Health and Social Care in the Community (2014) 22(1), 78–86
doi: 10.1111/hsc.12066
Best interests decisions: professional practices in health and social care Val Williams BA (Hons) MEd PhD1, Geraldine Boyle BSocSci (Hons) PhD2, Marcus Jepson MSc PhD1, Paul Swift 3 4 1 (Hons) PhD , Toby Williamson BSc (Hons) PGD and Pauline Heslop RGN RSCN BSc (Hons) PhD
BSc
1
Norah Fry Research Centre, University of Bristol, Bristol, UK, 2Centre for Applied Social Research, University of Bradford, Bradford, UK, 3Independent Consultant, Bristol, UK and 4Mental Health Foundation, London, UK
Accepted for publication 27 June 2013
Correspondence Dr Val Williams Norah Fry Research Centre University of Bristol, 8 Priory Road Bristol BS8 1TX, UK E-mail:
[email protected]
What is known about this topic
• • •
The Mental Capacity Act (MCA) gives a clear structure for making a best interests decision for someone who lacks capacity. Capacity itself is a difficult concept. Clinicians may find it hard to take into account non-medical factors, while social care professionals rely on joint decisions.
What this paper adds
• •
•
The principles of the MCA are increasingly promoting good practice in best interests decisions. Assessment of capacity can erroneously be equated with lack of insight, and there is sometimes confusion between capacity and best interests. Best interests decisions benefit from clear definition of the different roles and processes involved. These could be clarified within the MCA Code of Practice.
Abstract This paper reports on data collected in 2011 from a national study about the operation of the best interests principle, a key feature of the Mental Capacity Act (MCA) 2005 for England and Wales. The objective was to provide a picture of current professional practices in best interests decision-making. Four contrasting sample sites were selected, in which National Health Service trusts, social care and other organisations were recruited to participate. A multimethod design was followed, including an online survey with 385 participants, followed by qualitative research through a telephone survey of 68 participants, and face-to-face semistructured interviews following up 25 best interests cases, with different perspectives on the process in 12 of those cases. The current paper reports only on the qualitative findings. The findings indicate that the MCA was successful in providing a structure for these practitioners, and that the five principles of the MCA were in general adhered to. A variety of perceived risks led to best interests processes being undertaken, and a typical scenario was for a period of hospitalisation or ill health to trigger a best interests decision process about a social care and or a life decision. The study supported previous research in finding the notion of capacity the most difficult aspect of the MCA, and it provides evidence of some specific capacity assessment practices, including problematic ones relating to ‘insight’. Best interests decisions were often made by consensus, with practitioners taking on different roles within the process. Meetings played a key part, but other ways of involving people lacking capacity and significant others were also important. It was recommended that the issues highlighted in this research could be clarified further in the Code of Practice, or within risk guidance. Keywords: best interests, decision-making, dementia, learning disabilities, Mental Capacity Act, mental health
Introduction The Mental Capacity Act (2005) provides for the first time a legal basis in England and Wales to protect the rights of individuals who lack capacity to decide for themselves about an issue in their life. In addition to supporting decision-making capacity, the MCA specifies a framework for assessing capacity and making a ‘best interests’ decision for someone who, in a particular circumstance, is deemed unable to 78
make that decision for himself/herself, thus balancing protection with empowerment (Boyle 2008). The MCA has drawn attention to the philosophical notion of autonomy (Freyenhagen 2009) and to questions about the value both of individual autonomy as a prized goal, and also the relationship between autonomy and wisdom (the ability to make a wise decision). Mental capacity can be a circular concept from a philosophical point of view (Lucas 2011), as © 2013 John Wiley & Sons Ltd
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the assessment of a lack of capacity only proceeds if there are grounds for suspecting incapacity. Additionally, it is sometimes hard to translate philosophical arguments into clinical practice (Shah 2010, Doorn 2011, Williamson 2011). The ‘decision-specific’ best interests principle of the MCA promotes a holistic view of a person’s life, and lays out a process to help a ‘lead’ decision-maker to make a decision, taking into account what the individual lacking capacity would have wanted, if they had been able to make their own decision (Shah 2011). Complex situations can also arise in which the best interests of family members or carers have to be considered alongside those of a person lacking capacity, as found by Manthorpe et al. (2012). Since the MCA came into force in 2007, research has often highlighted inconsistencies in practice (Lepping 2011, Roy et al. 2011). Furthermore, the specific roles introduced by the MCA, such as the independent mental capacity advocate (IMCA), have perhaps been patchily understood and deployed in best interests decisions (Redley et al. 2008, Manthorpe & Martineau 2010). Some of the challenges no doubt relate to the culture of the professions affected by the MCA; for instance, in health matters (Roy et al. 2011), senior clinicians are unused to consulting with nonmedical parties in making treatment decisions, while in social care, Willner et al. (2011) found that community learning disability teams tended to assume responsibility at the level of the team, rather than of the individual. It seems that the ethos of social care favour a multidisciplinary approach, while the traditional ethos of medicine favour the knowledgeable consultant (Luke et al. 2008). However, as McDonald (2010) suggests, practices and beliefs are complex and shifting, even within one team, and ‘application of the law [can be] … fundamentally an interpretive exercise’ (McDonald 2010, p. 1240).
Aims and goals The Best Interests Decisions Study (BIDS) was commissioned by the Policy Research Programme at the Department of Health and carried out by a multicentre team (Williams et al. 2012). The research had the remit to provide a picture of current professional practices in best interests decisions, over the whole spectrum of people with an impairment of, or a disturbance in, the functioning of the mind or brain (Mental Capacity Act 2005, p. 2). It also covered different types of decisions in health-care, social care, and property and affairs. The goal was partly to provide a measure of progress in using the MCA, from the point of view of practitioners, while the qualitative phases, reported © 2013 John Wiley & Sons Ltd
on in this paper, aimed to explore in some depth the issues, challenges and solutions in making a best interests decision.
Methods Although this paper focuses only on the qualitative data, the three-phase multimethod design of BIDS is outlined here to show how participants were recruited and sampled. Phase 1: online survey The online survey (385 responses) was based on the MCA Code of Practice (Department for Constitutional Affairs 2007) and data were collected in a purposive sample of four contrasting areas of England, with varying socioeconomic profiles and ethnicity, size, geography and relative density of population. Within each area, we recruited National Health Service trusts, private and statutory organisations, voluntary sector and social care organisations and legal practices, where senior managers were asked to cascade information leaflets to their staff. The sample was therefore self-selecting, but local MCA leads and managers helped us to target specific groups, to ensure that we recruited a range of people likely to be involved in the MCA. However, the final sample was skewed towards health professionals (66%), with some gaps noted at this stage, for instance, in IMCAs (2%) and care assistants or support workers (4%). Quantitative data were analysed using SPSS for descriptive and inferential statistics and are reported in Heslop et al. (2012). Phase 2: telephone interviews At the end of the online survey, an invitation was included to enable participants to opt into Phase 2 of the research. Those who consented were then sampled, to reflect the different professional roles likely to be involved in the MCA (see Table 1). This resulted in 68 telephone interviews being conducted, each of which focused on one particular case selected by the participant. The telephone interviews (coded in this paper as T) were structured by key areas of a best interests decision, while offering opportunities to follow up matters raised by participants. For instance, a commonly mentioned issue was concern about taking sole responsibility for assessment of capacity, and we therefore probed further into the reasons behind this. The telephone interviews were transcribed and a preliminary stage of thematic analysis took place before Phase 3, so that the findings could influence the subsequent topics 79
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Table 1 Role of respondents in Phase 2 (telephone interviews) Role of respondent Health clinician Nurses PAMS Staff in long-stay hospitals or care Residential home staff Social care professionals Legal Mental health Psychologist Ambulance staff Family member or friend IMCA Other Total
Area 1 1 2 1 1
Area 2
Table 2 Role of respondents in Phase 3 (face-to-face interviews) Area 3
1 3 1 2
1 2 2
2
2
5
3
1
5
1 2
1 2
4 1
20
2
1
17
1 13
Area 4
Total
Role of respondent
1 4 1 1
4 11 5 4
1
5
Health clinician Nurses PAMS Staff in long-stay hospitals or care Residential home staff Social care professionals Legal Mental health Psychologist Ambulance staff Family member or friend IMCA Other Total
9 1 3 2 2 1
3 12 2 6 5
1
1 1 68
18
IMCA, independent mental capacity advocate; PAMS, Professions allied to medicine.
discussed in the face-to-face interviews. Data from Phase 2 were re-read alongside the Phase 3 data in the final qualitative analysis, described below, and a common coding frame was developed for both data sets. Phase 3: face-to-face interviews The face-to-face interviews (coded as F) offered a chance to discuss issues and tensions about MCA practice in greater depth, again focusing on actual cases, but aiming to understand better participants’ own theories. Twenty-five cases were discussed in this phase, of which 22 were with a participant from Phase 2. Of those, 15 focused on the same case as in Phase 2. The remaining three participants were IMCAs, deliberately recruited at this stage to fill sampling gaps. We sought to include multiple interviews with different people involved in the decision process in every case, and succeeded in 12 cases, resulting in a total of 44 interviews in this phase (see Table 2 for professional roles of participants). Ethical approval was obtained via the ‘Essex 2’ national research ethics committee. All participants at each phase of the research were given information and provided written consent directly to the research team, to ensure that their anonymity was protected. Nevertheless, the topics discussed were sensitive and personal. A protocol for assuring confidentiality in the interview process was followed, and care is taken in this paper to ensure anonymity of participants and the cases reported on. 80
Area 1
2
Area 2 1 2 2
Area 3
Area 4
2 1
2
4
1
1
1
4 1 15
4 7
1 4 4 1 7
2
4
6 1
6 2 1
1
1
3 14
4 9 44
2
1 8
Total
IMCA, independent mental capacity advocate; PAMS, Professions allied to medicine.
Analysis Data collection throughout the study was shaped to some extent by emerging findings (Charmaz 2006, Hodkinson 2008, Moriarty 2011, pp. 11–12). For example, in Phase 1, 10% of participants indicated that the person for whom a best interests decision was made did in fact have capacity, thus pinpointing some confusion in this area. This was followed up in Phase 2, where we asked participants about the way in which capacity had been assessed and in Phase 3, we explored in more depth the meaning that people attached to the notion of ‘capacity’, and some of the resultant problems for them. Analysis of data from Phases 2 and 3 was carried out using NVivo 9 (QSR International, 2011), by first organising the data according to the stages and processes dictated by the MCA. Under each of these headings, such as ‘assessment of capacity’, detailed coding was carried out, which then became the basis for cross-cutting, superordinate themes. This paper focuses on three of those themes: (i) managing risk; (ii) blurred notions of capacity; (iii) joint decisionmaking.
Findings Managing risk From Phase 2 interviews, it seemed that the best interests process was generally triggered by a change © 2013 John Wiley & Sons Ltd
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in circumstances for the individual, revealing the risks they faced. A serious decline in health or a period of hospitalisation could alert professionals to the need to protect an individual from risk. For instance, we were told about a man with profound learning disabilities (Richard: F1) who had been admitted to an acute hospital because of aspiration difficulties. The consultant responded to the risks he perceived for Richard, by referring him for artificial feeding, but in this case, it was decided not to go ahead with the operation, as the team found out about what was really important for Richard: If he then couldn’t eat or drink, basically he would have nothing else left in life of pleasure to him. (F1b)
Richard’s psychological well-being was thus balanced against the risks he faced, and in this case, quality of life issues outweighed the protective impulse. However, these matters were complex. For instance, another patient with learning disabilities who needed an MRI scan would have had to be sedated in order to undergo the scan, and as the psychiatrist commented: There’s a balance of risk to apply, so it’s not straightforward. (T21)
Health emergencies and hospitalisation in fact often had the effect of revealing wider risks that the patient might face in their life. Thus, discharge from hospital was a common context for a best interests decision about the need for future care and accommodation. One interviewee reflected: It’s the old saying … everything just hobbles along until some event happens, like this, and suddenly you realise that it has been hobbling along. (T08)
A change of accommodation might be triggered by a health need, but would potentially impact on the social well-being, as well as the physical needs, of the person lacking capacity. The range of potential risks was wide. The inability to cope safely with everyday life at home was often the issue prompting practitioners to consider the best interests of people with dementia, who were moving out of acute hospital care or who were felt to be at risk in their own home. For instance, one woman who lived in sheltered housing was admitted to hospital with an infection (T53). As there were concerns about her safety (she had been ‘wandering’ out via the fire exit in hospital and had had several near misses with the traffic), the decision was whether to admit her to a care home. Other examples of risk included the risk to physical health or safety through difficulties associated with self-care (T32, F13) and © 2013 John Wiley & Sons Ltd
the risk posed to individuals because of their own preferences and lifestyle choices (F16: choosing to spend money on luxury goods or alcohol) and financial abuse by relatives (T42, T46). For instance, a care home manager (T42) explained how suspicions were raised about the motives of a distant relative who started to visit an older resident: Really the difficult bit was about the money … and that just made us slightly uncomfortable, if I’m honest, because we thought, well ok; does she [the relative] have a right to or doesn’t she have a right to access P’s account? (T42)
Typically, one risk factor which triggered the original best interests process tended to reveal other complex factors, which could include a possible breakdown in existing care arrangements for an individual. Phase 3 data helped to outline three major categories of risk: (i) people being unable to manage safely; (ii) health deteriorating past a critical point; (iii) a crisis precipitated by changed circumstances for a third party, such as a carer. In the first category were several cases where the risk was perceived as being posed by the person’s own behaviour, and so we asked participants how they took into account the third principle of the MCA, relating to ‘unwise decisions’. Responses revealed that risk was calibrated according to the possible severity of outcome for the person (F16) and the length of time people had been living ‘at risk’ (F09). Participants were often keen to portray their own professional actions as not being overly protective, and they justified their formal actions by showing how repeated prior attempts had been made to protect people from themselves. One psychologist, for instance, said: Staff have suggested and taken such care to help him understand his own problems and take control, but it hasn’t worked. (F09)
When does an unwise decision become a risk? People in receipt of social care were already having support to manage risks, for instance, about self-care, budgeting money or in one case, protection from drug dealers. However, when these support measures seemed inadequate, practitioners started to reconsider the capacity of the person to make that decision alone. The next section considers the ensuing issues about capacity. Blurred notions of capacity Assessment of capacity proved to be the most difficult and sensitive aspect of the MCA. In Phase 2, we asked about what had led the practitioner to conclude that the person lacked capacity, and a common 81
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response was ‘lack of insight’. A typical example was ‘Molly’ (T13), an older woman living alone, who had been admitted to hospital, following a fall. It then transpired that dementia could be a compounding factor. Molly’s capacity was assessed by asking her about the arrangements she would need when she returned home, but: We felt that she was unable to weigh up the information, so she didn’t … she wasn’t able to demonstrate that she had any insight into her difficulties. (T13)
As in several other instances, ‘insight’ referred to the inability of an individual to understand the impact of their own health and care needs, often under changed circumstances. Rather than allowing the ‘unwise’ principle to prevail, practitioners regularly framed a person’s decision as proof of lack of capacity, even though the notion of lacking insight is not mentioned in the MCA. The result of these difficulties was that many participants (16; 24% in Phase 2) preferred to assess capacity by a consensus of opinion, or to pass the responsibility to a specialist. There was a strong indication from at least nine of the telephone interviews that participants were reluctant to take responsibility for assessing that someone lacked capacity. Decisionmakers regularly said that they deferred to others, either those who might know the person better, or those who had a degree of expertise in the area concerned, in sixteen cases a psychiatrist or medical assessor. In Phase 3, we specifically asked about practitioners’ understandings of the phenomenon of ‘capacity’, and about the feelings and dilemmas they might experience in relation to capacity assessments. In general, they worried that much of a capacity assessment is based on ‘gut feeling’, although several said that the MCA test of capacity provided a reassuring structure: I suppose it’s difficult. I think the baseline is just your own kind of gut feeling and thinking, ‘this isn’t right’. (F23)
However, participants welcomed the decision-specific nature of MCA capacity assessments, and gave very positive examples where a person was shown to be capable of some decisions, such as where to live, but not capable of others, such as financial matters. In only nine of the 25 Phase 3 interview cases was capacity assessed by the person who led the best interests process. However, a capacity assessment was often part of a wider process driven by an awareness of the risks faced by an individual; what emerged was a phenomenon we labelled the ‘concertina effect’, in which practitioners moved between the best interests decision itself and the assessment of 82
capacity, generally portraying both as an interaction with the person, conducted over time: It’s asking her what she feels, does she know where she is, does she understand what her needs are, how do you see yourself managing, you know …. Those are the sorts of questions we tend to ask. And then we wait for the response. And we might go off on different tangents depending on what response we get. (F12)
The first stage was generally to consider what the risk was, and what the solutions might be. It was only then that the issue of capacity was addressed, and participants often saw this process as one in which gradual trust and understanding were built up between practitioners and the individual. For instance, a patient was described who was resisting being undressed, bathed and physically examined on a psychiatric ward (F23). However, the ward manager did not want to delay the decision about enforcing personal care for too long, as the patient’s health was in jeopardy. On the other hand, they also wanted to have time to get to know the patient, and to persuade him to change his clothes independently: I wanted him to at least get to know us and at least trying to trust us a little bit, before we went in and manhandled him, for want of a better word. (F23)
In longer processes, where a person was already living with social care support, capacity could become a very blurred concept, and was interwoven with the capacity to manage one’s life without risk. For instance, one man with learning disabilities was considered to be engaging in risky behaviour by going out at night and getting involved with drug dealers (F09). An initial suspicion existed that the individual may not be able to make an informed decision about his own actions. That was why the concerns about safety arose in the first place, and so practitioners moved back and forwards between trying out ways for the individual to protect himself, while the ultimate failure of those attempts fed into an assessment that this man really did not have the capacity to understand the consequences of what he was doing.
Joint decision-making Just as with assessment of capacity, participants often made best interests decisions in a team. The word ‘democratic’ was used more than once. For instance, in F12, three participants separately gave us their perspectives on ‘Hilary’, an older woman who had been admitted to a community hospital, on a long-stay basis, following a minor stroke. It then became apparent that she had a longer term mental health problem. © 2013 John Wiley & Sons Ltd
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Additionally, her home circumstances were not straightforward, and her grandson was suspected of taking money from her. Where was she to live? This involved several decisions, which were discussed in a series of meetings: What usually happens here is we have our multidisciplinary case conference every week, and the subject of capacity is usually brought up there. (F12a)
Expertise was recognised as being part of the particular professional role, and each practitioner was anxious not to overstep his/her role; for instance, the medical consultant deferred to the social worker in matters to do with living arrangements. Furthermore, the case included an element of conflict between the family members and Hilary herself, and so meetings had to be carefully calibrated to ensure that the grandchildren were informed and effectively ‘controlled’ by the best interests process, which focused on Hilary’s own well-being. You may need to go back, as we did with Hilary, more than once. And then if you’re still not sure about whether you’ve got all the information … then think about who else could be usefully involved in helping you make that decision. So I mean using the IMCA was useful. (F12c)
It can be appreciated that a best interests process was typically not just a ‘one off’ meeting, but consisted of a series of interrelated encounters between the various parties involved. Hilary’s case also points out the difficulties related to timing. In fact, she died suddenly, before moving out of hospital. A protracted process of meetings can delay matters, and many decisions do have to be made urgently, some within 24 hours. Despite the benefits of several professionals being involved, we found that it was important for someone to take responsibility in leading the decision-making process. If no one officially adopted that role, problems could ensue, decisions were not respected by others or unnecessary delays occurred. For example, one man’s move out of a long-stay hospital (F08) was delayed when the social services care manager did not take responsibility for the decision, and another person in T49 had crucial tests delayed because of the unavailability of the medical staff to lead a best interests meeting. However, analysis of Phase 3 data suggested that there were at least three different functions involved in the process, which could be combined, but which could also be carried out by different individuals. These were:
•
Leading a best interests process (by organising meetings, contacting relevant parties and ensuring that records were kept).
© 2013 John Wiley & Sons Ltd
• •
Chairing a best interests meeting (to make sure information was shared and that everyone had a say). Taking responsibility for the actual decision (including clarity about what the decision was).
A typical pattern in some of the more protracted and detailed cases was that an initial major decision (e.g. about moving house) was made effectively outside a meeting; people were subsequently invited to a smaller, more intimate meeting, to explain the decision, and to discuss with them some of the ‘lower level’ sub-decisions arising from the major decision. These included decisions, for instance, about the furnishings or decoration of a person’s new room or home. Three particular issues about consulting others emerged. First, participants were universally eager to see the ‘decision’ itself as a joint process of agreement and consultation. Family members, care home staff or long-term friends not only knew about the person’s preferences but crucially could often advise on how the person communicated. The enormity of the responsibility of making a best interests decision for someone else weighed heavily on participants: I don’t think I would like to make decisions regarding patients’ treatment purely on what I felt was appropriate or not appropriate, really. I think it has to be that everyone that’s involved with that particular individual, that all their opinions are taken into consideration. (F11)
It was only in very urgent cases (e.g. in taking someone to hospital following a drugs overdose in T24) that it was sometimes impossible to contact someone close to the individual. Second, in many decisions, a complex array of factors had to be balanced, including the best interests of the person lacking capacity with those of their family. In F04, an older man with long-term psychiatric problems wanted to go home to live with his wife; however, the wife herself had developed health problems, although she desperately wanted her husband to come home: We considered very carefully, obviously, whether there was a conflict of interest, but we decided that there could be no conflict between husband and wife, who clearly loved each other, because what was good for her had to be good for him. (F04)
The third issue relating to family carers was that of conflict. There were times when the person lacking capacity wanted to live independently, but family members felt that they would not be safe. More significantly, however, there were cases in which the attitude or behaviour (e.g. care practices or possible financial misdemeanours) of a relative or friend lay at 83
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the root of the problem, and so consensus decisionmaking had to overrule a relative’s view: You just try and give … reasons, and try and get them to see. But document anything that the other person has said that they’re not happy about. But the decision was made even so. (T43)
Making best interests decisions was obviously both stressful and emotional. However, in the end, that stress was reduced by the knowledge that the MCA was there as a kind of protective shield, both for practitioners and for the person lacking capacity: I suppose all you can hope to do is make the right decisions at the end of the day. For those that can’t make the decisions for themselves, that you hope that you make the right decisions for them. (F11)
However, enthusiasm for the structured framework of the MCA was tempered in many cases by lingering concerns about autonomy. For instance, care home staff in particular were said to experience conflicts, when a best interests decision had to be made for someone: They are trained that they (the residents) have a choice, they have a right. (F13)
Involving the person lacking capacity was therefore often seen as a way of producing a joint decision, which re-focused on the autonomy of the person for whom the decision was being made, bringing them back into the driving seat. Formal meetings were not generally seen as the best way of engaging with people lacking capacity. Some people were said not to be able to understand or follow the meeting, while others became upset and distressed. More informal and repeated interactions were said to be far more effective, particularly when people’s ability to participate was fluctuating. This more prolonged process could enable practitioners to become more familiar with, and trusted by, the person lacking capacity, and could also enable them to explain the information in different ways. Two individuals with learning disabilities, for instance, were facing the possibility of surgical operations (T18 and T28), and were assisted in their understanding: We did things like we used a full-size body map, first of all to check her knowledge base around her body … did she understand that there were things inside her, did she have that sort of conceptual ability? (T18)
Effectively, these strategies fed back into the assessment of capacity, as, if and when they were able to understand and express an opinion, they could then show that they did have capacity after all. It can be 84
appreciated how difficult it was in practice to untangle the different processes in a best interests decision. Reflecting on the nature of these decisions, often with life-changing outcomes for the individual, participants in this research regularly constructed a decision as a joint, consensual process, involving social interaction with the person most affected, as well as others around them. One palliative care nurse, for instance, summed up neatly the benefit of the MCA in re-shaping her practice in approaching older people who had been referred to a nursing home. Prior to the Act, she said she would have accepted that the referral decision had been made, and not questioned it. However, she said that now the MCA gives her the ammunition to challenge others, and to see whether the patient’s views have been sought: You’ve got more strength behind questioning why nobody’s listening to the lady in the bed. (F14)
Discussion This paper serves to flesh out, through real practice examples, the points made about notions of autonomy (Lucas 2011, Shah 2011), conflicts of interest (Manthorpe et al. 2012) and the preference for multidisciplinary decisions (Willner et al. 2011). Assessment of capacity, as reported in this research, was certainly the most difficult and sensitive issue in the Act (Freyenhagen 2009, Doorn 2011). Although the MCA Code acknowledges that sometimes a specialist should be called in to assess capacity, the decision-maker should normally carry out that assessment himself/herself. We found that this notion was not fully embedded in practice, and it was considered hard to disentangle a notion of ‘capacity’ from unwise or irrational decisions. Furthermore, some of the capacity assessments described seemed to rely on notions that are not part of the MCA Code of Practice, for instance, the notion of insight into one’s own condition or needs. The underpinning question in this research was about when and how professional practices could be affected by legislation such as the MCA. In general, it seemed that the best interests principle was most often used to afford greater protection to individuals who were at risk, either from themselves or from others. It was only on rare occasions that the outcome of a best interests decision resulted in an individual achieving greater independence. Matters relating to risk and protection have always been of concern to both health and social care practitioners (Commission for Social Care Inspection 2008, Fyson 2009), and it could be argued that the MCA has simply given a framework and structure to approach these situa© 2013 John Wiley & Sons Ltd
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tions. The typical outcome of a best interests decision was for the person lacking capacity to move into a place where they could have a greater degree of support or protection. As Boyle (2008) and Collopy (1995) also found, the capacity to make a decision was often interwoven in these cases with the capacity to manage one’s life, particularly for older people or those who had dementia. The fundamental tension faced by all the participants was between their role in supporting autonomy and protecting people lacking capacity, as seen also in Dunn et al. (2010). The responsibility of taking over that decision on behalf of someone lacking capacity clearly weighed heavily on the majority of participants in this research, and support was sought regularly from local MCA lead officers. While the MCA guidelines provided some structure, by separating out assessment of capacity from best interests decision-making, this paper has particularly highlighted the links between both of these processes, and the way in which practitioners moved between ‘capacity’ and ‘best interests’, producing a type of concertina effect, in which a lack of capacity emerged from, and was constructed by, a discussion on best interests. It was clear that some of the issues highlighted in this research could be clarified further in the Code of Practice (DCA 2007) or within risk guidance. Some of the most practical findings related to the ways in which best interests processes and roles could be structured, with the lead decision-maker actually taking responsibility for clearly defining the decision, and for informing others who were involved. Moreover, case studies based on the real dilemmas facing practitioners are useful to supplement both training materials and guidance. This project had its limitations, partly as the initial brief was ambitious. We did not succeed in capturing the viewpoints and issues facing family carers, nor those lacking capacity themselves, and some of the points raised in the current paper could usefully be pursued further with those participants. In particular, the findings relating to disputes and conflict resolution should be viewed from the perspectives of different parties involved in those processes. The MCA is a person-centred piece of legislation, a view that was warmly endorsed by participants in the current research. However, the dilemmas they faced touched on the fundamental problems of what is meant by notions such as ‘capacity’ and ‘decisionmaking’. The value of human autonomy was seen to be fundamental to the practices of social care and health practitioners who were involved in the BIDS project. What emerged from this research was a picture of professionals who were keenly following © 2013 John Wiley & Sons Ltd
and interpreting legislation by developing some of the basic principles of the MCA within the particular situations they faced. Best interests decisions, like any decisions, were seen as joint affairs, involving practitioners, people who are close to the person concerned and the actual person lacking capacity. It was that collective view of decision-making which emerged at the heart of the most reflective and successful best interests practices.
Acknowledgements This is an independent piece of research commissioned and funded by the Policy Research Programme in the Department of Health. The views expressed are not necessarily those of the Department.
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