Where P should live

By Bridget Penhale, 22 October 2020

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Photo by Bundo Kim on Unsplash

Ethical issues in restraining patients for dialysis

By Jordan A. Parsons – 21st October 2020

It needed four people to restrain him.  I explained to him that he didn’t have capacity to make the decision to refuse dialysis so we were going to give it in his best interests and we would sedate him to do that.  He curled up in a ball in the top corner of the bed and pulled the sheet over his head.  Two psychiatric nurses and two security guards held a limb each so that he couldn’t kick out.  I got an injection into his upper arm and a cannular into his hand.  He was shouting through most of it, ‘Leave me alone – I want to die’.

This is a doctor’s description of using restraint to provide dialysis to a patient with kidney failure (whom we call “Paul”), provided in an earlier blog on this website here.

I read this blog post with particular interest as I am currently researching best interests decisions in relation to dialysis. In carrying out a scoping review as part of this research, it struck me how frequently the question of dialysing uncooperative patients arose. Indeed, there have been many cases like Paul’s. One in the United States is discussed by O’Dowd and colleagues, with the situation described as follows:

‘We ended up deciding that he would be treated against his will which at times involved dragging a kicking, screaming, hitting person, who may have been HIV+, down to dialysis, strapping him down for 4 hours, putting needles in his arms, and dialyzing him. The dialysis staff was not happy about this and it wasn’t clear that it was the best thing or the right thing to do’.

Perhaps, then, the avoidance of restraint is more highly valued in some cases than the life extension that dialysis would provide (be that from the perspective of the patient, the patient’s loved ones, or the clinical team). Dialyzing a severely uncooperative patient would therefore not always be in that patient’s best interests.

Among patients without capacity to consent, both verbal and physical resistance to dialysis are not uncommon among those with kidney failure. Neither is lack of capacity. The average age of a patient with kidney failure in the UK is over 60, so there is a high prevalence of dementia, along with other neurodegenerative diseases and various vascular comorbidities. However, there are other causes of cognitive impairment that might lead a patient to not have the necessary mental capacity to make their own decision about dialysis, e.g. learning difficulties and psychiatric conditions. In the case quoted above, the patient (“Paul”) has been diagnosed as having a borderline personality disorder. Another blog on this website discusses a case in the Court of Protection concerning a patient with ‘a complex psychotic illness’.

Two aspects of Paul’s treatment particularly interest me. First, that the restraint required is rather extreme. Second, that the patient had expressed a clear desire to be restrained as he wants to be dialyzed.

Restraint ‘at the boundaries of acceptable practice’

To dialyze Paul requires, on occasion, both physical and chemical restraint. In doing this, Paul’s clinical team felt ‘at the boundaries of what they consider to be acceptable practice’. The use of general anaesthetic to enable dialysis carries with it a risk of brain injury and death. For these reasons the clinical team sought a declaration that it was not in Paul’s interests to have dialysis forced upon him.

However, even though the restraint in this situation is extreme and the risks high, the alternative is certain death. It is very much a matter of determining the best of two options both that would ordinarily be avoided where possible.  So how best to respond to such cases?

For now, I will consider this question in the abstract, thereby setting aside the fact that Paul has, when capacitous, expressed a desire for dialysis even if restraint is necessary. Cases like Paul’s are not a simple matter of a patient with dementia getting restless and causing a minor disruption. Further, the impact of resistance on this scale extends beyond the patient in question. One might argue that in such a scenario it would be appropriate to consider the wider impact of a patient’s noncompliance. In particular, (1) dangers posed to others and (2) moral distress among the clinical team.

Danger to others

What has been made clear in Paul’s case is the danger of restraint to himself – brain injury and/or death. A best interests decision is about what is best for the patient in question – but from a broader ethical viewpoint it’s important also to consider that a particularly resistant patient might prove a danger not only to themselves, but those around them.

For example, if a patient attempts to disconnect themselves from a dialysis machine, there is the potential for a needlestick injury to staff members. This, in turn, might present a risk of HIV transmission if that patient is HIV+ (the patient’s HIV status may be unknown). Anyone present at the time of such a patient’s dialysis sessions could be put at risk of this, including not just staff, but also other patients, and any family or friends accompanying the patient.

At present, and potentially for an extended period, there is an added risk of staff becoming infected with COVID-19 if they are required to be more physically closely involved in a patient’s care. I have explored the dialysis-specific ethical issues in an article published elsewhere with colleagues, so will not dwell on them here.

The occurrence of behaviour such as Paul’s may also cause significant distress to other patients present at the time, potentially causing them to become agitated and so impacting on their own care (i.e. abruptly disconnecting themselves from a dialysis machine).

Given these risks to persons beyond the patient in question, the clinical team may face a difficult decision. Even if dialysis is considered best for the patient, there surely must be a point at which danger to others supersedes this.

Sedation is a route to enabling dialysis without significant physical struggle, but this option carries its own risks which must surely be accounted for. It has on several occasions been argued that cooperation ought to be a prerequisite for dialysis, and that the need for restraint is evidence that dialysis is no longer appropriate (e.g. Spike 2007; MacPhail et al, 2015).  I am not sure that I agree to quite that extent, but certainly a line must be drawn when a patient is hugely disruptive and poses a danger to those around them.

An argument might also be made from a resource allocation perspective, as a patient requiring restraint will necessitate the involvement of several members of the clinical team. However, equally, it is argued that a nephrologist should, when making decisions for individual patients, not consider wider issues of cost and resource allocation (McDougall, 2005).  I agree that such a decision would be most appropriately made at a policy level, and that the use of resources is not pertinent to the best interests of an individual patient.

Moral distress

Moral distress arises when the course of action a clinician is being asked/instructed to take does not align with what they consider to be the ethically appropriate course of action (Ducharlet et al, 2020).  There is an important distinction between distress and moral distress: a clinician may well find it distressing to provide care that they agree is in the best interests of the patient, but that is not moral distress.

In a case such as Paul’s, moral distress might be experienced by the clinical team if they are of the opinion that restraint for dialysis to such an extent is not in the patient’s best interests. This would be a very reasonable opinion to have when physical and chemical restraint are required for a patient who is hugely resistant to care, and it seems to have been the opinion of Paul’s treating clinician.

A nurse who is providing care that has been authorised by the patient’s doctor may experience moral distress if she does not believe it is the right thing for the patient. A doctor who authorises care that she does not consider best for the patient as a result of pressure from the patient’s family may also feel moral distress. In the case of Paul, the Court of Protection authorised both physical and chemical restraint of Paul, so any member of the clinical team who disagrees with the Court’s decision may experience moral distress in carrying out the authorised care. Of course, an individual member of the clinical team could express an objection to being involved in the restraint of Paul and hope that she may not have to participate if there are enough other members of the team. However, there is no absolute legal right to conscientious objection when it comes to restraint for treatment.

This potential for moral distress raises the question of how (or if) it ought to factor into decision-making. After all, the nature of moral distress is such that the individual experiencing it may have a useful perspective on what care is and is not appropriate for a particular patient. At the very least, moral distress ought to be acknowledged, and an environment should be fostered in which all members of a clinical team feel comfortable voicing their perspectives in the knowledge that they will be listened to. Whilst moral distress is an occasional inevitability, clear and open communication might at least partly mitigate it.

Restraint at the patient’s request

Matters become more complex when restraint is at the patient’s request. Paul presents his clinical team with two conflicting choices – one when he is ill (ill-Paul) and another when he is well (well-Paul). Which Paul should prevail if the aim is to respect Paul’s autonomy?

In this case, the Court sided with well-Paul’s choice, permitting the conflicting choice of ill-Paul at the time of treatment to be overruled. In doing so, an apparent distinction was made between what can be considered Paul’s first- and second-order preferences. Paul’s first-order preference (meaning that which is somewhat base and instinctive) was to not be dialysed, whereas his second-order preference (meaning that which is rather more reasoned and, to use a contentious term, authentic) was to be dialysed so that he could spend more time with his son. Given the account of well-Paul as ‘articulate, thoughtful and intelligent’ during the hearing, the Court’s decision is understandable. Few would deny that his deeper preference is for treatment and that his occasional objections are an unfortunate result of his mental state. Sometimes, however, it may not be as clear.

When the line between the (cognitively) “well” and “ill” patient is more blurred, it may not be as apparent which choice is truly (most?) autonomous. The clinical team – and the Court – may be less comfortable authorising restraint based on one of two conflicting choices expressed by the patient if there is less conviction and demonstrable reasoning behind it. Well-Paul was quite clear as to why he wanted dialysis, but a rather more diffident expression of the want for dialysis may not be perceived as sufficient to outweigh the conflicting choice against dialysis expressed at the time of care. Whilst a best interests decision is not a simple matter of substituted judgement, conflicting choices by a patient will inevitably complicate the decision where one is not clearly more representative of the patient’s true preferences.

Further, there is a question of whether well-Paul is actually entitled to demand that ill-Paul suffers. When ill-Paul clearly demonstrates distress at receiving dialysis, is he to be afforded no autonomy? It has previously been argued that where dialysis is considered to cause unnecessary suffering by clinical staff and the patient’s family it would be appropriate to cease dialysis even if the patient had previously made it clear that she wanted to continue (Kaye and Lelia 1986).  Therefore, even if the more authentic preference of a patient is clearly for dialysis, there may still be a point at which providing dialysis to that patient in their later extremely distressed state is inappropriate. This is an interesting point to consider as it brings into question the relative importance of the patient’s own preferences.

Can Paul’s “authentic” choice change?

A further challenge might arise if the patient’s authentic preferences change. Now that restraint has been authorised to dialyse Paul against his objections, what would happen if well-Paul decided that he no longer wanted dialysis?

Given how things have played out thus far, the clinical team may not recognise any future objections to dialysis as authentic. This may especially be the case if Paul’s mental state deteriorates so that there is no longer a clear distinction between well-Paul and ill-Paul.

Moreover, as time goes on it may be that Paul genuinely does change his mind and wish to discontinue dialysis. It is one thing to say that you want to be restrained for dialysis, but another to experience it repeatedly. A reasonable person might well change their mind. In essence, it is verging on torture.  Interestingly, a study in the US and Germany found the prevalence of post-traumatic stress disorder as a result of haemodialysis to be 10.4%. (Tagay et al,  2007).  An important component of patient autonomy is the right to change one’s mind. In situations such as Paul’s, it is very possible that this right could be (unintentionally) overlooked.

Deciding whether to dialyze a cognitively impaired patient when restraint is necessary is not straightforward. There are myriad factors at play, and decisions need to be made on an individual basis. It is also important that the harm of restraint itself is a key consideration in such decisions due to the potential for lasting trauma. Further, whilst I am as yet unsure of where exactly I think the line should be drawn, I am convinced that there must be a point at which harm to others is reason enough to discontinue dialysis for physically resistant patients.

Jordan A. Parsons is a PhD student based at the University of Bristol’s Centre for Ethics in Medicine. His doctoral research is an empirical bioethics project questioning if and when it is in the best interests of a patient with end-stage kidney disease who lacks decision-making capacity to forego dialysis in favour of conservative management.  He tweets @Jordan_Parsons


Influencing ‘best interests’ decisions: An eloquent incapacitious P

By Jenny Kitzinger, 14 October 2020

If it had already been declared that you lacked capacity to make a decision for yourself, what would you do in court to try to get the judge to make the decision you want? How would you seek to persuade the judge of the logic, reasonableness and ‘rightness’ of the decision you want made? 

I watched someone (I’ll call him “Mr G”) wrestle with exactly this issue in court. I’ve observed two recent court hearings (Case: 13382192, heard by Judge Jim Tindal; one hearing in July, the other in October 2020).  The court has been trying to make a decision about where Mr G should live – and Mr G has been there in (virtual) court trying to influence that decision to go the way he wants it to.

What it means to lack capacity to make a decision

A typical public image of a person who ‘lacks mental capacity’ to make their own decisions – and who might therefore become subject to Court of Protection proceedings – is a severely learning disabled individual or someone with catastrophic brain injuries or advanced dementia. 

In legal terms, such people have “an impairment of, or a disturbance in the functioning of, the mind or brain” (s. 2(1) Mental Capacity Act 2005) which leaves them unable to understand information relevant to a decision that needs to be made, unable to retain that information long enough to make a decision, unable to weigh it up or unable communicate their decision to others. 

Some subjects of Court of Protection decisions “fail” to have capacity on all of these criteria. A person in a vegetative state, for example cannot understand, retain, or weigh information nor can they communicate a decision.

But a person is deemed to lack capacity to make a decision if they ‘fail’ on just one of these criteria. 

For example, someone might be able to understand and retain relevant information about a particular decision, and articulate their wishes clearly, but could nonetheless be deemed unable “to use or weigh” the relevant information as part of the process of making the decision” (s3(1) MCA 2005). 

This means that some people subject to best interests decision-making in the Court of Protection are a long way from the popular imaginings of the typical “incapacitous person” (itself a legal myth) and some can present very clear and compelling statements about the choices they wish to make for themselves.

Eloquent Ps in court

In the Open Justice blog posts about Court of Protection hearings so far, we’ve already met a wide range of people like this including:

  • The “well-mannered, urbane”, “humorous” and “intelligent” Mr A (so described in the judgment, here).  
  • the “thoughtful, articulate and insightful” AB (as described by the judge, quoted in the blog post here)  
  • and the “eloquent and passionate” P who “displayed an impressive understanding of various pieces of legislation” (from another blog post, here

Each of these individuals wanted to make their own choices and clearly resented the imposition of ‘best interests’ decisions upon them. However, regardless of their ‘understanding’, ‘intelligence’ or ‘insight’, the judgment was made that each of them lacked capacity about serious matters including management of their own property and decisions about their health (P) and what medical interventions to receive (AB and Mr A). 

In response to such cases, some commentators have tried to explain how someone may be eloquent but lack capacity, and others have looked at how finely balanced assessments of capacity may be, or questioned how lack of capacity was determined (see the discussion in this blog post here).  Others have challenged how the decision itself was framed in the hearing (e.g. here).   In this post, however, I want to take the capacity assessment at face value, and focus instead on how someone conducts themselves in court in such a situation. 

Mr G: presenting a ‘reasonable’ and ‘capacitous’ self

Mr G is a man in his early 60s, with frontal lobe disorder and other medical complications. He wants to leave his care home placement and return to living in the community. I wrote about the July hearing here). 

The court is considering various options (including a return to living in the community) and a further hearing is scheduled for December once all the relevant plans and options are in place.

Mr G objects to other people making the decision about where he should live because he does not agree that his decision-making capacity is compromised in any way. The manner in which he comported himself in the hearings was striking, his arguments eloquent.

He asserts that he has capacity to make his own decisions

He is concerned about “the profound, serious, and in my opinion inauspicious interjections of certain parties in this action…” (October hearing). There have been, he says, “mis-judgments’ about his capacity due to misinformation, and ‘countless errors’ in a particular report. (July hearing)

He acknowledges that there have been appropriate concerns about his capacity in the past, but these don’t apply any more. His alcohol problem, for example, is he says now under control and he was at pains to demonstrate insight into, and rejection of, his previous, “anomalous”, behaviour:

I recognise my part in the circumstances that presented last year. I’ve never been in these circumstances before. I recognise I have not conducted myself in a way that I would have wished to. I recognise my culpability. (October hearing).

Mr G emphasised the things had changed since that “chaotic” period in his life. He was he said now “perfectly capable of making decisions” (July hearing)

He shows that he understands and is accommodating of the court process

In court, Mr G conveys an image of himself as well able to manage himself and his own affairs. He emphasises his understanding of proceedings (e.g. responding to the judge’s question about his grasp of a particular issue: “I understand entirely, it is not at all complicated”). He underlines that he is not only rational, but also reasonable and accommodating. When conceding, for example, that he was willing to accept a delay in the date for next hearing, he commented: “If it is a question of waiting a month or two, that isn’t going to be an impediment to my acquiesence….I want to make clear that I am a reasonable man”.

He takes responsibility for his actions 

Mr G was also explicit that he was someone who acted responsibly: “I’ve put my affairs in order and done all the things you’d expect a responsible individual to have done.” (October hearing); “I’m used to taking responsibility and welcome it. I’ve always tried to conduct myself according to the right way to behave. I’m sorry if that sounds arrogant’. (July hearing)

He is respectful of others

Although at times appearing upset by what’s said about him in court, Mr G maintains a calm approach to proceedings. He is measured in challenging what he sees as errors of fact in the doctor’s report about him. He is unfailingly respectful of others, being careful to state that the staff in his care home were “courteous and hardworking” and that his eagerness to leave is “no reflection on them”. A rare moment of agitation came in response to the suggestion that he might have begun to integrate into care home life, perhaps going for a stroll with another resident.  This, he says, is “absolute nonsense…it is a factual lie that I have a connection with any individual” (July hearing). He distinguishes himself from the other residents with whom, he explains, he has nothing in common, as they have “mental problems”.

He is restrained and courteous

There was only one moment when Mr G challenged the sense of egalitarian cooperation and drew attention to the power imbalances at play declaring: “It is all very well us sitting here talking about my life but it is being talked about in an atmosphere which does not reflect that I am incarcerated against my will” (July hearing). On the whole, however, Mr G is noticeably restrained, and never rails against what he sees as his unjust incarceration. He seems very conscious of the need to consider how he comes across, commenting at one point: “You’ll draw your own conclusions from how I present myself”. 

When he shakes his head in disagreement, he seems to do so more in sorrow than in anger. Only on a few occasions does he talk ‘out of turn’ carefully alerting the judge to his wish to interject with comments such as “excuse my interruption; when there is an appropriate moment may I make a few comments” 

Overall Mr G comports himself rather like a well-respected retired colleague at a reunion in a barristers’ chambers. The relationship cultivated between him and Judge Jim Tindal also seems mutually respectful, almost collegial. Indeed, the judge expressed the hope that he had a “reasonable relationship with Mr G despite differences of opinion” (July hearing). For his part, Mr G was complimentary to the judge: “You are a deeply fair participant in the hearing, indeed adjudicant” he commented, adding “I am very grateful for your humane as well as your professional judgment” (October hearing).

Reflections 

As I’ve already said on the basis of the previous hearing back in July (here), and as was also true at the October hearing, the court made obvious efforts to treat Mr G with respect and to ensure his views were fully heard.  Nevertheless, it was deeply uncomfortable watching Mr G navigate, in his own words, “sitting in court, at the wrong end of the law”. 

His sense of the indignity at being judged incapable of making his own decisions about important areas of his life was painfully obvious. This is also evident in some of the other blog posts for the Open Justice Court of Protection Project. Even when the court is kind, respectful and has the person’s best interests at heart, the affront to a person’s sense of their own right to make their own decisions remains.

Perhaps the right to make our own decisions is something many of us take for granted and we only realise how central it is to our sense of self once it is under threat? Or perhaps, in some cases, it is precisely because autonomy is a core part of a person’s value system that a case ends up in court?

I was acutely aware of the tensions and contradictions Mr G was navigating in the courtroom setting. On the one hand, he spoke as if he were among colleagues and everyone in the court was an equal participant in the process; on the other hand, he identified and challenged the intervention of outsiders into his life and the power hierarchy at play.

I can’t begin to imagine what it must feel like to believe that you are perfectly capable of making your own decisions and have that denied. I doubt that I’d behave with such circumspection as Mr G in these circumstances. In his situation I’d be more likely to rage against the affront to my sense of self – behaviour that might damage my attempts to persuade them to make the ‘right’ decision about me! 

Watching Mr G navigate the hearings reinforced for me why I have (at a time when my capacity is not being challenged) written a legally binding Advance Decision to refuse certain treatments and have also written (and video-ed) an advance statement recording a general account of my values and approach to life. This highlights some of the values and beliefs so core to who I am as a person that I want them respected in any future best interests decisions made about me. 

In this case Mr G’s own previous capacitous views on the balance to be struck between safety (living in a care home) versus self-determination (living in a flat of his own) are clearly relevant to decisions about his next placement. These views can, of course, often be gleaned from family and friends, alongside looking at past habits and behaviours, but an advance statement (written before he lost capacity) would, I suspect, have been a much more accessible, convincing and engaging way of ensuring that his past wishes are fully considered.

Mr G could be any of us who currently have – and may in future lose – the capacity to decide for ourselves. For some people that loss of capacity is associated with obvious failures in their ability to understand, remember, and weigh information, as with advanced dementia or for people with catastrophic brain injuries. But many of us may be deemed by the courts to lack capacity to make key decisions about our own lives at a point where we believe ourselves entitled to make decisions for ourselves – indeed the very loss of insight that can come with brain injury may render us completely unable to recognise our own limitations. Like Mr G, we may fight (and lose) an argument that we are capacitous. Like Mr G, we may then find ourselves subject to other people’s ‘best interests’ decisions about us – even though, like Mr G, we may have a strong sense that this is an injustice.

Trying to protect ourselves (at least in part) against that kind of future is difficult. It means reflecting, now, on what we want for our future (“incapacited”) self, and the extent to which we want to make decisions in advance for the incapacitated person we might become. It means considering what guidance we want to provide – in the form of an advance statement – for the health and social care professionals (and possibly judges) who will need to make decisions in our best interests.

My observations of hearings like Mr G’s in the Court of Protection reinforce my belief that everyone should consider advance decisions, advance statements and lasting power of attorneys as ways of supporting and protecting their future incapacitous selves – and, indeed, helping those around them who are charged with supporting their decisions, or making decisions for them. The charity Compassion in Dying provides information – for free – about all these options.

Jenny Kitzinger is a Professor in the School of Journalism, Media and Culture at Cardiff University, where she also co-directs (with Celia Kitzinger) the Coma and Disorders of Consciousness Research Centre. She has blogged for the Open Justice Court of Protection Project about this same case at an earlier hearing here.  She tweets @JennyKitzinger

Photo by Vincent Branciforti on Unsplash

Costs and benefits of acting as expert witness in the Court of Protection

By a Serious Brain Injury Case Manager, 13 October 2020

This tweet gave me reason to pause and reflect because it came on the back of a request by a lawyer to commission me, as a professional working in acquired brain injury, as an expert witness for the Court of Protection. 

The vast majority of my work as an expert witness is for the High Court as a Care Expert. It is my role to identify what services and support a person with a brain injury will need across their lifetime and provide costs for this. I have however also been commissioned to give expert opinions for the Court of Protection. Usually this relates to a question of what is in the best interests of a person with a brain injury who lacks capacity to take a specific decision, often related to where someone lives and how they are supported. The person’s lack of capacity has been decided before I am commissioned and is not contested. What is up for discussion is how the individual’s needs are best met, i.e. what is in their best interests? 

I am not part of an organisation that promotes my availability for expert work, it has simply developed over the last 20 years and is sustained by word of mouth. Whilst I am often commissioned by the same people (or their colleagues), I am also commissioned by legal firms and lawyers I have had no contact with too. So, not a closed loop but this is not a question of what economists would call “perfect competition”. 

Responses to Celia Kitzinger’s tweet revealed that this is a familiar problem in many areas of the Court of Protection’s work.  The barrister Katie Gollop (@katiegollop) responded that all 5 anorexia cases in the COP prior to a recent hearing in which she represented P had used the same person as an expert witness.  Maybe, she reflected, having a different expert would make no difference to the evidence or to the outcome of the case “but with no mix, we don’t know”. 

Several experienced COP lawyers raised the issue of payment:  “the limitations of legal aid rates don’t help, I suspect” (@WGAbroad); “It can be tricky to find someone who will work for legal aid rates and produces reports which don’t need clarifying and addendums on so many points that it ends up wasting a lot of time and money… always looking for new ones but actually not many about” (@MrsArcticride); “often the pool is restricted by legal aid rates, proximity to P, and the need for someone who understands the statutory framework of capacity assessment”.  

I have found from my own experience in High Court cases that fellow experts from different disciplines can become familiar faces, particularly in fields where there are very few appropriately qualified and experienced people. This is a real issue when considering the needs of people affected by acquired brain injury, most especially if the outcomes are less obvious and require greater experience to identify and assess. 

The most complex cases that I encounter concern people with “higher level” difficulties with executive skills, i.e. with social behaviour and social communication and with cognition, particularly if the affected person has reduced or no awareness of their difficulties and how this affects their functioning. Most complex of all are those with an intellectual awareness of their difficulties: such people can describe the difficulties they face, but only in the abstract and externally generated and sustained scenario of an assessment. When this intellectual awareness does not affect functioning or behaviour in the real world, this makes assessment a real challenge. There is an increasing body of research evidence regarding how poorly mainstream and generalist services pick up on the needs of the unfortunately named “walking wounded”, i.e. those who have generally made a good physical recovery from their brain injury but who have been left with life changing issues that can affect decision making, planning, problem solving and initiating activity (e.g. Flynn, 2016George and Gilbert 2018Moore et al, 2019).

It is hardly a surprise therefore that some individuals affected by brain injury come to the attention of the Family and Criminal Courts and the Court of Protection. Their Lordships review of the Mental Capacity Act noted the specific issues with assessment of Mental Capacity for people with an ABI and the evidence provided to the review was very critical, not of the perceived paternalism experienced by some other groups, but of the reverse (House of Lords, 2014). Evidence from across England and Wales, specifically naming acquired brain injury, reported a failure to conceptualise and adequately respond to invisible, complex and interrelated difficulties and a failure by non-specialists to know how to assess such matters (Norman, 2016Holloway, 2014;  Holloway et al, 2019)

In recent years I have been approached to undertake assessments and give expert opinion in the Coroner’s Court, the Family Court and the Court of Protection. Sometimes this work is jointly commissioned by multiple parties and sometimes it relies upon Legal Aid funding for that commission. From a financial perspective, it would make sense not to accept such referrals.  The State clearly does not pay the same rate as the commercial world of personal injury litigation. I am part of a small business that needs funding to survive, to support the pro-bono work we do and to fund time for research and writing. 

My personal decision to take on such referrals (occasionally) is informed in part by a sense of duty (if I know something and can help, then I ought to) and, perhaps in a less lofty and self-regarding/virtuous way, because such matters can be really interesting and can tax one’s mind and thinking. I have therefore agreed to work at 78% of the usual medico-legal hourly fee, at 57% and, once, at 42%. On each occasion I have been informed that this is the maximum fee structure permitted for the task. The hours allotted and agreed are never sufficient, so this creates another pro-bono element too. The fact that the fee seems to vary is not something I claim to understand. 

Recently I was approached to undertake an assessment and give expert opinion in a matter which sits firmly in my field of experience and expertise, it was a similar request to others that I have carried out. However, on this occasion, I was informed that the maximum hourly rate was 17.35% of the medico-legal rate (for clarity, not 17.35% less than the medico-legal rate, just 17.35% of it). A quick search of the internet informs me that the hourly rate insisted upon was the same as what was being offered for a “Customer Services Advisor”, where educational expectations of candidates was “GCSE’s preferred”. I turned down this referral. 

So, whilst not doubting at all the skills, integrity and ability of the experts whose names had become quickly familiar to an observer (and to other experts) at the Court, I suspect that funding may be one of the reasons why that familiarity has developed. When it is not “the market” that decides the appropriate rate, an element of self-selection/self-de-selection of who is commissioned becomes normal. Putting it more directly perhaps, who can afford to work for significantly reduced fees? Is “P” able to benefit from the very best of expertise when hourly rate is a driving force for choice of expert? If you have a choice, do you work for less than 20% of your usual hourly rate?

As it should be, giving expert opinion is an onerous task. Never more so than when the outcome could affect where someone lives, who they live with or even if they live at all. It would be a very foolish person to take these responsibilities lightly. Such cases invade my sleep and cause me self-doubt. The reputation of an expert can be lost in an instant. We are all only as good as our last case, as the careless, hubristic, unlucky or over-worked can find to their cost. Within my field there is a dearth of suitably qualified and experienced professionals in practice, let alone able to give expert opinion. I fear that financial considerations with publicly funded cases is exacerbating this situation and doing a potential disservice to both the Court and, more importantly, to “P”, the person who at the centre of the case. Bearing in mind that brain injury is somewhat of a Cinderella with statutory provision, it would be helpful if funding agreements recognised it as a speciality that is nuanced and complex and where achieving expertise is not straightforward. 

The author is an experienced Serious Brain Injury Case Manager who has often provided expert evidence in court.

Editors’ note: We also recommend  this report by Malvika Jaganmohan about the findings of the President’s Expert Witness Group Symposium (dealing with expert witnesses in the family courts). 

Photo by Francesco Ungaro on Unsplash

A Decision about Capacity

By Celia Kitzinger, 12 October 2020

Ruth (not her real name) lives in a care home.  She wants to move out, but not to the Extra Care Housing proposed by the local authority – in part because she has bad memories about the area, and in part because it is a long way from her husband and son.  She has strong views about where she wants to live, and she believes she has the right to make her own decision about this.

At this hearing (Case no 13391039, before District Judge Lusty), the key issue to be decided was whether in fact Ruth does have the right to make her own decisions about where she lives and the care she receives,  or whether others will make these decisions on her behalf because she lacks the requisite mental capacity.

Evidence on capacity

The starting point, by law, is that Ruth does have the mental capacity to make her own decisions.  There is a presumption of capacity built into the basic principles of the Mental Capacity Act: “A person must be assumed to have capacity unless it is established that he lacks capacity.” s. 1(2) Mental Capacity Act

There is no disagreement that Ruth has dementia – and, indeed, that she is deteriorating.  A diagnosis of dementia does not, however, in and of itself, mean that Ruth doesn’t have capacity to make her own decisions.  The Mental Capacity Act s.3 (1) states: “A lack of capacity cannot be established merely by reference to— (a) a person’s age or appearance, or (b) a condition of his, or an aspect of his behaviour, which might lead others to make unjustified assumptions about his capacity.” So the “condition” of dementia is not sufficient to establish lack of capacity.

The Act is clear that the presumption of capacity (s.1(2)) can be rebutted only if – after all practicable steps to help a person to make a decision for themselves have been taken (s. 1(3)) – the person is “unable to make a decision for himself in relation to the matter because of an impairment of, or a disturbance in the functioning of, the mind or brain” (s. 2(1)).

“… a person is unable to make a decision for himself if he is unable— (a) to understand the information relevant to the decision, (b) to retain that information, (c) to use or weigh that information as part of the process of making the decision, or (d)  to communicate his decision (whether by talking, using sign language or any other means).” s. 3(1) Mental Capacity Act 2005

There have been numerous assessments over time by different professionals, all of which find that Ruth lacks capacity to make decisions about residence and care. Reports of these assessments were in the bundle before the court.  

I did not see the assessments of Ruth’s capacity, but I have seen similar reports for other people.  They typically describe professionals’ efforts to explain the different options – often using simple language, visual aids, raising the options with them at the time of day when they are most alert and able to engage, giving people time to process information and checking their understanding.  Assessors typically support the person’s ability to remember information about different options with written or visual information (easy-read leaflets for example) and try to help the person weigh up the pros and cons of different options.  Assessing capacity is a routine part of health and social care: it’s important to ensure that the person is giving valid consent to whatever treatment or course of action is being proposed for them.

The General Medical Council has an interactive tool on “Decision-Making when Patients may Lack Capacity” here.  It’s aimed at doctors but it’s a very useful and straightforward read for everyone.  I particularly recommend the “Case Studies”:  Sally Jackson and Tracey Sarle who have Downs Syndrome are supported to make their own decisions about chemotherapy for breast cancer (Sally) and whether or not to have a smear test (Tracey), and Mr Lang who has dementia is supported to make his own decisions about antibotics for a lung infection and hospital investigation for a problem with his eye.

For Ruth, though, capacitous decision-making did not seem to be possible, however well supported she was.  Although she has strong feelings and wishes about where she lives (and is clearly able to communicate them), assessors have found her unable to understand, or to retain, or to weigh up the information relevant to the decision that needs to be made. 

An independent report from an expert doctor was recently authorised by the judge and this expert – like all the assessors before him – found that Ruth lacks capacity to make these decisions. 

Based on the findings of the numerous capacity assessments, counsel for the local authority accepts the finding that Ruth lacks capacity to make decisions about residence and care.  So do her husband and son, who were both in court and accepted the evidence of the independent report.

The only person who believes Ruth does have capacity to make her own decisions is Ruth herself.  

Ruth’s representative in court

Ruth was not in court.  She was represented in court by a barrister appointed and instructed via the Official Solicitor.  Her barrister reported that “Ruth is very clear in her own mind that she does not lack capacity to make these decisions”.  But he did not argue on her behalf that the court should accept that she has capacity.  

He said that as her litigation friend he was in a “delicate role”.  He could not, he said, agree with the Order before the court in respect of Ruth’s lack of capacity.  Repeating Ruth’s claim to have capacity to make her own decisions, he said, “I simply invite the court to consider that”.  He added that he does “not invite any more evidence on capacity”.  This means, as counsel for the local authority put it, that there is “no active objection to the court finding that Ruth lacks capacity in the relevant domains”.

That’s pretty much what anyone in this barrister’s position would have done – subject of course to the concrete particulars of the case.  Another experienced Court of Protection barrister I contacted, asking what she would do in this situation, said: “Tell the court P says she has capacity and set out any evidence you can find to support that or undermine the other evidence. Then leave it to the court to decide. Potentially let P speak to the judge if she wants to. And then go for P’s wishes being determinative in the inevitable best interests decision.”

The outcome of this hearing was that the judge made a final declaration (pursuant to s. 15 of the Mental Capacity Act) that Ruth lacks the mental capacity to make decisions for herself about where she should live and the care she should receive (and also lacks capacity to conduct legal proceedings).  This means that decisions about residence and care will now be made by the court on the basis of Ruth’s best interests: as the judge put it, “it’s now about looking at the various options for Ruth and deciding what’s best for her”.  

Best interests

In making a best interests decision about where she should live, Ruth’s views will be taken into account.  There was evidence of this already having been done. The local authority reported that the Extra Care Housing option she had objected to was now “off the table – and we’ve removed reference to it in the order”. He said: “We are now exploring Extra Care options in close proximity to Ruth’s family – and exploring both short term and longer-term options, because Ruth has said she doesn’t want to be ‘shifted around’ but to settle in one place”.

Ruth’s husband seemed relieved that the placements considered for Ruth would now be closer to home: he said he “much appreciated” it.  Ruth’s son agreed, but expressed some concern about any Extra Care possibilities as against continued residence in a care home.  He said his mother would “wander out the front door and get lost once she was a hundred meters away from the front door she doesn’t recognise anyway”.  The question of where Ruth will move next (if she does move) will be a key issue for the next hearing at the end of November. I hope to be able to be there.

Reflections

I was left wondering who will tell Ruth about what happened in court today, and what she’ll be told (and what she’ll understand) about the judge’s declaration that she lacks capacity to make crucial decisions about her life.

What must it feel like to believe that you are perfectly able to make your own decisions, and to have a judge rule that you are not?  What effect might this have on Ruth’s relationships with the people around her if she realises that they all (her family too) accepted the view that she lacks capacity to make her own decisions?  

The views and voices of those subject to decisions such as the one imposed on Ruth are rarely heard.  Some of these issues are explored by people involved in The Voices Project in which people with disabilities talk about how it feels to be told that they lack the capacity to make decisions about key aspects of their lives: sex, relationships, and medical treatment. 

Of course, I am reassured by the fact that everyone in court seems genuinely concerned to take Ruth’s wishes and feelings into account, and to ensure that she is happy – and safe – in whatever accommodation she lives in.  Ruth is cared for.  People want the best for her.

But she has been stripped, by law, of her right to decide for herself – and even if the decision that’s eventually made is the decision she would have made for herself, even if (in the words of the barrister quoted earlier)  her wishes turn out to be “determinative” of the decision made about her she may still feel angry and compromised by a ruling that she lacks capacity to make her own decisions.    

Any of us could become a future “Ruth”.  It might be dementia, or a stroke, or traumatic brain injury from a fall or a road traffic accident.  It could be a brain tumour or a disease in the brain like encephalitis.  We could lose some of the cognitive abilities we currently take for granted – and with that, the right to make our own decisions.

Some people are content that others will take over decisions about where they live, what care they receive, who they have contact with, and how their money is spent. They may trust professionals to make those decisions on their behalf. Or they may decide to appoint someone who knows them well – a spouse, an adult child, a friend – with Lasting Power of Attorney for Health and Welfare (and/or for Property and Finance) to make the relevant decisions for them when they are deemed no longer to have the capacity to do so. (Note: “Next of kin” have no right to make decisions on behalf of an incapacitated adult – if you want a family member of friend to be your decision-maker you need to formally appoint them as such on the government website here.)

It is helpful to those who find themselves with the responsibility of making decisions for others – or simply contributing to those decisions (as Ruth’s husband and son are doing) – to have some steer from the person themselves before they lost capacity. The court, and Ruth’s family, could have been helped in decision-making if Ruth had written an “advance statement” (in advance of losing capacity) about her wishes, her hopes, her values. Any “relevant written statement made by [a person] when [they] had capacity must be given particular consideration when arriving at best interests decisions about them (s.4(6)(a)). And if Ruth had wanted to refuse any particular medical treatments she could have done that too, via an Advance Decision (ss. 24-26 Mental Capacity Act).

Many of us will live for months, or years, or even decades with reduced and declining capacity to make our own decisions. Advance decisions, advance statements and Lasting Powers of Attorney are not really ‘end of life’ tools, but ‘end of capacity’ tools that give voice to our decisions and preferences about how we live with impairments of the mind or brain.  They are mechanisms for all of us who have capacity to make serious decisions at the moment to influence what happens to us if, in future, we are no longer able to decide for ourselves.  There are various practical (and philosophical) problems with all of these tools – but they are probably the best options available right now for those of us concerned about losing capacity.

Celia Kitzinger is co-director (with Gill Loomes-Quinn) of the Open Justice Court of Protection Project. She has supported many people with making advance decisions and advance statements and has (of course!) made her own. She recommends the charity Compassion in Dying for more information on these options. She tweets @kitzingercelia

Photo by SHTTEFAN on Unsplash

  

Dementia, Cats and Football

By Joe Lord, Thursday 8 October 2020

Orders from the Court of Protection can be momentous for ‘P’, the person at the centre of the case. Orders may (among other things) deprive P of their liberty, interfere with their bodily integrity or assume control of their property – all steps that could attract criminal sanction were they not implemented in P’s best interests. The underlying themes here – the impact of law on the individual, and the story of the individual themselves – have always interested me, and have no doubt fostered my desire to practise at the criminal bar. 

Touching heavily on these themes, the hearing I observed on 23rd September 2020 (Case number COP: 13573266) struck a chord. Before getting into the detail, I should note that only after chasing First Avenue House was my email request forwarded to the presiding judge, DJ Beckley. I then heard nothing until 2pm, when the judge phoned to admit me to the hearing. The moral here is: if you want to observe, always keep your phone ready for the scheduled hearing time. 

Gerald’s Tale

The Individual

I observed the second of what will be three hearings concerning Gerald (not his real name), an elderly man who had lived in a flat with his now-deceased parents since the 1970s. Gerald’s primary medical condition is vascular dementia, which is largely responsible for the accidents at home that have seen him in and out of hospital over a number of years. This saga culminated in April 2020 when Gerald was discharged to a local care home, with proceedings issued by the Local Authority (‘LA’) in June 2020 to determine next steps, namely where Gerald should live and receive care, and whether Gerald’s tenancy over the flat should be terminated if he remains in care. Gerald was represented by Ms Keri Tayler, with Mr Jon Holbrook acting on behalf of the applicant LA.; Gerald’s place at the centre of proceedings was constantly reiterated by counsel and DJ Beckley throughout the hearing.

The Law

As is routine, the LA applied for an order under s.21A Mental Capacity Act 2005 (‘MCA’) to determine whether Gerald meets one or more of the requirements for the deprivation of his liberty, and to challenge the purpose and conditions surrounding such a step. At first blush, the broad scope of this order seems to provide a worrying degree of power to a judge. Nonetheless, a ‘presumption of capacity’ is fundamental to the MCA (see s.1), a welcome safeguard that requires the state to work uphill when seeking such powerful orders.  

Another protective layer comes from s.21A MCA, which is focussed directly on whether it is necessary, proportionate and in the best interests of P to be detained, rather than on the circumstances which led up to the deprivation of liberty: Director of Legal Aid Casework & Ors v Briggs [2017] EWCA Civ 1169. This seems to ensure P’s current condition is adequately considered, preventing a decision being coloured wholly by past events. It also reflects P’s position as the protagonist of proceedings conducted in his best interest in that the enquiry is focussed on exploring the most up-to-date account of P’s wishes and feelings. 

Comment

I was reassured by the detailed exploration conducted by the court into Gerald’s position. At the previous hearing, Gerald had made clear (via Microsoft Teams) that he knew where he was and what he wanted – particularly access to newspapers and a return to his flat, the address and significance of which Gerald was well able to recall. 

Gerald is clearly a pragmatic and proud man. In this hearing, DJ Beckley ran through Gerald’s statements that he strongly believed he could manage at home with care visits, but preferred to stay in the current ‘so-so’ home if around-the-clock care was needed. If a care home was truly necessary, Gerald asked only that one capable of accommodating his cat could be found; although this could not be done, readers will take comfort from Mr Holbrook (for the applicant), who confirmed that the LA is looking after the cat. Gerald also wanted to see his local football team in action, accepting that COVID-19 – rather than the LA – might be the stumbling block to this. 

These details were significant to me for several reasons. Firstly, they reinforced the position of P as the person at the centre of the case and, secondly, illustrate the genuine care taken by the Court, the LA and social workers – despite the pandemic and wider budget constraints. Most importantly, such details brought to life the charming quirks of an individual: these are details which make legal cases both fascinating and heart-breaking. I could not help but feel compassion towards Gerald, something which no doubt coloured my ‘take-away’ from the hearing that he was strong enough – at least mentally – to have his liberty and dignity back. 

Of course, I could not truly comprehend Gerald’s position, a position which was patently vulnerable given his medical history. Indeed, there were further hints at vulnerability as legal arguments began: although the terms of the Order were largely agreed, Mr Holbrook stated that round-table meetings between the parties were at an impasse without a position statement from the Official Solicitor. Ms Taylor (acting on behalf of Gerald) disputed this, persuading DJ Beckley that, as the applicant, the LA bears responsibility for leading the case direction, and that it made perfect sense for the Official Solicitor to submit her stance last with the benefit of all the evidence. 

However challenging the predicaments of Gerald and those like him, we can take comfort in the knowledge that dedicated and diligent professionals, from social workers to court staff, are striving to ensure that the best decisions possible are made for those like Gerald in our society. 

Joe Lord is an aspiring barrister who recently graduated with a First-Class degree in Law from UCL. Currently a volunteer for Advocate, he is aiming to study the BPC in September 2021. He tweets @Joe_Lord7; his Linkedin is Joseph Lord

Photo by Alexander London on Unsplash

A law graduate’s first experience of a COP (telephone) hearing

By Emily Williscroft, 7 October 2020

My experience of observing a Court of Protection hearing was exciting and bewildering and a brilliant educational opportunity.  I feel inspired to observe more hearings because it’s such a fantastic way of learning more about the law in practice.

I finished my undergraduate degree (with first class honours from Edge Hill University) this summer and I don’t yet have a training contract – though I was proud of myself that I made it through to the Assessment Centre by the brilliant firm, Irwin Mitchell, that does a lot of Court of Protection work.  

I’ve kept in touch with people who work at Irwin Mitchell and on August 18th 2020 I saw this tweet from Kirsty Stuart of Irwin Mitchell. 

With a recommendation like that, of course I wanted to attend some hearings. 

It took me a while to make time to do this (I work full time), but on Friday 18th September I emailed the regional hub court in Newcastle asking to observe a hearing before DJ Charnock-Neal at 11am that day.  I received a response confirming that I could attend, and explaining the process for Judge Charnock-Neal to dial me into the telephone hearing.  I’d been reading tweets about people not getting responses to requests to observe, and about hearings being vacated or postponed, so I was prepared for difficulties –  but everything went really smoothly.

Upon receiving the phone call from the Judge, I was asked a number of formal questions. I had to confirm I was alone and that nobody else could hear the call, that I was not recording the hearing and that I understood I had to keep details that would risk anyone being able to identify P confidential. Once this was complete, everyone in attendance was introduced.  Other people on the call, in addition to the judge, were representatives for the Local Authority and for P (the person at the centre of the case).

As recommended (here) by the Vice President of the Court of Protection, Mr Justice Hayden, the applicant, the barrister for P, Ms Nicola Kohn,  provided a useful background summary of  the case for my benefit so that I could make better sense of the proceedings. I understood that 

P is a grandmother with both dementia and mental health issues. Family ability to provide care and support changed recently so she’s moved into a care home and one of the issues at the hearing was the need for a section 49 report.  I had to look up what that was: Section 49 of the Mental Capacity Act (here) gives the court power to require a Local Authority or NHS body to provide a report about P.  |There was also some discussion about the effect of the new Health Protection (Coronavirus, Restrictions) (North East of England) Regulations 2020. This would have a significant impact on P’s life and therefore needed to be brought to the attention for the hearing as the changes implemented related to care homes. Information about the new restrictions were posted on social media on the same day as the hearing – and in fact I saw a tweet from P’s barrister about this.  She’d learnt about the new restrictions from Twitter which is, she says, “not quite how they told us to research the law at lawschool”!

As it was my first hearing it was all rather overwhelming, I was exposed to a lot of information very rapidly and I didn’t manage to get everything that was said written down or fully understand what I was listening to.  The hearing only lasted for half an hour, so it felt like a bit of a whirlwind.  But I’m glad I did it.

I knew nothing about the Mental Capacity Act 2005, or about the Court of Protection from my undergraduate degree.  I have observed criminal court hearings as part of a module called “Lawyer Skills” but obviously the Court of Protection was very different. It was also completely opposite to the way I had learnt about the law as a student – for example, first learning about criminal offences and then going into court to observe criminal prosecutions.  Here I was having to figure out the Mental Capacity Act (and google it quickly) in order to understand what was going on in court. It threw me a bit! I’m going to research the Mental Capacity Act before observing my next hearing – and I’ll definitely use the new “Hearing Feedback Form” from Open Justice Court of Protection, which is designed to offer a framework for people new to this area of law to understand and record what is happening (and to help shape future blogs). 

I went into this experience with an absolute minimum of knowledge both about the Court of Protection and about the Mental Capacity Act, and am determined to learn more.  I’ve become alert to the importance of ‘capacity’ assessment in determining whether a person makes their own decision or whether it is made for them by others.  I also want to learn more about how ‘best interests’ decision-making works in practice. 

So, I will be back with another blog as soon as I feel confident enough and can make the time to try again!  And I’d recommend these observations to all aspiring solicitors and barristers.  It’s a way of engaging with legal issues when it’s not possible to go into court physically and it’s a great way of learning what actually happens in court. 

Emily Williscroft is an aspiring solicitor who recently graduated from Edge Hill University.  She tweets @emwilliscroft

Photo by Nick Morrison on Unsplash

Observing as a GDL student in the (virtual) Court of Protection

By: Ella Fornsworth, 7 October 2020

As a GDL student looking to gain legal experience in the middle of a global pandemic, things have not been easy recently, with the possibilities of attending court in person or completing mini pupillages significantly reduced. 

I was entirely unsure as to whether I was able to attend court remotely, and had struggled to find comprehensive information on doing so, until a fellow participant on an Inner Temple Virtual Open Day mentioned the Open Justice Court of Protection Project, and advised consulting their Twitter account for guidance on gaining access to remote hearings in the Court of Protection. 

I followed the Twitter account, and not long after doing so received a message from Celia Kitzinger, one of the Co-Directors of the project, detailing extensive information and instructions on how to request access to a remote hearing. 

Consulting their Twitter listings, I chose a hearing that I knew would fit into my schedule and contacted the email address included in the Tweet. 

I kept my email quite short, saying that I was an aspiring barrister currently studying on a GDL conversion course, and that I was looking to learn more specifically about the Court of Protection, the Mental Capacity Act 2005 and Deprivation of Liberty applications. I mentioned that I also wanted to gain experience observing court proceedings in general. 

I did not receive a response to my email until about an hour prior to the hearing itself, and the response simply stated that the judge had granted me permission to observe the hearing, and asked for a telephone number that could be used to contact me. From there, I just had to wait until I received a telephone call around 10 minutes after the scheduled start time of the hearing. 

The hearing I observed was: COP 1354496T KW before District Judge Ellington on Monday 28 September. 

When I picked up, I was speaking directly to the judge, which felt pretty daunting! She asked for confirmation of my name, and then asked that I understood that I could not share the name or details (such as location) of the people involved in the hearing. I replied that I understood, and she gave me a brief outline of the case, and explained that she was going to place me on mute for the duration of the hearing. She also explained that the start time had been slightly delayed as she had been expecting to receive some documents that she had not been provided with. Whilst I was speaking with her, there was some interference on the line, so I had to explain at one point that I had lost her, but she simply repeated her question for me. 

This connection problem seemed to occur multiple times throughout the hearing; sometimes the judge was quite inaudible and the barrister involved explained at one point that he too was struggling to hear. I understand, however, that this is a fairly unusual problem — at least in other hearings covered by observers in the Open Justice Court of Protection Project. 

The hearing was concerned with the transfer of a patient between care homes. The patient’s family was unhappy with the situation at the current one, although the patient said that they did not want to be moved. The main problem that arose was a delay obtaining a financial assessment from the Local Authority on whether one of the family members was able to become a financial deputy for the patient to ‘top up’ the fees of the new care home. The Local Authority barrister explained that the assessment may take another 14 days. 

The solicitor acting for the family put on record the frustration of the solicitors in terms of the ‘radio silence’ they had experienced from the Local Authority. They asked for confirmation that the placement at the care home would not be lost during these 14 days, and suggested that the court should direct that it must be done within 7 days instead, as it was in the best interests of the patient to be moved, especially due to the requirement of a Covid-19 transition plan involving an isolation period. 

The judge enquired as to whether any information had been provided on the staff experience in the new care home of dealing with agitated and aggressive behaviour, as this had been identified as key to the success of the move in a Section 49 report. The family, the Local Authority barrister and the social worker present all stated that they did not have sufficient information on the experience of the care home staff with this kind of behaviour. The family’s solicitor stated that it would be desirable to address reassurance on this fact before the move takes place. 

When asked what order he thought the judge should make, the family’s solicitor stated that the overwhelming case was for a move and that an order should be made, but that the order would be subject to an assessment and transition plan, as well as confirmation that the new care home would have the appropriate skill to deal with challenging behaviour, and the Local Authority would be required to file evidence of these three things, at which point the best interest decision would come into effect immediately. 

The judge stated that she needed to see evidence before she could say that the move was in the patient’s best interests, and this will be discussed at the next hearing, which I hope to be able to attend. 

I am extremely grateful to the Open Justice Court of Protection Project and Celia for providing me with the information and assistance I needed to be able to gain access to a hearing. Projects such as these are vital for not just law students such as myself to add to their experience, but also for the public in general to have the opportunity to learn more about the Court of Protection. 

Ella Fornsworth is an LLM Law and Legal Practice (GDL) student at BPP Law School Leeds, looking to pursue a career at the Bar. She tweets @EllaFornsworth

Photo by Steinar Engeland on Unsplash

Amputation: A best interests decision for the surgeon

By Carrie Hanman, 6 October 2020

Editor’s note: This is one of two blogs published today concerning the same hearing. You can read Adam Tanner’s perspective on the same hearing in the previous blog post.

To support my professional development as a “Return to Social Work” student, I attended (via telephone link because I had problems in joining the video-platform), a Court of Protection hearing before Mrs Justice Lieven on 2.10.20. It was listed on the Family Division of the Royal Court of Justice website like this:

Before MRS JUSTICE LIEVEN
Also sitting as a Judge of the Court of Protection
Friday, 2 October, 2020
At 11:30 AM
FOR HEARING IN OPEN COURT
COP 13659766 Re ‘PA’   MS Teams Hearing

I found the hearing interesting because it built on my previous experience as a hospital social worker and because I have a personal commitment to ensuring that human rights are upheld. 

As is usual for Court of Protection cases, the hearing was subject to a Transparency Order to protect the identity of the individual (P) at the centre of the case.  He was a 61-year-old male inpatient who was of Afro Caribbean origin and had been admitted to hospital with a serious foot infection.  He has a history of mental health problems (paranoid schizophrenia), although this has been sufficiently well controlled for the last 8 years to allow him to live in the community.  He is also a Type 2 diabetic and is asthmatic.  

 The initial application submitted to the court by the NHS Hospital Trust responsible for his medical care (represented by Fiona Patterson) was for a treatment order to allow a below-knee leg amputation but on the day of the hearing the application was amended to request a Court of Protection order that would allow a surgeon the autonomy to decide on the day whether it was in P’s best interests to procced with the originally proposed partial leg amputation or provide more conservative treatment. As counsel put it:

“So what the Trust would like is to slightly amend the care plan and Order so that the surgical procedure goes ahead but if, in theatre, the surgeon thinks he can save the foot, then he’ll drain the wound and if necessary debride the infected bone tissue and sent P back to the ward with antibiotics.  But if his worst fears are confirmed, then he can proceed immediately to a below-the-knee amputation.”

Counsel for the NHS Hospital Trust

Since his admission, P had regularly refused to allow examination of his foot, and redressing of his foot wounds, and he sometimes refused to take his antibiotics. A best interest medical treatment decision order was sought on the grounds that P lacked capacity to understand the severity of his medical condition and to consent to necessary medical treatment. It was submitted that P has an impairment of mind because he has schizophrenia, and is unable to understand his current condition or weigh information relevant to treatment decisions.  P was represented by the Official Solicitor (with Nicola Greaney as counsel)

Counsel for the applicant Trust explained that the original application had been for an order to approve surgical amputation of P’s lower leg because P was at serious risk of potentially fatal sepsis infection and necrosis –  but on the morning of the hearing, the surgeon had observed unexpected signs of improvement which indicated a more conservative treatment approach might be possible. The application was amended to allow for the possibility that if under anesthetised examination the surgeon considered a more conservative approach was possible, the Court of Protection order should allow for the surgeon to exercise his autonomy­­­ in making a best interests decision for P.  The Trust wanted to proceed with giving P a general anaesthetic and then inspect the bone and establish the degree of infection.  If the surgeon’s professional judgment was that amputation was necessary, the Trust wanted him to be empowered to go ahead and do it at that point. If his professional judgment was that it could be avoided when P was properly examined in theatre, then he should be empowered to enact that decision too. This would also avoid the risk to P of having to undergo two separate procedures if amputation should turn out to be necessary.

I was pleased that the immediate response from Mrs Justice Lieven was to express her concern that an Order was being sought which would allow a surgeon to unilaterally decide, on the morning of a scheduled operation, whether amputation should proceed. I found her concern reassuring because the Court is charged with making evidence-based decisions and making an advance judgment about something that had yet to be evidenced inevitably carries risk and reinforces the perceptions of power imbalances that exist between individuals and professionals. 

The surgeon was called to give evidence. He explained that the infection in P’s foot was serious and that the risk of sepsis and necrosis was high and could prove fatal. Since admission, P had frequently refused to consent to physical examination of his foot or to allow the wound dressings to be changed, and he had been non-compliant with antibiotic treatment. Based on the surgeon’s inspection of the foot on Monday, he had believed surgery to be clinically necessary. However, his observation of P’s foot on the morning of the hearing had indicated there to be unexpected signs of improvement. The surgeon advised the judge that he could only undertake a thorough physical examination of P’s foot in theatre, and that depending on the viability of the tissue and bone he would be willing to consider a more conservative treatment approach to treatment (e.g. draining the infection, removing infected bone tissue and treatment with more antibiotics). Cross examination revealed that the surgeon considered the threshold for amputation to be high but that if the application to keep amputation as a surgical option was withdrawn and sepsis infection spread higher up his leg, then P’s demise was likely to be rapid. Despite my concerns about granting the surgeon the final say in making best interests about P’s leg, it was hard to see an alternative way forward given the evidence the surgeon presented.

During the surgeon’s evidence it became clear that no hospital discharge care plan existed. To me this was surprising because it was evident that the hospital would be seeking to discharge P as soon as possible because of COVID19 risk factors and because a surgical ward would not be a suitable environment to support his recovery. 

The reason given to the court for the lack of discharge care planning was that the uncertainty of whether amputation was to proceed meant it was impossible to plan his post-discharge care needs. Yet it was clear from the discussion that his needs were considered high enough to warrant intensive rehabilitation or even possible care within a suitable nursing home. This situation, whilst logical in theory, struck me as strange because in my previous experience as a hospital social worker, discharge planning always started shortly after the admission, and particularly if someone was already known to services. It may be that many medics are unaware of what goes on within discharge planning at an operational level but P’s evidenced need for an early discharge and his need for ongoing care and support were evident to the judge during the hearing so it is surprising that no reassurance of early care planning having begun was offered by the Trust’s legal representative. The judge asked for a discharge plan to be agreed by lunch-time on Tuesday so that it would be available for her at the next hearing, scheduled for the following week.

What also surprised and disappointed me during the hearing was that no reference was made to P’s wishes or to his social circumstances until the judge asked family members (P’s brother and son) to contribute. Obviously as an observer I did not have access to the legal bundle which presumably would have included a thorough best interests assessment, but – like me –  the judge was surprised to discover part way through the hearing that P has a wife. She asked whether all the correct papers had been served to P’s wife, and was assured that they had been, but I do feel that the hearing would have been better informed by verbal reference to P’s wishes and his social circumstances at the outset.  I didn’t really feel that P’s wishes and feelings were given as much weight as I expected them to receive in this hearing. I also wondered whether P (who was described as “pleasant and cooperative”) had been invited to attend the court hearing at which life-changing decisions were being made about him. However, I do feel the judge was sensitive to the situation the family was in and that, had they voiced explicit objections to the application, these would have been listened to. 

Although the application was made by a hospital Trust in respect of a best interest decision for a surgical procedure, the local mental health Trust had been named as a respondent. Their legal representative (Bridget Dolan) made the point that the Trust considered it inappropriate to have been named as a respondent because they were not opposing the application for a Court of Protection decision order on a physical condition, they had met their duty of care towards P and they would continue to do so through further assessment of P’s mental health once more is known about the treatment pathway to be followed. The judge’s response was somewhat impatient: she asked “where is this going?” and said that if it related to a cost application that could be dealt with later (it is in fact to be dealt with in the next hearing) and that if it arises from a sense of grievance then it should be dealt with in correspondence between the NHS bodies, since “in light of the importance of the underlying issues, I’m not terribly interested in dealing with that now”.  (The Clinical Commissioning Group was also represented in court, by Vikram Sachdeva.)

In her short oral judgment, the Mrs Justice Lieven said she was confident (on the basis of a report from a consultant psychiatrist) that P lacked capacity to understand and weigh up information about his condition and the treatment options available.  She declared that it was in P’s best interest to undergo further medical treatment and approved the amended application.  (My connection cut off a few minutes before the end of the hearing.)

A further hearing is set to take place in 7 days, after the surgery, and will address how P’s future care and support needs will be met in the least restrictive way once he is discharged from hospital. I hope to attend this and if so, I shall write a follow up blog. 

This was a thought-provoking hearing which will help my reflective practice when I return to social work.  It is important for professionals to remember that individuals with mental capacity, even those with a history of mental illness, have the right to refuse treatment against medical advice even if it could save their life. It was common ground amongst the parties (and family members) that P did not have the mental capacity to make this decision.  Nonetheless, his wishes and feelings – which were apparently not to have surgery should have weighed heavily in the best interests decision.   After all, an amputation has life changing consequences for individuals and families and it is essential for people to be involved as far as possible and have their voices heard. 

Having attended this hearing, I do feel that P’s human rights were sensitively observed but I still remain uncomfortable about the principle that the Court of Protection has the legal power to provide for advance autonomous best interest decision making to a single professional. I would also personally be interested to learn whether P had been offered the services of an Independent Mental Capacity Advocate or whether anyone from his family had felt able to undertake this role. From what was said in court it was apparent that P’s family members were anxious not to alienate P by appearing (as the judge put it) to be “siding against him”, and this seemed to make it difficult to speak freely. 

Carrie Hanman qualified as a social worker in 1994 and after taking a career break for family reasons she is in now in the process of renewing her registration as a Social Worker with @SocialWorkEng She tweets @CarolineRTSW

Photo by Nino Liverani on Unsplash

A Permissive Order For Amputation Contrary to P’s Wishes

By Adam Tanner, 6 October 2020

On October 2nd 2020, I observed a hearing on Microsoft Teams, before Mrs Justice Lieven in the Royal Courts of Justice (COP 13659766 Re PA).

Lieven LJ was, as she has been in previous cases, clear that an introduction to the case should be provided for the purpose of transparency for observers in the virtual Court. Counsel on behalf of the applicant Trust, Fiona Paterson, therefore, gave a brief history of the facts of the case.

PA is a 61-year-old man who has a history of serious mental health issues, including paranoid schizophrenia. He currently also has Type II diabetes and asthma. His mental health issues have rendered him unable to consent to treatment for a severe infection in his foot and he has difficulties in complying with clinical examinations and allowing his dressing to be changed, due to his mental health problems. He has already had an emergency partial amputation to his foot at the beginning of September. However, the infection has been getting worse, and PA has been refusing to allow doctors to assess the leg or give him any further treatment. 

The order submitted to the court in advance of this hearing, sought authorisation to amputate PA’s leg below the knee; however, during the week of the hearing, there seemed to be some improvement in PA’s condition. His doctor said that on Monday there was around 75% necrotic tissue and 25% healthy tissue; but having inspected PA’s foot that morning he believed there had been some small improvements on this. The Court was therefore now being asked to authorise a series of events:

  • To allow the doctor to administer a general anaesthetic to PA and, under general anaesthetic, conduct exploratory surgery to assess the true extent of the infection. He said he would debride the foot of any necrotic tissue, clean and sterilise the wound and apply a dressing.
  • However, if the infection is found to be worse than currently believed, then the Trust seeks permission to proceed right away to a below-knee amputation. 

Lieven J expressed her initial reluctance to grant such an order, because it was giving vast discretion to the surgeon in the operating theatre to decide whether the below-knee amputation is in PA’s best interests. She, therefore, wished to hear directly from the doctor who would be making the decision in theatre.

The doctor made it clear that he would favour ‘conservative treatment’ and that a below-knee amputation would be a ‘last resort’ and would have to meet an extremely ‘high threshold’. However, he also stated that should PA not have this surgery as soon as possible then PA is essentially a ‘sitting duck for rip-roaring infection which might take his life by systemic sepsis’. The doctor gave evidence that systemic sepsis could, in some circumstances, result in death within hours. 

The reluctance to have two separate hearings, and allow for two separate surgeries, was universally agreed by all parties – in part to ‘avoid distress’ to Mr PA by requiring him to undergo two separate procedures, and in part to avoid delaying appropriate treatment. Counsel for the Official Solicitor, Nicola Greaney, supported the plan put forward by the doctor and was happy for the surgeon to have discretion to make a best interests decision concerning amputation in theatre on the day. 

Mrs Justice Lieven, therefore, granted the order as proposed and that discretion should be given to the operating doctor with the understanding that there is a high threshold needed to undertake a below-knee amputation and that ‘conservative’ treatment options would be preferred. 

This case is by no means the first time in which the Court has had to decide whether it is in the best interests of a person who lacks capacity to have part of his lower extremities amputated. 

In the case of  Wye Valley v B [2015] (https://www.bailii.org/ew/cases/EWCOP/2015/60.html), a 73-year-old man who had a long-standing mental illness, as well as Type II diabetes, was refusing to allow medical intervention for an infected foot. Consequently, doctors believed that P required amputation of the foot, or he would succumb to the infection within days. In that case, Peter Jackson J (as he then was) decided that, although P lacked capacity, it would not be in his best interests to go against his express wishes and amputate his foot. Peter Jackson J emphasised that it is vital not to disregard the views of a person who lacks capacity. The judge stated that when making a best interests decision, “there is no theoretical limit to the weight or lack of weight that should be given to the person’s wishes and feelings, beliefs and values” (at para 10). It should also be noted that in this case, the judge went to meet Mr B in the hospital personally, to understand his views.

Similarly, Mrs Justice Lieven has, in a previous amputation case, East Lancashire Hospitals NHS Trust PW [2019] (https://www.bailii.org/ew/cases/EWCOP/2019/10.html), stated that she had spoken to the patient over the phone “in order to try to understand his wishes and feelings”. This case had similar facts to Re PA: P was a 60-year-old man with paranoid schizophrenia who developed sepsis relating to a diabetic foot infection and had a partial foot amputation. The clinical team similarly sought a below-knee amputation as one option of treatment. Lieven J had regard for Peter Jackson J’s previous ruling in deciding that, despite P not wanting an operation, it would be in his best interests to have it done. 

Unlike these two earlier cases, there was minimal information provided in court or in the oral judgement in Re PA about the wishes and feelings of Mr PA. As far as we know from what transpired in court, the judge had not spoken to PA, nor was PA in court (and it was not clear whether or not he had been invited to attend).  Counsel for PA (via the Official Solicitor) simply said that PA did not wish to have his leg amputated. He had become more ‘cooperative’ in recent days, in that he had permitted doctors to change his dressings and observe the foot, but would not allow the doctor to touch or closely inspect the wound. At the time of the hearing he had also not agreed to amputation. 

What should be noted, however, is that Mr PA’s brother and his son both spoke during the hearing.  The judge asked PA’s brother how he thought Mr PA would feel if he woke up and found he’d been given a below-knee amputation.  “I know for a fact he won’t be happy, whatsoever”, he said.  “He won’t be happy at all.  But as a family we’ve gone through it from every angle and we can’t see any other way forward.”  The judge asked how Mr PA had responded to the partial amputation of his foot that he’d already been given: “Not as bad as I expected it to be.  But I think maybe if it was below the knee, maybe he would have reacted different.”  Mr PA’s son asked to speak to the judge and said:

“I just want to say that when we visited Dad on Sunday he was quite positive and cheerful and speaking about going home and life outside hospital.  I think if he understood the life-threatening situation he’s in, he would be on board with the surgery.  But he doesn’t seem to understand.”

(Mr PA’s son)

This wasn’t explored in any detail, but the fact that Mr PA does not understand his predicament may be the distinguishing factor between this case and Wye Valley, in which P was said to understand the risks of his refusal. In Lieven J’s 2019 case, however, P was unable to understand the risks attached to his refusal. In the current case, Lieven J said she was satisfied that Mr PA was not refusing treatment “due to any religious or other deeply held belief system”, but simply because “he has no insight into his condition”.  

In a short oral judgment, she authorised a ‘permissive’ order allowing the surgeon to proceed as proposed by the Trust, with “freedom of movement to go ahead and make a clinical decision” about whether or not to amputate the leg when Mr PA was under general anaesthetic (planned for Tuesday 6 October 2020).  She pointed out that this proposal from the Trust was supported by the Official Solicitor and also by Mr PA’s brother and son who “do not seek to argue with what is suggested”. 

There is an obvious need for speed in situations such as these, and at a time where the justice system is incredibly backlogged with cases. It is therefore understandable that in urgent applications, not everything is addressed in granular detail; however, the views of the person at the centre of the case should not be given short shrift. Of course, as observers we are not privy to the court papers, and so do not know what was laid out in position statements which could well have provided more in-depth information about P’s wishes and feelings, but these were certainly not raised in Court.

This case may be heading back to the Court in the coming days to address the discharge plan for Mr PA, as at present there is currently no post-treatment plan in place whatsoever.   This was an issue of great concern to the judge – not least because, as Counsel for the Trust pointed out “with the Covid pandemic we need to make sure PA doesn’t languish in hospital any longer than is necessary”.

As a PhD researcher who researches and writes on the role of the courts under the MCA 2005, this case was extremely interesting to observe as there has been a series of cases which concern the amputation of patients’ limbs when those patients have been, predominantly, diagnosed with paranoid schizophrenia.  Lieven J’s handling of an emergency application and the way in which best interests was decided in this case are going to greatly inform my future research into the way in which the best interests test is applied by professionals in both medical and legal settings. Cases such as these illuminate when a patient’s voice should be heard and what a fine balance it is when trying to decide the weight, if any, which should be given to the views of an incapacitous person. 

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

Photo by Street Donkey on Unsplash

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