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.