Eleanor Roosevelt, 1958

'Where, after all, do universal human rights begin? In small places, close to home -- so close and so small that they cannot be seen on any map of the world. Yet they are the world of the individual person... Unless these rights have meaning there, they have little meaning anywhere. Without concerted citizen action to uphold them close to home, we shall look in vain for progress in the larger world.' Eleanor Roosevelt, 1958

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Thursday, 27 December 2012

Charlotte Emmett: The significance of capacity assessments for care and residence decisions

I am so pleased to be able to share this guest post by Charlotte Emmett, Senior Lecturer in Law at the University of Northumbria.  Alongside Marie Poole, John Bond and Julian Hughes, Emmett recently published some research on capacity assessment which I would strongly urge everybody with an interest in the Mental Capacity Act to read (Homeward bound or bound for a home? Assessing the capacity of dementia patients to make decisions about hospital discharge: Comparing practice with legal standards.)  Homeward Bound was an ethnographic study which pre-empted to a quite remarkable degree many of the problems identified by Baker J in the recent case CC v KK.  The project was part of the Assessment of Capacity and Best Interests in Dementia Project at Newcastle University, headed by Julian Hughes and funded by the National Institute for Health Research.  In this guest post, Emmett reflects on the significance of capacity assessments about care and residence decisions for older adults.
Every day, decisions are made to discharge older people with dementia from hospital into institutional care. These are often permanent moves. Sometimes they are made voluntarily and sometimes older people lack the mental capacity to express a choice and so health and social care professionals make these decisions for them in their best interests. Studies tell us that a significant number of older people may welcome a move from their own homes into a permanent institutional care, but this isn’t always the case; indeed, relocation can often be the last thing that an older person wants, especially when that person has dementia and declining mental functioning and is already experiencing the discontinuity and disconnect associated with the condition. They may resist the placement, verbally and physically. But they are relocated anyway.


I want you to imagine for a minute what it would be like to be relocated from your own home and placed permanently into an institutional setting, such as a care home or nursing home. Think about the effect this would have on your network of relationships, your sense of security and autonomy.  For many of us, home is a reflection of who we are as individuals, of how we want to be perceived in and by society; the image we want to project to the outside world. It also represents a private place, which is secure and safe and which allows us to exist and function independently, free from external pressures and scrutiny of the State. So home, and what it represents, is about selfhood, autonomy and liberty; for many it is the only place where we feel we can be truly free. 

So what gives professionals the lawful authority to make decisions about where people should live and when can they do so without the consent of the person concerned? The answer is found in the Mental Capacity Act 2005 (the MCA) which governs how and when we can make decisions and carry out acts for and on behalf of incapable adults in England and Wales. A person’s mental capacity would need to be assessed under the Act and if a decision maker has a ‘reasonable belief’ that an older person with dementia lacks the mental capacity to decide where he or she should live, then decisions can be made for that person without consent, in his or her best interests. If a person’s capacity remains intact however, then that individual can choose to remain at home, even if home exposes them to risk. Although this can be difficult to accept – especially when an older person appears vulnerable, suffers falls at home, or is exposed to untold hazards – this is the legal position: adults who are competent can make choices and have those choices respected, even when those choices are risky and unwise. If you think about it, that must be correct, otherwise no one would 
be allowed to bungee-jump, smoke cigarettes or have that extra glass of wine on a Friday night. 

Decisions and activities which carry risks and which are considered unwise can nevertheless be taken by capacitous adults as long as they are lawful activities and don’t threaten or interfere unreasonably with the rights of others. This is one of the benefits of living in a democratic society. Equally, these autonomous rights shouldn’t diminish in society when a person grows old or is diagnosed with a physical or mental condition – but invariably they do. So the law is there to protect and uphold those rights. So an older person with  dementia can stay in her flat even though she may be vulnerable and in spite of the risks, as long as she can demonstrate that she has the mental capacity to make that decision. This means that she must demonstrate an ability to understand, retain, use and weigh in the balance relevant information (pertaining to where she should live) and communicate a choice. This test, which is taken from the MCA and is a functional capacity test, looks at a how a person demonstrates those key abilities in order to arrive at a choice, whatever that choice may be.

The capacity test, and how it is carried out, is, therefore, clearly very important, as the outcome of the test represents the difference between liberty, and the right to have your choices, even your unwise choices, respected in law on the one hand, and the right for others to override those choices acting in your best interests, on the other. So it stands to reason that the way capacity assessments are carried out should be carefully scrutinised, because if assessments don’t comply with the legal standards, then they are not legally and ethically defensible and may unlawfully deny people their rights of self determination and liberty, which are fundamental human rights. 

At this point one could assume that the MCA is a rather sinister piece of legislation that allows older people to be arbitrarily stripped of their rights with impunity; but nothing could be further from the truth. It is an enabling statute that aims to maximise a person’s ability to demonstrate functional capacity, with a presumption that a person has capacity unless it is proven otherwise. It operates to place people who are found to lack capacity at the centre of decision making and to maximise their autonomy to make decisions for themselves wherever possible. But like any law that has ever been passed, the MCA relies on those who are tasked with operating under its provisions to ensure that what is done in practice complies with the legal standards and guiding principles it aims to foster.

Capacity assessments are routinely made by health and social care professionals as well as informal carers. The MCA doesn’t say that only professionals can make capacity assessments, but when decisions are important, or life changing, such as relocating an older person from hospital or home to institutional care, psychiatrists and other health and social care professionals would normally carry out these assessments. There are also a number of clinical tools that have been devised to assist professionals with the capacity assessment process. For example a Mini-Mental State Examination may be used to test a person’s cognitive abilities and recall. People are scored according to their ability to perform simple mathematical tests, reading and writing and the recall of facts. But these clinical tests stop short of providing a legally defensible capacity assessment that that can be relied on by the Courts to deny someone their basic human rights. As such, reference must always be made to the MCA’s functional test.

The first thing to note is that the assessment process under the MCA is decision specific. There is no point talking about a person’s general capacity, gleaned ‘holistically’ over a period of weeks or months by observing that person at home or on a hospital ward; the capacity assessment must be specific to a particular decision and should be assessed at a particular point in time. In line with the enabling ethos of the MCA, assessments should take place when the person is most likely to be functioning well – perhaps in the morning or a period when she is known to be more lucid. Accordingly, capacity assessments mustn’t be conducted at random times on busy wards with frequent interruptions from other staff and distractions and noise. Assessors need to maximise a person’s ability to evidence capacity, so venue and timing are important.

Careful thought needs to be given to what is ‘relevant information’ during the assessment process. So it’s appropriate to talk about the plans for who will care for the person at home, any options available and any proposals for institutional care. The difficulties and risks a person has functioning independently at home and how these may be overcome should also be discussed. It is all too easy for assessors to say that because a person is intransigent when issues of risk are mentioned, that they lack ‘insight’ and therefore lack capacity. Instead professionals should look at the person’s ability to understand and process those risks. For example, I may argue that I like sky-diving because it’s exhilarating, terrifying and it makes me feel alive. I understand that there are risks associated with equipment failure, miscalculating distances, wind direction; it could kill me, but I am willing to live or die knowing those risks and I take certain precautions against them (or not, depending on my nature and how I view risks in life). Ultimately I will continue to sky-dive in the knowledge that there are risks, but I have evidenced a functional ability to understand the risks, retain and weigh them in the balance and to exercise a choice. The outcome of the decision in terms of risk is therefore largely irrelevant to my ability to demonstrate this functional ability. As such, professionals should be minded not to conflate issues surrounding risk, which are pertinent to deciding best interests, with the capacity assessment process.

We can conclude that capacity assessments are complex processes, and capacity, or the lack of it, has a profoundly important impact on a person’s human rights. As the global population ages, the number of older people with dementia or cognitive impairment is increasing. We know that older people with dementia are more likely to be admitted to general hospital than people without the diagnosis and from hospital a growing number will be discharged into long-term institutional care. Accordingly, professional judgements surrounding residence capacity are ever more significant and shouldn’t be taken lightly. Yet because these assessments are routinely made, they are often carried out swiftly and the legal standards that underpin them are not always appreciated or complied with.

It is perhaps surprising then that the first legal challenge to professionals’ assessment of residence capacity was brought to the Court of Protection only recently in 2012, in the case of CC v KK and STCC. This is not because there aren’t legal mechanisms in place to enable older people with dementia to mount legal challenges or that the older lady with dementia in the case was in any way exceptional. Far from it, this was not the first time that an older person had resisted an institutional placement. Perhaps the underlying reason why residence capacity assessments, specifically, are so rarely challenged in the Courts is because they are often seen as falling within the specialism of medicine and once made, appear impervious to external scrutiny. If this is the case, it is worth noting in CC v KK and STCC that all the professionals who carried out assessments of residence capacity, from the community matron to the social worker, to the two doctors, (which included a consultant psychiatrist with 21 years clinical experience, who, according to the judge had carried out a 'conscientious and careful assessment'), were deemed to have adopted the incorrect approach to the assessment of residence capacity, which failed to comply with legal standards of the MCA. 

The judgment in CC v KK and STCC and the guidance it offers to professionals on how to approach assessments of residence capacity should be compulsory reading for all those who are tasked with carrying out residence capacity assessments in practice. This is especially true for those involved in elder care, where ethical and legally significant assessments of residence capacity are a daily concern.

6 comments:

  1. Hi Charlotte,

    Thanks for the post: it's admirably lucid. I wanted to pick up on three points -- which are hopefully not too nitpicking -- where there are grounds for disagreeing with your overview of capacity assessment:

    (i) Functional tests. The MCA is often described as having a functional test of capacity, and in some respects that's true, but the account of this you give might be a little misleading. You focus on the 'four abilities' that assessment foregrounds, but there is no mention of the necessary condition that for a finding of incapacity, an ability must be lacking in virtue of "an impairment of, or a disturbance in the functioning of, the mind or brain".

    This is significant because, to take your example, to possess legal capacity to decide whether to sky-dive you don't need to have the ability to understand, retain, use and weigh, and communicate, so long as an impairment or disturbance is not responsible for lacking these abilities. Often in practice, this 'diagnostic' aspect is understood as a status test: you have to be a person with a mental illness or intellectual disability to qualify (or in rarer cases, be unconscious or in a stupor, etc.). I think that's the wrong way to understand this test and that it should be rendered as another functional test (plus the relation to the other test, i.e. you have to fail at the second functional test of abilities BECAUSE you fail at the first functional test of impairment or distrurbance).

    Even in that revised form, it seems the diagnostic aspect is both a different kind of functional test and crucial for understanding how an assessment ought to work. It also has important implications for equality in the context of disability rights. The Law Commission added it on purpose to narrow the range of people falling under the test, but the question is whether it accomplishes that narrowing on an equitable basis between persons with disabilities and those without them. Focusing on the 'four abilities' alone seems to obscure these issues.


    (ii) Risk. You say: "The outcome of the decision in terms of risk is therefore largely irrelevant to my ability to demonstrate this functional ability." Here I think it's useful to draw a distinction between substantive and epistemic standards regarding risk. Unlike assessment tools like the MacCAT-T, a person does not need to demonstrate greater decision-making abilities to be found to have mental capacity to make a risky decision. But riskier decisions have been found to require more thorough investigations and assessments to establish capacity (there is case law on this, but I can't remember the citations at the moment). That is, a person does not need to be more competent, but they do need to be able to demonstrate their competence more clearly. This might be thought to be in conflict with the presumption of capacity, but it's at least part of how the test has been interpreted by the courts.

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  2. (iii) Autonomy. When raising the possibility that the MCA is rather sinister, you say that "nothing could be further from the truth" and that it "operates to place people who are found to lack capacity at the centre of decision making and to maximise their autonomy to make decisions for themselves". I suspect this is an over-optimistic reading of both the legislation and its implementation.

    At its simplest, someone might think that by streamlining capacity or competence testing, then the MCA has -- for better or worse -- unambiguously increased the power of the state to restrict people's liberty. Whatever the high-flown rhetoric of empowerment and autonomy, or the procedural safeguards in place, it is another weapon in the psychiatric and care armory. That would be a little overblown, perhaps, but I think there's at least a grain of truth in it.

    More substantively, when compared to arrangements in other jurisdictions and proposals to create legislation in line with the UN Convention on the Rights of Persons with Disabilities, then the MCA can seem to come up short from an autonomy-maximising perspective (given an everyday understanding of autonomy). The very fact that the MCA makes legal capacity dependent on mental capacity at all is a cause for concern for some disability rights advocates, who think that no-one should be forcibly prevented from exercising the right to decide for themselves, however impaired they are judged to be. Less radically, there have been criticisms of the capacity assessment test itself and whether it is too stringent, such that it is too quick to conclude that some is unable to make decisions (e.g. the recurrent objection that it is 'too cognitive' -- something Mark Neary has been arguing again in the last few weeks).

    On the best interests side, the courts have given an 'objective' interpretation of best interests, in which regard must be had to the wishes of P but, as we see again and again, these wishes can be overridden if psychiatrists, carers or judges find other factors to weigh more heavily. This is pointedly different to 'surrogate' approaches, in which the current or former wishes of the person lacking capacity must always be deferred to.

    Whether or not you agree with these criticisms of the MCA (I'm certainly sceptical about some of them myself), it seems that concerns that there is something sinister about the legislation could be a great deal 'further from the truth' than you suggest.

    Anyway, apologies for being so long-winded and running over two comments...

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  3. Hi Tom,

    Lucy here. Thanks for your comments, I've got a couple of questions and some points. On your comment that 'a person does not need to demonstrate greater decision-making abilities to be found to have mental capacity to make a risky decision', I suspect Charlotte is referring to the principle of proportionality in capacity assessment. This is (mildly) controversial. Baroness Hale has stated in keynote addresses (and probably elsewhere, but I can't find it at the moment) that the test of capacity does not incorporate proportionality ("...there is nothing in the statutory test to import so-called 'proportionality' - the more serious the decision the cleverer you must be."). However, it does crop up in case law. The Law Commission have a lengthy discussion of proportionality in their report on fitness to plead, from paragraph 3.7 onwards:

    http://lawcommission.justice.gov.uk/areas/unfitness-to-plead.htm

    They aren't fans of it for fitness to plead, as you can see. I agree with you that more risky decisions require greater investigations; I'd suggest that's not a legal principle as such, but more back-covering in the event of future litigation/recriminations.

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  4. On there being two functional tests, I'm intrigued! I think I understand you to mean that what is referred to as the diagnostic test is itself a functional test? So you're referring to
    debates in the philosophy of illness, and the extent to which pathology is just a label we give to a particular set of functional outcomes?

    This makes me wonder how the two functional tests relate to each other. A lot of the empirical research on capacity assessments finds difficulties in separating out 'unwise decisions' from 'incapacity'. The Norah Fry research, for example, calls for specific guidance on this in a revised code of practice. But I'm not sure it'll be easy to do that. Part of what characterises those ways of being in the world we label pathological is a tendency to make decisions others generally regard as 'unwise'. So I wonder if what the two functional tests are really doing is saying "is this 'unwise' decision part of a longer term pattern of unwise decisions which have been labelled pathological, or an unwise decision that doesn't belong to the pathologically labelled functional group of unwise decisions?"

    But this does have problematic implications, as you say, in terms of discrimination. Some people will just be much more likely to have their unwise decisions labelled as lacking capacity, because in part their diagnostic label is predicated upon them making certain types of 'unwise' decisions. That's why, as Bartlett has pointed out, abolishing the diagnostic test probably wouldn't change much in terms of the populations affected by the interventionist powers of the MCA. However, the Law Commission also included the diagnostic test for another reason: it was deliberately used to 'medicalise' incapacity. That is to say, to make it extremely likely that qualified clinicians would be involved in these types of assessments. Interestingly, there is no statutory or common law requirement for medical involvement (except for cases about detention), but the courts very often behave as if there is - for example, the COP application forms call for clinical evidence. I guess this is because they are regarded as best placed to 'link' the first (diagnostic) functional test to the second (decision specific) functional test.

    A critique of the MCA which I think is fairly valid is that in 'medicalising' the test of incapacity we have promoted a set of conditions of assessment which have tended to be insensitive to the relational and ecological elements of capacity, and we have also reinforced a 'disciplinary' outlook on the range of acceptable interventions in people's lives. But because those associated with the CRPD haven't really given any detail on how "assessing supports for capacity" would be implemented, or whether there are decisions that would be permissible that conflict with a person's expressed wishes and preferences (or their freely chosen actions), it's hard to know what alternatives they envision.

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  5. It is interesting that all the debates on the MCA involve the use of complex verbal / written language and terms, not necessarily part of the course of everyday life of humans. Even risks are relative, dependent on your view of life- which itself has inherent risks e.g. natural disasters, being run over by a drunk motorist when crossing the road if you live in a busy urban setting, repeated falls in care home and death due to insufficient staff etc.

    Human life is about mental and physical emotions to events. Someone lacking mental capacity with dementia may be unable to verbalise cogently what they want and start shouting (I am speaking from experience), but someone with day to day knowledge of the person may know what triggers this and be able to 'communicate' to assess. The MCA is not geared to this. So someone who resists leaving their home for a 'care placement' and dies days after will have not only not had their 'wishes' taken on board, but not taken on board by a failure to understand that the risk of moving was a greater emotional upheaval than the risk of staying in the familiar setting, merely deemed risky often because care packages / services are so poor.

    The MCA is a seriously deficient law because it is about back covering- not about autonomy to live our lives as we wish. And increasingly many elderly are being subject to 'interference' even when they have functional capacity, on the basis of being 'influenced' or under stress. Yet most humans are influenced by others and do act under stress everyday, they can be taught to say no by increased confidence.

    We are controlling everyday behaviours / wishes with legislation used largely by coercive social services or health staff.

    Huxley, Orwell and many others would have recognised the society we are now engineering. We do not have the brains of people like these any more as most now are 'clones' to a 'boxed' system of thinking.

    As you note in other jurisdictions things are a little brighter than in the UK because of the disability rights focus- but with things moving globally human 'cloning' is inevitable.

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  6. It's a little tendentious of me to claim that the diagnostic threshold should be understood functionally, of course. The diagnostic threshold that the Law Commission recommended was originally meant to 'coat-tail' on the back of the MHA 1983's wide-ranging definition of mental disorder, which suggests that they had a fairly traditional conception of the sense in which it was to be 'diagnostic' -- i.e. the kind of thing that psychiatrists were dealing with. As you no doubt know, for good reason they then moved from 'mental disorder' to 'mental disability', with a definition fairly close to the one found in the Act itself, namely: "any disability or disorder of the mind or brain, whether permanent or temporary, which results in an impairment or disturbance of mental functioning."

    Whatever the Law Commission had in mind (e.g. the attempts at medicalisation of assessment which you note), I think the language used here is interesting. In both this version and the one that made it into the Act, there is explicit reference to 'functioning', which suggests a functional element. Indeed, in the Act, the necessary condition that there be a "disability or disorder of the mind or brain", which might indicate a further status criterion of being a disabled-or-disordered-person, actually drops out.

    Mental disorder or disabilities (bracketing controversy over terminology) can be examples of 'impairment' or 'disturbance'. But these latter terms invite a more neutral reading too that delinks them from disability in the narrow sense that covers only the familiar gamut of psychosis, depression, learning difficulties, dementia, brain injury, etc.

    On my admittedly highly revisionary proposal, we should read 'impairment' and 'disturbance' more loosely to cover any identifiable influence or condition that means that people are temporarily or permanently unable to decide (as understood in relation to the four abilities). The Law Commission themselves intended "toxic confusional states (whether resulting from prescription or illicit drugs, alcohol or other toxins)" to come within their definition. My sense is that, as far as the letter of the Act itself goes, if not its spirit, there is little to stop this being extended further to extreme stress, coercion, 'weak pathological' states like unbearable grief, and so on. However, distinguishing an impairment or disturbance from being merely unwise, mistaken or simply having a bad day might still involve something like determining whether a decision is part of a "longer term pattern of unwise decisions which have been labelled pathological" (on a suitable reading of 'pathology').

    This might seem to massively widen the number of people who might fall under the Act. However, if this speculative reading was taken up, I'd hope that there would be movement in the opposite direction too: that we would raise the bar for a finding of incapacity insofar as we would ask, 'If this person did not have a mental disorder or disability, then given a similar level of functional abilities, would we seriously question their right to make this decision?' Given the already-existing association between functional deficit and diagnostic label, which you mention, then, that shift might not be huge. But I think it would not be entirely insignificant in terms of mindset either.

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