detain people in the UK. You’ve got four days to sort this out. If the situation is that  he should just go home – then just do it. I’m not going to order you to do it because I haven’t got the evidence.” [Judge’s emphases] 

Judge (addressing Ben McCormack): “At 4pm on 10th June – if you’ve not got the standard authorisation, I will set him free. You can’t just exist in this extraordinary world where he’s being deprived of his liberty but no one seems to care very much.  Just because he’s old and infirm does not mean you can deprive him of his liberty!

On behalf of FS’s daughter, Ben McCormack asked for a “tight timetable” moving forwards.  Given that a needs assessment was required, and the Official Solicitor needed to be engaged to act on behalf of FS, the next hearing would be not next week, as the judge initially hoped (“to bang some heads together”), but the following week, on 24th June. Unless, of course, it is resolved out of court as HHJ Lieven would prefer. It did not appear on the court listings for 24thJune 2021.

Reflections

This was a disturbing case with powerful comments from judge. As she stated: “Just because he’s old and infirm does not mean you can deprive him of his liberty.”  This seems to be what had happened. I did wonder whether the care teams were not discussing their concerns about his needs and care with FS’ daughter: how could it have come to this, where she did not understand why she was under a ‘cloud of suspicion’

Mrs Justice Lieven is a wonderfully plain-speaking judge and she made her views about this case very clear.  She was remarkably straight-talking in her assessment of how this case had even reached court. She was clearly unimpressed with how the public bodies had conducted, and continued to conduct, themselves. 

Best interests meeting without daughter

I was shocked that the best interests (or ‘professionals’) meeting, and subsequent transfer of FS to a care home had happened without the inclusion of his daughter (his main carer), as required by the Mental Capacity Act 2005  s4(7) when deciding someone’s best interests. She was at the hearing with her solicitor and was clearly fully engaged in her father’s care. It wasn’t discussed at the hearing why she had not been involved in these decisions. 

No Standard Authorisation for Deprivation of Liberty

Care systems are so familiar now with Deprivation of Liberty Safeguards requirements, and the Court of Protection is open 24 hours a day, 365 days a year for emergency applications. Someone (or some people), somewhere, must have decided to prevent FS from returning home without following the legal procedure. 

They might have had serious concerns about him returning home, though the Judge didn’t appear to think that anything sinister was going on with the daughter’s care of FS. 

It felt as if this was happening to FS simply because it could. This is really worrying. If FS’ daughter had not responded in the way she had, would FS remain unlawfully deprived of his liberty now? Would other, less restrictive, options remain unconsidered? It made me wonder how often this situation might happen – I have no idea, but if the only ones shouting about it are relatives who are not happy, then it means that many professionals remain silent when they must know that the law is not being followed. Is this a resourcing issue? Professionals with too high a workload leading to mistakes and oversight, rather than deliberate over-riding of legal procedure? For FS though, it was a fact that his daughter had questioned the decision and so the issue was evident to the professionals involved. It feels like a parlous state of affairs. 

Causing harm?

There are many questions bouncing around about this. We didn’t have any evidence from the public bodies about their decision-making process regarding FS’ care needs. Notwithstanding the illegal detention aspect of FS’s care, it was impossible at this hearing to form a picture of his needs, concerns about, and options for, his care. As noted though, the judge did not express any concerns about the quality of care FS’s daughter provided – comments relating to living at home focused on needing additional carer support. 

If it was the situation that the care teams had simply run out of time to complete their assessments, rather than having clear evidence of a change in FS’s needs such that they could not be met at home) then the decision taken to move him to another, unfamiliar, environment risked a traumatic process for FS that could have caused further, iatrogenic, harm. 

Did the hospital or Local Authority demonstrate that they had understood, retained and weighed up the costs/benefits of a decision of a further move, to a care home, for a man with dementia versus returning to his home? Is any balancing documented, with consideration that a second change of environment could be detrimental, physically and psychologically, for him? Could any assessments required have been completed within his home environment (arguably an optimal setting, regarding familiarity and comfort), therefore representing a less restrictive option? 

It is known that a move of environment for people with dementia can bring unintended, adverse consequences. This literature review  from The Gerontologist in 2019 [Health Effects of the Relocation of Patients with Dementia: A Scoping Review to Inform Medical and Policy Decision-Making] states:

The effects of relocation were discussed in terms of mortality and morbidity. In most studies, the health effects of the relocation of older adults suffering from dementia were negative. A decline in physical, mental, behavioral [sic.], and functional well-being was reported. The most recurring effect was a higher level of stress, which is more problematic for patients with dementia. In general, unless it is carefully planned, it is best to avoid changing lives of people with dementia and it is recommended to actively work to reduce their exposure to stress.”

NICE guidelines for hospital care for people with dementia acknowledge that:

Hospital admission can trigger distress, confusion and delirium for someone with dementia. This can contribute to a decline in functioning and a reduced ability to return home to independent living. Over recent years there have been a range of initiatives on improving the experience and outcomes of hospital care for people with dementia, such as the National Dementia Action Alliance and Dementia Friendly Hospitals Charter

And further NICE guidelines regarding discharge from hospital for people with dementia state: 

“1.5.10 Ensure continuity of care for people being transferred from hospital, particularly older people who may be confused or who have dementia. For more information on continuity of care see the recommendations in section 1.4 of NICE’s guideline on patient experience in adult NHS services.”

So, it is known that a change of environment can have deleterious effects for people with dementia. Is it possible that a ‘change in [FS’s] needs’ could have been occasioned by the fact that he had been in hospital? And that a return home, to a familiar environment within the relational space of being cared for by someone who loves him, might have been helpfulwith the assessment of his potentially changing needs?  I am speculating here – but we had no information of the actual concerns about FS returning home. 

In the absence of any serious safeguarding concerns that explain what happened, this looks like a situation where the ‘system’ has, probably little by little, in a mission creep process, occupied an unreflective ‘doing to’ role in relation to FS and his daughter. People perhaps hadn’t reckoned on his daughter’s tenacity. Though it’s probably more likely that they didn’t really think they were doing anything wrong – ‘best interests’ as in ‘what I think is best’, in a theoretical, ‘objective’ way, rather than a legal (and inclusive) process following ‘what is best, least restrictive option,  for this person, given how they have lived their life, their values and relationships’. 

Claire Martin is Consultant Clinical Psychologist, Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust, Older People’s Clinical Psychology Department, Gateshead. She is a member of the core group of the Open Justice Court of Protection Project and has published several blog posts for the Project about hearings she’s observed (e.g. here and here). She tweets @DocCMartin

Urgency, delayed decision-making and ethics in the Court of Protection

By Dominic Wilkinson, 24th June 2021

On 11th June 2021,  I was a public observer (via MS Teams) of a case in the Court of Protection: Case No. 1375980T Re GU (also blogged about by Jenny Kitzinger here).

The case was (though I did not know it beforehand) related closely to issues that I have written about over a number of years (for example hereherehere ). It was an urgent hearing before Mr Justice Hayden concerning clinically-assisted nutrition and hydration (CANH) for a 70 year old man, GU, who has been in a prolonged disorder of consciousness for seven years.

I have read the judgments from many similar cases in the UK, from the first ever case concerning a feeding tube for a vegetative patient heard in (what is now) the Supreme Court in 1992 (the case of  Tony Bland, injured in the Hillsborough football stadium disaster), through to the most recent Supreme Court case of Re. Y, at which the court ruled that it is not mandatory to bring cases concerning CANH-withdrawal to court unless there is disagreement about best interests, or the decision is finely balanced (report here). I’m also familiar with the judgments in other jurisdictions (e.g. Schiavo in the USA,  Lambert in France) and have been involved in deliberation in clinical ethics committees about cases with similar features.

Yet, this was my first time hearing open deliberations in the Court of Protection. It was a fascinating and thought-provoking experience.

Background: The case of GU

Right at the start of the hearing, the court heard the moving and tragic story of the events leading up to this point.  Seven years previously, GU had been electrocuted while cleaning a pond in his home overseas. Dragged out of the water and rushed by car to a hospital some distance away, GU had suffered a cardiac arrest and severe hypoxic brain injury. He was repatriated to the UK, and has remained ever since in a specialised rehabilitation facility and nursing home.

GU has been stable for many years. His doctors agree that he remains in a permanent vegetative state and will not improve. Three years ago, after reading about the Re Y case, some of GU’s family expressed a view to his treating doctors that the treatment keeping him alive (clinically-assisted nutrition and hydration) should be withdrawn. However, the doctors were aware that one family member did not agree to this – which under the Re Y ruling would mean a mandatory court hearing. The hospital did not host a best interests meeting, and nor was any application to the court made.

Three years later, the Clinical Commissioning Group brought the case to the Court of Protection for an urgent hearing.

The central ethical issues in this case relate to two relatively familiar questions. First, is it in the best interests of a patient in a prolonged vegetative state to continue life-prolonging treatment (where there is evidence that they would not have wished to be maintained in such a state?)  Second, is it permissible to withdraw clinically-assisted nutrition and hydration, anticipating that the patient will die as a consequence? 

These ethical questions are settled in UK law as general principles. As they related to GU in particular,  the answers were reached relatively quickly:  no, it was not in his interests, yes it was permissible. But I will focus for most of this blog on a different issue, raised right at the start of the hearing, and recurring throughout.  Where such questions arise for a patient in a prolonged disorder of consciousness, is it urgent that they are heard and decisions reached by the court, and if so, why? 

Urgency

At the start of this hearing Mr Justice Hayden noted that he was hearing the case on the urgent and emergency applications list. There is usually a relatively long wait for cases to be heard in the Court of Protection, often a matter of several months. But it is possible to apply for an emergency order if “it is a serious matter with an unavoidable time limit”. For example, that can relate to urgent life and death decisions. On the morning of the first day, Mr Justice Hayden indicated that the circumstances were so urgent that not only did he plan to hear the case on the emergency list as a ‘final’ hearing and not simply as a ‘directions’ hearing (as it was listed), but he would, if possible, aim to reach a conclusion on the same day. (In the event, he delivered his judgment the next day.)

One of reasons given for aiming for a speedy determination of the issues was the impression that there had been undue delay at a prior stage in applying for a court determination of GU’s best interests. There was a strong suggestion by one of the expert witnesses, Professor Wade, that “there had been an inordinate delay” and that there  should have been an application to the court three years earlier. In fact, it seemed that the lack of appropriate urgency at an earlier stage was a significant factor in the perceived urgency of reaching a decision now. Mr Justice Hayden noted that “one day more is one day too many”.

One reason that some might be puzzled by the urgent nature of the hearing is that GU’s clinical state is completely static. His condition this month is the same as a month ago, as six months ago, as two years ago. Not only that, but given GU’s diagnosis of the most severe form of prolonged disorder of consciousness, there was little or no suspicion that he was perceiving any pain or discomfort (though this could also not be ruled out). 

At the start of the hearing, Mr Justice Hayden remarked that “It is sometimes implied that if a patient is in a vegetative state (rather than some higher level of consciousness) it does not matter if there is a delay”. However, he rejected that view. Speaking to the brother and son of GU (who had different views about GU’s treatment), Mr Justice Hayden was keen to separate the question of the urgency of the decision from the actual decision itself. He suggested that whatever decision was reached by the court, whether to continue or to discontinue treatment, it was in GU’s best interests to reach that decision urgently.  

It is relatively obvious why that might be the case if treatment were not in GU’s interests. It could be a harm to GU to prolong his life. Moreover, that harm could be aggravated by delay. 

But on the other hand, if it is in GU’s interests that treatment continue, it does not seem in any way urgent (for GU’s sake) to formally reach a best interests decision that confirms that. After all, in that case nothing about GU’s treatment would change.

So, one concern might be that perceived urgency in cases like this is not independent of the conclusion. Where there are different views, potentially only one side has reason to have the case heard urgently. (Indeed, in some situations those parties who are advocating continued treatment may have reason to want the case to be delayed, in case the decision goes against them (this did not appear to particularly apply to GU)).

There are, however, two ‘independent’ or neutral reasons in favour of urgency. We can apply these reasons without having to (or before having to) take a side in the dispute about treatment.

One reason is in terms of an asymmetry of harms. As noted above, if treatment should be stopped, delay is a harm. If treatment should not be stopped, an early decision is not a harm. Because of that, the least harmful approach is to aim for earlier decisions if possible. (One important practical consideration is that there can be greater uncertainty early after an acute brain injury. Sufficient time may need to have passed in order to assess whether the patient will improve and to gather information to be confident of their clinical state – for example the level of severity of their prolonged disorder of consciousness). That obviously did not apply to GU, since three years ago (and potentially as long ago as 6 years ago) ample time had passed since his original event.

The second independent reason is on the basis of family wellbeing, and the deleterious consequences of prolonged disagreement. In GU’s case, it was clear that the one dissenting family member (GU’s son) had found his relationship with the rest of the extended family seriously damaged as a result of their disagreement. Mr Justice Hayden was at pains to express a hope that reaching a best interests decision for GU would enable the rifts within the family to begin to heal. If we assume that in most cases patients will not want their family to be fighting, it would potentially be in a patient’s best interests to have any disagreements over their treatment resolved as quickly as possible.

Harm, dignity and autonomy

These two reasons suggest that it would be better to reach a decision sooner rather than later. That was the basis for Mr Justice Hayden’s concern about the delay in decision-making for GU. At one point, the expert witness expressed a view that the Hospital had chosen to “put their head in the sand” rather than confront the question of GU’s best interests and potential withdrawal of clinically-assisted nutrition and hydration. 

But as an ethicist, I was interested to hear some of the discussion about why it was bad for GU to have been treated with clinically-assisted nutrition and hydration for a prolonged period. 

One reason that was given was because it was possible that GU was suffering pain. There was some discussion about the evidence of awareness of pain in the vegetative state. The general consensus was that P was unlikely to be aware of pain or discomfort. However, this remained a small possibility.

An important reason cited was that continued treatment was contrary to GU’s autonomy. According to the Official Solicitor, there was “unanimity of evidence” that GU would not have wanted to be in this state, and as a consequence it was “an affront to his autonomy and dignity” to continue treatment.

As the previous quote indicates, it was further claimed that this was contrary to GU’s “dignity”. If treatment was not in GU’s interests and was merely prolonging GU’s death it was suggested by Mr Justice Hayden that “many would consider that a compromise of …[GU’s] dignity”.

Finally, it was suggested that a compromise of GU’s dignity constituted “a harm”. There was discussion in the hearing about the oft-cited principle of medical ethics “do no harm”, and therefore the implication that continued treatment of GU was contrary to this principle.

What was interesting about this discussion from an ethical point of view is that three different ethical concepts were referred to as grounding concern about prolonged (unwanted) treatment: “autonomy”, “dignity”, “harm”. They were cited as though the different words gave extra weight to the wrongness of what had been done to GU. This, and that, and this other thing. Three different reasons for concern. And yet it was not clear (to me) that they were referring to separate elements. Rather, they all seemed to be dependent on the single central ethical consideration – which was that GU would not have wanted to live in his current state.

Some of the deployment of these concepts appeared at times paradoxical. For example, there was recurrent suggestion that GU’s dignity had been compromised by the delay. And yet, Mr Justice Hayden was also at pains to note that GU’s general nursing and care at his long-term nursing facility had been of the highest quality. He said that GU “had been living in dignity”. So, was dignity preserved or not?

Ethics in the court of protection

One of the most interesting elements to me was the extent of the debate about primarily ethical questions in this hearing. There was in fact, relatively little discussion or debate about questions of law. That may have reflected the fact that this hearing did not raise any new questions of law, and the lawyers present (representing the clinical commissioning group and GU via the Official Solicitor) were in agreement. The disagreement was coming from one family member who was an ‘interested party’, but was unrepresented.

But to the extent that ethical questions and concepts were central to the hearing, it also seemed that there would have been value in having some specific ethical expertise available. Such expertise isn’t (primarily) about identifying the right answer to what should happen for the person at the centre of the case. Instead, it would draw on the skills that are relevant to clinical ethics in committees or on the wards: clarifying concepts, identifying and weighing relevant considerations and arguments, making important distinctions, deploying thought experiments, drawing on debate and academic literature. For example, a clinical ethicist in this case might have been able to identify the strength of the arguments relating to the urgency of obtaining a best interests determination in cases like that of GU. They might have drawn attention to the value of clarifying and distinguishing concepts like harm, autonomy and dignity. They would also have been able to provide some insight into the relevance of ‘do no harm’ in such cases. 

Academic and clinical ethicists, from the sidelines, have long debated questions relating to medical treatment for patients who are unable to decide for themselves. In England and Wales, they haven’t, or only extremely rarely, been called as expert witnesses. Yet ethics is obviously central to the work of the Court of Protection. And if this hearing is anything to go by, if judges or barristers were willing to call on them, it seems that there could be a place for an ethicist in the courtroom.

Dominic Wilkinson is a Consultant Neonatologist and Professor of Medical Ethics based at the Oxford Uehiro Centre for Practical Ethics  He tweets @Neonatalethics

Photo by Ahmad Dirini on Unsplash

Resolving End-of-Life Treatment Conflicts: Comparing the COP in England to Analogous Mechanisms in Ontario, California, and Texas

By Thaddeus Mason Pope, 23rd June 2021

On Friday June 11 2021, I had the pleasure of watching The Honorable Mr. Justice Hayden deliver judgment in a Court of Protection case involving the withdrawal of life-sustaining treatment. I have been reading Court of Protection judgments for years and have even collected many on my website. But this was my first opportunity to see and hear a senior COP judge. I am grateful to Celia Kitzinger both for helping to raise awareness of the publicly accessible nature of COP hearings and for informing me of this specific proceeding.

I am a law professor based in the United States, though I am presently the Fulbright Canada Research Chair in Health Law, Policy, and Ethics at the University of Ottawa. I have been writing and consulting on end-of-life treatment conflicts for over a decade. Therefore, I want to compare the Court of Protection to analogous dispute resolution mechanisms in Canada and the United States. 

All three mechanisms resolve the small subset of conflicts that are intractable to informal and intramural processes such as mediation and clinical ethics consultation. And while all three mechanisms adjudicate issues other than end-of-life treatment disputes, these may be the most consequential type of case. Below, I compare how each mechanism affords procedural due process in terms of (1) neutrality, (2) transparency, and (3) competence. 

Case No. 1375980T before Mr. Justice Hayden on 10th – 11th  June 2021

While emotionally fraught, the case at issue did not appear legally complicated. The patient, GU, was an incapacitated 70-year-old man. On 14th April 2014, the former pilot had suffered a catastrophic hypoxic brain injury after accidentally electrocuting himself in his garden pond. He has been completely unconscious and unable to interact with his environment ever since. No party disputed that the patient would not have wanted to live in this condition. None of his family believed that he would wish to continue to live in his current situation.  

The primary issue in this case concerned one specific form of life-sustaining treatment: clinically assisted nutrition and hydration (CANH). The patient’s wife, siblings and children all agreed that it is not in GU’s best interests to continue to provide him with CANH. But GU’s son disagreed. He did not want his father to die from dehydration. 

Mr. Justice Hayden ultimately sided with the brother and against the son, ruling that life-sustaining treatment was not in the patient’s best interests and should be withdrawn. But the judge did this only after thoroughly explaining and acknowledging the son’s perspective. Because the lawyers were transcribing his judgment, Mr. Justice Hayden spoke with the slow pace and distinct enunciation of former U.S. President Barak Obama. But this has the perhaps unintended effect of permitting public observers to follow easily. And Mr. Justice Hayden spoke directly to the patient’s son, demonstrating that he had carefully considered the son’s concerns.

Neutrality of Decision Maker

The central element of procedural due process is the independence and neutrality of the decision maker. It is unfair to have a conflict adjudicated by someone who either has a stake in the outcome or has a relationship with one of the parties. The Court of Protection earns top scores on this aspect of procedural due process. Mr. Justice Hayden, like all COP judges has no relationship with the patient, the patient’s family, or the hospital.

The key Canadian analog to the Court of Protection, the Consent and Capacity Board also scores well on this element of procedural due process. In Ontario, conflicts over life-sustaining treatment are often brought to the CCB, a specialized quasi-judicial administrative tribunal. Cases are heard by three member panels: a lawyer, a psychiatrist, and a public member. All members are independent from the parties.

In contrast to the COP and CCB, in California and Texas, intractable end-of-life treatment conflicts are typically adjudicated by hospital ethics committees or medical appropriateness review committees rather than by a court or quasi-judicial tribunal. Coincidentally, I participated as a voting member on such a committee on the same day that I observed the COP hearing. Most or all members of hospital ethics committees are employed by or otherwise affiliated with the same hospital that is treating the patient. These committee members are not neutral and independent. Indeed, a massive 150-page appellate decision recently challenged the legitimacy of these committees for this reason.

Transparency of Proceedings and Judgment

Like neutrality, transparency is a core element of procedural due process. The Court of Protection operates in an admirably open and transparent manner. First, the proceedings themselves are open to the public, and have regularly attracted Public Observers since the pandemic forced hearings to be held remotely (rather than solely in court buildings) and led to the forming of the Open Justice Court of Protection Project. Hearings before Mr. Justice Hayden are especially well attended by Observers. Second, Mr. Justice Hayden carefully, lucidly, and compassionately explained the reasons for his decision not only to the parties but also to the public observers. Third, Mr. Justice Hayden will later publish a written version of the judgment he delivered orally. This is typical. The Court of Protection regularly prepares written judgments offering reasoning and justification for decisions, and these are publicly available on BAILII.

The Ontario CCB is somewhat less open and transparent than the COP. While the CCB publishes written decisions that are publicly available on CANLII, its evidence gathering proceedings are not open to the public. But starkly different from both the COP and CCB, hospital ethics committees in California and Texas operate with the least openness and transparency. No aspect of their proceedings is observable by the public. Nor do hospital ethics committees prepare written decisions that are publicly available. Moreover, while the parties may get a letter explaining the committee’s decision, these are typically only a single page, offering far less reasoning and explanation than the COP or CCB. While some level of secrecy may be required by U.S. healthcare privacy laws, there is not even a database of redacted anonymized decisions. And while COP and CCB judgments are regularly reviewed by appellate tribunals, hospital ethics committee judgments are almost never judicially reviewed.

Competence of Decision Maker

The Honorable Mr. Justice Hayden is an experienced professional judge. This was apparent in his formal and eloquent manner. Moreover, the Court of Protection has extensive rules for evidentiary submissions, arguments, and other matters. These assure that the matter is carefully and fairly investigated, explored, and assessed. 

Still, some of what I observed is surely specific to Mr. Justice Hayden. He visited the patient in person early on the morning after the main body of the hearing and before delivering his judgment. Mr. Justice Hayden did this even though the patient was unconscious and unable to participate in the proceedings. And he described the scene as if he were writing a novel or painting a picture. Mr. Justice Hayden colorfully described the patient’s room, the garden below, and the even nurses caring for the patient. He apparently did this for the benefit of family who live in various countries around the world, unable to visit the patient because of the pandemic. Mr. Justice Hayden clearly paused to absorb and reflect on the incapacitated patient whom he was charged with protecting. This helped convey how seriously the judge approaches his solemn task. 

While the members of Ontario CCB panels are not professional judges, they are vetted and trained. And like the COP, the CCB also operates under rules of practice. In contrast, hospital ethics committees in California and Texas are comprised primarily or entirely of clinicians at the hospital. They receive little or no training in dispute resolution. And there are no rules that dictate substantive or procedural standards. Consequently, hospital ethics committees are unconstrained both in how they run the proceedings and in how they reach decisions.

Conclusion

I am grateful to the Open Justice Court of Protection Project for making it possible for me (an American in Ottawa) to be a public observer in the (virtual) court. I have a deepened respect for the COP and will help other jurisdictions view it as a model dispute resolution mechanism.

Thaddeus Mason Pope is a law professor at Mitchell Hamline School of Law in Minnesota USA. He is currently the Fulbright Canada Research Chair in Health Law, Policy, and Ethics at the University of Ottawa. He tweets @ThaddeusPope. 

Photo by Macu ic on Unsplash

Clinically-assisted nutrition and hydration: Decisions that cannot be ignored or delayed

By Jenny Kitzinger, 23rd June 2021

Hearings in the Court of Protection often bring crucial issues into sharp relief in a vivid, poignant and intellectually rigorous way. 

This was certainly so in the hearing I observed last weekCase No. 1375980T on 10 June 2021. It concerned GU, a 70-year-old man who sustained a severe anoxic brain injury in April 2014 following electrocution, a cardiac arrest and possible drowning. He has been unconscious ever since and there is no prospect of recovery. His wife, siblings and adult children all agree he would not want to live like this.  All but one family member – the patient’s eldest son – believe that clinically-assisted nutrition and hydration (CANH) should be stopped. 

The application to address whether or not continuing CANH was in GU’s best interests was brought by the Clinical Commissioning Group that commissions GU’s care (represented in court by barrister Mungo Wenban-Smith of 39 Essex Chambers). Two of GU’s family members (his brother and his eldest son) were also in court as litigants in person. GU himself was represented by the Official Solicitor (the barrister was Debra Powell QC of Serjeants’ Inn). Unusually, the hospital where GU has been treated since September 2014 was not in court and was not the applicant in this case. 

Originally, the hearing on the 10th June was scheduled as a one-hour directions hearing. However, Mr Justice Hayden, noted that even a cursory glance at the paperwork had led him to consider that the case was “ready to be heard and had been for some time”. Because “delay can be inimical to the welfare and best interests of a protected party” he wanted to move to a full hearing immediately. The priority given to this, and the flexibility of the Court of Protection and everyone involved, was illustrated by the rapid move to clear diaries and rearrange plans. 

Once the full hearing was convened, the court heard evidence from an independent clinical expert, Professor Wade, a neuro-rehabilitation consultant. He informed the court that GU was almost certainly completely unaware of himself and his environment and had been for seven years. GU was being treated at a recognised centre of excellence and had received first class physical care. There were no reversible causes of his lack of consciousness. None of those who saw him regularly as part of their work on the ward had ever noticed any interaction or any response to suggest awareness. GU had been thoroughly tested using standardised tools such as the “WHIM” (Wessex Head Injury Matrix) and the “CRS-R” (the Coma Recovery Scale – Revised). His life expectancy now might be another 10 years, but there would be no change in his condition.

We then heard from GU’s brother and his son (both of whom also had the opportunity to ask questions of Professor Wade). Between them, these two men conjured up a vivid picture of GU as a talented airline pilot, gregarious and sociable, and someone who had had “a great appetite for life”. Both men were clear in court that, given everything they knew about him, they did not believe GU would want to live in his current state. This view was also supported by written statements from other family members and friends.  

The point of divergence between the patient’s brother and son concerned the appropriateness of clinically-assisted nutrition and hydration. The brother stated that he (and the rest of GU’s family and friends) were clear that it was wrong to continue with this. The son, by contrast, said that it would be wrong to stop it. His father had expected, he said, to “go with a bang” at 36,000 feet while flying a plane – a fate almost the polar opposite, as the judge observed, to his current situation. If there was the option of a fatal injection the son said he would be prepared to give it to his dad himself, but he could not contemplate having any part “in taking away my Dad’s God-given right to food and water”. He is not alone in this: interviews with families of PDoC patients show that many feel the same way. 

Mr Justice Hayden’s skill in hearing these sorts of cases was amply illustrated in the way he handled this situation. He kept the focus on the patient while also showing a great deal of care to the family members present. He said to the son: “I entirely understand and respect both the views you express and the clarity and sincerity with which they are articulated”. When the son declared that it is “my duty to look after my dad”, the judge said it was his responsibility as a judge to think about what GU wanted for himself “not what his son would want to do for him”.  He was also careful to ensure that the son, as litigant in person and as the individual now isolated within the family as a whole, was able to express his point of view in detail and have it fully considered in court. 

Discussion of the morality of discontinuing CANH occupied a large part of the hearing. The son’s arguments were given extensive attention. This included discussion about any potential for pain (and the palliative care measures put in place to try to avoid any such possibility) and how long it might take for a person to die following withdrawal of a feeding tube. Broader ethical considerations were also addressed, including engaging with the son’s experiences of working in Africa (where he’d seen how a child might walk for miles to find water) and reflections on his appeal to the Universal Declaration of Human Rights (enshrining a person’s right to access adequate food).

The judge probed the independent expert to ensure that he addressed the son’s concerns about clinical issues, such as the potential for pain and the likely length of the dying process (estimated to be somewhere between one to three weeks), but acknowledged that the more fundamental concerns were intractable. He commented that the son’s written testimony submitted to the court presented a “brutally intellectually honest opinion”, put forward with “uncompromising integrity”, “legitimately philosophically and morally argued”, presented through a “stark and intelligent articulated perspective”.

Mr Justice Hayden offered to visit GU himself first thing the following morning and to reconvene the court after that. The hearing restarted at noon the next day and, before revealing his decision, the judge took great care to describe his visit to GU to the family – painting a vivid picture of the patient being well cared for by “heroic” and devoted nurses, in a room with a view over a rose garden (“in full and resplendent bloom”). Only then did he deliver his judgment with his conclusion that it was not in GU’s best interests to continue with CANH.

Having heard both the clinical evidence and evidence about the type of man GU had been, Mr Justice Hayden concluded that the current course of treatment was “protracting his death not prolonging his life”. He added:

None of the options available are attractive. He can stay as a husk of the man he once was for a decade (not an attractive way to die). The only other option is what his son would characterise as ‘starvation’ – but its benefit is that it can be palliatively protected and even if it is 21 days, it is not a decade” 

In the oral judgment he said:

“What we are truly contemplating is not the prolongation of his life but how he should be permitted to conclude his life at the end of his days. It’s not a ‘right to die’. It is a facet of how he should live at the end, and for how long”

He stated that CANH should be discontinued as soon as possible, and he hoped the rift in the family would heal and that they could remember GU as he had been before his injury. 

Reflections on delays in assessing GU’s best interests about CANH

Throughout the hearing, and in his oral judgment (a written one is not yet available), the behaviour of the hospital treating GU was repeatedly an issue. There were questions about their behaviour that the hospital was not there to answer. Although he wanted to make sure that the hospital would have the opportunity to make representation in the future, and underlined that the Court of Protection was “non-adversarial” , Mr Justice Hayden clearly wanted to make sense of what had gone wrong. 

Reviewing the evidence presented in the independent report, and hearing from the family, Mr Justice Hayden considered it “highly likely” that GU had been subject to treatment that was not in his best interests for some time and that “what we are doing now should have been undertaken a long time ago”. 

In discussion with the Official Solicitor, the judge explored the possibility that this unjustified treatment may have been going on since at least 2017 or 2018. 

The reason for choosing 2017 as a significant marker since when treatment has been unjustified seemed to be because this was when a series of ceilings of treatment were put in place in discussion with family members – but this discussion may have failed to address the question of the feeding tube. 

The reason 2018 is significant is because this is when the brother, with the support of the rest of the family, most overtly challenged the hospital’s use of CANH. The year 2018 is also significant because this is when the British Medical Association and Royal College of Physicians produced detailed guidelines on decision-making about “Clinically assisted nutrition and hydration for adults who lack the capacity to consent”. These guidelines include clear advice about annual reviews and the importance of consulting families to unpack what the patient themselves might have wanted.

In was also in 2018 that a landmark decision was handed down by the UK Supreme Court An NHS Trust v Y UKSC 46 (‘Re Y’). The Supreme Court ruled that it is not mandatory to seek judicial approval for decisions to withdraw clinically-assisted nutrition and hydration (CANH) from patients in vegetative or minimally conscious states. Instead, a decision to withdraw can be taken by the responsible clinicians so long as robust procedures are followed in accordance with the national guidance on and there is no disagreement about the patient’s best interests. It also made clear that the courts are still available where the patient’s best interests are in dispute, or where the decision is ‘finely balanced’. A family dispute, such as the one evident in this case, would be one clear reason for going to court if the clinicians responsible were unable to resolve this to make a best interests decisions. 

The judge underlined that “It is a principle of medicine never to do harm”. The fact that a family member had moral reservations about withdrawing CANH “does not absolve the hospital from bringing this case quickly. Doctors are not allowed to continue in a way that compromises a person’s dignity.” Mr Justice Hayden also went out of his way to try to be clear about where responsibility lay declaring: “I do not attribute avoidable delay to [eldest son]. His point [concern about CANH-withdrawal] was properly made, nor would it have ever been reasonable to expect him to change his mind.”

 It is the responsibility of clinicians to ensure they any treatment they give is in the best interests of their patients. In expressing his displeasure at the fact that the hospital was not a party to the case, the judge noted “the hospital has deliberately avoided the litigation” and stressed that “The hospital can’t be allowed to hide away from responsibility by not confronting decisions that need to be taken and then not joining legal proceedings”. Avoidance of an issue such as whether or not CANH is in a patient’s best interests “can never be reconcilable with medical ethics”. He said of the hospital, which seemed to have continued CANH by default: “To act in a way that has only one outcome is as ethically compromised as taking the wrong decision: perhaps it’s time to confront that.” 

At one point during the hearing Mr Justice Hayden commented:

 “This is one of the greatest hospitals in the world. If they can’t comply with or choose not to follow the guidelines – if the reality is that they do harm – then we have to find some way of addressing this. What can I do as Vice President of the Court of Protection?’

He concluded however:

 “I draw back from making any further comment because I wish to investigate this further. I do not wish my investigation to be conflated with the individual at the centre of the process.”

Here I, too, will draw back from adding any further comment on the delays – partly because it is important to await the outcome of further investigation and partly because, from 2020, I was myself involved in supporting this family in trying to support the best-interests decision-making processes in this case. What I plan to do in a second blog however, is to contextualise the questions Mr Justice Hayden raised about delays by reflecting on my wider experience of being asked to help in such situations, I will illustrate both some of the good and not so good practice that is happening in units across England and Wales and discuss how this has changed (or not) over the last decade, as case law and professional guidance has evolved.

In the meantime, the message from this hearing is clear. Family concerns about the morality of CANH-withdrawal should be taken very seriously indeed. This does not mean that it is necessarily in the best interests of a patient to continue to provide CANH and it certainly does not mean that clinicians can simply ‘avoid’ making a decision or ‘wait’ in the hope of an emerging family consensus. 

When considering whether to continue or discontinue a treatment,  ‘no decision’ is not an option. All institutions and clinicians working in this area need to be fully familiar with the law and professional guidelines. They need to be sure they are consulting appropriately with the patient’s family and friends and acting in patients’ best interests, taking into account the best available clinical evidence and – crucially – information about the individual’s approach to life, and their values, wishes, feelings and beliefs.

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

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