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”.
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.
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