Introduction
The Mental Capacity Act 2005 (MCA) came into force in England and Wales in 2007. Its gestation had been lengthy with decision making for adults with ‘mental incapacity’ being debated throughout the 1990s (Law Commission, 1991, 1993a,b, 1995; Lord Chancellor's Department, 1997). Legislation in respect of mental capacity was introduced rather earlier in Scotland through the Adults with Incapacity (Scotland) Act 2000 (Wilkinson, Reference Wilkinson2001). The MCA's focus on decision-making about care and treatment when mental capacity is uncertain takes it into complex territory that the state has generally avoided in respect of adult care. Its provisions for making decisions on the basis of a person's ‘best interests’ and advance and proxy planning address issues about how life is lived in the absence of personal agency and autonomy as well as questions about personal choice and control at the end of life. Until recently, questions concerning day-to-day care and treatment were largely resolved behind closed doors: family carers, professionals and staff, such as nurses and care assistants, made decisions on behalf of people who lacked capacity to consent to or to refuse interventions. Little external guidance was available, nor was there scrutiny of those making these decisions.
A focus on small acts of care contrasts with more prominent debates about the limits of medical treatment and ending of life in the absence of capacity. These have been largely led by medical and legal practitioners who have used common law and professional codes of ethics as a framework for such decisions (Johns, Reference Johns2007). Some debates have entered the public domain through media interest in specific decisions and examples include cases in the European Court of Human Rights brought by individuals, such as Diane Pretty (Pedain, Reference Pedain2003). These have fostered public discussion about the ethics and practicalities of drawing up advance decisions or appointing other people as proxies to anticipate the possible loss of mental capacity. Throughout the developed world, ‘living wills’ have been in use for some time, many prompted by groups that have had specific concerns about self-determination, such as campaigning organisations including the Terrence Higgins Trust which publicises the existence of such documents (Winter and Cohen, Reference Winter and Cohen1999).
There is now considerable public debate about the conditions under which life might be ended (see White and Baldwin, Reference White and Baldwin2006) but there is less discussion about how life is lived when capacity is diminished or lacking (Brown, Reference Brown2007). The MCA aims to influence or guide the process of making, not only major decisions about medical treatment, but also the myriad of small decisions that inform care and treatment on a daily basis. The Code of Practice (Department for Constitutional Affairs, 2007) accompanying the Act identifies the ‘officers’ appointed or acting under the MCA who are subject to this legislation and the wide range of health and social care staff who need to have regard to the Code, but the Act also applies to informal carers, largely families and friends.
The MCA is, therefore, targeted at an extremely broad population, of whom a major proportion is unqualified domiciliary staff or carers supporting people in their own homes. The boundaries between these two groups are, of course, increasingly blurred, with disabled people using their own or social security funding to pay for care, and directly employing personal assistants (see Priestley et al., Reference Priestley, Jolly, Pearson, Ridell, Barnes and Mercer2007).
Questions of autonomy in relation to routine acts of care are particularly salient when care is delivered in the home, a setting characterised by permanence and one where most assume some degree of choice and control (Mallett, Reference Mallett2004), in contrast to the lack of autonomy in hospital (Hickman, Reference Hickman2004). The MCA aims to foster a person-centred approach to care which promotes opportunities for autonomy and involvement in decision-making by those who may lack capacity. However, if the legislation is to impact upon the day-to-day care of people in their own homes, wider public and practitioner discussion about an area of social care that is frequently not observed nor scrutinised may be required. Legislative imperatives, even when accompanied by extensive training and information, may not be sufficient to reach the very wide range of care situations that fall within the Act's remit. Barron's (Reference Barron2001) research exploring the impact of legal reform introduced in Sweden in 1994 with the aim of promoting autonomy for disabled people in everyday life found that, in many cases, the law had not penetrated through to the level of disabled people's perceptions or lived experiences.
The Department of Health's Dignity in Care campaign (CSIP, 2006; Manthorpe and Carr, Reference Manthorpe and Carr2008), which initially addressed the care of older people but was extended to include mental health services for other adults in 2007, has highlighted some of the key issues concerning day-to-day care and communication with people who may lack capacity to make decisions. This initiative chimes with many of the key principles of the MCA and illuminates the values which inform the MCA, framing it not as a technical device for resolving practical issues over complex care but as a means of upholding people's human rights. However, a picture of current practice is provided by the Healthcare Commission's (2007) review of dignity in hospital which found that ‘confused’ older people were one of the groups least likely to be involved in decisions about their care and treatment.
We do not attempt to offer a comprehensive account of the Act's provisions here; such accounts are available elsewhere (Williamson, Reference Williamson2007) and in the Code of Practice (Department for Constitutional Affairs, 2007). Instead, the focus is on the Act's principles and some of its key elements – assessment of capacity and best interests decisions – and the extent to which these provisions are likely to impact on the experiences of day-to-day care for those who may lack capacity.
This paper developed out of the process of producing training materials to assist the implementation of the MCA (Stanley et al, Reference Stanley, Lyons, Manthorpe, Rapaport, Rapaport, Carrahar, Grimshaw, Voss and Spencer2007) for those providing day-to-day care to people who might have problems making decisions about care and treatment in relatively everyday situations. We illustrate the discussion with comments made by people with experiences of using health and social care services and carers who contributed to the consultation which informed the development of the materials (see Manthorpe et al, Reference Manthorpe, Rapaport and Stanley2008 advance access). Their names are anonymised in the extracts used below.
Making questions of capacity explicit
Like much of the discourse around mental capacity, people with experience of using health and social care services and carers who participated in the consultation, focussed on the ‘life and death’ aspects of the Act. They generally welcomed the Act's provision for advance decisions which can be used to refuse specified treatments in the absence of capacity and this aspect of the MCA was seen as a means of stimulating and sanctioning discussion about death:
perhaps the Act will advance decision-making in that way so that people can take more responsibility. I do think as a society we should take more responsibility for expressing our wishes, make known our wishes. We should face death more realistically than we do. We pretend – it's the last taboo isn't it? We pretend it's not going to happen to us so we don't plan for it adequately . . . I think just getting discussion about these matters is good. (Isabel)
The prospect of serious or risky medical treatment is also likely to promote discussion (Curtis et al., Reference Curtis, Patrick, Shannon, Treace, Engelberg and Rubenfeld2001) and Schiff et al.'s (Reference Schiff, Sacares, Snook, Rajjkumar and Bulpitt2006) survey of geriatricians, undertaken prior to the introduction of the MCA, found that a ‘living will’ facilitated discussion of palliative care between patient and the family. While many professionals focus on the patient/professional encounters in this area (Thompson et al, Reference Thompson, Barbour and Scwartz2003), some families may engage in discussion of such matters prior to professional consultation (Doukas and Hardwig, Reference Doukas and Hardwig2003).
Advance decisions to refuse treatment and Lasting Powers of Attorney (LPAs), which allow for the appointment of a proxy decision-maker in the event of loss of capacity, are both likely to prove popular aspects of the MCA and they are the focus of much of the publicity around the Act's implementation. LPAs also provide some assurance of certainty for a future time when vulnerability might be anticipated. However, attitudes and care practices in relation to those who have already lost capacity and in relation to smaller, less high-profile decisions about care and treatment are not so prominent in debates.
The hidden world of care
Many of the decisions about capacity which the MCA addresses concern daily acts of health and social care which are rarely discussed in the public arena outside ‘horror’ stories of abuse or through accounts provided by people from the disability movement (for example, Barnes, Reference Barnes1993). This lack of open dialogue can be explained in part by the stigma which surrounds conditions such as dementia, learning disability and mental health problems, all of which invoke the threat of ‘spoilt identity’ (Goffman, Reference Goffman1963; Weiss et al., Reference Weiss, Ramakrishna and Somma2006). Perceptions of loss of mind and high prevalence of dementia have rendered it one of the most commonly feared threats to wellbeing in later life (Moniz Cook et al., Reference Moniz Cook, Manthorpe, Carr, Gibson and Vernooij-Dassen2006). Care for people in this group can involve intimate physical care and touching – feeding, dressing, toileting and bathing – which transgress established boundaries concerning the body and intimacy (Twigg, Reference Twigg2006). One way in which carers and staff have managed this relationship in the past is through the infantilisation of those they care for (Chappell, Reference Chappell1992). Infantilisation apparently legitimates dependency and provides a familiar framework (the parent–child relationship) in which intimate care can be delivered and boundaries crossed. However, it also presumes a lack of adult capacity to make decisions and to consent or refuse care and treatment.
Scott et al.'s (Reference Scott, Välimäki, Leino-Kilpi, Dassen, Gasull, Lemonidou and Arndt2007) study of the views of older patients (over half of whom had cognitive impairments) and nurses in long-stay hospital care in Scotland found substantial differences between patients and nurses regarding their experiences of the provision of information and decision-making opportunities about daily care. Patients consistently reported fewer such opportunities than nurses described themselves as offering. The study illustrates how, in long-stay settings, power relationships, limited resources, cultures of passivity and systems of group care may act to restrict individual choice and autonomy in day-to-day living. Martin, one of the service users consulted in developing the training materials, commented:
I know of a place where staff working in a group home for people with learning disabilities have always looked after the residents’ money for them.
Such blanket decisions about capacity are most likely to be found in institutional settings where systems may lack the flexibility to identify and respond to varying levels of capacity. However, an unquestioning reliance on procedure or concerns about efficiency can also lead to assumptions about individuals’ lack of capacity informing care delivered in the home. Here, the quality of day-to-day care may be less often open to external scrutiny (Shugarman et al., Reference Shugarman, Fries, Wolf and Morris2003).
The five statutory principles
The MCA is underpinned by a set of five core principles that are to inform all decisions concerning capacity:
1. A person must be assumed to have capacity unless it is established that they lack capacity.
2. A person is not to be treated as unable to make a decision unless all practicable steps to help him (sic) to do so have been taken without success.
3. A person is not to be treated as unable to make a decision merely because he makes an unwise decision.
4. An act done, or decision made, under this Act for or on behalf of a person who lacks capacity must be done, or made, in his best interests.
5. Before the act is done, or the decision is made, regard must be had to whether the purpose for which it is needed can be as effectively achieved in a way that is less restrictive of the person's rights and freedom of action.
(Department for Constitutional Affairs, 2007: 19)
These five principles are used below as a framework to explore professionals’ and carers’ interactions with those receiving care and treatment. The emphasis is on day-to-day acts of care and decisions and the extent to which the MCA may offer opportunities for autonomy and choice in relation to such ‘small acts’.
Assuming capacity
The MCA defines a lack of capacity as an inability to make a particular decision due to ‘an impairment of, or a disturbance in the functioning of, the mind or brain’ (MCA s.2). The Act makes it clear that the impairment or disturbance can be either temporary or permanent. Capacity is therefore defined as both time specific and decision specific (Department for Constitutional Affairs, 2007: Chapter 4). Capacity can change over time as may be evident in people recovering from strokes or for those with short-term or fluctuating mental health problems. In crisis situations, mental capacity may be temporarily lost and then regained comparatively quickly once the crisis has passed. Jacob et al. (Reference Jacob, Clare, Holland, Watson, Maimaris and Gunn2005) found that 60 per cent of patients seen in hospital Accident and Emergency Departments following an overdose of drugs were judged to lack capacity to consent to treatment when first assessed. However, when provided with written information and given time to consider, many had regained the capacity to make the decision in question. The Code of Practice emphasises that people should be assessed at their best level of functioning (Department for Constitutional Affairs, 2007: 4.46): the MCA cannot therefore be used in relation to people who are incapacitated by the use of drugs or alcohol at the point of assessment. So, for example, professionals or carers cannot justify denying someone who is temporarily incapacitated by drink or drugs access to their own finances on the grounds that they lack capacity as they would not be assessing that person's capacity at the individual's best level of functioning. People with long-term conditions such as dementia may have periods when they are more or less able to make a decision: changes in physical health or a new medication may temporarily exacerbate confusion.
This time-specific nature of capacity means that it may have to be reassessed at different times. Initial assessments cannot be assumed to apply over time – the confusion precipitated by a move or the introduction of a new care worker may diminish once the setting or individual becomes familiar – and people therefore need to be prepared to revisit earlier assessments of capacity. Both the training materials on the MCA (Stanley et al, Reference Stanley, Lyons, Manthorpe, Rapaport, Rapaport, Carrahar, Grimshaw, Voss and Spencer2007) and the Code of Practice (Department for Constitutional Affairs, 2007) encourage those making assessments of capacity to review and revise their decisions. However, incentives to promote such an approach will need to be identified; studies of decision-making in children's services (Munro, Reference Munro2002) show that professionals often experience difficulties in reassessing or revising earlier impressions and decisions.
Since capacity is decision specific, professionals also need to be prepared to assess capacity in relation to particular decisions and to recognise that a lack of capacity in one area of life does not mean that an individual cannot make decisions in another field. This requires some careful discrimination, based on knowledge of the individual concerned: for instance, someone with severe learning disabilities may not be able to choose appropriate clothing to put on each day, but may have strong views and be able to exercise choice about what food they want. In the context of mental health services, an individual with a psychotic disorder may perceive threats in their environment where none exist, but they may still be able to make arrangements for their pets to be cared for whilst they are in hospital. In some cases, carers and professionals will be used to making such fine judgements unthinkingly; in others, they may assume that lack of capacity in one arena applies across the board.
Facilitating decision-making
Section 3 of the MCA identifies the key components of an assessment of capacity. Those assessing capacity need to establish whether the person being assessed is able to:
1. understand the information relating to a particular decision,
2. retain the information related to the decision to be made,
3. use or weigh that information as part of the process of making the decision,
4. communicate that decision – by any means, including blinking or squeezing a hand.
The individual concerned has to be able to meet all four of the above criteria to be deemed to have the capacity to make the particular decision concerned, although the threshold for this is not to be greater than that applied to ordinary circumstances. This means that considerable time and effort may have to be spent engaging with the person who is being assessed, communicating and explaining the nature of the decision in question, checking whether the person has absorbed the information, then checking again to discover if the information is retained and processed. Identifying and using alternative forms of communication where an individual lacks speech or hearing can require consultation with those familiar with the individual's patterns of communication or the use of specialist communication tools, such as picture cards. Interpreters may be required. These approaches are not new and may have been part of practice for some time. Marion, who contributed to the consultation used to develop training materials for the MCA, described the Communication Passport that had been used to facilitate communication with her daughter, Anna, who has multiple disabilities and no speech:
It explains what Anna's emotional responses mean, as far as we are able to do so. Each day, wherever she is, staff record what she has done and what her responses to those activities are. This gives us a long-term view on what Anna is trying to tell us about her services and assists us in voicing the decisions that she is making through her non-verbal communication . . . when Anna was admitted to hospital for a planned operation, her Communication Passport was put with her nursing notes and all nursing staff were encouraged to read it.
The person responsible for assessing capacity is the person who is delivering health or social care and anyone who intends to make a decision or take an action on behalf of the person who lacks capacity (Department for Constitutional Affairs, 2007: 4.38). This, therefore, includes informal carers as well as staff working in a wide range of settings, varying from the individual's home to a leisure centre. The Code of Practice envisages such assessments taking place at a variety of levels. Decisions involving serious medical treatment or a move will be likely to require a formal assessment involving a number of professionals, and the MCA makes provision for people lacking capacity, and without family or non-professional carers to speak for them, to have access to an independent mental capacity advocate (IMCA). In complex cases of brain injury, formal psychological and perhaps neurological assessments may be required (see British Psychological Society, 2006). However, many assessments of capacity will be undertaken by those caring for people on a day-to-day basis and will be informal and done ‘on the hoof’.
Such assessments may be made in respect of decisions which have been made in the past without any acknowledgement that they raised questions concerning capacity. People may make a range of minor decisions on behalf of those they are caring for without considering whether they have the capacity to make those decisions. For example, it may have been assumed that an individual's objections to a particular member of staff or to going to bed at a certain time reflected confusion, prejudice or distress, rather than a valid decision. In such cases, staff and carers concerned will first need to recognise that an assessment of capacity is required and, having made the decision that it is, they will need to invest time and energy in discovering whether the individual can understand the questions being asked of them sufficiently and whether they can communicate their decision.
Identifying the need for an assessment of capacity is a key step and one whose necessity will be most evident when a major decision involving medical treatment or accommodation, perhaps a move to residential care, is mooted. Another trigger for an assessment of capacity is behaviour that causes concern (Department for Constitutional Affairs, 2007: 4.35): such behaviour is likely to involve decisions that others judge rash or inappropriate, such as disposing of assets or placing oneself at risk. Recognising that an assessment of capacity is required is likely to be most difficult when an established pattern of care is predicated on an assumption of incapacity. For example, the sister of a young disabled adult may always have planned their holidays for them. Shifting the underlying assumption to one where capacity is presumed will represent a major departure from established patterns of behaviour. It is difficult to identify how and where people will find the incentives or drivers to re-examine the basis on which care is being delivered. When home care or support workers are employed by an agency, assessments of capacity should become part of the review process for existing clients but there is scant evidence of care plans addressing such matters, other than in those areas where standards are high, such as person-centred planning (Robertson et al., Reference Robertson, Emerson, Hatton, Elliott, McIntosh, Swift, Krinjen-Kemp, Towers, Romeo, Knapp, Sanderson, Routledge, Oakes and Joyce2007).
Unwise decisions
The MCA's emphasis on the right to make unwise decisions and its assertion that making unwise decisions does not necessarily mean that a person lacks mental capacity acknowledges the extent to which the wisdom or otherwise of decisions is a subjective judgement. For instance, the decision of a man with learning disabilities to spend his rent on gifts to impress his girlfriend may be regarded as unwise but does not necessarily indicate a lack of capacity. However, as noted above, many assessments of capacity undertaken to establish whether a person has the capacity to consent to care or treatment will be triggered by what appears to be an ‘unwise decision’. Often, the decision in question will take the form of refusing that care or treatment which a carer or professional considers appropriate (Nicholson et al., Reference Nicholson, Cutter and Hotopf2008), for example refusing to be washed (Smyth and Bell, Reference Smyth and Bell2006). The MCA establishes that refusal of care or treatment is not, by itself, sufficient evidence of incapacity. This principle may prove particularly important for those using mental health services where lack of compliance with treatment has, at times, been interpreted as providing the rationale for delivering treatment in the absence of consent (Mental Health Act Commission, 1999).
Best interests decisions
The MCA does not define ‘best interests’ but Section 5 offers protection from liability to those carrying out acts of care and treatment in a person's best interests as long as they have not acted negligently and that they:
1. have taken reasonable steps to assess the person's capacity to consent to the act in question,
2. reasonably believe that the person lacks the capacity to consent,
3. reasonably believe that the act they are carrying out is in the person's best interests.
The Code of Practice is explicit that this protection is designed to cover the ‘millions of acts’ done to and for people who lack capacity to take their own decisions about care or treatment or to give consent for care or treatment (Department of Constitutional Affairs, 2007: 6.1). The two key elements of Section 5 are that an assessment of capacity, of some form, has been made and there is ‘reasonableness’. While ‘reasonableness’ might be open to debate and is as subjective and value laden a concept as ‘best interests’ (Manthorpe et al, Reference Manthorpe, Rapaport and Stanley2008a), evidence that capacity has been assessed may be provided through records (see below).
Section 4 of the Act specifies that best interests decisions must not be based on a person's age, appearance or unjustified assumptions. A checklist (Department for Constitutional Affairs, 2007: 5.13) is provided to inform the best interests decision-making process. This entails, inter alia: considering relevant circumstances and asking if the decision can be put off until the person regains capacity; encouraging participation; considering the person's wishes, feelings, beliefs and values; taking into account other people's views – this requires consultation with family and with anyone with an interest in the person's welfare or appointed to act on the person's behalf. The emphasis on communication and consultation is consistent with the Act's principles. Translating these principles into practice requires time to explore such questions as whether a person with dementia or a person with a brain injury prefers to use a bath or a shower.
The checklist makes it clear that best interests decisions need to be informed by in-depth knowledge of the person receiving care or treatment. Koppelman (Reference Koppelman2002) proposes that the views and interests of both the previous self and the present self of a person with dementia should be taken into account. Knowledge of ‘wishes, feelings, beliefs and values’ of the person counterbalances the views and possible prejudices of the decision-maker. Developing an appreciation of an individual's perspective on a decision entails ascertaining their previous wishes and beliefs and those of their family and friends and these will need to be recorded (an activity that is regarded as difficult even for professionals, Foster et al., Reference Foster, Harris, Jackson and Glendinning2006). Eileen, one of the service users who contributed to the training materials, commented:
If I was ‘failing’ I should want a professional to find out from my family (I have at the moment a husband and three daughters) what is important to me: what makes me happy, what makes me cross, what my interests are, what I can still do.
The MCA's insistence on looking beyond impressions and prejudices and on considering people's choices and history emphasises individual personhood. Dunn et al. (Reference Dunn, Clare, Holland and Gunn2007) argue that the MCA's conception of best interests incorporates an individual's subjective interests into an objective framework.
Discussion – shifting the culture
Recording assessments and best interests decisions offers staff a means of ensuring their protection against liability as well as a means of informing others of what is happening. Prior to the MCA, many small best interests decisions made on behalf of those who lack capacity would not previously have been recognised or recorded. It is not feasible or practicable for staff to record every act of assistance with dressing, feeding or toileting and the decision-making processes that these actions entail, but the decision to undertake these tasks for a person in the absence of consent could be recorded the first time they are done in a new setting.
Many health and social care agencies have revised their documentation to ensure that recording assessments, reviews of capacity and best interests decisions are incorporated into standard practice. Employers increasingly specify the amount and detail of recording required. The danger is that these decisions become simply another box to be ticked. However, the need to record assessments and best interests decisions should have the effect of making decisions about minor acts of care and treatment more explicit and open to scrutiny than previously.
What drivers and inducements will there be for practitioners and carers to invest the time and thought required to assess capacity? In formal care settings, practitioners often blame lack of time, training and staff as barriers to respecting service users’ rights and dignity (Calnan et al., Reference Calnan, Woolhead, Dieppe and Tadd2005). People using services themselves may not always want to be actively involved in decisions about care or treatment. Scott et al. (Reference Scott, Välimäki, Leino-Kilpi, Dassen, Gasull, Lemonidou and Arndt2007) point out that, for some older people, feelings of frailty and vulnerability may result in a need to be cared for and a wish to relinquish decision-making to professionals.
Assessments and decisions made in the context of the delivery of day-to-care or treatment may attract few challenges and much will depend on the extent to which protocols, training and inspection succeed in embedding the principles of the MCA as ‘good practice’ in daily care. Those receiving ‘informal’ care in their own homes may be least accessible to such influences and much day-to-day care is shaped by interpersonal relationships between those providing and those receiving care rather than by the formal structures of care plans or Codes of Practice (Dunn et al., Reference Dunn, Clare and Holland2008). The development of a wider public discourse about capacity and autonomy to inform people's thinking and behaviour in respect of care for people who lack capacity might prove the most effective means of enhancing autonomy over decision-making for people receiving care at home.
Conclusion
In the context of social care policy in England (HM Government, Reference Government2007) and other developed countries (Glendinning and Kemp, Reference Glendinning and Kemp2006), where personalisation seeks to promote greater control and choice, the exercise of choice and control by people whose decision-making capacity is limited is moving under the spotlight. Those professionals most likely to focus on small acts of care are those such as care managers who may be indirectly involved in monitoring care delivered by individuals employed by disabled people or their proxies (Manthorpe et al., Reference Manthorpe, Rapaport, Jacobs, Challis, Stevens, Netten, Knapp, Wilberforce, Glendinning and Harris2008b).
There are some indications that the Dignity in Care Campaign, together with the efforts of some voluntary organisations, is impacting on public willingness to confront and debate issues surrounding the loss of capacity, particularly in relation to older people. For instance, a recent newspaper article on care for older patients focused on practices in respect of toileting and referred to the Dignity in Care Campaign (Revill, Reference Revill2007). However, accepting the principle of autonomy which underpins the MCA is a key means of achieving dignity in day-to-day care for those who may lack the ability to make decisions (Koppelman, Reference Koppelman2002; Randers and Mattiason, Reference Randers and Mattiason2004). Emphasising the association between the use of the MCA in practice and the ethos of the Dignity in Care Campaign might instill the Campaign with a stronger legislative mandate as well as raising awareness of the MCA. In the longer term, public debate about promoting autonomy through small acts of care is likely to intensify as the prospect of surviving into very old age and experiencing its attendant frailties, including possible loss of capacity, becomes a reality for the baby-boomer generation.
