Final considerations for a s21a challenge: Questions about truth-telling to someone with dementia and, yet again, issues with the Transparency Order

By Daniel Clark, 2nd May 2024

Mrs B has a diagnosis of dementia and has lived in a care home for over a year. She does not want to live in a care home; she wants to return home and can see no reason why she can’t. However, her home has been sold and she doesn’t know about it.

This case (COP 14152805) was heard before District Judge Christopher Taylor, who was sitting remotely (via MS Teams) at Bristol Civil & Family Justice Centre. The hearing I observed, on Thursday 11^th April 2024 at 11:00am, marked the conclusion of these proceedings, which had been constituted as a s.21a challenge to Mrs B’s deprivation of  liberty.

Representing the parties were Counsel for Mrs B, Emma Harrison of Butler & Co Solicitors, instructed by Mrs B’s Accredited Legal Representative, and Counsel for Bristol City Council, Kate Meller. Mrs B’s sons have been involved in the proceedings, and had contributed their opinions throughout, but they were not present at the hearing. 

When proceedings had first begun, Mrs B spent much of her time in her bedroom and did not engage with any activities. Now, she often eats in the dining room and enjoys taking part in some of the activities on offer. 

Given this change, the court is satisfied that it is the best interests of Mrs B to remain in her current care home. However, there were a few matters to deal with. This blog will discuss them, and then discuss the Transparency Order.  

Should Mrs B be told her house has sold?

The first matter for the court to deal with was whether Mrs B should be told that her house has been sold. While there is no dispute that she lacks capacity in relation to her care, residence, and finances, there was a question about whether being told her house had been sold may assist in her understanding that remaining in a care home is the only option (notwithstanding the fact that she has been assessed as requiring 24-hour care). 

Counsel for Mrs B explained that there were three options available: to not tell Mrs B, to tell her once, or to tell her regularly. Counsel explained that her “family were very clear they didn’t want mother to know they had sold her house, and the care home were clear that she would forget very quickly and it would be very distressing”. 

Given that they could not take instructions from Mrs B, her Accredited Legal Representative was neutral on the matter. On the other hand, Counsel for the local authority endorsed the assessment of Mrs B’s social worker. This led to the conclusion that it was in Mrs B’s best interests to not be told about the sale of her house at any point. 

This is because being told may, in the words of the judge, cause “agitation and distress and cause difficulties”; in particular, it may put a strain on the relationship with her sons and the care staff. This may only be short-term if Mrs B forgets but there was also a risk that she would not forget, making the strain more long-term. 

The judge saw this potential for distress as the predominant factor in formulating this best interests decisions, and declared that it was in Mrs B’s best interests to not be told. Instead, the care home should carry on as they are, which is distracting and diverting when Mrs B asks about her house.

Despite the fact that, of course, I haven’t met Mrs B, I found this really quite remarkable. A person can only be said to lack capacity if they cannot understand, retain, use, or weigh, the relevant information, or communicate a decision. However, if someone is denied access to some of the relevant information, their capacity surely cannot be adequately assessed.

By not telling Mrs B  – even once –  that her house has sold and that she therefore cannot return to it, the court is endorsing a situation where Mrs B does not hold all of the relevant information. How can she expected to understand, retain, and weigh-up this information if she has not been given it?

There is also a considerable literature on the ethics of “lying” to people living with dementia. The Alzheimer’s Society employ the example of a person asking for a deceased family member: how should a carer react? Typically, it would be quite distressing for a person to be reminded that their mother has died. 

However, it can also be distressing for the question to be ignored. Here, perhaps it is better to lie by omission (such as distracting them), which is the approach the court is endorsing in Mrs B’s case. In my experience as a paid carer, it’s much easier to think about distracting somebody than actually doing so. If you desperately wanted to see a family member, would you accept someone trying to distract you with a cup of tea or a walk in the garden? 

Some researchers have problematised the idea of “therapeutic lying”; the term employed when carers lie because they think it is the kindest way to avoid distress. Given that we accept truth-telling as a moral good, why would it be morally acceptable to take lying to be a standard part of care for those living with dementia? This can lead to the dehumanisation of the person. The fact remains, however, that truth-telling can be extremely distressing.

“Anna” has explained that part of the process of her mum’s s21a challenge was that her family had to tell their mum that her house had been sold. They hadn’t done this before because they wanted to protect her feelings; they knew it would upset her and they were right. “Anna” writes that telling her mum was “a moment I will never forget. When I told her, mum told me she hated me and would never forgive me. She even told me that she didn’t love me anymore and not to go to her funeral. She was very upset and distressed and obviously I was too”.

This is a stark reminder that there are very real consequences of a radical approach to truth-telling: it can be distressing not only to the person but also to their family. Not one of us can predict whether we’ll develop a dementia and we certainly can’t predict how we’ll react to being told distressing information. However, there are some steps we could take.

Researchers who asked people living with dementia what they think about lying discovered a complex picture. In sum, whether somebody wanted to be lied to depended on the personal views of the person. Interestingly, nobody who thought lying is “always wrong” thought that avoidance of potentially upsetting topics was lying. 

In that research, the researchers suggested that “advanced directives” could “be a fruitful way of identifying people’s preferences towards truth-telling, informing their future care”. In the United Kingdom, this could be included in an Advance Care Plan and is, I think, the best solution open to us (at the moment). 

A potential costs application

Another matter requiring a conclusion was that when she was a patient in hospital, just prior to her move to the care home, Mrs B was very clear that she wanted to return home. This was ignored, and no proceedings in the Court of Protection were commenced. 

Her Accredited Legal Representative therefore wanted a costs Order to be made, which would allow the Official Solicitor to investigate whether it is proportionate to bring a claim under the Human Rights Act on Mrs B’s behalf. 

In effect, this Order would recognise it as lawful for Mrs B’s Lasting Power of Attorney to release funds so as to cover the costs incurred by the Official Solicitor while she investigates this claim. 

The judge was theoretically happy with this Order. However. Mrs B’s LPA for financial decisions is one of her sons, and it was not clear that he had been made aware of this application. The judge was therefore not happy to make the order sought because he wanted to allow him time to make representations. The judge will deal with the matter on the papers, “provided I am satisfied they’re aware of it and have had sufficient time to respond”. Alternatively, he will list the matter to be brought back before him. 

Unusually, I got to see the draft Order under discussion because the judge had not received it, and so asked Counsel for Mrs B to share her screen. This was a great moment for open justice, even though it did only happen because an email was taking too long to be delivered.

It is so much easier to be able to follow the discussions about an Order when we can actually see it. As far as I am aware, only one Court of Protection judge (Hayden J) routinely asks for his screen to be shared so that observers can see the documents, including witness statements, that he is looking at. It would be great if more judges started doing this (and not just because they were experiencing tech issues!)

What will Mrs B be told? 

Mrs B was a social worker, and as such she was quite aware of certain processes: namely, detention under the Mental Health Act 1983. Her Counsel explained that she often asks, “Why am I here, I’m not under section”. The idea that she might be, or that she is being held by virtue of a mistake, was understandably distressing. 

The court was therefore asked to consider whether it should send a short letter or short judgment to Mrs B, explaining that it has been found to be in her best interests to remain in the care home. It did not seem to me that the judge even had to think twice about this: he expressed that he was “more than happy to draft a letter setting out the position”, and for this to be sent out on court-headed notepaper with his signature. 

This is fairly common in Family Court cases, and is (thankfully) starting to find its way into the Court of Protection. For example, Mr Justice Poole detailed in one judgment ([2024] EWCOP 5) that he would write a letter to the protected party explaining the decisions he had made. Similarly, so that P will continue to trust his family and treating teams, John McKendrick KC (sitting as a judge in the High Court) explained in a judgment([2023] EWCOP 51) that he sent a letter to a protected party explaining that the court, and nobody else, was responsible for authorising surgery to which he was not consenting. 

In my view, this is a very encouraging way of ensuring that a protected party is treated as more than just a case number: it ensures that they are recognised as a person whose views and wishes are respected even when they cannot be accepted. 

The Transparency Order

I received the Transparency Order for this case prior to the hearing and, upon reading it, was dismayed to find that it prohibited identification of the local authority 

This is quite unusual: a local authority is a public body, funded by the taxpayer and therefore accountable to her or him. However, it cannot be accountable if the taxpayer does not know what it is doing. For this restriction to be justified there would need to be a fairly compelling reason why the identification of a local authority would (or could) lead to the identification of P. 

At this stage, I knew nothing about this case. However, as a matter of principle, I wrote an email for the attention of the judge. Here is some of it:

This can be quite a scary thing to do but I’ve done this before, including before a High Court judge. I’m therefore “used to it” in a way that can only come from practice (practice that, really, I shouldn’t have ever needed to have!)

The judge dealt with this matter at the start of the hearing. Counsel, who had also been sent my email, did not see a reason why identifying the local authority should be prohibited. They were however conscious of the fact that Mrs B’s children have had strong views throughout proceedings but they were not present and therefore not able to express what they thought about my application. 

The judge, however, did not feel the need to hear from Mrs B’s children before making a decision. After all, this was an “issue of transparency” but I was not proposing that Mrs B should be identified. Clearly, the judge did not think that identifying Bristol City Council would somehow lead to an identification of Mrs B. 

While I was happy that the judge agreed to vary the Transparency Order, I was also dismayed that I needed to apply for this in the first place. At some stage, a lawyer had drafted the Order and a judge had approved it. If there was no compelling reason why identifying Bristol City Council would identify Mrs B, how did this prohibition find its way into the Transparency Order in the first place? 

A few months ago, I observed a case before District Judge Geddes and an almost identical situation with the Transparency Order was played out. In this instance, the judge said of routinely anonymising public bodies, “just stop doing it […] there’s much more important things to be thinking about including the actual facts of this case.”

Clearly, more lawyers need to hear this.

Daniel Clark is a member of the core team of the Open Justice Court of Protection Project. He is a PhD student in the Department of Politics & International Relations at the University of Sheffield. His research considers Iris Marion Young’s claim that older people are an oppressed social group. It is funded by WRoCAH. He tweets @DanielClark132.