Risk-averse medical decisions, the right to privacy, and best interests: Video-monitoring Part 3

By Claire Martin, 8th September 2021

On 14th July I observed my third and final hearing about how to make a best interests decision that balances effective monitoring of David’s night-time seizures with his right to privacy.  

The case was heard by HHJ Howells (who has presided over David’s case since 5th March 2020, when the case first came to court) at Wrexham County and Family Court (COP 13575520 Re: B).  I’ve previously blogged about the case here and here

Background to the Case

David (not his real name) is 39 and has a severe learning disability, poorly controlled epilepsy and congenital cerebral palsy with right-sided hemiplegia. David’s consultant neurologist describes his epilepsy as ‘very poorly controlled’ with ‘daily unpredictable seizures’ of ‘multiple different types’. He lives in a care home and receives mixed 1:1 and shared care throughout the week. David enjoys life; he likes cars, going on trains and visiting caravan sites. His parent (her choice of descriptor), a party to the proceedings, lives abroad but has regular contact with him and has always been a part of decisions about his care. 

The key issue for this hearing is how to effectively monitor David’s night-time seizures while also respecting his right to privacy. 

In April 2019, a Visual Monitoring System (VMS) was installed for the purpose of night-time monitoring. Other, less restrictive, means of monitoring seizures were not explored. The VMS was also installed without following a statutory best interests process and David’s parent was not consulted on its installation. 

At the end of the last two-day hearing, on 7th May 2021, Emma Sutton, counsel for David, summarised the parties’ positions and plans before this final hearing. 

Final Hearing – ‘There Remains a Dispute Between Parties’

HHJ Howells summarised each parties’ position:

  1. David’s parent maintained the view that the VMS should be removed immediately and that an ‘appropriate balance’ (of safety and privacy) would be that he can be observed visually every 30-40 minutes throughout the night. 
  2. The position of Counsel for David was that the VMS can, and should, be removed, and that ‘not less than 30-minute’ observations throughout the night should be instated instead. 
  3. Counsel for the Local Authority (Robert Goodwin) remained neutral regarding the VMS and recommended the safeguarding needs of David are a matter for the court.
  4. The position of the Health Board (counsel Anna Tcazynska) was that the VMS is a necessary intrusion and in David’s best interests to ensure his safety and wellbeing, and, on a balancing exercise, is an appropriate interference with his right to privacy. 

A lot of work had clearly been done between the May 2021 and July 2021 hearings. The lead nurse for the Health Board had compiled a costed, comprehensive and realistic options appraisal for the court to consider. HHJ Howells checked that the parties were satisfied that this evidence was factually correct, and that the lead nurse did not (as a consequence) need to be cross-examined. Each party then had the opportunity to provide their closing submissions to the court. 

I wrote thirty-four A4 pages of notes during this hearing. The attention to detail at this hearing was, I thought, an exemplar of meticulous consideration in relation to David’s care, from all parties: 

  • what was the risk of SUDEP (Sudden Unexplained Death in Epilepsy) for David?
  • would an increase in the number of physical checks, in the absence of a VMS, disrupt his sleep?
  • what other technological monitoring devices might be considered?
  • is there evidence that the VMS decreases the likelihood of SUDEP?
  • what is the right balance of safety and privacy for David, given the accepted risks? 

It is tempting to write a very detailed blog, moment-by-moment, to illustrate the care taken with this case. I have now observed over twenty cases in the Court of Protection in the past year – the level of consideration in this case was no different really, though the presence of David’s parent as a party (and, though not an expert witness, as a trained medic herself) added depth and insight to proceedings, that might otherwise have been absent. 

Suffice to say, there was scrupulous exploration of the statistical and individual risk for David of SUDEP (including the commissioning, by David’s litigation friend of a further independent report (accepted by all parties) from SUDEP Action). Recognition was made of the failure to follow a statutory best interests process, and as part of that recognition a full appraisal of options for monitoring seizures was carried out and provided as evidence for this final hearing. 

Instead of a detailed consideration of all aspects of this hearing, I’m going to  focus on two key aspects of the case that I think are pertinent for practitioners in the field (1) Balancing Safety and Privacy, and (2) Risk Averse Practice, and then I’ll summarise in detail HHJ Howell’s judgment.

Balancing Safety and Privacy 

This judge frequently referred to the idea that medicine prioritises ‘safety’ and ‘keeping people alive’.  The implication (and stated suggestion) was that this can sometimes be to the exclusion of other factors. 

David is enjoying life and has thus far been provided with care and treatment to maximise the chance of his remaining alive.  As with any care and treatment, though, their costs and benefits need to be subject to a best interests balancing exercise. In this case, a proper best interests evaluation involves balancing the protection of David’s health and life, with the protection of his other rights. This should have been carried out by the Health Board before introducing the VMS. 

The importance and efficacy of the VMS requires careful consideration – since the more likely it is to protect David against sudden death, the more heavily it will weigh against other considerations.

So, what is the clinical risk of death from Sudden Unexplained Death from Epilepsy [SUDEP] for David, and how efficacious is VMS likely to be in preventing that?

Counsel for David summarised evidence that:

  • “on a general basis, 0.182% of the UK epilepsy population (meaning that 99.8% of the UK epilepsy population will not) suffer SUDEP.”
  • “on a specific basis, there is a 99.5%+ chance that [David] will not suffer SUDEP in any year (evidence of treating clinician and Dr McCorry, expert witness).”
  • and that “… the visual monitoring system is unable to prevent SUDEP as it is not constantly monitored by a member of staff (David currently sharing night time staff on a 2:8 basis) and the Health Board accept that ‘for complete accuracy it will rely on a staff member looking at the monitor continuously’) … and even if it was constantly monitored, the statistics from SUDEP Action highlight that only 50% of deaths (from SUDEP) are potentially avoidable.”

I was left wondering about the consternation and conflicts that providing good care would provoke in those looking after him. The risk of SUDEP for David understandably causes alarm, for all involved in his life. The evidence presented led one to question whether the VMS, as a response to such alarm, was, in reality effective in reducing his risk of SUDEP. Perhaps the balance, on the ground, involved professionals feeling that they had done everything that they conceivably could have, should David have died, instead of objectively increased safety. A different balance: instead of safety vs privacy, feared blame (of professionals) vs privacy?

HHJ Howells: Health professionals are risk-averse – I don’t criticise, their obligation is to keep people alive. My obligation is to look at P in the round’

We learned that David had lived in the same care home for the previous 16 years without a VMS to monitor his seizures. It remained unresolved, even at the conclusion to the case, why his treating clinician had installed a VMS when he did. He suggested that it was due to a letter from David’s GP outlining concerns about increased tonic-clonic seizures (the type of seizure that is linked to increased risk of SUDEP). However, this reasoning was disputed by David’s parent and David’s counsel – and in any event, since the VMS had been installed in April 2019, David had only had one of these types of seizure at night, and it was not clear whether the VMS (or another means) had identified that one seizure.

David’s parent’s view was clear on the balancing of his safety and privacy:

“I’ve known and loved [David] for 40 years. He’s a remarkable human being. He’s become medicalised – he’s become a medical ‘problem’. … The system looks for the easiest way – especially when costs are a factor. Up until now, the Health Board – even in their recent statement – hasn’t addressed my concerns about SUDEP, at all. I’ve had hours of meetings – in none has there been a discussion of my interpretation of the risk. I find that interesting.” [Parent’s emphasis]

She went on to say that in all the years under his treating clinician’s care, there has ‘never been a mention of a camera’ and that ‘over his life, the seizures were far, far worse than currently – at one point 100 a day’. Her exasperation at the reason for the sudden intrusion into her son’s life – given her analysis of the clinical risk – was evident:

“[David] has always had unobserved fits. During the day no camera is used – he is in his room for significant periods of time, playing with his stuff, no staff to observe. I’ve been there when some of the more able clients have alerted staff to his fits. It’s a gross medicalisation of [David] – a frantic desire to protect him at all costs. 

SUDEP is a risk for all people with epilepsy, including others in the home, they are not monitored in this way. The camera has led to people being locked into their views. To backtrack is to compromise what they’ve said. I feel in this case [treating clinician] has allowed himself to be trapped into his view – his professional reputation is on the line. …. [There is] no evidence that the camera has done anythinghere – except court procedures – no evidence it has stopped dangerous seizures or an event leading to a greater risk. 

Intuitively one feels it helps – but there’s no evidence base it reduces risk of SUDEP. I honestly don’t know why [treating clinician] came to that decision – it’s not the GP letter, over the years there’s been many GP letters. It’s not a satisfactory answer. My suggestion – I think he went to a conference and heard a presentation and thought ‘That might be something we could use in this case’. I am very critical of him that he didn’t discuss it with me – he has done in the past. I think there’s a backstory that we will never know. I’m a doctor – I know how hard it is for people to stand back and say ‘no evidence’. I’d ask the court to make a brave decision”.  [Parent’s emphases]

Emma Sutton on behalf of David extended the analysis of the balancing of safety and privacy for David, in particular referring to the Health Board’s submission regarding engagement of Article 8 of the European Convention of Human Rights  (respect for your private and family life). At the start of the hearing, counsel for the Health Board had described her client’s position on this point:

Anna Tcazynska: ….. a 39 year-old man not wanting to be observed. The Health Board acknowledge this. But this is a person who doesn’t have the ordinary experience with privacy. [He’s attended] 1:1 day-to-day – he has drop seizures – so the VMS continues this. He can’t express his views because of his learning disabilities – and because of his significant learning disabilities, would he experience the same level of intrusion?

Judge: You’re saying he’s not disturbed or upset by what, in other circumstances, would be an intrusion…..

Anna Tcazynska: He’s not distressed by the presence of the camera in his room. He’s been shown it and he’s been talked to about it. He doesn’t know what it’s used for. He is given private time during the day. The VMS Is only when he’s asleep.

Emma Sutton, in her submissions as counsel for David, picked apart the Health Board’s reasoning and practice in relation David’s right to privacy:

What would be reasonable for a 39 year-old man every night in his bedroom? … The litigation friend, on behalf of [David], has struggled with this – it’s not a situation where [David’s] wishes and feelings can be ascertained as he is non-verbal – it’s the obvious issue of an individual’s privacy, every night. Masturbation is raised as a ‘privacy issue’ – the Health Board raises privacy but the lead nurse’s last statement is troubling, she says: ‘[David] doesn’t seem to be embarrassed at all if walked in on whilst masturbating’. He can’t express a problem because of his conditions – his inability to provide such an expression does not mean that he is not still entitled to the same protection of his human rights.”

She went on to reference Mr Justice Jackson’s judgment – in Wye Valley NHS Trust v Mr B [2015] EWCOP 60 ( there’s a helpful summary  here, by Alex Ruck-Keene), quoting a key line in that judgment: 

11. This is not an academic issue, but a necessary protection for the rights of people with disabilities. As the Act and the European Convention make clear, a conclusion that a person lacks decision-making capacity is not an ‘off-switch’ for his rights and freedoms. To state the obvious, the wishes and feelings, beliefs and values of people with a mental disability are as important to them as they are to anyone else, and may even be more important. It would therefore be wrong in principle to apply any automatic discount to their point of view.”

Emma Sutton: [It is] a fundamentally flawed Health Board view that because he does not (as he cannot) voice an objection, that his privacy is not to be treated with the same degree of importance. 

This argument seemed, to me, pivotal, when considering the balance for David of his safety (bearing in mind all evidence for clinical risk and the evidence for effectiveness of the VMS of mitigating that risk) and his right to privacy.

‘Risk-Averse’ Practice 

HHJ Howells, referring to the expert witness and evidence from the treating clinician, said: 

“His [expert witness] position is to avert death at all costs. That is understandable from a medical practitioner – to prevent death and not to harm. …. I recognise why health professionals are risk-averse – I don’t criticise – their obligation is to keep people alive. My obligation is to look at P in the round. … My analysis – and I don’t criticise medics for their approach – they talk about ‘gold standard’ being constant observation. This has an impact on the rights and privacy of P”

I work in health care. The possibility of being blamed for (or worse – engaging in) poor practice – especially when this might involve the death of a person in your care – stalks us all. This is why multi-disciplinary/agency teams and collective thinking are key. When the presumption that P has a subject-matter capacity is rebutted, this must lead to a best interests decision on that matter involving consultation (s. 4(7), Mental Capacity Act 2005).

This is not to render responsibility diffuse, but to consider the range of views and come to a balanced, proportionate decision – ‘in the round’ as HHJ Howells suggested. A ‘decision maker’ (as David’s treating clinician was described in this case) or a ‘responsible clinician’ (most often, though not always, a medical practitioner) might feel especially vulnerable, and therefore prone to making risk-aversive decisions. Support and training from employing Trusts/bodies needs to be forthcoming to enable a fluid and responsive system of care where practitioners feel, and are able to make ‘brave decisions’ (in David’s parent’s words). 

It feels as if we are moving further and further away from this kind of deliberative, considered, ‘in the round’ care for each other. I did a quick search for ‘risk-averse practice NHS UK’ and found some interesting papers. This, from 2019, looked at A&E decision-making, comparing junior and senior clinicians. There was some evidence for experience leading to increased ‘tolerance of uncertainty’ and less risk-averse practice.  ‘Learning to Live with Risk’, from 2011, in relation to social care, is a helpful document about risk aversion. 

An intimidating document – Risk Management Policy and Procedure CG04 (2020) – from NHS Resolution (a part of the NHS that I had never heard of before!) states: 

So, I have a lot of sympathy and understanding for a drive to focus on safety – or (what might morph into) apparent safety and risk management. The details of this case seem to suggest something other than risk-averse actions, however. 

The VMS was installed, apparently within the day, in April 2019. We heard that a Best Interests process was not followed for the installation of that VMS, and the lead nurse explained that she and others did not feel able to question or explore the decision, and viewed the decision solely as belonging to David’s treating clinician. At this final hearing, however, it was reported that the lead nurse had submitted, in her written evidence to the court: ‘In future I will ensure that before any decision is made that there is full consultation’. 

There was a suggestion of increased concern from David’s GP – though this evidence did not transpire to be persuasive as the lever for the VMS, given his seizure history. 

Emma Sutton submitted: 

“It has been suggested that [treating clinician] responded to a question from [David’s] GP. We are now two years down the line – there is no evidence that the VMS has been of benefit.  …. We have two years of the monitor being used with questionable efficacy versus sixteen years with no VMS used within the same care home. The VMS is not fit for purpose. The Health Board suggests the VMS needs to be monitored continuously – this hasn’t happened over two years – [David] is safe and well. [Treating clinician] acknowledged it wasn’t being used as he thought it was. ” 

Judgment 

HHJ Howells asked all parties whether they would prefer a ‘brief ex tempore judgment’ at the hearing, or a full, written judgment that would likely take ‘a matter of weeks’. There was disagreement: Counsel for David and David’s parent preferred ex tempore, counsel for the Health Board and Local Authority a written judgment. I understand that some judges do give ex tempore judgments that are then published later, and I thought it was a shame that this case will not have this public record, given the learning available for health and social care practice.

HHJ Howells said, “I understand the decision’s importance to all parties. This matter should have been determined in May [2021]. I am going to give a decision today. I consider ex tempore to be necessary”.

The court rose and reconvened a short while later. The judge spent a long time (around 40 minutes) giving her judgment and explaining her reasoning. It felt fitting in its detail given the complexity, and longevity, of the court case. 

Given that there will not be a published judgment on this case, I will summarise HHJ Howells’ judgment in some detail. It is not an account of the full judgement. I wrote as fast as I could and I report the judgment as close to her words as possible (but given that we are not allowed to record hearings, it is unlikely to be word perfect). 

The judgment addressed, explicitly, not whether David needing monitoring, but the ‘type and level of monitoring that is necessary and proportionate’. The judge noted that it is not possible to know David’s wishes and feelings about the monitoring of his epilepsy – save that his litigation friend submits that he would ‘wish to be cared for by skilled carers [who] promote his autonomy and independence and privacy’. 

HHJ Howells said: 

“The position of the litigation friend is that there is no need for a camera. [David] has lived without one for 16 years. That it is too great an interference with his privacy and personal life. That it should be removed – and the fall-back position is that the visual element should be removed.”

“The position of the Local Authority is neutral. They fund support and submit no particular views on monitoring.”

“The Health Board has strong views that the VMS must remain. They rely on medical evidence for this position and submit that the risk is so significant that to remove the VMS is not justified.”

“[David’s parent’s] position is that the VMS is a gross invasion of his privacy. That there is no efficacy of the monitoring system. She does not object to audio monitoring and 30 minute checks.”

“There is significant evidence in this case – both oral and on paper. Expert evidence for Health Board goes only one way. I have considered all the evidence.” [Judge’s emphasis]

HHJ Howells then described the legal framework, referring to the position statement from Emma Sutton, and noting that all parties accepted the accuracy of this document: 

  • European Convention of Human Rights, Article 8:
  • HHJ Howells stated that she must consider “the best interests of this P, at this time – his welfare in the widersense, not just medical, but social and psychological”. 

    [Judge’s emphasis]

    In relation to applying the s4 MCA 2005 checklist – regarding the best interests of an incapacitated adult. Is there a violation of his Article 8 rights? Is it necessary and proportionate? 

    HHJ Howells said:

    “[David] wants to be alive – against that background I look at the evidence. That [David] lacks capacity is not in dispute. These proceedings have looked at residence, care and treatment, video monitoring and wearing a helmet. 

    I have considered all witness evidence in this case. Oral and written. I read it all last night.”

    Expert Evidence

    “I need to address the expert evidence. The Health Board relies on this. Dr McCorry confirms all diagnoses and the unpredictability of seizures. He confirms the need for care.  … [David] is ‘at significant risk’ of SUDEP – one to two in a hundred. There is a degree of uncertainty – can it be prevented by provision of care? People are often found dead in bed, unwitnessed. His view, it is in [David’s] best interests to have the seizures attended. On balance that this reduces the risk of dying. 

    There is no question of [David] being attended – the issue is how?

    Dr McCorry confirmed that only a few patients have VMS – that there is no one method or system that provides good care. There is other technology. … The most effective is visual – not necessarily VMS. Regarding VMS being intrusive – it is only used short-term in hospital, often with consent. Some are in care homes, and need to be observed at all times. Non-visual systems (e.g. seizure detection) are less effective. On cross-examination Dr McCorry confirmed that all seizures carry risk of injury and SUDEP. There is no safe seizure type. I found Dr McCorry a straightforward witness, a professional gentleman. He did not want people to think that [David] was not at risk – it is better for him to be observed. How that can be done is in a number of ways. He accepted that assistive technology may help. His position is to avert death at all costs. This is understandable from a medical practitioner, to prevent death and not to harm. 

    He said – ‘a video monitor in itself does not provide good care. People do.’ It is appropriate to look at less intrusive means. They remain untested. In caring for a person what is needed is a person and care”. Dr McCorry’s evidence was of considerable assistance to me.

    Treating Clinician Evidence 

    “[XX] has been [David’s] treating clinician since 2003. He is a specialist in epilepsy and learning disabilities. Prior to 2019 there was good communication between [treating clinician] and [David’s parent]. 

    Firstly he discussed the risk of SUDEP. [He thought there was] a clear need to put in a plan for medical care of cluster seizures. The aim was to reduce the number of seizures. Not all seizures can be picked up – a need for a video monitor at night-time was identified. 

    It seems that within the day in April 2019 a VMS was purchased and since then [David] has been monitored every night in his room with a hand held device. [Treating clinician] indicated that he’d expected a process – nevertheless that didn’t happen. At no stage was an application made to ensure this was brought before the court, or a best interests meeting arranged expeditiously, to include [David’s parent] – she would never have agreed to it. … Excluding her from this process caused significant upset to a caring and committed parent. 

    In his second statement [treating clinician] said that initially no data was kept by the care home to enable analysis. This has improved recently. [Treating clinician] says it has identified night-time seizures – though none has been tonic-clonic. He suggests the VMS is still needed because they do pick up seizures. His view remains unchanged. 

    In his oral evidence he was challenged by [David’s parent] and Counsel for [David]. He stood by his evidence – he said ‘how it is delivered [the VMS]’ is not his area of expertise. He placed the risk at 1/300 for SUDEP. He said of course he was biased and that a small percentage risk of death is not meaningless in the round.”

    Lead Nurse Evidence

    “[Lead nurse] does not have Court of Protection experience. She cannot be criticised for that. At the previous hearing she was professionally criticised for how she had managed matters – not including the RPR and not following this up; the options considered were not complete and there were limitations in what she had prepared. That is why the hearing came to an end. Since then, and to [lead nurse’s] credit, she has put considerable effort into looking at all available options. The initial position was from inexperience. A nurse relies heavily on evidence from [treating clinician]. She has now done an options appraisal.”

    Other Evidence

    “The SUDEP Action report. The litigation friend obtained this report to assist the court – all parties agree the content. The team included 13 professionals in epilepsy mortality and risk, including safety tools. A world leader in their field. The report deals with mortality risk – 21 people die weekly in the UK [from SUDEP}. 50% are unavoidable. People with learning disabilities and epilepsy have a worse outcome than the general population. People aged 20-40 have elevated risk. The main risk factor is tonic-clonic seizures. The report deals with devices for monitoring and identifying seizures – their effectiveness, limits etc. It is based on data available. There are hundreds of different monitors available on the market. Most do not use a TV monitor.”

    David’s Parent’s Evidence 

    “Finally, [David’s parent]. Her own experience of [David], but also a medical professional herself. Her points are clearly made. Numbers of people with SUDEP are low. The efficacy of the evidence was questioned. She believes the utility and evidence for the VMS is unproven. That it was a grave error not to include the family in the decision and a failure to convene a best interests meeting. She submitted that in a Skype call with her, [treating clinician] indicated that he would not have installed the VMS if he’d known she’d been opposed. In cross-questioning he did not say this. I note the evidence about the Skype call. It is clear there was some discussion previously – [David’s parent] reached the conclusion that he would not have installed the VMS if he’d known her position. 

    Evidence from the RPR

    “ The RPR is at a loss as to why the VMS had to be installed with such urgency. His parent has been involved in all of [David’s] care. She had no knowledge of the VMS and was not invited to the meeting in 2019. This is a breach of [David’s] rights. [David] has been in the home since 2003 with no camera. The RPR has difficulty obtaining [David’s] wishes and feelings. She believes we have a viable option for the removal of the VMS – possibly to use audio, which she considers is still intrusive, but less restrictive.”

    “That is all of the evidence. I will now address the pros and cons of the VMS and other options.”

    The Pros and Cons of the VMS

    “It is right to say there is a risk of SUDEP. On the evidence there is a small percentage risk. Less than 1%. [David] will live with this for the rest of his life. I recognise what the experts say – they wish to be risk-averse. I recognise the strong presumption that [David] would wish to stay alive. 

    In analysing the risk of SUDEP – we cannot take risk at face value. The rationale for the VMS was tonic-clonic seizures. What has happened since is that [David] has had one of these at night-time in two years. The VMS has shown other seizures through the night. Many are picked up auditorily, some are picked up by people in the room. 

    SUDEP is a diagnosis of exclusion. The statistics from SUDEP Action say that only 50% are picked up in any event, on any monitor. 

    The OTs say that checking can be disturbing to sleep. I don’t accept this evidence. There is no evidence that checks are having this effect on [David]. 

    Dr McCorry, [David’s] sister and other treating clinicians think it’s in his best interests to keep the VMS. However, they are approaching matters from a risk averse position, not a holistic position in relation to [David]. 

    I’m not satisfied [treating clinician] has analysed the data as closely as he might have done, for example whether [David’s] seizures could be picked up by sound as opposed to visual. In my analysis, I don’t criticise the medics for their approach – they talk about ‘gold standard’ being constant observation – this has an impact on the rights and privacy of [David]. 

    Factors against the continued use of the VMS. The Health Board suggests [David] copes OK and has not shown disquiet. I don’t find this a persuasive argument. [David] is a young man with significant difficulties. The fact that he doesn’t show embarrassment at his personal time being interrupted doesn’t mean that he should have it interrupted. 

    If safe, anyone should have privacy in their room at night. The RPR cannot obtain his views – private acts would not be something anyone would normally want to be observed. The fact he cannot express his opinion because of his disabilities does not mean this fundamental right should be interfered with. [David] is entitled to privacy if this can be done safely. SUDEP is a significant risk – but a small proportionate risk. 

     [David] has lived with epilepsy since a babe in arms. For sixteen years in the home there has been no VMS. There were 30-minute checks. What changed I’m still not entirely clear. Some concern about tonic-clonic seizures and the mechanism of these. This has not come to fruition. I am not satisfied that, since the VMS has been in place, it has made any significant or material difference to the care of [David’s] epilepsy. Monitoring has made no difference to the seizures over those two years. 

    Dr McCorry said that the VMS is ‘very unusual indeed’. Particularly when I take into account [David’s parent’s] evidence – her views are careful, well thought through, from a position of love and clear thinking.”

    Final Judgment

    “The conclusion I reach is that it is not in [David’s] best interests to have a VMS in place. It is not proportionate, or efficacious. It is not a proportionate response to a fundamental right he has. In balancing the evidence, I need to consider how best to protect [David]. 

    Checks every 30 minutes, staff going into his room, and an audio monitor in place. A lot of his seizures have a sound element. We are not relying on sound only – there will be 30 minute checks as well and due to the layout of the home there will be others around in close proximity. Audio is an infringement – but in my judgment it is proportionate. This is not challenged by the litigation friend. 

    My judgment is that – if funded – a mattress alarm can be explored. The same is said in relation to an enuresis mattress cover. Pillows – no [referring to anti-suffocation pillows]. The relevant parties will look at the use of a wrist monitor. 

    [David] has had excellent care – everyone is delighted in his care at the home. Something went very awry in 2019. The upset it has caused has been the result.”

    At the end of the delivery of the judgment Emma Sutton returned to the issue of costs.  HHJ Howells stated that, due to the process of the installation of the VMS ‘costs should flow’. This was dealt with as a separate issue (following written submissions) and a costs judgment will be published in due course. 

    Reflections

    When someone is at risk of sudden death, it seems common-sense to do everything possible to mitigate that risk. Why would the court not authorise all potential measures of risk reduction? As David’s parent said, it seems ‘intuitive’ to do more to monitor people’s safety. However, if we interrogate that position, it becomes clear that all potential measures of risk reduction are not authorised when those measures might be burdensome to P (in excess of the potential benefits) or infringe fundamental human rights. Furthermore, capacitous people regularly make decisions against intervention (e.g. chemotherapy, amputations) even if it means that they might be at increased ‘risk’. 

    The evidence here though was such that the effectiveness of the VMS in identifying (and thus preventing harm from) seizures, was not proven. What struck me most bluntly was that the VMS was hastily installed and there was no process to evaluate its effectiveness – the treating clinician said ‘how [the VMS] is delivered is not my area of expertise’. I found this a startling statement – the person charged as the ‘decision maker’ has no subsequent input into how and whether a monitoring system is working, despite remaining David’s treating clinician. How can anyone know if it is helping to identify more seizures and be worth the intrusion? What happened was that the VMS was simply installed – and that was that. Everyone involved in David’s care must have simply gone along with this, I assume because they just accepted the idea that the presence of a VMS increased David’s safety. 

    Creeping surveillance does give the impression of increased safety – perhaps not just in care settings. We have all come to expect CCTV monitoring in our daily lives, in public spheres. This is very different from a CCTV in one’s bedroom at night. 

    HHJ Howells mentioned a few times that the medical approach was understandable – and that it was her (and by extension the Court’s) job to look at P ‘in the round: medically, socially, psychologically’. A question kept nagging at my mind throughout this hearing: How, then, can those Ps, whose care is not brought before a judge, be seen ‘in the round’? This issue has vexed me throughout this case. If the message is that only the Court of Protection needs to do this, where does that leave all the other Ps deemed to lack capacity to make decisions about care, medical treatment and so on? 

    I might have interpreted HHJ Howells’ statements incorrectly – in that I understood her to be suggesting that she understands and does not question the medics’ approach as singular in nature: to be risk-averse and preserve life at all costs. Rather, it could have been that HHJ Howells was being conciliatory and at pains not to blame – whilst at the same time in her judgment apportioning fair blame: for not holding a best interests meeting and not informing or consulting David’s parent throughout. 

    If a best interests’ process had been followed and it had been decided that monitoring was not in David’s best interests, then no court hearing would have been needed and P would not have had his Article 8 right violated for a long time.  If there had been disagreement (e.g. between parent and clinician) after a best interests process, then an application to the Court of Protection might have led to a case process similar to this, but without delay.  The issue in this case is that there was no best interests’ process at all!  

    All decisions made on behalf of a P who is not able to make those decisions for themselves must be made in P’s best interests – which means a proper best interests process should be followed, balancing all the issues involved, including P’s human rights. 

    The cost is an additionally important element of that failure (others are unnecessarily taking up court time when it is already overburdened with cases, taking busy clinicians out of work to give evidence, not to mention the stress and angst of a court process for those involved).

    A previous hearing I attended (and blogged about here) heard Mrs Justice Lieven lamenting: 

    “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!”

    I don’t have a calculator for court costs – David’s case, over several hearings, must have cost a significant amount of public money. As a simple result of one dominant voice and not following the legal best interests process due to the presumption that a risk-averse ‘medical’ decision trumped David’s other interests and rights. It caused a lot of distress to David’s parent, who at this hearing stated that she ‘was not used to gladiatorial locking of horns’. Fortunately, David was not distressed, or aware, of the disputes. It all seemed so unnecessary. 

    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 dozens of blog posts for the Project about hearings she’s observed (e.g. here and here). She tweets @DocCMartin

    Best interests in a contested end-of-life case: Cambridge University Hospitals NHS Foundation Trust v AH & Ors [2021] EWCOP 51

    By Celia Kitzinger with Claire Martin, 6th September 2021

    The case before Mr Justice Hayden (COP 13783897, 17th-19th August 2021) concerned “AH”, a woman in her fifties who is emerging into consciousness following brain injury caused by Covid 19.  

    The question the court had to decide was whether she should continue to receive ventilation.  

    She is currently in a minimally conscious state in Addenbrookes Hospital in Cambridge.  

    Everyone agrees that AH lacks the capacity to give or withhold consent for medical treatment.  This means that the decision needs to be made for her.  

    The treating doctors and the family were not able to agree the best course of action, which is why the case was in court.

    Mr Justice Hayden’s decision was that ventilation should be discontinued by the end of October 2021, but should be continued as long as necessary up to that date to allow the opportunity for this close and loving family to be together at the end.

    The judgment was published on Friday 3rd September 2021 and has since been widely reported in the media[1].

    Press reports seem to be based on a press release from PA Media (what used to be called the “Press Association”) by Brian Farmer, although other bylines are sometimes used instead or in addition.  Some incorporate a  short statement put out by the Communications Department at Cambridge University Hospitals NHS Foundation Trust.  The stories I have seen are accurate, as far as they go, but they focus – perhaps inevitably – on the outcome (what the judge decided) rather than the process (i.e. how the judge went about considering the evidence and arriving at a decision).  

    This post focuses on the reasoning behind Mr Justice Hayden’s decision.


    The decision-making process

    If doctors consider a treatment to be wrong clinically – i.e. it will not ‘work’ – they cannot be compelled to give it: not by a patient, not by family, not by the court.  

    But the ventilator ‘works’ in the sense that it is keeping AH alive while she cannot breathe for herself.  

    The question, then, is whether continuing ventilation, which is keeping AH alive, is in AH’s best interests.  If it is, ventilation should be continued. If it is not, it should be stopped.  This is what the judge had to decide.

    The starting point is always strongly in favour of prolonging life where possible (in accordance with Article 2 of the Human Rights Act). As Lady Black, giving the judgment of the court in An NHS Trust v Y [2018] UKSC, said, there must be “a full recognition of the value of human life, and of the respect in which it must be held. No life is to be relinquished easily” [92].   In law, however, the strong presumption that it is in a person’s best interests to stay alive is not an absolute principle, but “must yield to the principle of self-determination” (Bland at 864D).

    Some people believe that if a treatment is keeping someone alive then it is always, by definition, in a patient’s best interests – because life is sacred, or because we should never ‘give up’ on life, however tenuous our hold on it, until death is inevitable.  They may see stopping treatment as tantamount to suicide or euthanasia. They say they would want all possible treatments to the end. 

    Other people say that if they can only be kept alive “with machines and tubes”, they’d rather be “let go”.  I’ve heard many stories from people who’ve witnessed “bad deaths” of loved ones who received invasive medical treatments up until they died, and that’s not what they want for themselves. 

    Doctors, family members – even the judge – may have strong views about what they would want if they were in the patient’s situation.  

    But what matters here is: what does AH want?  What would she decide if she could?  How best can the judge promote AH’s autonomy and self-determination?

    The Mental Capacity Act 2005 (MCA) lays out what the person making the decision about best interests (in this case Mr Justice Hayden) must “consider” and “take into account”:

    So the task before Mr Justice Hayden was to establish (as s.6 MCA specifies) what AH’s past and present wishes and feelings are, the beliefs and values that she would take into account if she could, and the other factors she would think relevant if she were able to decide for herself.   This means considering questions like: What sort of person was AH? How do her character and personality and the way she chose to live her life – her commitment to her family and to her faith –  shed light on the choice she would make now?  

    In considering these questions, the judge must consult the people listed in s.7 MCA.  AH had not named anyone to be consulted, nor appointed anyone with Lasting Power of Attorney, so,  for her, the people to be consulted were those “engaged in caring for [AH] or interested in [her] welfare”:  the treating team in the hospital, and AH’s family. 

    In the final hearing, spread over three days (Celia was only able to observe the first day; Claire was only able to observe the second), the judge heard from the treating team and from the family to establish, as best he could, what AH would want for herself in this situation. 

    This was a challenging task.

    Assessing AH’s best interests

    The parties in court were: 

    • the applicant, Cambridge University Hospitals NHS Foundation Trust represented by Katie Gollop QC); 
    • the Official Solicitor for AH (represented by Nageena Khalique QC
    • and four members of AH’s family, as litigants in person: her two sons (A and K) and two daughters (S and M).  (One of her sisters also gave evidence, but was not a party.)

    The applicant Trust took the position that continuing ventilation was not in AH’s best interests.  Some members of the family (especially A and M) took the position that ventilation should be continued.  The Official Solicitor reserved her position at the start of the hearing, wanting to hear further evidence before expressing a view on behalf of AH.

    At the time of the hearing AH had been treated in the intensive care unit at Addenbrooke’s for more than 230 days.  

    Evidence from the clinicians 

    Mr Justice Hayden heard evidence from three members of the treating team: a Consultant in Neuroscience and Trauma Intensive Care Medicine (Dr A); a Consultant Neurologist (Dr B); and the Matron in Adult Critical Care (Ms C). 

    The clinicians were in agreement that AW had suffered “devastating injuries” as a result of covid infection including:

    • A necrotising myopathy that has killed and scarred muscle tissue, leaving her with profound muscle weakness.
    • A motor neuropathy such that the nerve cells supplying muscles have died (similar to motor neuron disease): this has affected 90% of her nerve cells. There is no possibility of regeneration or recovery of function – she won’t be able ever to walk again, or to use her hands.  Sensory nerve activity is preserved, so it is likely that she experiences pain (and can receive comfort from touch).
    • A brainstem encephalopathy, which affects eye movement, facial movement, swallowing and the Reticular Activating System (RAS, the nerves that awaken the rest of the brain).  There has been some partial recovery of the RAS, which is why AH is more aware and conscious now than she was a few months ago. According to one of the treating doctors: “As AH has become more awake and intermittently aware of her extreme disabilities she has predictably become more distressed. AH frequently cries and has a distressed countenance.” (Dr. A)
    • Cerebral encephalopathy, which has caused damage to the cerebral cortex (which provides memory, speech, experience, planning and thought) and to the basal ganglia (meaning that the brainstem RAS ability to wake the cortex is impaired).

    In the professional opinion of the doctors treating her: 

    She will be almost totally paralysed for the rest of her life.  It is likely that she will be dependent on mechanical ventilation via a tracheostomy. She will be unable to move, talk, wash herself, adjust her position if she is uncomfortable, get up in the morning, put herself to bed.  Furthermore, she will develop the complications of immobility which will include pressure sores, recurrent pneumonia and other infections, and painful joint subluxations and contractures.” (Dr. B)

    The court had also received written reports from two independent experts who had examined AH: Professor Derick Wade, a Consultant in Neurorehabilitation  (instructed by the Trust) and Dr Chris Danbury, a Consultant Intensive Care Physician (instructed by the Official Solicitor) – although only Dr Danbury was in court to give oral evidence.  The expert reports substantially endorsed the Trust’s diagnoses and prognosis.  Dr Danbury stated that AH has a “less than 1% chance of long-term liberation from mechanical ventilation”. 

    The Trust position is that “those caring for AH have come to the unanimous view that of the limited options available to her, no longer receiving ventilatory treatment is her best way forward”.  

    This was also the professional opinion of both the independent experts.  According to Dr Danbury, AH’s experience is “slanted towards pain and discomfort” and sooner or later she will “inevitably” develop an untreatable infection “which will be fatal”.  He concluded in his report that “the current situation … revolves around slowing the inevitable process of her death rather than giving meaning to her life”.

    The treating team has come to believe that AH is often in pain, and frequently feels “anguish” “fear” and “distress”.  She often cries. They say there is nothing they can do to alleviate her suffering.  It’s impossible to reverse her brain damage or the damage she has suffered to her peripheral nervous system. 

    Although, as the Matron said, “we all agree she takes comfort when her family are there and she’s calmer and more relaxed” (Ms C), this is a small part of her experience. 

    One of the treating doctors, Dr A,  is “now deeply worried that her awareness has reached a point where all she is able to focus on is fear, anxiety, and hopelessness”.  He concludes: ““I cannot reasonably believe that she would choose to live in this way, unless there was a clear signal from prior discussions with her family, or evidence of any previous statements she may have made or written”.  They fear that the treatment they are giving amounts to “daily torture” and that it is “morally and ethically wrong” to continue treatment. 

    According to Dr A, AH’s situation is:

     “… associated with a loss of dignity and a total loss of autonomy – she is unable to provide consent and cannot participate in any meaningful choice about how she is treated. This extends from decisions of the utmost gravity, such as withdrawal of treatment, to very modest choices like whether her head faces the window so that the sun warms her, or whether her head does not face that way because the light hurts her eyes.” (para 69 (iii)).

    There is a great deal more detail in the judgment about the course of AH’s illness, and the nature of her brain damage. In court, the doctors were asked a lot of questions about details of diagnosis and prognosis, the detailed answers to which were sometimes quite difficult for a non-medic to follow.  One daughter asked about whether AH’s nerves could regrow so that her arms and legs could work again (the answer was no).  Another issue was whether she would ever be able to communicate beyond indicating “yes” and “no”.   Clinicians agreed that it was highly unlikely that she would ever be able to speak again, because she is unable to exert sufficient control over her mouth and tongue, but pointed out that there are many technologies available that could offer the possibility of communicating in ways other than via speech – if only she were cognitively able to do so.

    She has more than enough motor control to establish a much more sophisticated communication system than just ‘yes’ or ‘no’. If you can move just a single muscle you can do that.  What she doesn’t have is a long enough period of attention and a long enough period of capacity to get beyond ‘yes’ and ‘no’.  The speech and language therapists have worked for hours to try to get her to spell out words… I don’t think she will ever get to that level of consciousness.”

    One of the daughters pointed to the (generally accepted) fact that AH had become more conscious recently and asked if this didn’t suggest the possibility of further recovery.  She pointed to the fact that Covid-19 is a very new illness and there’s lots that isn’t known about it.  But AH no longer has COVID and the neurological damage she has (as a result of COVID) is very familiar to clinicians.

    Dr B replied using an analogy borrowed from one of the expert reports before the court. 

    She’s had an upward trajectory, but Professor Wade’s analogy was very helpful. If the floor is zero (completely unconscious) and the ceiling is 100, she was at 2 or 3 and now she’s at 5.  This is really, really hard for a layperson to grasp.  I fully agree there has been an improvement, but the significance of the improvement and the extent of the improvement are not agreed amongst us.   The doctors see it in a particular way from our experience of brain injury.  There is no sign of Covid in AH now.  This is the consequence of brain injury.  We are drawing on our experience as doctors of people who’ve had brain injuries for other reasons”. 

    Mr Justice Hayden addressed the crux of the matter:

    Hayden:  “It isn’t a question of will she ever be what she was, or will she walk and talk again.  It’s a question of whether she might ever have restored to her a quality of life that you or I might reject, but she would want – because it reflects the way she lived her life and the values she has.  She will never get to 90 but will she get from 2 or 3 to 5 or 10, and 10 – if it enables her to absorb the presence of and enjoy her grandchildren, might be something that would be good enough for her. Are we in that territory?”

    Dr B: “In my view, no, My Lord”.

    At another point, the judge and Dr B had this exchange:

    Dr B:  I would not be able to live that life. But that doesn’t matter.

    Judge:  If you felt that God makes that decision and not you or the doctor, then whether you can live that life or not wouldn’t be the point, would it.  It would be the will of Allah.

    Dr B:  [Son A] has pointed that out to me.

    Later Dr B said: 

    We doctors who are looking after her, who started this ventilation, feel increasingly that it’s ethically and morally difficult to continue this treatment.  How long does she have to suffer like this for the prospect that she might get to 10? … We feel desperate for the court to confirm that we are doing something that is lawful.”

    This is how Mr Justice Hayden summarised his thinking during the course of the medical evidence: 

    Putting it bluntly, she’s never going to change dramatically from the way she is now.  She may have slightly more awareness than she has now and a greater understanding of what is going on around her, and a greater receptivity to pain.  So the doctors say that, medically, this points to discontinuing ventilation.  But factored into that has to be what I think she wants, based on the code by which she lived her life.  I have to ask what are her values and beliefs and how do I most effectively respect her autonomy, which I don’t regard as having been extinguished. […] The doctors describe psychic distress, mental anguish, distress of the soul, however one might put it – but they recognise, in all humility, the limitations of their interpretation of how they find her.” (Hayden J)

    Evidence from the family 

    At the earlier ‘directions’ hearing (14th July 2021), blogged here, AH’s family seemed to be  (as Mr Justice Hayden put it)  “unified around the same position” – that treatment should be continued.  At that hearing, the judge asked them to prepare written statements for this final hearing and he spent all of the second day listening to their evidence.  

    The judge’s description of the oral evidence is “AH’s family members have exhibited a wide spectrum of views whilst endeavouring to advance a collective and unified response. In truth, each family member has, both knowingly and otherwise, vacillated as to the best way forward” (para. 3). The diversity of views and “vacillation” emerged largely as a consequence of skilled probing by the judge. In the judgment, Hayden J observes that “there is at the very least one family member who unambiguously supports the professional consensus” (para. 68).

    This second day was a ‘hybrid’ hearing, i.e. some participants were in the physical courtroom, while others (including observers) joined remotely.  This was at the request of some of AH’s adult children who wanted to meet the judge face-to-face.  All but one – S, who lives in Australia – were in the courtroom.

    In questioning the family, Mr Justice Hayden wanted to understand who AH was as an individual and to identify the “code by which [AH] lived her life so as to understand what decision AH would make for herself in this situation if she were able to do so”.  

    The family described AH as a strong and independent woman who had overcome considerable adversity in life – including leaving a violent and abusive husband, fleeing to a women’s refuge when the youngest child was five years old. It was suggested by some of the doctors, and by Mr Justice Hayden,  that AH would find her current state of complete dependency and lack of privacy entirely unacceptable

     She is an observant Muslim (listening to Islamic prayers, eating only Halal food)  but “though it has been raised, the family has not emphasised an objection to withdrawal of ventilation on the grounds of Islamic belief” (para. 67).

    Family members described some moments of pleasure and comfort that they had observed in AH while they were present, leading Mr Justice Hayden to reflect on the “delicate balance” between the small pleasures AH is said still to enjoy – the comfort she finds in the presence of her family, listening to religious recordings, watching Mr. BeanOn the other hand lies the unimaginable burden of living for months subject to the rigors of ICU care, and suffering an unplanned death from infection.”

    This exchange took place on the first day of the hearing:

    Judge:  The irony of it is that if I accede to what I might call ‘the family’s case’, it might be that I deliver a degree of misery to their mother.

    Son (A) : I think she’s well aware of her existence now and has accepted it.  You say that it would be for her best interest and for our interest to bury her.  We would rather have a mum we can look after than one that we can visit at a grave.

    ***

    By Claire Martin

    Mr Justice Hayden’s approach is to help family members and witnesses to feel valued and as comfortable as possible.  It is an approach that seems to enable people to speak with candour, having a sense that the judge is genuinely interested in them as a person and in what they have to say. 

    I remember wondering what it might be like for AH’s family to speak in court at such a difficult and upsetting time for them all. I felt admiring of their fortitude, and grateful that Mr Justice Hayden worked hard to put them at ease.

    For example, at some point in the hearing, Hayden J interrupted Nageena Khalique (when she was questioning one member of the family in a direct way) to say ‘You know I like to take a long run at the wicket….’. He then proceeded to ask (I think it was A, AH’s youngest son) about what he did for a job and other more general questions. My sense is that, given that a judge has to make a decision one way or another in a contested case and at least one party will be disappointed, he wants to ensure that all parties feel, and are, genuinely heard and seen

    I have recorded here my recollection of what each family member said, with the exception of K – who must have given evidence, since he is quoted in the judgment (e.g. saying that he thinks his mother is in pain) but unfortunately I have no record of this.

    Daughter [S]

    AH’s daughter in Australia (S) was the first family member to give evidence.  She  looked very nervous initially, understandably. 

    In her written evidence, S said that her mother would “want us to do everything possible…to exhaust every possible avenue to get better”. In court, S was at first cautious in her responses to Mr Justice Hayden. He referred a few times to his understanding that she did not want to cause conflict within her family and that he would still like to hear her honest view of her mother’s values and expressed views before she was unwell, and what she thought her mother would want for herself in her current situation.

    I don’t have notes of S’s evidence, so I am relying on my memory and impression of her – she was articulate, calm and composed. It must have been very hard for her. She said that she did not think her mother would want to ‘suffer’. Mr Justice Hayden asked S what her mother would define as ‘suffering’. I can’t recall the detail of her answer, but remember that her response was remarkably considered and empathic. She clearly outlined four different experiences that she thought her mother would define as ‘suffering’ – and they included specific descriptions of physical discomfort and emotional distress. They clearly encapsulated what AH is currently enduring. 

    It became evident to me, as the hearing continued, that the family members were not all of one mind in relation to AH’s best interests – and this itself was a difficult and upsetting situation for them all. I very much felt for them – AH’s situation was devastating, having contracted COVID less  than a year ago and its impact being so severe, and irreversible, neurologically.

    AH had started working at Cambridge University not long before the pandemic started; she was enjoying life with her family and her new job. All of the family accepted that AH would not ever be able to return to that life. There was less agreement about whether AH might improve in her functioning and subjective experience – and even if she did not, whether or not her current condition would be, to her, intolerable.

    Sister (T)

    AH’s sister (T)  was the second family member to give evidence, via remote link. She talked about her sister with love, about happy times they’d spent together and about her sister’s faith. She described how AH’s children were central to her life and happiness. 

    She came across as very concerned about her nieces’ and nephews’ wellbeing – I saw her communicating with them with body language throughout the hearing and she clearly wanted to convey warmth, support and encouragement to them all. T really struggled, I thought, to reach a view about what AH herself would want in her current situation.  She said that she knew her sister was in pain because she had asked her, to which AH had nodded a ‘Yes’.

    Daughter [M]

    AH’s youngest child, her daughter M, then came to speak to Mr Justice Hayden from the witness box.  

    As I’d been observing the hearing, M (and her brother A) were generally visible on screen too.  Their emotional responses were plain to see at times – nodding or shaking their heads, especially A, AH’s son. My observation was that the energy in the room, embodied by M and A, was notable – they were a physical presence in the court. I had a sense that they were fully ready to speak up and wanted a voice. 

    M’s evidence was extremely affecting. She, too, was articulate. She was vibrant and engaged. Mr Justice Hayden had clearly worked hard to develop a trusting relationship with her – this felt very important, given what I witnessed during her evidence. 

    A consistent message that Mr Justice Hayden gave to the family, and most starkly to M and A, was (something like) this: ‘Your mother is dying. The question before us is not whether she is dying, but when and how she might die.’

    At times, the judge was blunt and forthright with this message – though it was always infused with kindness and compassion for the impact such a statement might have. 

    When Mr Justice Hayden said this at one point during M’s evidence, she stopped dead. She looked at him square in the eye and said ‘She’s NOT dying’. She described how, in her view, AH had changed over the months and become more able to communicate, respond, react and understand what is going on around her. She viewed this as evidence for gradual recovery. She did not accept the expert evidence of Professor Wade and the other medical evidence, and stated that she believes ‘doctors do not know everything’

    I saw how M could not reconcile what she sees with her own eyes – that her mother’s situation had changed from no consciousness several months ago to some consciousness and communication now – with the idea that her mother is ‘dying’. As a daughter who desperately wishes her mother to come back to her, this is clear evidence of things moving in that direction. 

    M struggled to hear and absorb the medical opinions (all of one voice) that her mother’s life, in any event, would end within a year, at the outside. The question of whether it remained in AH’s best interests to continue with the life-sustaining treatment, given her pain and distress, felt too much for M to consider, given her own position that her mother was not dying, and in fact that she was improving

    Mr Justice Hayden encouraged M to describe her relationship with AH. M talked about a close, caring and fun relationship. She described looking after her mother (before she was unwell following COVID, as well as during her time in hospital this year). M would go to spas with her mum, take her on holiday and enjoyed pampering sessions at home together. 

    She (and her siblings) showed the judge videos of AH before her illness and also of her in the hospital – and Mr Justice Hayden expressed pleasure in being able to see those precious family memories and the court could also hear the sound of AH’s laboured breathing that the ventilator creates. He said he would ‘watch anything you want to show me’. I was moved by that – the judge was open to anything the family wanted to share with him. AH’s children left their seats to show him as many videos as they could locate on their phones. Hayden J at one point commented that they were competing to show them to him. The courtroom at this point felt less formal, as the siblings approached the bench and handed their phones back and forth to allow Mr Justice Hayden to watch family videos.  

    M was ‘very critical’ of the nursing care that her mother had received. She thought that some nurses did the ‘bare minimum’. She talked about when she was first able to visit her after the restrictions were reduced. She said that she was upset to find her mother ‘unrecognisable’ and that she herself set about tending to her mother’s personal care needs. She described bed sores that AH had developed and was clearly horrified that this had been allowed to happen. She said she looked up how to heal them, got some lotion herself and let the sores air dry, to bring some relief. She said that within two weeks, the sores had healed, and knew that her mother was much more comfortable. She also tended to her mother’s appearance and ensured that she would present herself to the world as she would have wanted to – Hayden J made reference to this in the judgement, when he went to visit AH himself in hospital: 

    She attends to all her most intimate cares and ensures that her mother presents a good face to the world. When I attended the hospital to visit AH, M went ahead to prepare her mother. She attended to her hair and put her into a smart black cardigan.”

    M was forthright and assertive with the judge, and only towards the end of her evidence did she break down. Mr Justice Hayden apologised for making her cry. I recall him offering an explanation of why he was pushing her: to try to help her see that, for her, it was important to be able to take a step towards accepting that her mother was dying, and, that if she were able to do this, she might be better able to assist him to understand what AH’s wishes would be. Mr Justice Hayden expressed heartfelt understanding for M’s own wishes: that she loved her mother and wanted her to live. He voiced the clear message that M must consider whether there might be a difference between what she herself wishes, and what AH would wish for herself, in her current circumstances. 

    I started to form the idea that an additional function of court cases such as this – and certainly this court case – was to offer the family an opportunity to begin to accept the inevitable death of the person they love and to start to grieve for them. I have witnessed this before from Mr Justice Williams in this very upsetting hearing about a young woman who had tried to take her own life. I am sure something like this must have been in Mr Justice Hayden’s mind as he spoke compassionately to each family member. 

    His clear judicial task of reaching a best interests decision for AH was primary, and at the same time he regularly made reference to the opportunity for the family to make a consensus decision with him, rather than putting him in the position of making a singular judicial decision.

    Son [A]

    Mr Justice Hayden’s attempt to reach a consensus decision was clearest in his interaction with A, AH’s son. A conveyed a confident, almost bullish, attitude at the start of his evidence. I thought this covered a fragility that was not far from the surface.  Like M, A also desperately wanted his mother to live and found it extremely hard to even begin to think about whether his mother would want anything different from what he wants for her.   

    Mr Justice Hayden (expertly and kindly, I thought) enabled A to describe his relationship with his mother and guided A to acknowledge that he was the ‘golden boy’ (judge’s words) of the family. It seemed that, over the years, A had come to see his own thoughts and feelings as indistinguishable from his mother’s. He spoke of interactions he had had with his mother in hospital, where he asked her questions, the answers to which he had interpreted as her conveying a wish to stay alive. Hayden J was able to help A think about why he might have received that communication from his mother. I recall Hayden J saying something to A along the lines of: perhaps the last person your mother would tell, if she felt she did not want to carry on, is you. At this moment, you could hear a pin drop in the courtroom. I thought this was a pivotal moment for A: he seemed to start to consider the possibility that he, specifically he, might not be able to ascertain, from asking her, what his mother’s wishes were. She would not want to distress him if her wishes did not accord with his own. 

    A described a relationship where he would do anything for his mother, and indicated that her needs were always paramount in his mind. Like M, A was sceptical of the medical evidence and, like M, he was critical of some of the care that AH had received (a view with which Mr Justice Hayden vehemently did not agree). 

    A also began to point out that his sister, S, was in Australia and was not around to see how his mother is progressing. At this point, it was clear that there had been, and probably was ongoing, discord within the family regarding AH’s likely wishes for herself. Mr Justice Hayden intervened – I had the sense that he saw no benefit in airing a family dispute, He noted that he found S’s evidence ‘very impressive’ and that she had attempted to consider what their mother would want for herself. 

    Mr Justice Hayden asked A to try to suspend his own wishes and consider, knowing his mother as he did, what she would want for herself. It was at this point that A became upset. The situation facing A felt impossible for him to countenance: that his mother was dying. I could see the conflict he was going through – it was palpable. How could he consider when and how his mother might die if he did not accept that she was dying? 

    Mr Justice Hayden allowed time (especially for M and A, who struggled the most to accept what their mother was facing) for what he was proposing to the family to be digested. Each time he made a statement that was hard to hear, to compute, he allowed some silence. I thought this was very therapeutic – it enabled space, to think, to feel, around the message that was being delivered. 

    At the end of the hearing, the most resounding thought in my mind was that, even if Mr Justice Hayden did not make a judgment concordant with some of the family members’ wishes, they would all have felt valued, honoured and heard. 

    *****

    Although I (Celia) didn’t observe the second day of the hearing on which the family gave evidence about AH, I have watched Mr Justice Hayden question family members many times before and admire the skill with which he persistently maintains a focus on the person at the centre of the case.  It is that person’s values, wishes, feelings and beliefs that are key to the best interests decision – and teasing these out from what family members want for the patient, or for themselves, is not always straightforward.   These extracts from the judgment indicate some of the difficulties. 

    A desperately wants his mother to live. Though he has the intelligence to absorb the impact of the medical evidence, his love for his mother causes him to retreat from the force of it. He devises questions to put to his mother in which he hopes to find evidence to support his own desire that she may continue to be ventilated.” (para 75)

     “I formed the impression that [K] struggled to find the right words to express himself, in part because the ethical issues are complex but also because he did not want to offend his siblings, especially A. He struck me as bowed down by the weight of having to take a proactive decision one way or another about his mother.” (para. 87) 

    “ M had been absolutely clear to Professor Wade, when he interviewed her, that “if she had asked her mother what she would want in this situation before the illness struck, she (her mother) would not wish to continue”. This is no longer M’s explicit position, though her conflict about her mother’s welfare is almost palpable. She states that her mother’s improvement in consciousness causes her to hope that she might continue to improve to a degree which makes her life (i.e. her mother’s life), tolerable. She recognises that this optimism cannot be founded in the medical evidence but contends that doctors do not know everything and that her mother may yet confound them.” (para. 88)

    The decision

    As Mr Justice Hayden made clear, “An assessment of ‘best interests’ must, ultimately, survey the whole landscape of a patient’s medical, welfare and emotional needs” (para. 66). The goal of the hearing was to elicit the information required and then consider the options available.

    The applicant Trust considered that AH had two choices, and Mr Justice Hayden believed that they had correctly identified the options.

    “There are two choices for [AH]. One is continued treatment on ITU until she succumbs to a fatal infection, on the ward, at an unpredictable time, when there may be no family in attendance.  The other is that she moves to a calm, quiet and private place, where the close of her life in this world can come to pass when she is back where she has always wanted to be – at the heart of her family – surrounded by their love, in an atmosphere of prayerful peace and togetherness.” (para. 102)

    The judge rejected an alternative suggestion, from the Official Solicitor, that AH should continue to be ventilated outside the hospital – because this is not medically safe and risks “an avoidable, painful, unexpected death, with no family in attendance” (para. 77).

    The judge recognised that  “however depleted and compromised her life may have become, AH retains the capacity to feel and receive love”.  He saw the comfort she receives from her family (and her faith) as offering “shafts of sunlight” penetrating her overarching misery or “moments of pleasure in the scorched landscape of her present existence” (para. 104).  He also recognised that AH would have taken into account the comfort her family gained from seeing her – and this recognition is not (as one of the clinicians implied) about putting the family wishes ahead of the patient’s, but is rather “reflective of the central importance of family in AH’s hierarchy of values and beliefs”.  

    He concluded:

    I do not consider that AH’s best interests are presently met by ventilatory treatment in the ICU; ventilation is now both burdensome and medically futile; it is protracting avoidable physical and emotional pain. It is not in AH’s best interests that ventilation be continued indefinitely. It is however in her interests that ventilation remains in place until such point as all her four children and family members can be with her. This, I am satisfied, is what she would want and be prepared to endure further pain to achieve. I am also clear that it is in her best interests to be moved to a place which protects her privacy and affords her greater rest. The details of these arrangements can be worked out between the family and the treating team. One of the children is presently outside the United Kingdom and will have to make arrangements to travel. I hope this is possible, but I make it clear that ventilation should be discontinued by the end of October 2021. Though there is an inevitable artificiality to this, it reflects the delicate balance that has been identified. It provides an important opportunity for this close and loving family to be together at the end. The treating clinicians feel able to work with and perfect this plan and recognise that it is consistent with their own professional conclusions and reflective of the central importance of family in AH’s hierarchy of values and beliefs.” (para. 108)

    Understanding the process of best interests decision-making

    I don’t know whether or not Mr Justice Hayden has made the right decision in this case.  

    But a decision had to be made one way or another. I am glad the Court of Protection is there to do this, and I’m glad it wasn’t me who had to make the decision. 

    I don’t know for sure that AH would want ventilation withdrawn, given the tenets of her faith  – but as Mr Justice Hayden points out (paras. 93 and 94 of the judgment), “on these difficult end of life issues there are differing views within each of the major faiths, including within Islam”. 

    I don’t know for sure that AH would want to continue to suffer pain and distress for up to an additional two months (so that all of her family members can be with her), while being given treatment that the judge describes as “burdensome” and “futile”. 

     I wish she could tell us herself what her views are, and what she wants.

    But as the Official Solicitor noted: “There is no direct record of AH’s wishes as to what she would want to happen in this situation; she did not make an advance decision for herself”.

    I’m not really sure that her family members know for certain what she would want in this situation either.  

    Any of us could suddenly lose capacity to make our own decisions about life-sustaining treatment – it might be a stroke or cardiac arrest, illness, or accident.  Any of us could be in the position where others are having to make decisions on our behalf.

    Family members (and doctors and judges) could really use support in understanding what we would want in this situation.  

    What Claire and I witnessed in the Court of Protection was a determined, serious, and lengthy attempt on the part of the judge to determine what AH would want, in the absence of any direct record to help him.  Mr Justice Hayden tried very hard to find out what her wishes would be, and to respect them – giving effect to her autonomy and self-determination.

    It’s common for people to make passing remarks along the lines of “if I’m ever like that, just let me go” or (conversely) “I’d want everything possible done to keep me alive”.   But few people engage with possible future scenarios in any detail – preferring not to think about it, hoping it will never happen to them.  

    Only a tiny minority of us write down guidance for those who might in future need to make life-and-death decisions on our behalf.  These ‘advance statements’ can be enormously helpful to decision-makers.  They set out our values, feelings, wishes and beliefs (both the things we are certain of and those we are unsure about). We can explain what makes life worth living for us, the role of our religion (if any) in our decision-making, and the extent to which we’d want family views taken into account.

    Written statements from the person at the centre of the case carry particular weight in Court of Protection hearings.  In part this is because the law says that the judge “must consider… in particular any relevant written statement” (s4(6)(a) MCA) made by the person at a time when  they had capacity.  

    Suppose that AH had written any of the following statements  (based loosely on actual statements I’ve seen written by others), then how differently the hearing might have gone.

    These sorts of ‘advance statements’ carry great weight in best interests decision-making.

    We can also avoid ‘best interests’ decision-making altogether by making a legally-binding refusal of treatment.  With a formal ‘advance decision’ (signed, witnessed and with some specified wording, see ss. 24-26, MCA), we can make our refusals known (e.g. “I refuse a feeding tube if I have advanced dementia”, “I refuse a ventilator if I’ll never be able to live independently again”).  These are legally binding – doctors cannot lawfully administer the treatments refused in a valid and applicable advance decision.

    Many people believe that ‘next of kin’ are decision-makers in situations like this but in fact, although family and others close to the patient must be consulted, it is the doctor providing treatment who must be satisfied that it is in the patient’s best interests – or where (as here) there is disagreement, a judge.  Even if doctors believe a treatment is in the patient’s best interests, they cannot lawfully administer it if it’s been refused in advance.

    Second-guessing what someone would want in a complicated medical scenario can be hard.  Even if you are sure, convincing a doctor and/or a judge that you know the person’s wishes and that those wishes should prevail can be challenging.  As I know from my own family experience, it can fail – even when the whole family is in agreement about what the person would want. 

    For myself, I have an advance statement laying out my values and beliefs to assist anyone charged with best interests decision-making on my behalf in the future.  And I have also completed an Advance Decision to Refuse Treatment, since I know that I would never want to receive any life-sustaining treatment if I were in AH’s situation or anything like it.  (Information about how to complete these documents is available from the charity, Compassion in Dying.). If I were ever the person that Mr Justice Hayden had to make a decision about, he’d have a lot more information to go on, and I’m confident that he’d find it a lot easier to make a decision in line with my own wishes.

    It’s important for members of the public to understand the process of best interests decision making, as mandated by the Mental Capacity Act 2005, and as exemplified in Mr Justice Hayden’s judgment.  Understanding the process enables us to decide for ourselves whether and how to contribute to it by making our own values and beliefs clear in advance, and stating that we would want, or that we refuse, certain treatments.

    Understanding best interests decision-making  also means we are better able to evaluate – and, if necessary, to challenge – decisions in the courts. 

    Browsing the comments on social media concerning this case (all of which draw on media reports, and not on the published judgment),  I am saddened but not surprised by demonising references to Mr Justice Hayden as “condemning a patient to death” when only God should do so, and protesting against his judgment as authorising “euthanasia”.   

    In a democratic society, it’s important to be able to criticise the best interests decisions of individual judges, and to feel able to challenge the statutory basis (the Mental Capacity Act 2005) in relation to which their decisions must be reached.   But without understanding the process of best interests decision making – and how to intervene effectively into that process – these protests are often wide of the mark.

    Through the Open Justice Court of Protection Project we hope more people will be exposed to the realities of best interests decision-making in practice.  We hope they will use what they learn to improve their own lives (and deaths) and those of their family, as well as to campaign for the medico-legal and social changes they believe are needed.


    Celia Kitzinger is co-director (with Gillian Loomes Quinn) of the Open Justice Court of Protection Project, and co-director (with Jenny Kitzinger) of the Coma and Disorders of Consciousness Research Centre. She tweets @KitzingerCelia

    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

    Footnote

    [1] BBC news (Covid: Judge rules patient paralysed by virus should be allowed to die)

    ITV news  (Judge rules Addenbrooke’s patient paralysed by Covid should be allowed to die

    the national press (e.g. Woman left brain-damaged and paralysed by Covid should be allowed to die, judge rules)

    the Cambridge local press (Addenbrooke’s Hospital: ‘Most complex Covid patient’ will be allowed to die, judge rules)

    and various international news outlets (e.g. Australia, UK woman paralysed by COVID allowed to die, Armenia (UK woman paralyzed by COVID was allowed to die) and in various non-English speaking countries (e.g. Mulher com lesão cerebral esquerda e paralisada por Covid deveria ter permissão para morrer, julga regrasRichter entscheidet, dass Frau, die von Covid gelähmt wurde, sterben darf).

    Photo by Felix Mittermeier on Unsplash

    Secure units and young people: In search of home to call your own

    By Anna Rebowska, 2nd September 2021

    An earlier blog post reports on a COP case in which a 17-year-old girl (anonymised as “N”) endured numerous placement breakdowns and found herself repeatedly detained in Emergency Department and in police stations for her own protection and for the protection of others. 

    N has been diagnosed with autism, mild learning disability and ‘emotional dysregulation’. She has been subject to detention under Mental Health Act but this has been quickly rescinded before transfer from acute hospital to a psychiatric unit took place. 

    Due to the complex nature of N’s presentation, the Local Authority struggled to find a suitable long-term placement that can meet her needs despite a nationwide search. 

    At the time of the last report, N was in a temporary accommodation in an annex of a care home while  the search continued for a provider that can offer her a home and the long-term support  she requires.

    The scale of the problem

    This is not an unusual case. The Children’s Commissioner recently explored this problem in detail producing a report, which highlighted that over the last three years close to 1,500 children have experienced sustained placement breakdown defined as 2 or more placement moves. It has been identified that some groups of children are at particularly high risk of placement breakdown:

    • Older children who have recently entered care – 6.6% of children aged 12-15 who also entered care age 12-15 experienced 2+ placement moves in both 2018 and 2019, more than double the average rate. 
    •  Children with social emotional, mental health (SEMH) and special educational needs (SEN) with 2.8% of this group experienced 2+ placement moves in both 2017/18 and 2018/19 compared to 1.4% of those with no identified SEN. 
    • Children whose first placement during 2018/19 was in a secure/specialist residential placement or children’s home – 7.5% of this group experienced 2+ placement moves in both 2017/18 and 2018/19 (349 children).

    My experience

    As a Named Doctor for Child Protection in a large mental health Trust, which puts me in frequent contact with Local Authorities, I frequently face dilemmas relating to placement search or devising additional supportive resources to try to prevent placement breakdown for children and young people with complex social, emotional and mental health needs. 

    I also work in forensic Child and Adolescent Mental Health Services (CAMHS)where we support young people who are particularly challenging to place because of their convictions and the risks they pose to others. Those young people might have spent a period in secure care but on discharge can often find themselves in unregulated post-16 placements with minimal support – such as B&Bs or in a flat of their own visited by ever-changing care agency staff who have good intentions but little specialist training. The scale of the problem has been examined by the Children’s commissioner in a 2020 report, bringing into the spotlight both the poor quality and spiralling costs of unregulated placements provided by a wide range of private companies. 

    The focus of discussion surrounding those complex cases often relates to the question of whether the young person can be legally detained under one of the sections of the Mental Health Act. There is less attention paid to exploring if they should be so detained and if it is truly in their best interest. 

    There is an assumption that inpatient psychiatric units (where a young person would go if detained under the MHA) will provide access to therapeutic interventions and create a safe environment that will help the young person to heal from their underlying trauma and to develop coping strategies that will allow them to manage in less restrictive environments in the future. It less commonly recognised that whilst an admission to a psychiatric hospital offers an immediate solution to management of short-term risks but it does often come with unintended long-term consequences.

    Admission is an appealing solution and those working with young persons in the community hope that the hospital will be able to ensure their safety and help the person to cope better in future. Unfortunately, while the environmental restrictions of the hospital environment can reduce risk short term,  in the long run we tend to see an escalation in self-harm, which creates a barrier to discharge. A knee jerk reaction to admit can have profound consequences for the young person, particularly if they find themselves admitted to an out-of-area psychiatric unit, 100s of miles away from home and familiar support networks formed by family, friends, school community, their social worker and many other potentially supportive peers and adults.

    Admission to a restrictive hospital environment does not resolve the underlying reasons as to why young people self-harm and may paradoxically increase risk by encouraging young people to move to new and often more lethal ways of harming themselves once access to their usual means is removed. 

    Hospital environments place together many young people with severe difficulties. Although this can facilitate the ,creation of new supportive peer networks it also generates possibilities for young people to become aware of self-harm methods that they were not previously exposed to. 

    Caretakers within hospital environments often respond to episodes of self-harm by placing more and more restrictions on the young person and further diminishing their access to ways of coping. Everyday items and creature comforts, which we all enjoy and take for granted start to be scrutinized through the prism of risk and one by one make their way to a list of things that young person can no longer access. The situation continues to escalate exponentially, sometimes to the point when young people are nursed in a completely bare environment of long-term seclusion, where they continue to self-harm out of boredom, desperation and hopelessness. This creates a life that is hardly worth living and powerfully reinforces suicidal ideations. Any prospects of discharge back to the community move further and further away. 

    This bleak scenario is particularly relevant to young people with autism and learning disabilities. Frequently admitted in crisis, for what is supposed to be short-term care, they find themselves without a clear pathway back to the community and languish in hospital for months and in some cases years. There is no treatment for their core conditions and restrictive regimens of inpatient units combined with overwhelming sensory environments often make their presentation worse. Those issues have been highlighted in multitude of reports, most recently by the Care Quality Commission  (CQC) report with a very fitting title: Out of sight, who cares?

    The way forward

    All children and young people need a home to call their own and psychiatric hospitals do not create environments that are helpful to long term recovery. The key element of an effective strategy to address the current issue of looked-after young people facing prolonged admissions to adolescent psychiatric units and delayed discharges is to look upstream and to try to prevent those admissions from happening in the first place.  In order to achieve that, there needs to be a substantial investment in specialist community mental health services for this group of young people based around the principles of trauma-informed care and offering specialised evidence-based intervention to address complex post-traumatic stress disorder that often arises from the developmental trauma and the difficult, abusive, and neglectful experiences faced by looked-after children early in life.  

    Those include provision of trauma-informed care and evidence-based interventions such as Dialectical Behavioural Therapy (DBT) proven to effectively reduce one of the key reasons why admission is seen as required, which is immediate threat to safety of the young person resulting from deliberate self-harm. The other key area is centred around improving understanding of self-harm among care staff working directly with the young people on day-to-day basis, who do not normally have mental health training. Finally, the need to create lives that are worth living through focus on things that are important to the young people, empowering and handing back control in an age- and developmentally appropriate way.

    The problem that we face is complex and there may well be competing goals between different stakeholders. From the child psychiatry perspective, as well as NHS England and CCG perspective reduction of the length of stay in inpatient psychiatric beds for both adults and young people has always been seen as a positive and has been a long-term strategic goal. Adopting alternative perspectives brought to the forefront of my mind the possible unintended consequences and impact that this approach may have on other systems such as paediatric wards in acute hospitals and social care networks run by local authorities. It explains why attempts at early discharge or strategies designed to reduce the number of admissions can be met with so much resistance from other agencies involved. 

    Unfortunately, at the present moment many healthcare and social care leaders seem to be taking steps backward. The specialist Looked After Child CAMHS teams are increasingly decommissioned with an expectation that the complex needs of this group of children will be met within existing pathways of mainstream CAMHS services. Local Authorities have closed many children’s homes, which resulted in increasing number of young people being placed out of area in placements run by private for-profit providers, severing existing ties with their communities. The waits faced by young people requiring a diagnostic assessment for possible underlying neurodevelopmental difficulties extend, in many areas, to months or years creating barriers to effective support in education and beyond.

    Although the challenges are substantial there is some hope that efforts are being made to tackle them in a systemic way. A once in a lifetime review of children’s social care is currently ongoing and I would like to encourage anyone with experience and interest in this area to contribute to it so that the lens of the review can be as broad as possible and the most thorny and pressing issues brought to the forefront. There is definitely a case for change to be made. The challenge is ensuring that change moves us in the right direction. 

    Anna Rebowska graduated from Manchester University Medical School in 2010. She works as consultant child and adolescent psychiatrist with both inpatient and outpatient experience. She tweets @Belis8686

    Photo by Debby Hudson on Unsplash

    An invisible attention bias: A response to ‘The elephant in the courtroom’

    By Kathryn Mannix, 31st August 2021

    A recent blog post by Celia Kitzinger is a great review of a court hearing and the problems lying behind it, and it’s made me reflect on our attention biases. 

    It is, of course, a breach of guidelines if review dates for treatments and/or decisions pass without the required review taking place. 

    Technically, a decision might be supposed to have lapsed if it exceeds its ‘review-by’ date, but because cessation of treatments (or safeguards) should not take place without a review, the effect of a missed review is usually, simply, to carry on as before. It is commission by default.

    What of missing the review of a ReSPECT form or a Do Not Attempt Resuscitation (DNACPR) decision? The vulnerability here is that, if the decision is deemed to have lapsed,  then CPR might now be administered should the person collapse, not because the grounds for not proceeding have changed, but simply because of the failure to review the decision. Conversely, if the response to a missed review date is to carry on with the same decision, then if circumstances have changed that make CPR a desirable intervention when before it was not, carrying on beyond the review date risks omission by default of a now desirable treatment.

    I wonder what checks and balances we can put in place to ensure that the case managers, care home managers, District Nurses, GPs, ward managers, or consultants nominally ‘in charge’ of a patient’s care do carry out reviews of these decisions using a best interests approach if P lacks capacity.  

     How can we enable people with Power of Attorney to receive a list of all decisions applying to P, with their review dates, so they can advocate for review and participate in the best interests process, especially as, in some cases,  the person with Power of Attorney is (or should be) the Decision Maker?

    Listing and reviewing treatments, decisions and prescriptions

    In fact, simply making that list with dates of all the decisions needed for all patients would be a great start. 

    These things pass hidden in plain sight: care handovers and discharge summaries should include a list of all decisions and prescriptions in place, with their individual review dates.

    After many years as a hospital doctor in palliative care, I understand how this gets missed. 

    After and during the course of an initial acute event, life-saving treatments are given (if not forbidden by an advance decision to refuse treatment) while the team assesses the impact of the illness or trauma, in the hope of good recovery. The best interests decision is often invisible at this stage: trying to save a life is assumed to be the right thing to do and nobody notices that, in effect, one or several best interests decisions have been made.

    So now P has perhaps a naso-gastric tube or PEG; a central iv feeding line; a tracheostomy tube attached to a ventilator. These become ‘the new normal’ and there is an attention bias that assumes continuation of that norm.

    Because withdrawal of a ventilator is so obviously potentially life-threatening, discussions of withdrawal usually trigger an appropriate best interests process. But it’s possible to move P’s care from ICU to ward, from ward to rehab, from rehab to long-term care or home, without re-examining clinically assisted nutrition or hydration, and so P’s treatment continues without re-examination. There is an attention bias that goes unnoticed and unchallenged.

    I’ve often thought that clinically assisted nutrition and hydration should be subject to far more frequent review over its first few months, before it becomes accepted as ‘the new normal’ with associated attention bias towards continuing: at 48h; 1 week; 4 weeks; 3 months; 6 months. Each is an opportunity to review progress and to help loved ones to consider P’s known wishes and discuss them with the clinical team.  At each best interests-based review point, the whole team and P’s loved ones can consider P’s quality of life as improvement/rehabilitation progresses or fails to progress.

    An expectation of regular review and best interests discussions between care team and P’s advocates, attorney(s) or family would prompt examination of all aspects of the decision, and so reduce susceptibility to an invisible attention bias.  Those discussions would also encourage the question that P’s father finally raised in this case: is clinically assisted nutrition and hydration in P’s best interests –  allowing it to arise in a far more natural way, without seeming to be nihilistic or death-seeking, and without relying on family to raise it.

    The Big Picture

    Judges in the Court of Protection need to be aware of the Big Picture, both legally and medically, for the people who come before them. The Big Picture includes knowledge and understanding of guidelines for medico-legal decisions that require the attention of a higher court, lest those issues are overlooked when they should be noted and referred upwards. An attention bias towards ‘what we deal with here’ can overlook other aspects of a patient’s situation. That seems to have happened in this case.

    The Big Picture a judge must be aware of also includes an understanding of medical decision-making that takes place not in the contemplative atmosphere of a courtroom but in the urgent hubbub of an Emergency Department, a Stroke Unit or other place of urgent care. 

    Urgent life-preserving decisions merit reconsideration as time passes, and judges need to understand how medical attention bias arises not as a personal failure of individual clinicians but rather as a human systems error. 

    Perhaps, as part of their training for their role, judges might benefit from joining us on ward rounds and spending shifts with us in the Emergency Department. It would be a fascinating exchange of insights to have a judge join us during best interests meetings when we are grasping for the most suitable decision for a person lacking capacity to decide for themselves, and whose loved ones may be engaged in the process or, alternatively,  may be struggling to allow a decision to be made in a manner compliant with the Mental Capacity Act. 

    Joining us in the world of medical decision-making might be of huge benefit to judges who need to understand the process P and family, and clinical teams, have been through. It would help them to help us all, as we seek to maintain an overview of the care, protection, freedoms and treatments of people whose rights require our protection and diligence.

    Kathryn Mannix is a retired palliative care physician. She campaigns to raise public understanding of the process of human dying and to encourage people to plan ahead, with their loved ones and medical advisers, to ensure their care and treatment aligns with their values and wishes. Her book about the way people live while they are dying, With the End in Mind, is a Sunday Times best-seller and was short-listed for the Wellcome Book Prize. Her book about navigating important conversations, Listen, will be published in mid-September 2021. She tweets as @drkathrynmannix

    Photo by Jo Wroten on Unsplash

    Should P go to live with her family in her country of birth?

    By Claire Martin, 25th August 2021

    On 12th August 2021, I attended a hearing (COP 1324896T) with District Judge Beckley at First Avenue House, London. It started at 10.39am. The case has been before the court since 9th May 2018, initially with District Judge Mort. The applicant is P (via her litigation friend the Official Solicitor) and the respondents are (1) the Local Authority, (2) P’s daughter, (3) P’s granddaughter and (4) P’s financial deputy. 

    P is an 87 year-old woman, currently (and for the past 50 years) living in the UK. She – and her family – wish her to return to her country of birth to be with, and be (partly) cared for by, them. During the hearing we heard (from P) that her husband has died, she misses him very much and she absolutely does not wish to live in a care home. She is currently living in her own flat, with carers attending (though I am not sure about the frequency of attendance or the type of care they provide, it is clear she has a substantial package of 1:1 care). 

    As I sat waiting for the hearing to start, the number of those joining the MS Teams call rose and rose. In the end, there were 14 people in attendance, plus DJ Beckley and me. I am still not clear who everyone was, but this was my list:

    • P herself (assisted by her carer). 
    • Counsel for P, instructed by the Official Solicitor – Sophy Miles.
    • Counsel for the Local Authority – Tara O’Leary
    • P’s Social Worker 
    • P’s financial deputy 
    • ? possibly Official Solicitor
    • ? possibly LA solicitor
    • Someone who is helping to find out about safe, escorted air travel
    • P’s daughter (connecting from abroad)
    • P’s granddaughter (also connecting from abroad, and with P’s daughter)
    • ?
    • Interpreter

    A Hearing Crossing Continents and Languages

    DJ Beckley introduced the hearing and, I thought, showed a clear eye to ensuring all people felt, and were, included in proceedings. It was a difficult job for him; and it was a difficult hearing for others to be part of – P herself, her family abroad and the other participants too. The remote connection worked well from a technology perspective, though as always, it is very difficult for people not to speak over one another. 

    DJ Beckley first thanked the interpreter for attending and agreed the process for interpretation – that each section of dialogue would then be interpreted, in real-time. He introduced me, as the sole observer, and I needed to unmute myself and confirm that I had received and understood the Transparency Order (which I had received prior to the hearing – not always the case). DJ Beckley then asked Sophy Miles, counsel for P, to summarise the case so far. 

    P originally came to court in 2018 as part of a s21a Mental Capacity Act application – this is when a deprivation of liberty authorisation is challenged. P was in a care home and did not want to be there. P was deemed to lack capacity to make decisions regarding her residence and care, as well as her property and affairs. The court subsequently declared that P did indeed lack capacity for these decisions, as well as lacking capacity to litigate, hence her representation by the official solicitor. At some point, however, she moved from the care home to her current home, which is her own flat, supported by a package of care. 

    P is a vivacious and accomplished woman – and, though she was often upset throughout this hearing, she knew her own mind and expressed her views throughout. P speaks four languages, is a fantastic cook, an excellent knitter, reads the newspaper from her country of birth regularly and, when in better health, travelled between the UK and her country of birth to visit family. 

    She has many physical health conditions to deal with – diabetes, osteoarthritis, osteoporosis, ischaemic heart disease, hypertension and asthma. She is also reported to have ‘cognitive impairment’. Though a causal diagnosis for this was not discussed, P takes Memantine which is a medication for people with a diagnosis of Alzheimer’s type dementia. It will be the cognitive impairment that brings her capacity to make certain decisions under scrutiny, and it is likely to have been discussed in more detail at a previous hearing. 

    In June 2020 P’s daughter and granddaughter were added as parties and the issue for the court has since focused on P’s best interests regarding whether or not to move to her country of birth. Sophy Miles explained that this was a final management hearing, to decide on the next steps required, before a final hearing can take place. 

    Meaningfully Involving an ‘Incapacitous’ P in Proceedings

    It quickly became clear that P wished to make the judge aware of her thoughts and feelings. DJ Beckley took time to assure P that he was interested in her views and would make time for her to be heard. 

    Early on, Sophy Miles noted that P’s deputy had concerns about her money ‘expiring within two years’ if P moved to her country of birth, necessitating a move to a care home there. P immediately interjected, very upset: “No, No! I don’t go nowhere”. 

    DJ Beckley replied: Can I try to reassure you? We are not suggesting you should move now into a care home. We all understand that you wish to live in your own home and – if we can work out the practicalities – in [your country of birth].

    P (via the interpreter): I’m not stupid. I speak four languages. I know how to keep a home. You’ll never see me dirty. 

    P was crying at this point and the judge attended to her distress, saying he was sorry she was upset and that these hearings can be difficult, especially when remote. It was very hard for P to calm down and listen to what others were saying and she repeatedly interrupted proceedings, in an upset and agitated state. I felt for her, and for everyone at the hearing. It seemed that all parties were trying to do their best and a lot of work had happened in the background. For example, exploring possible escort services for air travel for P, should it be decided to be in her best interests to return to her country of birth; making contact with the equivalent of a social worker in that country to discuss handover of care needs; identification of potential independent guardians for P’s finances if she moves.  The Local Authority and the Official Solicitor (and others) had clearly worked together productively and in the service of trying to progress the issues at hand. 

    DJ Beckley explained (several times) to P that he needed to hear from everyone in turn, and that he would come to her for her views. Her family, carer and the interpreter sought to reassure her that she would be listened to. 

    Respondents’ Positions

    The Local Authority (and the Official Solicitor and P’s financial deputy) has concerns about the sustainability of P’s finances and suitability of the home environment if she were to move, whilst acknowledging the potential emotional benefits for P of being close to her family. P’s deputy had calculated that her money would last 2-3 years at most, on the costings he had available for living near her family. A key consideration is that, were she to remain in the UK, the CCG (which currently funds 25% of P’s care) has confirmed that it would fund 100% of her care when her funds expire.

    There remained uncertainty about the care and accommodation proposed for P, were she to move abroad. There has also been some disquiet expressed by another family member regarding P’s daughter’s motives for bringing her to where she lives and overseeing her care, and potentially finances. Her daughter and granddaughter have agreed to make a witness statement detailing the proposed provision for P, including how her finances will be able to support her sustainably:

    Judge: I hope you understand how important it is for me to ensure she will be provided for if she moves – including her funds. I’m not seeking this information to be awkward – I want to ensure she will be OK. I also need to ensure she’ll be looked after if she flies home, that it’s in her best interests.

    Daughter (via interpreter): I haven’t spoken much. She will be well looked after – she wouldn’t have to wait months and months for her teeth or a wheelchair. It doesn’t work like that in [country of birth]. …. I promised her I would bring her over. I beg you to bring joy back. My daughter and I will take care of her – we don’t need a guardian, we can look after her. Just give this back to her. 

    Obviously P heard all of the conversations, and each exchange renewed her distress and her urge to interject and express how upset she felt. She was crying for much of the hearing and, throughout, the judge sought to help her understand what steps he was following to enable him to understand how best to help her. I thought he was kind and compassionate, didn’t seek to stop her being upset, and rather offered a narrative that she might better understand the process and feel some reassurance from that knowledge. 

    At the same time, since June 2020, so over a year, this issue of whether it is in P’s best interests to return to her home of birth has rumbled on. I could relate to her and her family’s frustration at the slow pace of things – even though this might not be anyone’s fault per se, it reveals a system that is slow to resolve important life issues when capacity to make those decisions oneself is lost; and P in this case is 87 years old. 

    P speaks for herself

    When it was P’s turn to speak, she said the following: 

    “From what I understand – I haven’t eaten well here, I live on dry bread, [shouting at this point] they don’t feed me here properly. My house was an open home – people came to eat my food. Here I have suffered. If my husband was alive this wouldn’t have happened. [at this point P’s daughter was in tears]. I can’t go anywhere.

    I do want to move, but I don’t want my UK citizenship to be taken away.”

    It transpired that P was used to going out, with cash in her purse, getting the food she needed, cooking it (for many people) with a feeling of purpose. Since moving into the flat, with carers, (I think) she has been unable to do this. There was some discussion about not wanting to use a card, only cash, and the judge talked about some shops only taking card payments now. I felt so sad for her that this, one of life’s daily pleasures for her, had not been made possible (though of course I do not have any detail of her abilities to do the things she was missing). 

    Judge: I understand you’d like your own flat and to be looked after by your family and people like [carer] who is with you now?

    P: Of course! Yes I want my own apartment. 

    Judge:  Can I check some other things? I understand your false teeth are not comfortable.

    P: [gesturing to her teeth] The person making the teeth was useless – they’re not a full set, just the middle. I can’t eat like that! I need a full set of teeth. How do you expect me to eat?!

    DJ Beckley also addressed delays with a new wheelchair. The Social Worker informed that an    
    independent dentist has been secured for a second opinion and the correct wheelchair is ‘on 
    schedule’ and due to arrive in the next week or two. P’s granddaughter explained that ‘food is a big trigger. She needs a cook from (country of origin) community – ‘just one meal a day that’s appropriate to bring’. The judge affirmed ‘clearly food is important. The carer and deputy have heard this – I understand how important food is for people to feel well. I hope people have heard that’. 

    This was a brief respite in an otherwise distressing hearing – P’s face relaxed and she smiled, speaking in her first language. Her granddaughter said that P ‘made an invite for all of you to eat her food’ and DJ Beckley asked P to send him a recipe. Everyone was smiling at that point – and it brought some relief to the proceedings. 

    The judge then expeditiously moved the hearing along to determining a final hearing date. This will be on Wednesday 13th October at 2pm. I don’t think I will be able to attend. I do hope that P can find comfort and purpose wherever she lives – it seems as if everyone is keen for her to live where she wishes, which is in her country of birth, alongside her daughter and granddaughter. The best interests process in the UK needs to satisfy itself that this is, indeed, the right place for her to be. 

    Brief Reflections

    I haven’t attended a hearing before where P has been as vocal, or as distressed (as far as I am aware), by the proceedings. I felt quite distressed myself throughout the hearing, even when P wasn’t speaking, because I could see the pain in her facial expressions and that she was crying for much of the hearing. 

    DJ Beckley’s approach was compassionate. He handled the frequent disruptions to the process with humanity and a lightness of touch. In particular, I noticed that at no point did he ask P to stop crying or to calm down – instead he validated her feelings and tried to explain to her, in understandable language, what was happening, what he needed to know and what he was going to do next. I thought this was exemplary practice – trying to stop people from expressing their feelings can often be about our own discomfort, rather than about what might be best or most helpful for them. I did wonder whether P might have been offered the opportunity to go first in expressing her views – it was hard for her to listen to others’ views without having had a chance to speak. This might have been difficult for her even if she had gone first, since certain topics (such as whether a care home would need to be considered) were very upsetting for her, understandably. 

    P was certainly able to convey her determination, the sense of herself as a woman who knows how she likes to live her life, and her absolute horror at the thought of living in a care home. Her voice came across very powerfully – and I came away thinking that, even though it was clearly a distressing experience for her, it might also have been very important for her to know that those charged with making decisions for her, had witnessed her views directly. 

    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

    Photo by Daniele Levis Pelusi on Unsplash

    The elephant in the courtroom: Clinically assisted nutrition and hydration in a hearing about care and residence

    By Celia Kitzinger, 23rd August 2021 (Note: This blog has been revised and corrected following correspondence with the two barristers in the hearing I observed. Thank you to both of them for the time they spent on this.)

    I’m profoundly disturbed by this case (COP 12913981) before District Judge Beckley, which has been slowly progressing though the Court of Protection for more than two years[1]

    It represents a missed opportunity for the court to engage with a vulnerable person’s best interests in a holistic way.  I want to understand how this happened and what can be done to ensure that it doesn’t happen again.  

    One benefit of the court’s commitment to transparency (especially in a hearing like this which is unlikely to lead to a published judgment) is that it creates the opportunity for public observers who are concerned by what they’ve heard in court to offer constructive feedback, and hence contribute to the possibility of change.

    The case

    The question before the court was where the protected party (P) should live and receive care.  

    She’s a woman in her 40s, described as being in a minimally conscious state (MCS) following acute demyelinating encephalomyelitis in 2016. Since being discharged from a world-famous neuro-disability hospital with an MCS diagnosis (from a consultant who said to her father, “this is as good as it gets“), she’s been living in a specialist neurological centre for the last five years. There are some indications that she may have in fact regained consciousness (albeit with severe brain damage) and have ’emerged’ from MCS, although this cannot be known for sure one way or the other without further medical evidence.

    Proceedings were issued on 17th July 2019.  They concern a difference of opinion between the applicant (P’s mother) and the other parties (including P’s father who was divorced from P’s mother decades ago), as to whether P should relocate to live in her mother’s home.  It has now been agreed that she should remain in the care home, with a few outstanding issues still to be resolved about various investigations and treatments[2].

    In focussing solely on the issue of where P should live, the court omitted to consider a key welfare issue. 

    Eventually, this was raised by P’s father (who, like P’s mother, was a litigant in person).  He “found the courage to broach this” in an advocates’ meeting shortly before the hearing on 30th July 2021. He believes that continuing clinically assisted nutrition and hydration (CANH) is not in his daughter’s best interests.  

    This has been, for him, the “elephant in the room” – the huge, uncomfortable, challenging concern that has remained unspoken throughout the last two years of protracted courtroom discussions about where his daughter should live.  

    He says he has never been asked for his views about what his daughter might have wanted in relation to life-sustaining treatment in her current situation.

    Nobody has ever asked me about the treatments she’s getting.  It’s taken me to say to those involved, ‘why hasn’t this been done?’  It’s a very long time that [my daughter] has been in this condition.”  

    It doesn’t surprise me that health care professionals failed to carry out proper best interests assessments as to whether or not CANH was in their patient’s best interests and simply provided it by default, without consulting about the patient’s values, feelings, wishes and beliefs. That happens frequently. The ethos that supports treatment by default is pervasive.  It was robustly challenged recently – in relation to just one particular hospital – in a supplementary hearing before Mr Justice Hayden (blogged here), but the problem is pervasive.  To see yet another patient with a prolonged disorder of consciousness being treated with CANH without any apparent best interests consultation in relation to this treatment feels like déjà vu.

    What makes this case different, though, is that lawyers allowed this situation to continue unchecked for two years, while questions about residence were addressed.  

    The Court of Protection is famously “inquisitorial”.  That means that the court is actively involved in investigating the facts of the case and is not confined to dealing solely with the issues put before it.  Its job is to look at the protected party’s best interests ‘in the round’.  

    The two barristers in the hearing I observed were Mungo Wenban-Smith of 39 Essex Chambers (instructed by Lauren Anderson of Irwin Mitchell) for the Official Solicitor and Nageena Khalique QC of Serjeants Inn Chambers, for the Clinical Commissioning Group (instructed by Munpreet Hundle of Capsticks).  For both, this was the first time they had been instructed on this case, having replaced previous barristers, who had been involved over the previous two years. The failure to raise best interests in relation to CANH cannot therefore be attributed to either of them as individuals. Both are experienced Court of Protection barristers and have been advocates in several hearings I’ve observed recently concerning CANH and best interests for patients in prolonged disorders of consciousness.  

    So, prior to the involvement of these two experienced barristers, two (unknown to me) Court of Protection legal teams – one for the OS, one for the CCG – allowed a case about care and residence to continue for two years, without checking that the care being provided in the form of CANH was in P’s best interests – when at least one family member has been sure throughout that period that it is not what she would want for herself, although he has until very recently felt unable to say so. 

    For P’s father, it’s “cruel” to continue to give treatment to keep P alive in a state she would find intolerable, and any improvement in her level of consciousness would only serve to make her “more aware of her plight”.  And P’s brother, also in court, expressed concern about continuing CANH without a full assessment of “what P herself would see as an acceptable quality of life”.  In his view that would involve “at the very least, being able to feed herself, attend to basic toilet needs and a means of effective communication”.  It is unclear to him whether or not these are achievable goals.

    I don’t know whose responsibility it is to raise questions about P’s medical treatments in a Court of Protection case focussed on a dispute about care and residence.  One problem may be that in fact there is nobody who can be clearly identified as having such a responsibility. Here are my reflections.

    The Judge

    The District Judge who heard this case, DJ Beckley, said explicitly that a decision about withdrawing CANH was “outside my scope[3].  If a judicial decision was needed it must go before a more senior judge. 

    He explained to P’s father that a court hearing may not be needed.  The responsible decision-maker (I think it’s probably the GP in this case, although there is also a treating neurologist who may have overall responsibility for P’s care) can make the decision that CANH is not in P’s best interests, and stop treatment, following a proper best interests consultation process – so long as everyone agrees (and – my addition – if the decision is not “finely balanced”).  There would then be no need for a judge to be involved.  But if there is disagreement (or if the decision is finely balanced), then the case must be heard by a Tier 3 judge and “the High Court judge would take over from me in relation to current proceedings too”. 

    District Judge Beckley was kind and courteous to P’s father and made a point of saying that he recognised how “courageous” P’s father had been in raising the issue of CANH-withdrawal: “I understand why this must have been a difficult statement for you to make”. It seemed to me that (within the limits of his remit as a district judge) he wanted to support matters going forward.

    He said he was not aware of the national guidance about CANH and seemed to think it was not necessary that he should be, given that – as a district judge – he would not ever be in a position to make a withdrawal decision.  (“This for judges more senior than me.”)

    I understand his position.  But if he had been aware of the guidance – and, importantly, aware of the fact that the guidance is often not followed – he could have intervened at an early stage in this case to ask for evidence from the Clinical Commissioning Group (CCG) that they had complied with it.  There should have been minutes of a best interests discussion, including evidence of consultation with family members, showing their agreement that CANH was in P’s best interests and what P would want for herself in this situation.  It seems there is no such documentation.  The failure of the CCG to produce it as requested would have uncovered the problem. The CCG could then have been instructed back in July 2019 to carry out a proper best interests assessment (as they have now finally been required to do).

    Routinely requesting evidence that best interests decision-making has been carried out in relation to CANH, as required by law, could provide an extra layer of protection for P, whether or not anyone is contesting it.  This layer of extra protection is particularly important given evidence that there are often gaps in this aspect of care[4].

    I hope that one outcome of publicising this case might be that Tier 1 and Tier 2 judges could be advised in future to be aware of the national guidance and to be alert to cases like these where CANH (or any other active intervention) is provided to a patient who cannot consent to it.  It could be made explicit that they can use the inquisitorial nature of the court to inquire as to whether the proper processes have been followed to ensure that continuing CANH is in the patient’s best interests.

    Legal team for the Clinical Commissioning Group

    The legal team representing the Clinical Commissioning Group– or alternatively, in other cases, the Trust or Health Board – might perhaps be expected to want to know that their client is acting in accordance with law and professional guidance. The national guidance is clear as to the responsibilities of CCGs (and Trusts/Boards): they should ensure that regular best interests reviews of CANH are taking place (Box 5.3) and that these are a standard part of the patient’s annual review (Box 5.4).

    (National Guidance on CANH and adults who lack the capacity to consent p. 37)

    Counsel for the CCG could have raised the matter of CANH with their client (even though it was a section 21A case) to check that annual reviews of best interests decision-making about CANH had been carried out as required.  If there are systemic problems with doing this, they should be addressed.

    In fact, just a few months before legal proceedings began, on 26th March 2019, there was a Continuing Health Care review.  It was noted that “there has been little change since last review… She is PEG fed and the focus of her care is maintenance and to prevent deterioration”.  If the legal team for the CCG received this review (as surely they must have), and if there was no indication that there had been any best interests discussion about whether “maintenance” via PEG feeding was in the patient’s best interests, they should surely have raised this with their client.  The question of best interests and CANH was hiding in plain sight.  The problem may be that a lot of section 21A cases are dealt with by junior barristers who may have no experience in CANH at all.

    In the hearing I observed, I was concerned to hear how counsel for the CCG responded to P’s father when he raised concerns with current or possible future treatments other than CANH that might be life-sustaining for his daughter.  These also should have been the focus of best interests decision-making. But he explained that he didn’t know whether or not his daughter would be resuscitated if her heart stopped.  He remembered years ago, when she was in a world-famous rehabilitation hospital, that a consultant had shown him a Do Not Resuscitate Order but he realised that this might not apply now that she had moved from the hospital to the care home.  He knew that she had already been double-vaccinated against covid, but didn’t want her vaccinated against influenza: “If it comes along and takes her away, that would be a blessing”.  And he asked: “Any treatments that P gets in the future, could those responsible inform me what those are before they carry them out?”

    This seems to me a reasonable request.  All the treatments P receives require best interests decisions. As such, P’s father can and should be offered the opportunity to contribute to them as someone who cares for P and is interested in her welfare (Mental Capacity Act 2005, 4(7)(b)).  He is an entirely appropriate person to consult.

    Counsel for the CCG responded by saying: “it is too broad an ambit to suggest a need to discuss all her medical treatment. She is receiving medical treatment every day.  It’s not appropriate to micro-manage the day-to-day treatment required.  If we’re now throwing open  this wider question of medical treatments – whether that needs to be the subject of litigation or argument is questionable”.

    Nothing in P’s father’s question suggested to me that he wanted to “micro-manage” his daughter’s care.  The two issues he specifically raised – CPR and flu vaccination – are appropriate topics for his input.  They will also be issues addressed as part of the broader medical context within which any decision about CANH will be made.

    I felt very sad for P’s father.  He had finally got up the courage to express his long-standing concern that his daughter would never recover to a quality of life that she would value.  He was asking whether – in that case – continuing PEG feeding was actually in her best interests.  It shouldn’t have been his job to raise the question: he had been pushed into a situation in which he’d had to, because those with formal responsibility for best interests assessments (including the CCG) had failed to do so. 

    Legal team for the Official Solicitor

    The Official Solicitor is charged with representing P’s best interests.  In a case focusing on a dispute about where P should live, it is inevitable that best interests in relation to residence take precedence.  But in this case, the Official Solicitor’s focus on the section 21A proceedings seems to have eclipsed other issues entirely.  Should it have done?  Is there a role for the Official Solicitor to consider P’s best interests ‘in the round’? Is there a way around the funding issues (e.g. with legal aid and OS representation) to enable P’s bests interests to be fully addressed? 

    I got the impression that the Official Solicitor felt ambushed by the new issue concerning CANH.  Addressing the judge, counsel said: “I take very seriously the points [Father] has raised but my instructions for today’s purposes are focused on enquiries directed by you in this case to the more straightforward issues, frankly, as to what care and accommodation is in her best interests”.  

    He recognised, however, that the issue of whether CANH is in P’s best interests now needs to be properly addressed in accordance with the Guidance and “may well overwhelm these proceedings”.  

    Insofar as the Official Solicitor is supposed to be alert to P’s best interests, to assess them and promote them in the round, it seems that didn’t happen over the course of the last two years.  I hope for a more holistic and proactive approach from the Official Solicitor in future cases. 

    The way forward?

    In other courts (and tribunals) all sorts of decisions are made about people in prolonged disorders of consciousness – including where they should live and the kind of care they will receive – without any consideration of whether or not CANH is in their best interests[5].  But I didn’t expect the Court of Protection to go down this route.  It’s extremely disappointing to see what’s happened in this case.

    Section 21A hearings are very common.  I am now worrying that there may have been other cases like this one, i.e. disputes about residence for patients in prolonged disorders of consciousness in which nobody raised the question of whether continuing CANH was in the person’s best interests.  

    People who are being provided with CANH who don’t have capacity to consent to it can potentially be at the centre of a wide range of Court of Protection hearings – concerning (for example) Section 21A, DOLS, or s.16 health and welfare cases, to list just the most common.  If judges in these cases are not alert to CANH as a best interests issue, and if neither the Official Solicitor nor counsel for the CCG, Trust, or Health Board raises the issue, then health professionals’ (frequent) failures in CANH best interests decision-making are not being picked up or challenged.  Patients can become the subjects of extensive and long-running Court of Protection cases in which the absence of robust best interests decision-making about CANH passes below the court’s radar. That’s what would have been the outcome in this case, had P’s father not intervened.

    If in fact nobody – not the judge, not counsel for any party – can be held responsible for raising a question about CANH in court cases like these, there will be many cases where the “elephant in the room” remains unaddressed.  This leaves the court dealing with matters of secondary importance, deflecting it from engaging with a fundamental ethical question that should be at the heart of the case.  What can be done?

    It is desperately sad to find that a vulnerable adult has been given medical treatment that may be contrary to her best interests over the last two years, in part because neither the judge, nor any of the solicitors and barristers involved in this case over the previous two years, thought to raise the matter.  

    The plan in this case, as outlined by Nageena Khalique QC, is that the CCG will instruct an independent expert and set up a best interests meeting within a matter of weeks to consider the issue of clinically assisted nutrition and hydration. If all parties agree as to a clear way forward in P’s best interests there will be no further court hearings on this matter.  Alternatively, the matter will come before a Tier 3 judge as soon as possible[6].  

    Best interests meetings about the PEG should have been routine for this patient. This course of action should have been taken years ago.  

    The GP, the treating neurologist, the care home, and the CCG bear a heavy responsibility for not having ensured that the decision to prescribe clinically assisted nutrition and hydration was kept under review.  

    The Court of Protection bears a heavy responsibility for allowing the question of where P should live to eclipse her wider best interests for so long.

    I have learnt to expect more of the Court of Protection.  

    I hope some consideration can be given to what has gone wrong in this case, and how the court can ensure that nothing like this happens again. 


    Celia Kitzinger is co-director (with Gill Loomes-Quinn) of the Open Justice Court of Protection Project and co-director (with Jenny Kitzinger) of the Coma and Disorders of Consciousness Research Centre.  She tweets @KitzingerCelia



    [1] I chose to observe this hearing (via MS Teams on 30th July 2021) because P’s father had contacted me a few days earlier for support with ensuring that his daughter’s best interests were addressed.  I explained this in my letter to the court asking to observe the hearing.  In reporting on this hearing, I have drawn only on the position statements and hearing itself as I would normally do as a public observer blogging from the Court of Protection – with one exception.  The phrase “the elephant in the room” is one P’s father used both in an email and in later conversation with me via Zoom.  He did not use this phrase in court, but gave me permission to use it in this piece. (I also spoke with P’s brother before the hearing, but again have drawn only on what he said – or was publicly quoted as having said – in court.)

    [2] The fact that it has taken in excess of two years since proceedings were issued on 17th July 2019 to come to a decision about P’s residence is also concerning.  There were 8 months between issuing proceedings and inviting the Official Solicitor to act as litigation friend. The first hearing at which P was represented was 11 months after proceedings were issued (proceedings having been reconstituted as s.21A).  At that hearing, a report was requested about P’s diagnosis and rehabilitation potential.  The treating neurologist declined to provide one, so 2 months later a neuro-rehabilitation consultant was asked to provide a s. 49 report. She requested further medical records, requiring an additional third party disclosure order – and then went on sick leave, eventually providing the report 7 months after having been instructed.  While waiting for the report from the consultant,  three hearings were vacated – in January, March and May 2021. The hearing I observed on 30th July 2021 was two months after the report had been received – and it was 2 years and 13 days since proceedings were issued.

    [3] We are not allowed to audio-record court hearings so where I’ve quoted what was said in court I have relied on notes made at the time.  They are as accurate as I can make them, but are unlikely to be word-perfect.  

    [4] See Wade, D & Kitzinger, C (2019) “Making healthcare decisions in a person’s best interests when they lack capacity: clinical guidance based on a review of evidence”, Clinical Rehabilitation; Kitzinger J & Kitzinger C. (2017) Why futile and unwanted treatment continues for some PVS patients (and what to do about it)  International Journal of Mental Health and Capacity Law. pp129-143; Kitzinger, J & Kitzinger, C (2016) Causes and Consequences of Delays in Treatment-Withdrawal from PVS Patients: A Case Study of Cumbria NHS Clinical Commissioning Group v Miss S and Ors [2016] EWCOP 32Journal of Medical Ethics, 43:459-468. Kitzinger, C and Kitzinger, J (2016) ‘Court applications for withdrawal of artificial nutrition and hydration from patients in a permanent vegetative state: Family experience‘, Journal of Medical Ethics, 42:11-17.

    [5] See for example this case before an immigration tribunal, and the numerous cases heard on the Queens Bench involving financial settlements and calculation of life expectancy (e.g. the case of the young man catastrophically injured by a negligent driver here or the 18-year-old injured as a passenger in a car driven by her boyfriend here). I have been told by two members of different families previously involved in cases involving financial settlements that when they raised the question of whether CANH was in their relative’s best interests, they were advised by lawyers to wait until the financial issues had been agreed (in both cases, this meant several years) before raising the matter with treating clinicians. And although treating clinicians should have raised the matter with the families concerned, they did not.

    [6] In explaining the future course of action to P’s father, DJ Beckley said (twice) that if it was not possible to reach agreement in a best interests meeting, then “it is open to any of the parties to make an application for withdrawal of CANH”.  This is factually correct, but the national guidance states: “Where an application to court is needed, proceedings should be initiated and funded by the relevant NHS body responsible for commissioning or providing the patient’s treatment. In Wales this will be the Health Board. In England it will be either the CCG or the NHS Trust depending on where the patient is being treated. This is particularly important given the high cost of legal proceedings and the lack of legal aid available for families to take such cases” (p.40, section 2.9).  It would have been helpful if the judge had made clear that it was the responsibility of the CCG to make the application in this case (although I suspect the current counsel for the CCG already knows this).  It’s also important to note that the application does not have to be “for withdrawal of CANH” (as the judge put it), but rather for a determination of P’s best interests in relation to CANH – which means that an NHS body wishing to continue CANH, or taking a neutral position, is equally responsible for making an application to the court where there is a disagreement about best interests.  This may seem a small point and the all counsel in this case may well already have known the proper procedure to follow, but I’m concerned that judges should understand and communicate the recommendations in the guidelines accurately to family members, who may well be daunted and deterred by the prospect of having to make an application to court.

    Covering the Court of Protection – a journalist’s take

    By Polly Rippon, 16th August 2021

    I recently wrote a piece about a Court of Protection hearing I observed. It was published in The Times with the headline: “Family tries to stop marriage of woman with learning disability and £1m fortune to conman”.

    There’s also a blog on the Open Justice Court of Protection website about the same hearing, written by a public observer, Celia Kitzinger, “Controlling and coercive behaviour: A hearing before Roberts J”. 

    These are two very different reports of the same hearing.  We watched it together but produced very different accounts, for very different audiences.

    The blog account has been read by just under 1,500 people – a specialist audience composed largely of people working in health and social care, and lawyers in the Family Court and the Court of Protection.  My newspaper report will have been read much more widely: The Times has approximately 1.5 million readers daily in print and online.

    This is an account of why and how journalists’ reports of hearings are typically so different from the pieces written by bloggers for projects like the Open Justice Court of Protection Project.

    My background

    I have been a journalist and court reporter for over 20 years and I teach media law and court reporting in the Department of Journalism Studies at the University of Sheffield.

    For the majority of my career, I have reported on cases in the criminal and coroners’ courts mainly in and around South and West Yorkshire. I have covered high profile cases, including numerous murder trials and I also attended the Hillsborough inquests in Warrington, so I am more than familiar with covering the courts.

    However, I had never covered the Court of Protection before, nor been to any kind of Family Court hearing, and my interest was piqued by reading some of Professor Celia Kitzinger’s blogs, which I stumbled across on Twitter.

    I felt journalistically they were not only newsworthy stories but also raised important societal issues which warrant discussion in an open forum.

    Traditionally, journalists and newspaper editors have shunned reporting of Family Court and Court of Protection proceedings because of the strict reporting restrictions that almost always ban identification of the parties involved. News-wise a story is deemed to be a ‘better story’ if you know who is involved and what has happened to them – just as quotes are better coming from named people rather than unnamed ‘sources’.  So journalists tend to stick to covering the criminal courts and inquests because parties in those cases can generally be named.     

    As a society though, we need to be educated about the issues being considered in both the Family Court and in the Court of Protection, so that  – if necessary –  we can hold the authorities to account and push for change and reform.

    There are some excellent journalists doing important and pioneering work in this area – such as Louise Tickle, who is working hard to shine a light on some of the decisions being made in the ‘shadowy’ family courts.    

    Writing a newsworthy court report

    Writing a court report is very different from writing a blog post.

    The late Harold Evans, author of one of the best books on journalistic writing, Essential English for Journalists, Editors and Writers (Pimlico, 2000), said:    

    It is not enough to get the news. We must be able to put it across. Meaning must be unmistakable, and it must also be succinct. Readers have not the time and newspapers have not the space for elaborate reiteration. This imposes decisive requirements. In protecting the reader from incomprehension and boredom, the text editor has to insist on language which is specific, emphatic and concise. Every word must be understood by the ordinary reader, every sentence must be clear at one glance, and every story must say something about people. There must never be a doubt about its relevance to our daily life. There must be no abstractions.

    If you are writing for a newspaper, you will have very limited space and in this case three days of evidence and a notepad full of shorthand notes that had to be condensed into 400 words.

    The first thing that needs to be considered is the audience.

    Who will be reading the story? Where will it be published? This will set the tone of the report.

    Court reporting is formulaic and although many of the ingredients going into the story will be the same for different publications – for example what happened, how, when, where and to whom? – the language used in a broadsheet newspaper article may be different to that used in a story written for a tabloid. 

    Court copy must also be legally sound – in a nutshell reporters can publish anything and everything said during proceedings held in public in England and Wales as long as there are no reporting restrictions and their copy is ‘fair, accurate and contemporaneous’. Essentially this means both sides of the story are included, the information reported is accurate (this is where shorthand comes in) and it is published as soon as practicable after the hearing takes place.

    This gives the publication a defence of Absolute Privilege and protects it against an action for defamation if something defamatory is said by any of the parties in court.     

    The ‘intro’

    Once the reporter knows who the story is aimed at, they need to encapsulate the case in a striking first paragraph which tempts the reader to read on.

    This is what’s known in the industry as the ‘intro’ and mastering the intro is one of the first things trainee journalists learn. It is more important than ever in today’s digital age, when publications are battling it out for clicks and sales in an over-crowded market. 

    The intro should contain new and exciting human interest detail and summarise the story in fewer than 20 words, ideally. 

    At journalism college I was told to imagine how I’d summarise the story for friends in the pub when trying to write my intro.

    In this case, the intro was obvious to me – it’s a shocking and unusual case – not something I’ve ever heard of or come across before. The intro had to contain the fact it was a legal battle, the parties involved, the mother’s vulnerability, the man’s previous history and the approximate value of her estate – these were the key ingredients for me.

    Essentially, a daughter had gone to the extreme measure of asking a judge for an injunction preventing her vulnerable mother’s partner from contacting her mum, marrying her or entering into a civil partnership with her after she discovered he had a string of previous criminal convictions for defrauding vulnerable women. 

    The court was told the woman, who is in her sixties, has a lifelong learning difficulty and arterial brain disease. She has been deemed incapable of making her own decisions about her property and finances. And expert witness, psychologist Professor Rob Dubrow-Marshall said she had been coerced and controlled to such an extent by her partner that he had effectively ‘substituted’ her mind for his. 

    One of the biggest challenges of writing an intro in a story like this is getting all the interesting and relevant detail into the first paragraph. There is no right or wrong way to write it – every reporter will come up with a slightly different version or angle but the newest, most shocking information needs to be in the story.  Here’s the opening sentence in my published story:

    Compare this with the opening sentence of Celia Kitzinger’s blog post, which just doesn’t have the same impact: 

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

    Celia Kitzinger told me: “I actively try to avoid foregrounding what might be considered ‘shocking’ or ‘exciting’ material in favour of a more educational, measured approach. My key aim in this blog post was to communicate what I’d learnt from the hearing about the law on controlling or coercive behaviour. My own background is in academic Psychology, so it’s not surprising that after this first sentence I moved  quickly into giving a psychological account of controlling or coercive behaviour, including a link to an article in a counselling journal.  Mindful of the blog’s audience of lawyers and those concerned with the law, I then described the behaviour as an offence under s. 76 of the Serious Crime Act 2015 and quoted an extract from the Statutory Guidance Framework.  I provided all this background information up front, at the beginning of the blog, before addressing the specific issues in this particular case.  Comparing my account with the Times piece, I can see how far removed it is from a ‘human interest’ story!

    The drama of the court room

    Court reporters use the ‘inverted pyramid’ style of writing which is used by all journalists to construct news stories.

    Essentially this style is designed to grab readers’ attention as quickly as possible, presenting the most important and exciting details in the first paragraph and then developing the story with more specific information as the article proceeds. 

    Once the introduction is written the reporter’s job is to flesh out the bones, adding the meaty details taken from the evidence heard in court and using quotations to ‘add colour’. The aim is to bring the copy to life, tell the human side of the story and try to recreate the drama of the courtroom.

    This also allows the reporter to break up long passages of text to maintain interest.

    It’s also important to outline what the case is about so the basics need to be included – who, what, where, when, how?

    You don’t want the reader to go away with unanswered questions, or wondering what happened.

    In a criminal case, this is easy. Journalists report the prosecution allegations first, backed up by witness evidence heard in court and any relevant cross examination. Then it’s the turn of the defence to set out its case. Once the jury has come back with a verdict, it’s the verdict, any sentencing remarks from the judge and the sentence. Reporting restrictions are rare because due to recognition of the importance of the principle of open justice.

    When reporting from the Court of Protection there is no prosecution or defence case and reporting restrictions are almost always automatic. Because there is always a vulnerable person (P) at the centre of the case, transparency orders usually ban reporting of any detail which could lead to that person’s identification.

    After hearing all the evidence, the judge in this case,  Mrs Justice Jennifer Roberts, reserved judgement (i.e. will consider all the evidence and publish a written judgement in the next few weeks).   This gives the reporter (and the blogger) ‘a second bite of the cherry’ – the chance to publish the story again with a new angle, which in this case will be the latest information:  the judge’s decision.     

    My story summarised salient points from what happened in court but didn’t go into the day-by-day – and sometimes moment-by-moment verbatim transcript – detail of the blog post. Celia Kitzinger told me:

    In writing for the Project, I want to communicate the process by which justice is done – not just the outcome.  So the details of the questions asked and the answers given – and the way those answers are phrased – can really matter.  This is what we get  from observing a hearing, as opposed to simply reading the judgment afterwards.  In the blog post about this case there were lots of places where I quoted as close to verbatim as I could (given that we’re not allowed to audio-record) because I felt the exchanges in court revealed aspects of the case, and the participants’ perspectives on what was going on, in particularly vivid ways. Compare, for example, the Times summary statement that the man “said that he was the victim of a conspiracy by his previous victims” (which is an accurate and succinct summary of the facts) with the more detailed account in the blog, which includes my own personal reflections on this.

    From:  Controlling and coercive behaviour: A hearing before Roberts J by Celia Kitzinger

    In summary…

    Writing for the national media and writing a blog post for a specialist project involve some very different skills. It is fantastic there are bloggers such as Professor Celia Kitzinger and other professionals attending court and writing long form pieces about the complexities and ethical issues raised in COP cases.

    However, it is equally important these hearings are covered by mainstream media outlets who can communicate the proceedings to the general public in a clear and concise way, so they have a better understanding of the issues at stake and the decisions being made about the lives of vulnerable people.

    Polly Rippon is a former regional daily newspaper reporter and news editor with 20 years’ experience in journalism and media relations. She continues to write freelance pieces for national titles, and teaching media law and court reporting in the Department of Journalism Studies at Sheffield University. She tweets @PollyRippon

    Secure Accommodation for Young People: “A well-known scandal”

    Celia Kitzinger, 12th August 2021

    Note: For another perspective on secure accommodation, see the blog by Anna Rebowska, “Secure units and young people: In search of home to call your own

    “Secure accommodation” is a legal term that refers to a form of accommodation provided  for the purpose of restricting liberty under section 25 Children Act 1989.  Children can also be remanded or sentenced to detention through youth justice legislation. The accommodation has to be approved as “secure accommodation” by the Secretary of State, and needs to comply with various regulations. 

    Local authorities place children in secure accommodation when they are at risk of harming themselves or others. Secure accommodation is expected to keep children safe, to restore some stability to their lives, and to assess their needs and identify the supports needed in future.  (See this report on “Local authority use of secure placements” (pdf).)

    There has been a rapid rise in the numbers of children deprived of their liberty in recent years. The BBC reported on freedom of information responses from 91 of 170 local authorities in England and Wales: the number of deprivation of liberty orders for children and young people went from 43 in 2016-17 to 134 in 2018-19. The vast majority of these will be for children in care.

    It has become increasingly apparent that there are simply not enough secure accommodation places available, and that very vulnerable children are being kept waiting in inappropriate settings, or placed in unregulated homes.

    The desperate lack of secure accommodation became glaringly apparent in the Court of Protection case (COP 13743601) I observed before Mrs Justice Judd on 2nd July 2021, and again on 16th July 2021.

    This was a case in which the judge and all the parties to the case (including the local authority) were doing their utmost to help a vulnerable young person against the backdrop of a nationwide shortage of appropriate provision.  

    Background

    At the first hearing I observed, Mrs Justice Judd said this was “a profoundly worrying case”.  An “extremely vulnerable” 17-year-old girl  (“N”) – diagnosed with autism, mild learning disability and emotional dysregulation – was being kept inappropriately in an Accident and Emergency bed because there was nowhere else for her to go. 

    The local authority had planned to apply to court for authorisation of a deprivation of liberty.  But this application was problematic at the time of the hearing because “over the past few days, circumstances surrounding N’s residence and care has been changing by the hour”.  

    At the time of the hearing, it did not seem possible to make an application to deprive N of her liberty because:

    • It wasn’t clear whether or not N has capacity to make her own decisions about where she lives and what care she receives: there seems to be some suggestion that she might do, at least sometimes, in which case she is not someone over whom the court has jurisdiction; 
    • Since it had recently been determined that N does not meet the criteria for detention under Section 2 MHA 1983, she would shortly be discharged from hospital, but since there was no placement (or care package) available for her, it was impossible to know whether or not the arrangements would be the least restrictive option, or whether or not they would be in N’s best interests.

    Since June 2019, when N’s mother reported she could no longer care for her, N has been a “looked-after child” (Children Act 1989).  For much of that time she has been in secure children’s homes.  She has experienced multiple placement breakdowns and is assessed as requiring an extremely restrictive care package including 2:1 care at all times, including through the night, with carers trained to carry out restraint.  She’s moved placement many times and until shortly before the hearing on 2nd July 2021 had been living in what was understood to be either her 13th or 14th placement since mid-2019.  That placement is now under threat.  

    I can tell you I have had myself a number of cases like this, with young people being in an A&E Department of a hospital, simply because there’s nowhere else for them.  No doubt social workers are in a parlous position on this, but judges are being asked to authorise this position and it really is very troubling.” (Mrs Justice Judd)

    The judge acknowledged that the local authority was making its “very best efforts – focussed efforts over a prolonged period of time” to find N an appropriate placement but that there were real difficulties in doing so.  

    The current placement had been the outcome of an extensive nationwide search  – involving referrals to over 527 placement providers, only two of which indicated an ability to meet N’s needs.  The placement now under threat had been literally the only care provider who appeared able to care for N – and they were now on the cusp of serving notice. 

    The local authority (represented by Lucinda Leeming) described “utter dismay” at the situation they were in.  Counsel for N (Katie Scott, acting via the Official Solicitor) described the situation as “most unfortunate”. 

    THE HEARING ON 2nd July 2021

    The Applicant

    Counsel for the applicant council described N’s self-harming behaviour, including attempted suicide, and “extremely aggressive behaviour” that includes assaults on care staff and police officers. Her “uncontrollable rage” has led to incidents involving criminal proceedings and the involvement of the youth justice service. 

    N had been admitted to hospital at the end of June 2021 following “a significant episode of dysregulation” between 25thand 27th June 2021 in her current care home (“F House”).  She had been continuously awake and “experiencing mania” for 72 hours, during which she gained access to the roof and threatened to kill herself. She threw boiling water from a kettle over staff caring for her, and thew nail polish remover into the eyes of a carer saying she wanted to blind them.  She armed herself with knives and parts from a broken bed and threatened staff.  She set fire to a tea towel, saying she wanted to burn the house down. 

    On 30th June 2021, the police took N to hospital, under s.136 of the Mental Health Act (MHA) 1983 and she was assessed that evening as meeting the criteria for detention under Section 2 MHA 1983.  It was decided that she needed a specialist bed, but none was available that day.  

    The next day, on 1st July 2021, the day before the hearing,  N was reassessed and deemed not to meet the criteria for detention.  The Approved Mental Health Professional (AMHP) who assessed her said that it was not possible “to elicit” any mental health needs and that N had apparently been “calm” during her time in hospital and that she can be discharged as soon as a bed is available.  

    There is nowhere to discharge her to, since the care home she was in previously no longer considers that it is able to keep N safe and ensure the safety of others.  The  local authority feels unable to agree to N returning to “F House”, given that her safety and that of others is in doubt.

    So, the local authority is looking for a secure accommodation placement but reports that as of the evening of 1st July 2021, there was a need for 57 secure accommodation placements nationwide, and just 2 placements were available.  One had already deemed N to present too high a risk, even for their secure accommodation. The other will be reviewing the profiles of all those needing a bed and make an offer to the most appropriate person – making it unlikely that N will be offered this option.

    Could “F House” be made safe – with additional safeguards and the involvement of an external care provider, so that N could safely return there, at least in the short term?  Are there premises that could be used as secure accommodation with a bespoke package?  These are options the local authority is investigating – but neither was an option that could realistically be put before the judge at this stage. An adjournment was needed, they said.

    Judge:                   You are asking me to authorise a Deprivation of Liberty under the auspices of the Mental Capacity Act or the inherent jurisdiction but without a clear care plan about what that will entail.  

    Counsel for LA:    Yes. The LA simply doesn’t know what the care plan is, given the range of options, or what that might entail.  We would ask for an adjournment for a period of three weeks and hopefully come back before the court with some proper options and a better idea of what the care plan will entail.

    Judge:                    I am concerned about delay if we adjourn for 3 weeks. I don’t know if it’s in the best interests of this young person, and obviously that’s a big worry for the court and it would ordinarily lead me to want to adjourn for no more than a few days.  Unless a court hearing would be a distraction to the work you are doing to find her a placement and develop packages of care.

    Counsel for LA:    Yes, we fear coming back to court next week with no progress having been made.

    The Official Solicitor

    Katie Scott acted for the Official Solicitor to represent N’s best interests.  She acknowledged the difficult position the local authority was in, and the impossibility of making  a deprivation of liberty order today: “Regrettably, we are where we are.” She added that as a result of recent events, it hadn’t been possible for those acting on N’s behalf to meet N – either remotely or in person –  to ask N what her own wishes are in this situation.  

    Apparently anxious to resolve the situation speedily, the judge asked Katie Scott, “What would be the downside of adjourning for a week, as opposed to three weeks?”.  She replied: “It may be another hearing where we don’t get anywhere”. 

    The judge asked when a capacity assessment would be available:

    It needs an in-person assessment, and she’s not been vaccinated [it had earlier been reported that N had declined vaccination for Covid-19, despite having Hepatitis B, contracted from her mother at birth] so that’s going to be a bit difficult.  The popular – if I may put it that way – experts are extremely busy and the waiting lists are very long.  It may be that a long period of time is inevitable.” (Katie Scott)

    N’s Mother

    Having heard from both the applicant local authority and from the Official Solicitor, the judge turned to N’s mother, who had been present throughout the hearing.  She is not a party to the case, but the judge pointed out that she could become a party if she wished to.  She said, “It must be very distressing for you. I imagine you must be listening to this with- well, it must be horrid to listen to”.

    The burning issue for N’s mother turned out to be: “My daughter was abused by one of the carers. I have proof they have assaulted my daughter.”  This had been mentioned earlier by counsel for the local authority “for the sake of completeness”: she reported that there had been an allegation of assault on N, which was under investigation, and that staff had been suspended pending that investigation.  She had also reported that some staff have refused to return to work at “F House” because they are frightened of N and the risk she poses.

    The judge expressed sympathy for N’s mother and briefly discussed with her and with the advocates whether it would be possible for her to get legal advice.  (Note – she was in fact represented by Mungo Wenban Smith at the next hearing.)

    Mrs Justice Judd then fixed the next hearing for two (rather than three) weeks ahead – as a “compromise” between the need for a speedy resolution, and the risk of “diversion of resources towards the court if I order things back too quickly”.  

    The judge ended the hearing by saying:  “I do hope things aren’t as bleak as they seem, and I do hope something ‘good enough’ will be found for N very quickly, and then something really suitable without much ado after that.

    THE HEARING ON 16th July 2021 

    The hearing opened with a summary and update about the case from Lucy Leeming (counsel for the local authority).  She reminded the court (and public observers) that the case concerned a “vulnerable young lady who had been inappropriately occupying a bed in A&E and we were desperately looking for suitable placement”.  

    The good news was that a placement had been found and N “is safe there, and no longer in hospital”.  However, this is an “emergency” placement” and not suitable long-term.

    She also reported that over the weekend immediately following the last hearing on Friday 2nd July, N had experienced “a further episode of dysregulation”.

    She was aggressive.  Following allegations of assault and criminal damage to the hospital ward, she was arrested and detained in police custody – taken to a police cell – and everyone feels that this is clearly not an appropriate place for this very troubled young lady.”

    At the police station, N was verbally and physically aggressive,  racially abusive and assaulted both care staff and police officers.  She was subsequently taken to hospital where she was restrained and given 50mg intra-muscular Promethazine Hydrochloride as a sedative, against her will and without the consent of either her mother or the local authority – something the Official Solicitor is now investigating.

    She was assessed under the Mental Health Act and deemed to meet the criteria under section 2 for detention, but no bed was available.  I’m afraid we went round the loop again.  On reassessment a few days later, she was then deemed not to meet the criteria and deemed fit to be discharged.” (Lucy Leeming)

    The judge intervened to say, “She needs help.  This situation is not helping.  The MacDonald judgment was published yesterday and that’s a very similar situation.  It’s profoundly worrying”. 

    Some context

    I didn’t recognise the judge’s reference to “the MacDonald judgment” at the time, but I’ve subsequently read it  (Wigan BC v Y[2021] EWCH 1982 (Fam))  and recognise it as one I’d seen reported in the media (e.g. here).

    The parallels are chilling.  In that case, a violent and self-harming 12-year-old boy (“Y”) was held on a hospital ward in conditions that the judge described as “inappropriate, demeaning and, quite frankly, brutal” (para. 53) and as a breach of Y’s Article 5 rights.  MacDonald J  refused to authorise Y’s ongoing deprivation of liberty on that ward – despite no alternatives being available – ruling that “the absence of an alternative cannot render what is the single option available in Y’s best interests and hence lawful” (para. 59).  It would, said the judge: 

    “… border on the obscene to use a protective jurisdiction to continue Y’s bleak and dangerous situation simply because those with responsibility for making proper provision for vulnerable children in this jurisdiction have failed to discharge that responsibility”. (para. 64)

    Since then – and subsequent to the hearings I observed – the Supreme Court has handed down a judgment in Re T,  a case heard back in October 2020 concerning a 15-year old placed in non-statutory (unregistered) accommodation.  In giving the lead judgment, Lady Black voices “deep anxiety” about the shortage of secure accommodation for children, pointing out that this is not new, and that the problem has been highlighted in multiple court decisions.  Back in 2017, Sir James Munby, then President of the Family Division, made a ruling about a 16-year-old with difficulties like those of T in the case before the Supreme Court and N in the case I’ve been observing (all three were expressing the intention to kill themselves and all three were self-harming).  Sir James Munby referred to what he termed “a well-known scandal”, namely:

    “… the disgraceful and utterly shaming lack of proper provision in this country of the clinical, residential and other support services so desperately needed by the increasing numbers of children and young people afflicted with the same kind of difficulties as X is burdened with.” (In re X (A Child) (No 3) [2017] EWHC 2036 (Fam), para 37)

    Lady Black’s judgment in Re T quotes this extract, and similarly draws attention to  the government’s lack of action: “It has been drawn repeatedly to the attention of those who could be expected to take steps to ameliorate the situation, without noticeable effect” (para. 7).   

    There are useful reports on the Supreme Court  judgment in Community Care ( here) and by Alex Ruck Keene (here).  A report by the Children’s Commissioner, Anne Longfield, charts the extent of the problem and describes the situation of up to two hundred children awaiting secure care at any one time – often detained elsewhere in conditions equivalent to secure care in hospitals or flats or other accommodation with large teams of agency staff  (The children who no-one knows what to do with)

    As the judge said in the case I observed, echoing the voices of previous judges and foreshadowing the report from the Supreme Court a couple of weeks later, the difficulty of  finding accommodation for N serves to “highlight the shortage in nationwide provision for troubled youngsters”.

    What was decided in court?

    The temporary placement for  N is an annex (for her sole residence) to the main building of a children’s home. She has carers with her on a 4:1 basis, 24 hours a day.  “Staff have been pulled in from elsewhere to provide the support she needs, and have received appropriate levels of training in relation to restraint.”  No information was provided, though, on how N spends her days in this annex.

    Counsel for the local authority (Lucy Leeming) invited the court to authorise N’s deprivation of liberty in this children’s home annex on an interim basis.  The local authority is continuing the search for more appropriate accommodation and was hopeful that a place might soon become available – although the proposed placement is more than 200 miles away from N’s mother’s home, and her counsel subsequently raised objections to this proposed placement as constituting a “devastating impediment to the resumption of family contact”.

    Counsel for the Official Solicitor (Katie Scott) opposed authorisation of N’s deprivation of liberty on the grounds that there is currently insufficient evidence to displace the presumption that N has capacity to make her own decisions about care and residence – at least at times – and because there is at the moment no evidence as to N’s own wishes and feelings in this regard. 

    Counsel instructed by N’s mother (Mungo Wenban Smith) sought to encourage “jurisdictional pragmatism to ensure we can keep N safe”, by which he meant making an interim finding that there is reason to believe that N lacks capacity, so fulfilling the mental capacity requirement for a DOLS authorisation.  This, he said,  “might provide a sticking plaster to cover the interim period pending the report [on N’s capacity]”. 

    In the end, faced with an impossibly difficult situation, the judge authorised N’s deprivation of liberty for an interim period, but did so under the inherent jurisdiction rather than the Mental Capacity Act 2005.

    An expert has been instructed – the Consultant Psychiatrist, Dr Claudia Camden-Smith, a very familiar name in Court of Protection proceedings – and she will report on N’s mental capacity in relation to a number of areas including capacity to make her own decisions about where she lives and the care she receives (and whether she has capacity to refuse covid vaccination).  The report is due at the end of October.

    I hope to observe and report on future hearings 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 Steve Johnson on Unsplash

    Lasting Power of Attorney: Across Borders

    By Clare Fuller, 9th August 2021

    On 3rd August 2021 I was pleased to have the opportunity to observe a case focussing on decision-making involving people with Lasting Power of Attorney.

    I’m a Lasting Power of Attorney Consultant.  I help people to draft their Lasting Powers of Attorney – so learning more about how this issue is dealt with in the Court of Protection is really helpful.

    In this case, the protected party (P) has dementia and is living in a care home in another country.  Nearly 7 years ago, shortly after receiving her dementia diagnosis, she made two Lasting Powers of Attorney – one for property and affairs, the other for health and welfare.  In both of them, she appointed her cousin, “AB” and one other person as attorneys.  P’s nominated attorney, AB, is the applicant in this case. She wants to bring P back home to the UK.

    What is a Lasting Power of Attorney?

    Lasting Power of Attorney (LPA)  is a legal document that lets you appoint one or more people to make decisions on your behalf. This gives you more control over what happens to you if you have an accident or an illness and cannot make your own decisions.  The formal requirements, scope and applicability of LPAs are set out in Sections 9-14 of the Mental Capacity Act 2005.  

    The Office of the Public Guardian  campaign shows that 72% of people think your next of kin always gets the final say in treatment decisions at hospital but this is not the case.  The only way to ensure that a spouse, or adult children, or anyone else you trust, can make decisions for you is to appoint them as your Attorney.

    A Lasting Power of Attorney can only be made when you are deemed to have the mental capacity to make the decision to appoint attorneys.  The form requires evidence from a ‘certificate provider’ who must confirm that you’re making the LPA by choice and that you understand what you are doing.

    There are two different kinds of LPA.  A Health and Welfare LPA would be used if you lost capacity to make decisions about issues relating to health (e.g. whether you should have surgery or other medical treatments).   An important element of the Health and Welfare LPA is that it offers the opportunity to give the person or people appointed, (the attorney(s)), authority to make life-sustaining treatment decisions.

    A Property and Finance LPA is used for to appoint someone to make decisions about your money – and can take effect, with your consent, as soon as it is registered.

    Despite the  widespread campaign to raise awareness, LPAs remain little known or understood. 

    My interest in LPAs, and the reason I became a Lasting Power of Attorney Consultant,  stems from a long career as a nurse in palliative and end of life care, where I witnessed the impact of not having these important documents in place. I feel incredibly passionate about people’s voices; their choices and their values being heard – and LPAs are an important way of enabling this. I advocate for proactive Advance Care Planning and LPAs are one important element of planning ahead. 

    The hearing 

    The hearing I attended (Case no. COP 13785356) was held via MS Teams before Mrs Justice Lieven  on 3rd August 2021.  

    The applicant is AB, who holds LPAs (both for Health and Welfare and for Property and Finance for her cousin P.  There is a second person also appointed as LPA for P who fully supports AB’s application.  It was confirmed in court that the LPAs were signed by P on 11th September 2014 and registered by the  Office of the Public Guardian on 2nd December 2014. 

    Since making the LPAs, P has lost capacity to make her own decisions about where to live, and, in alignment with her wishes, her cousin is now enabled through the LPA to make decisions on P’s behalf.

    In 2013, P, who had lived in the UK for about 40 years,  was diagnosed with dementia and she moved into a care home the following year.  

    Shortly afterwards she travelled to Lebanon to live with her brother for what was intended to be a trial period. She enjoyed living there, was well cared for,  and decided to stay.  

    After her brother died unexpectedly a couple of years later, she moved into a care home in Beirut.

    The applicant, AB (represented by Parishil Patel)  is “very worried” about P’s welfare in Beirut.  Nobody visits P at the care home, and there is growing political and economic tension and instability in Lebanon which is having a real effect on P’s care.  There is a shortage of medications – the other attorney has been arranging for these to be supplied to P from outside Lebanon.  

    Last year AB tried to use the Lebanese court system to get P back to the UK and obtained a Return to UK Order, but this was blocked by P’s nephews.   AB had medical evidence that P was fit to travel: she had found a place for P at a private care home near to where she lived, and she had made travel arrangements with an expert medical repatriation charter company.  But before this plan could be carried out, P’s two nephews obtained a Travel Ban order – on the basis that P’s return to the UK “would cause [one nephew] damage in respect of the prosecution of his [wardship] suit” and that  “travelling to Britain in her poor state of health and at her advanced age could cause grave damage to her health [and] there is the danger of her catching the coronavirus”.   It is unclear what the two nephews’ motives for keeping P in Lebanon are (they don’t visit her or provide care)  but there is speculation that there may be financial motives.

    AB wants the court to use the inherent jurisdiction  to relocate P back to the UK “as soon as suitable travel arrangements can be made”.  She also seeks an order that the LPAs are valid.

    Mrs Justice Lieven acknowledged the challenges of the case – especially the interfamily dispute –  as well as the need for expedited decision making since P is elderly and frail.

    The inherent jurisdiction

    The High Court has the power to protect vulnerable adults, including British citizens in foreign jurisdictions. (See Holman J’s decision in Al-Jeffery v Al-Jeffery (Vulnerable adult; British citizen) [2016] EWHC 2151 (Fam) – widely reported in the media, including this BBC report and the follow-up to the story the following year.)  As the case before Holman J illustrates, the court can order relocating a person to the UK.  According to counsel for AB, P is a vulnerable adult in a foreign jurisdiction in need of this protection, in the form of relocation.  Her current situation is “extremely concerning” and she is “at risk of harm”.  

    Validity of the LPAs

    Early on in the hearing, the judge asked for evidence that the LPAs were valid documents.  Evidence was provided that they had been registered with the Office of the Public Guardian.  

    She asked “what evidence do I have that P had capacity when she filled these in?” and was referred to the affidavit of a Consultant Psychiatrist who saw P shortly before she signed the LPAs and found her “clear and coherent” in explaining what she wanted to do in appointing LPAs, and she was able to articulate the purpose of LPA,  and why she had chosen her nominated attorneys.  The solicitor who helped P draw up the LPA documents had written a letter for the court saying that there was no suggestion of undue pressure being applied, i.e. P was making the LPAs of her own free will.

    Mrs Justice Lieven agreed to make an order that the LPAs were valid and applicable in this case. 

    It was agreed a further hearing would be necessary to clarify what should happen next – including appointing the Official Solicitor to represent P,  assessing P’s fitness to travel, and considering the practicalities of relocating P if it turns out to be in her best interests. 

    A tentative date for the next hearing (a full day) has been set for 1st September 2021.

    Closing observations

    Hearing a judge scrutinise the validity of an LPA highlights to me the crucial importance of ensuring careful attention to record keeping and evidence of a donor’s capacity when making an LPA. In this case, the attention to detail of both the solicitor and psychiatrist in 2014 ensured that there was no challenge to the validity of the LPA, and P’s nominated attorneys are able to act for her, as she wished.  I hope to be able to observe the next hearing in this case, and will report back on how the LPAs’ decision-making plays out in court.

    I have watched Court of Protection hearings before.  Back in August 2020,  I bore witness to an intensely complex MCA and best interests hearing concerning a young lady with anorexia. That experience brought home to me the huge educational value of observing hearings and seeing how judges make these important decisions. 

    Over the course of the subsequent year,  I have promoted the Open Justice Court of Protection Project as an excellent avenue for health care professionals to see the application of MCA decision-making in practice.   As an advocate for proactive Advance Care Planning and a Lasting Power of Attorney Consultant  it has been hugely beneficial for me to see how a judge goes about assessing the validity of an LPA and making decisions about P when she has appointed her own nominated attorneys.  Observing hearings in the Court of Protection is an excellent learning experience which continues to benefit my own practice.

    Clare Fuller RGN MSc is a registered nurse with a career dedicated to Palliative and End of Life Care. She is an advocate for proactive Advance Care Planning and delivers bespoke EoLC education. She is also a Lasting Power of Attorney Consultant and director of Speak for Me LPA Clare tweets @ClareFuller17 

    Photo by Ehsan ahmadnejad on Unsplash

    Capacity (and sexual relations) in the Supreme Court: Reflections on A Local Authority v JB

    By Amber Pugh, 10th August 2021

    Sex with a consenting partner plays an important role in developing personal relationships and has been described as being a fundamental human right. However, people who lack the capacity to make the decision to have sex are prevented from enjoying sexual relationships, regardless of how much they desire them (Mental Capacity Act 2005, s.27(1)(b)). It is of immense importance, therefore, that the law in this area strikes the correct balance between empowerment and protection from harm. Unfortunately, to date, the case law regarding capacity and sex has been complicated and confusing.  This may be set to change. 

    On the 15th July 2021, the Supreme Court heard the appeal in A Local Authority v JB. JB, the initials used for the person at the centre of this case, is a 38-year-old autistic man with impaired cognition. He has expressed a strong desire to have a girlfriend and engage in sexual relations with women, but the local authority has concerns that he does not understand that the other person has to consent to the sexual activity. The issues that the Supreme Court has been asked to decide are  (in the words of their ‘easy read’ summary (a downloadable pdf from the Supreme Court website)):

    In order to have capacity to consent to sex: 

    • Does a person need to understand that their sexual partner must have the capacity to consent to sex? 
    • Does the person also need to understand that their sexual partner must consent before the sexual activity starts and that their consent must continue throughout the sexual activity? 

    Irrespective of what the Supreme Court decides, its judgment is set to be a landmark one. The Supreme Court has previously considered other aspects of mental capacity law, including best interest under the Mental Capacity Act  2005 (Aintree University Hospitals NHS Trust v James [2013] USK 67) and deprivation of liberty (P v Cheshire West and Chester Council & Anor [2014] UKSC 19), but this is the first time that it has been asked to examine the test for lack of capacity set out in sections 2 and 3 of the Act in detail.  In this blog post I will discuss some of the issues that I found to be of particular interest during the hearing; it is not intended to be a comprehensive summary of proceedings.

    Capacity to consent to sex or capacity to engage in sexual relations?

    A summary of the first instance and Court of Appeal judgments in the case can be found here. For present purposes it is sufficient to note that the decision of the Court of Appeal in JB challenged the approach previously adopted in the case law which had examined whether ‘P’ had the ‘capacity to consent to sex’ (D County Council v LS [2010] EWHC 1544 (Fam)B v A Local Authority [2019] EWCA Civ 913) and instead held that the question that should normally be asked is whether P has the ‘capacity to engage in sexual relations’ [93]. 

    Section 2(1) Mental Capacity Act 2005 says that a person lacks capacity if they have an ‘impairment of, or a disturbance in the functioning of, the mind or brain’ which causes them to be ‘unable to make a decision’ about the matter at hand. Section 3 then explains that a person is ‘unable to make a decision’ if they are unable (a) to understand the information relevant to the decision, (b) to retain that information, (c) to use or weigh that information as part of the process of making the decision, or (d) to communicate their decision.

    The Court of Appeal in JB held that when the decision to be made under s.2 is framed as being about whether or not to engage in sexual relations, then the ‘information relevant to the decision’ for the purposes of s.3 may include:

    (1) the sexual nature and character of the act of sexual intercourse, including the mechanics of the act;

    (2) the fact that the other person must have the capacity to consent to the sexual activity and must in fact consent before and throughout the sexual activity;

    (3) the fact that P can say yes or no to having sexual relations and is able to decide whether to give or withhold consent;

    (4) that a reasonably foreseeable consequence of sexual intercourse between a man and woman is that the woman will become pregnant;

    (5) that there are health risks involved, particularly the acquisition of sexually transmitted and transmissible infections, and that the risk of sexually transmitted infection can be reduced by the taking of precautions such as the use of a condom. [100]

    JB was subsequently granted leave to appeal to the Supreme Court. Lead Counsel for JB (by his Litigation Friend, the Official Solicitor) was John McKendrick QC of Outer Temple Chambers, and Lead Counsel for the respondent local authority was Vikram Sachdeva QC of 39 Essex Chambers. The case was heard by Lord Briggs, Lady Arden, Lord Burrows, Lord Stephens, and Lady Rose. A recording of the hearing can be watched here.

    The appellant’s main argument was that the Court of Appeal was wrong to find that the decision to be made was whether or not to ‘engage in sexual relations’, and counsel invited the court to follow the decision of Roberts J at first instance. If accepted by the court, then this would see the decision once again framed as ‘capacity to consent to sex’ and P would no longer have to understand that the other person must have capacity to consent to the sexual activity and must in fact consent to the sexual activity. 

    The respondent’s position was that the decision of the Court of Appeal was correct and must be upheld. However, as will be discussed below, they submitted that the wording of ‘the relevant information’ should be changed so that P has to understand the other person’s ‘ability’ to consent rather than their ‘capacity’.

    At the start of the hearing Lord Briggs stated that the court would also hear argument on a new point that counsel for the respondent (local authority) wished to raise and that this argument would be dealt with on a de bene esse (for what it is worth/provisional) basis, with the court determining whether permission to appeal the point should be granted when it delivers its judgment. Lord Briggs did not state what the new argument that counsel wished to raise was, but it became clear during the course of the hearing that it related to how the information relevant to the decision should be framed i.e. should it be issue-specific (looking at sex in general), person/situation-specific (looking at sex with a particular person and in particular circumstances), or should the plain words of the Mental Capacity Act 2005 apply without any gloss. 

    The Supreme Court now has an opportunity to look at this area of law afresh and its decision could fundamentally alter the way that capacity to make decisions about sex is assessed. But the task that lies before it is complicated. The consequences of being found to lack capacity to consent to have sexual relations are profound. Section 27(1)(b) of the Mental Capacity Act 2005 lists consent to sex as one of the decisions that is excluded from best interest decision-making under the Act. The effect of this is that if P is assessed as lacking capacity, then nobody else can decide that it is in P’s best interest to have a sexual relationship with another person. Any form of sexual activity with ‘a person with a mental disorder impeding choice‘ is a criminal offence under the Sexual Offences Act 2003. Thus, a finding that an individual lacks the capacity to make decisions about sex tends to lead to safeguards being put in place in an effort to minimise the potential for sexual activity to occur. Indeed, the individual may be subject to a level of supervision so intrusive that it amounts to a deprivation of liberty. In essence, P has celibacy imposed upon them. 

    Counsel for JB stated that the court is being asked to find the ‘least imperfect solution to a complex human problem’. This struck me as reminiscent of a comment made by Hallett LJ in the case of R v Bree [2007] EWCA Crim 804 that the ‘practical reality is that there are some areas of human behaviour which are inapt for detailed legislative structures’ [35]. The multi-varied nature of sexuality and decision-making in this area means that it is impossible to formulate a test for sexual capacity that will garner universal approval. Whatever the Supreme Court decides, its judgment should bring a much-needed level of certainty to judicial decision-making in this area. This is because most of the judgments on sexual capacity have been first instance decisions and therefore are not binding on other judges (the judges can choose not to follow them). This has allowed for differing and sometimes conflicting approaches to emerge within the case law, with assessors on the ground then having to navigate a path through a legal quagmire.

    What are the ‘reasonably foreseeable consequences’ of having sex?

    Under section 3(4) of the MCA, the information relevant to the decision must include information about the reasonably foreseeable consequences of the decision. This has been interpreted restrictively in the context of sexual capacity, and has been limited to certain medical consequences, namely pregnancy and sexually transmitted infections. It does not extend, for example, to an understanding of what is involved in parenting a child or that any child born may be taken into care (London Borough of Ealing v KS & Ors [2008] EWHC 636 (Fam)).

    The appellant’s argument was that the decision to be made when looking at section 2 of the MCA is whether to give or withhold consent. John McKendrick submitted that when the decision is framed as being about P’s consent, then the reasonably foreseeable consequences of having sex cannot be regarded as encompassing the impact that P’s actions would have on the other person. 

    The respondent’s position was that the potential harm to P and to the other person that would stem from non-consensual sex was within the remit of section 3(4). Vikram Sachdeva argued that information relevant to the decision should not simply include what capacitous people ordinarily consider, but also ‘what people should take into account’ [emphasis added]. 

    The judges seemed to favour the respondent’s submissions. Indeed, early on in the hearing Lady Arden stated that she thought that section 3(4) was broad enough to capture the harmful effects of non-consensual sex. In addition to this, she opined that if the decision engages Article 8 of the European Convention on Human Rights (which provides a qualified right to respect for private and family life), then the court, as a public authority, has a duty to take public protection into consideration when making an order.

    If the Supreme Court does hold that harm from non-consensual sex is a foreseeable consequence of having sex, then I would suggest that it should nevertheless reject the proposition that the relevant information ought to include what people ‘should’ think about when making decisions. This is incredibly subjective and people’s views of what ‘should’ be considered will vary widely. It would allow scope for assessors to import their own personal views into the test and could have harmful ramifications for anyone who finds themselves subject to a capacity assessment. It was also entirely unnecessary for the purposes of the respondent’s argument because most people do consider the other person’s consent when deciding to have sex.

    Capacity to consent versus ability to consent

    The Court of Appeal in JB held at paragraph 100 of the judgment that the information relevant to the decision to engage in sexual relations may include ‘that the other person must have the capacity to consent to the sexual activity’. Later in the judgment, at paragraph 106, Baker LJ said that: “What is needed, in my view, is an understanding that you should only have sex with someone who is able to consent and gives and maintains consent throughout“.

    Vikram Sachdeva submitted that it is the formulation at paragraph 106 that should be followed, not that given at paragraph 100 which could be construed as requiring P to conduct a refined capacity assessment of the other person. He argued that focussing on the other person’s ability to consent as opposed to their capacity would make it plain that the necessary level of understanding is ‘what is expected of a person in the street without technical knowledge’. This was said to entail looking at a person’s physical appearance in order to try and gauge if they are over the age of consent, and whether they are incapacitated or not. The example used by Vikram Sachdeva to demonstrate how this would work in practice was looking to see whether a person is so intoxicated that they cannot speak. Lady Rose quite rightly stated that that was not the problem in this case, and queried whether the argument advanced by counsel would require P to be able to recognise that the other person may have ‘the same vulnerabilities he has’ and therefore may lack capacity. Counsel conceded that the ‘hardcore’ answer was that it would. The circularity of this approach is evident. Capacity is rejected in favour of a direction that P has to understand that the other person must be able to consent, but in determining whether the other person has that ability, P must assess whether or not the person is incapacitated. 

    Vikram Sachdeva went on to state that it is not always readily apparent if a person has capacity or not, but there are ‘obvious cases’ where there may be cause to believe that they do not. He gave the examples of ‘cases where someone cannot speak at all’ or where they are ‘just looking around the room not connected to anything’. It must be remembered that neither of these things is evidence of a lack of capacity, and comments such as these can serve to entrench negative assumptions about disabled people’s sexuality. Despite this, counsel argued that these ‘obvious’ cases demonstrate that a test which requires P to be able to understand, use or weigh information about the other person’s ability to consent is workable. 

    The Mental Capacity Act 2005 states that all adults are presumed to have capacity (s.1(2)), and a person cannot be found to lack capacity merely because of ‘a condition of his, or an aspect of his behaviour, which might lead others to make unjustified assumptions about his capacity‘. (s.2(3)(b)). Counsel’s approach, however, seems to require P to make such unjustified assumptions in order to demonstrate that they can assess the other person’s ability to consent to sex. The comments made by counsel can also be seen as privileging verbal communication when people who are non-verbal will often use assistive communication devices or have an alternative, unique form of communicating. 

    In his response to Vikram Sachdeva’s submissions, John McKendrick (counsel for JB) stated that if the Supreme Court concludes that the decision to be taken is to ‘engage in sexual relations’, then an approach that focuses on the other person’s ability to consent would be welcomed as being the more appropriate standard.  

    It is plainly correct that P should not have to assess the other person’s capacity to consent to sex to the standard required under the MCA. This would place a tremendous burden on P and would not reflect the reality of most sexual encounters. However, if the court holds that the other person’s consent is relevant information, then there needs to be guidance as to precisely what is required in terms of understanding the other person’s capacity or ability to consent. Any such guidance will need to be drafted with extreme care to ensure that it does not collapse into circularity.

    Sexual Risk Orders and Sexual Harm Prevention Orders

    One of the submissions made on behalf of the appellant (JB) was that the MCA was not intended to be used to protect the public and that the Court of Appeal, by requiring P to understand the other person’s consent, wrongly introduced matters of public protection into the assessment of capacity. It was argued that the correct way to protect the public where an individual is unable to understand consent is to obtain a Sexual Risk Order (SRO) or a Sexual Harm Prevention Order (SHPO). 

    SROs and SHPOs are civil orders that a Chief Officer of Police or the Director General of the National Crime Agency can apply to the magistrates’ court for or, in the case of a SHPO, can be made upon conviction. An order can be made where an individual poses a risk of sexual harm to the public. A SHPO can only be made if an individual has been convicted or charged with a sexual or violent offence listed in Schedule Three or Schedule Five of the Sexual Offences Act 2003. However, a SRO does not require the individual to have been convicted or charged of any offence; it can be imposed where an individual has done an act of a sexual nature and the order is deemed necessary to protect the public from harm. A person who is subject to an SRO or SHPO is prohibited from doing anything listed in the order. If they fail to comply with the order then they have committed a criminal offence and can be liable to be imprisoned, to pay a fine, or to both. Further information about these orders can be found in guidance published by the Home Office, which is available here.

    Lord Stephens seemed sceptical that SROs and SHPOs would be an appropriate response and asked what the terms of an order would be if P is unable to understand consent. In response, John McKendrick (counsel for JB) said that the terms would be very simple and gave the example of an order saying ‘you must not be alone with women’. As Lord Stephens noted, P is criminalised if they breach the order. On the example given by John McKendrick, this would mean that P could potentially be imprisoned for being alone with a woman, even though that behaviour in and of itself is not illegal.

    At present, JB lives with two other men in a supported living placement. Applying John McKendrick’s example to JB would mean that if one of his housemates were to invite a woman over, then JB would either have to restrict his movement in his own home or look to live elsewhere in order to ensure that he did not breach the order. Similar problems would arise in respect of any female staff members who were to provide support to JB. The social care workforce is predominantly female, and so an order of this kind could make it difficult for JB to receive appropriate support. Clearly this is undesirable, and the use of an SRO or SHPO should be avoided if there is a less intrusive alternative. Indeed, an order with such sweeping terms would be extremely difficult to police, which the Home Office guidance says would work against making it in the first place (p.37). John McKendrick’s submission also raises the question of what the terms of an order would be if P was bisexual and did not understand consent. Would P then be subject to an order stipulating that they must not be alone with men or women? This would obviously be impractical to implement and oppressive to P. 

    Conspicuously absent from counsel’s submissions on SROs and SHPOs was the fact that requiring P to understand the other person’s consent does not just protect the other person from harm, but also protects P from the harm that would arise if he committed an offence. This was raised later on in the hearing by the respondents, who stated that it is a ‘false dichotomy’ to assert that the restrictions JB is currently under are solely for public protection. 

    Abandoning the ‘issue-specific’/’person and situation-specific’ distinction?

    A large portion of the hearing was dedicated to argument on whether P has to understand the information relevant to the decision in an issue-specific manner, person- and situation-specific manner, or whether these labels should just be abandoned entirely. Following the decision of the Court of Appeal in IM v LM [2014] EWCA Civ 37, an issue-specific approach is adopted in relation to capacity to consent to sex, and so the identity and characteristics of P’s partner are irrelevant to determining P’s capacity. John McKendrick submitted that this is the correct approach. This was challenged by Lord Stephens, who asked with some incredulity why the information relevant to the decision cannot include information about the other party, particularly if the other person is sexually abusive and could commit the most ‘heinous crimes on the individual’. In response, counsel explained that the traditional approach has been to impose restrictions upon P’s contact with the other person in situations where P does not understand that that person is abusive. Unlike sex, capacity to make decisions about contact is assessed on a ‘person-specific’ basis and so the risk that the other person could pose to P is information relevant to making the decision (LBX v K & Ors [2013] EWHC 3230 (Fam) [45]). If P lacks the capacity to make a decision about contact, then a decision can be made in their best interest.

    Lord Briggs saw the logic in adopting an issue-specific approach in situations where P wishes to have sexual relations, but there is no identified other person. He did not seem convinced, however, that this is the correct way to assess capacity where the person that P wants to have sex with is identifiable. He noted that someone who might not have capacity on a general approach may nevertheless have it if it is assessed in relation to a particular person, for example, a partner of many years. The appellant’s position was that these concerns can be met by tailoring the relevant information if necessary, and relied upon the decision of Hayden J in LB Tower Hamlets v NB & AU [2019] EWCOP 27. This would permit the relevant information to be contracted if, on the facts at hand, P’s circumstances rendered it reasonable to do so. For example, in NB Hayden J held that P did not have to understand how sexually transmitted infections (STIs) were transmitted because she had been in a monogamous relationship of thirty years and there was no history of STIs. He acknowledged that this did not mean that there was no risk of STIs, but that on the facts the risk had to be regarded as very low and therefore a lack of understanding regarding transmission should not give rise to a finding of lack of capacity regarding sex. Mr Justice Hayden also explained that tailoring the information to P’s circumstances would mean that gay men, lesbians, and post-menopausal women will generally not need to understand the risk of pregnancy [54]. 

    It was argued on behalf of the respondent authority that the issue-specific and person-specific labels should be rejected altogether because they act as a gloss upon the wording of the MCA, and thus serve to obfuscate its straightforward application. However, at times it was unclear whether this was, in fact, counsel’s stance or whether they were advocating for a person-specific approach. Indeed, counsel apologised to the court for lapsing into the use of ‘person-specific’ language during his submissions. He nevertheless proceeded to state that ‘you do not have sex in general, you decide to have it with a particular person’. Both Lord Burrows and Lord Briggs contested this, and raised the fact that in JB’s case he wants to have sex with women but has not yet met a particular woman or women with whom to have sex. Counsel then stated that an approach that simply construes the Act would provide the solution here: if P wants to have sex with a particular person, then the decision to be made is ‘does P have capacity to make the decision to have sex with X?’, but if the person is yet to be identified then the decision can only be defined in general terms.

    This approach is not without its difficulties and it can give rise to seemingly illogical outcomes. For example, it made me think of the following hypothetical scenario:

    Lucas, a 26 year old man with a learning disability, wishes to have sexual relations but has yet to meet someone with whom to have them. There are reasons to believe that Lucas may not have the capacity to make decisions about sex, and a capacity assessment is carried out. The assessment is conducted on a general basis and Lucas is found to have capacity. Lucas goes on a night out, meets Alex and has casual sex with him. They both enjoyed it and decide that they want to see each other again. A few weeks later it comes to light that Alex has a history of sexually abusing his partners. Lucas’s capacity is assessed again because he now wants to have sex specifically with Alex. He is found to lack the capacity to make the decision to have sex with Alex because he does not understand the risk that Alex may abuse him.

    One of the reasons that the court has been reluctant to adopt a person/situation-specific approach in the past was because it was it was ‘difficult to see how it can sensibly be said that she has capacity to consent to a particular sexual act with Y whilst at the same time lacking capacity to consent to precisely the same sexual act with Z’ (Re MM (An Adult) [2007] EWHC 2003 (Fam) [87]). The approach advanced by Vikram Sachdeva may seem even more peculiar because, as seen by the above scenario, it means that P may have sexual capacity in a general sense and have sexual relations with a person on one day, but may lack the capacity to make the decision to have sex with that very same person on another day, notwithstanding the fact that their general understanding of the relevant information remains unchanged. There is no easy solution for the Supreme Court here and, irrespective of how it is framed, the test for sexual capacity will always have its discontents. Of course, it must be remembered that the Supreme Court may decide not to address the issue at all and instead refuse permission to appeal the point.

    The importance of language

    There were a few points during the hearing where the language or phrasing used struck me as being regrettable. For example, Lord Justice Stephens queried:

    What does the local authority do after you have given the ability to have sexual activity with people and the patient does not understand that the other party has to consent?’ [emphasis added]

    The court’s function is, of course, to declare whether or not P has the capacity to make decisions about sex. It does not grant the ability to have sex. To phrase it in this way is infantilising because it suggests that P must obtain permission in order to have a sexual relationship when, in fact, this is not the case. If P has the capacity to make the decision to have sex, then they are entitled to exercise that capacity. If P lacks the capacity then, as was stated earlier, the court cannot consent on their behalf. Furthermore, the use of the word ‘patient’ – which was used repeatedly by the Justices to refer to P – perhaps indicates that the judges are not up to date with this area of the law. ‘Patient’ is an outdated mode of referring to the ‘protected party’ in proceedings and is no longer used.

    Later in the hearing Lord Justice Stephens remarked that ‘some people who suffer from these unfortunate conditions are completely compliant’ [emphasis added]. This comment is out of step with disability rights. Describing disabled people as ‘suffering’ and disabilities as being ‘unfortunate’ perpetuates a ‘personal tragedy’ view of disability. It frames disability as being objectively bad and imposes this view upon the disabled person despite the fact that the person might not share it.

    Implications of the move to ‘capacity to engage in sexual relations’

    Counsel for the local authority (Vikram Sachdeva) submitted that the reframing of the decision by the Court of Appeal to ‘capacity to engage in sexual relations’ is not a ‘game changer’ and stated that since the Court of Appeal handed down its judgment there has only been one case before the court where the change from ‘consent to sex’ to ‘engage in sexual relations’ has had an impact. It must be remembered, however, that the majority of capacity assessments do not involve court applications, and so relying solely upon the minority of cases that do go before the court is not a true indicator of how the judgment is affecting assessments. Indeed, in the absence of empirical research there is no real way of gauging whether the Court of Appeal’s decision in JB is changing the outcome of capacity assessments.

    Final reflections

    The judges seemed to be leaning towards an approach that would uphold the need for P to understand the other person’s consent, and which would move away from the strict dichotomy between issue-specific and person/situation-specific approaches to sexual capacity (albeit permission has yet to be granted on that point). This would represent a marked break from how sexual capacity has historically been framed in the civil courts. However, the court has also received written submissions and so the views expressed during the oral hearing cannot be taken as a firm indicator of what the final judgment will be.

    At one point during the hearing, Lady Rose briefly mentioned a proposal from an intervener which would separate capacity from consent. Unfortunately there was no further detail as to what that would entail, but it may be similar to the framework advocated for by Liz Brosnan and Eilionóir Flynn. Brosnan and Flynn contend that the focus should be on providing a person with information and actively communicating with them. If the individual expresses a will and preference in relation to a decision, then, in the absence of coercion, this must be respected. Capacity and consent are currently tightly interlinked in the law, and a proposal that would allow consent to be separated from the need for mental capacity could result in radical change. It will be interesting to see how the court deals with this in its judgment. 

    Following the Court of Appeal’s decision in JBAlex Ruck Keene had tentatively suggested that the move from ‘capacity to consent to sex’ to ‘capacity to engage in sexual relations’ could open the door for the court to make best interest decisions regarding sex. This is because ‘capacity to engage in sexual relations is not explicitly listed as being an excluded decision in section 27 of the Mental Capacity Act 2005. However, section 27 is not a closed list and, towards the end of the Supreme Court hearing, Lord Briggs noted that it was common ground that if the test for capacity to engage in sexual relations is upheld, then the decision to ‘engage in sexual relations’ must be an excluded decision for the purposes of section 27. For now, at least, it appears as though the legal framework may continue to prohibit people who lack capacity to make decisions about sex from having sexual relationships. 

    The judgment of the Supreme Court could fundamentally change the way that capacity is assessed in relation to sexual decision-making and, indeed, how sections 2 and 3 of the MCA 2005 are understood more generally. It is the first time that the court has been asked to look at the test for lack of capacity set out in the MCA in depth and so, regardless of what is ultimately decided, the judgment will be a significant one. The court did not specify exactly when the judgment will be handed down, but Lord Briggs did state that they would endeavour to make it available as soon as reasonably possible. I await the judgment with interest.

    Amber Pugh is a final year PhD candidate in the School of Law and Social Justice at the University of Liverpool. Her research examines the balance between empowerment and protection in mental capacity law, with a particular focus on decision-making around sex and contraception. She tweets @Amber__Pugh and can be contacted via email:  A.V.Pugh@liverpool.ac.uk

    Photo by Francais a Londres on Unsplash shows the Supreme Court’s Official Emblem, designed by Yvonne Holton, Herald Painter at the Court of Lord Lyon in Scotland (Check out this webpage on Supreme Court artwork for more information).

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