Social Work and the NICE Guidance on Palliative Care
A paper written in 2004-5 analysing the treatment of social work in the National Institute for Clinical Excellence guidance and its other publications in the UK on end-of-life and palliative care; based on two lectures given at the time. Contains quantitative analysis of language use in relation to social work and social care and a critique of healthcare services bias that avoids a concern for social issues.
Content
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Social work and the NICE Guidance on palliative care
Abstract
The guidance published by the UK National Institute for Clinical Excellence (NICE) on improving palliative and supportive care for adults with cancer is analysed, as a case study of the treatment of social work, social care and social issues from the perspective of a healthcare organisation, in the context of the incorporation of social care into healthcare provision in the UK. A quantitative analysis of word occurrences demonstrates inclusion of social issues, but an aggregation of social care with health care and of social support with psychological, spiritual and other forms of nonmedical provision. Examination of the guidance Manual and its supporting Evidence and Economic reviews discloses coverage but limited articulation of social work and social care roles, while use within the documents of several professional and status distinctions make it hard to understand the integration of service as multiprofessional and holistic. Professional social work bodies and social workers need to identify and promote the particular contribution of social work and social care, while also showing how these are integrated into a multiprofessional service.
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Social work and the NICE Guidance on palliative care
Malcolm Payne, Director, Psycho-social and Spiritual Care, St. Christopher’s Hospice, 51-59 Lawrie Park Road, Sydenham, London SE26 6DZ Email: [email protected] Telephone +44 208768 4500
Introduction: the NICE Guidance on palliative care
In 2004, the UK National Institute for Clinical Excellence (NICE; now merged to form the National Institute for Health and Clinical Excellence), published guidance on ‘improving supportive and palliative care for adults with cancer’ (NICE, 2004). It was intended to ‘define the service models needed to ensure that patients with cancer, their families and others carers receive support to help with cancer and its treatment’ (NICE 2004: 15). NICE is ‘the independent organisation responsible for providing national guidance on the promotion of good health and the prevention and treatment of ill health’ (NICE, 2005). Its guidance is regarded as an authoritative standard for UK National Health Service (NHS) provision, and is intended to assist NHS commissioners and service providers plan through local partnerships the services in their area. It was produced by a working party, after extensive consultations with organisations and professions represented in the field. The Guidance Manual is supplemented by two documents: a literature review, the Research Evidence (Gysels and Higginson, 2004) and an Economic Review (Ward et al., 2004), which costed the implementation of the Guidance. Thus, the Guidance represents an authoritative research-based and costed model of health and social care provision in an important specialty relevant to social work and social care. The aim of this paper is to examine critically the treatment of social work in the NICE Guidance on palliative care, as a case study of social work’s treatment in a researchbased healthcare policy and practice document in a multiprofessional specialty. The analysis offers an indication of how social work stands in the context of UK official policy-making, and how professions such as social work are affected by the use of research evidence in health care decision-making. This is important, because government policy is to incorporate social work into major public services such as the NHS and education. Palliative care is a positive service context for incorporating social work because of its multiprofessional ethos, whose conception explicitly requires social work participation (Saunders, 2001), this paper asks how the authoritative professional and service guidance incorporates social work into palliative care.
Method
A search for a number of relevant terms was carried out on the main guidance document, the manual and the evidence and economic reviews. The aim of these searches was to provide a quantitative measure of the emphasis of the documents on discussion of these subjects. The outcome is reported in Table 1 and the discussion is contained in the next (third) section. Using these searches, an analysis of the discussion on social work, social care, psychosocial issues and social support was then undertaken. The argument of the Manual, followed by selected material in the Evidence and Economic reviews were summarised in turn, in the fourth section of this paper, followed by a discussion section. Conclusions are discussed in the final section.
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Occurrence of terms
The terms ‘social work’, ‘social worker’, ‘social care’, ‘social support’ (a term used in the documents) and ‘psychosocial’ (with and without a hyphen – an omnibus term often used in health care to refer issues that include psychological and social sequelae of health care conditions) and the word ‘social’ were used, then compared with the terms ‘health care’ with and without a hyphen and ‘health’. Professional titles were also searched for: ‘doctor’ and ‘medical’, ‘nurse’ and ‘nursing’ and ‘physiotherapy’. The omnibus term, often used in official documents in the UK in the early part of the 21st century, ‘health and social care’ was also searched for. Table 1 Instances of occurrence of terms in the documents Search terms The Manual Research Evidence Economic Review social work 5 15 1 social worker 5 32 19 social care 136 14 44 social support 24 40 12 social 271 210 107 health and social care 101 9 27 health 379 335 88 health care 72 100 17 healthcare 16 7 15 psychosocial 13 126 0 physiotherapy 4 9 3 nurse or nursing 64 272 81 doctor or medical 42 166 35 This discussion focuses on terms related to social care and social work; other terms have been examined for comparison. ‘Social work’ and ‘social worker’ are not heavily cited in the Manual, but there is a stronger usage in the Research Evidence, drawing on social work literature, and in the Economic Review because there are many references to staff costings. 74.2% of the usages of social care appear in the omnibus term ‘health and social care’ in the Manual, 64% in each of the other documents, so separate discussion of social care as a concept is not a strong feature of the documents. The terms ‘social support’ and ‘psychosocial’ was more often used than ‘social work’ or ‘social care’ in the evidence review; possibly because the healthcare focus of the research leads to an emphasis on the social elements of healthcare, rather than separate professions and services. ‘Social’ and its derivatives are used extensively in the documents, although not as much as ‘health’ and its derivatives; this suggests that social issues are being incorporated in healthcare debate and guidance. Social work and social care receive more mentions than another small profession contributing to palliative care, physiotherapy, and compare well with usage of terms referring to nursing and medicine, perhaps because a healthcare perspective is central to the documents, in view of the responsibilities of its parent body. The occurrence of terms in the documents confirms that, as might be expected, social aspects of health care are important in the NICE Guidance Manual (NICE 2004) and its supporting documents; social factors are not ignored. Social care and social work
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also have a reasonable place. The next two sections examine how social work and social care arise, and how we may evaluate their treatment.
Social work and social care issues in the documents
The Executive Summary of the Manual provides an overview of its content. Of its 15 uses of the word ‘social’, six are of the omnibus term ‘health and social care professionals’, making recommendations that do not differentiate between the two groups. Three are of ‘psychological, social and spiritual care’, again an omnibus for a group of non-medical aspects of care. Six mentions occur in the two paragraphs summarising the ‘social support’ section of the Manual; these emphasise the impact of the social consequences of cancer and the importance of ‘explicit partnerships’ between local health and social care services and ‘the voluntary sector’. Thus, this section, likely to be influential with busy managers and professionals, does not identify or differentiate the particular skills and contribution of social work and social care services and relies on administrative co-ordination as the major thrust of its recommendations. The Manual text prior to Chapter 6 on ‘social support’ contains 67 references to the word ‘social’, mostly omnibus usages of ‘health and social care’ and combinations ‘psychological, social and spiritual’ care. However, a section on specialism notes (NICE 2004a: 22) as an example that local authority social workers are generalists, while hospice social workers are seen as specialist palliative care workers. Social support is recommended as an integral part of palliative care, and social aspects are recommended as important elements of assessment and communication. Social work and social care are included in Chapter 5 on psychological support services. This proposes a 4-level model of role and expertise. At level 1, it recommends that all health and social care professionals should be able to recognise psychological needs. At level 2 such professionals who are ‘designated’ and ‘with additional expertise’ (NICE, 2004a: 78) should be able to screen patients for psychological distress and engage in problem-solving; this include social workers (NICE, 2004: 79). At level 3, ‘trained and accredited professionals’ (NICE 2004: 78) should be able to screen for psychological distress and diagnose some psychopathology, and provide counselling and specific psychological interventions ‘according to an explicit theoretical framework’ (NICE, 2004: 78). This includes ‘… mild to moderate cancer-related concerns such as worries about treatment, personal relationships (including sexual relationships), relationships with hospital staff and spiritual issues.’ (NICE: 2004: 80). All of these areas would be the normal province of social workers, but here are regarded as appropriate only for those with standing as accredited counsellors using explicit frameworks such as anxiety management and solution-focused therapy. Level 4 is reserved to ‘mental health specialists’ and involves diagnosis of psychopathology and interventions such as cognitive-behaviour therapy (NICE: 2000: 78). The American National Association of Social Workers (NASW, 2005) argues that ‘…professional social workers are the [American] nation’s largest group of mental health services providers. There are more clinically trained social workers—over 190,000 in 1998—than psychiatrists, psychologists, and psychiatric nurses combined’. The NICE recommendations on psychological support, if they reflect a broader direction in official thinking on the role of social work, might press the British social work profession to develop a similar argument about its contribution to mental health.
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The evidence summary in the Manual (NICE, 2004: 83-4) acknowledges that there is no evidence for the benefit of the four-level model, although elements of it have achieved research support. The relevant Chapter of the Research Evidence review (Gysels and Higginson, 2004: 115-48) shows that many of the studies provided groupbased psychosocial support, educational and problem-solving approaches by a variety of personnel, including nursing and social work staff. Most results were mixed, and the reviewers conclude: Grade Ia [the best] evidence suggests that psychosocial interventions with cancer patients are important for enhancing coping and life quality for patients with cancer. However, there is a need for caution. Psychotherapeutic interventions are not beneficial per se. Different patient groups with different types or stages of diseases have different needs. Mainly grade Ib [the next best] studies show that individually tailored interventions such as the specialist nursing interventions or an interdisciplinary team seem to have a positive impact on psychological and physical functioning. The assessment of patient’s needs deserves to be stressed in the recommendations. (Gysels and Higginson, 2004: 119). Of the 25 individual studies reviewed, that is not the meta-analyses, five (20%) involved a social worker, eight (32%) by nurses, and three (12%) psychologists or psychiatrists; not all the study summaries indicate the professional identity of the therapist and some of these overlap. However, this shows that the review refers mainly to support designated as psychological, without regard to the profession of the worker, and the research reviewers focus on ‘psychosocial’ is interpreted as psychological, excluding the social. This is an example of how the professional divisions by which the chapters are organised discounts the complexity of the multiprofessional service. The main Chapter focusing on social issues is Chapter 6 on ‘Social Support’. It has central importance for the Manual’s conception of the role and contribution of social work and social care, containing 71 mentions of the word ‘social’, 26.1% of the total in the document, but only one mention each of ‘social work’ and ‘social worker’ in the text; two mentions appear in the citations. Social support is listed as: emotional support; help with personal care, such as bathing and dressing; advice on work and employment issues and assistance with financial support; help inside and outside the home; practical aids; help to care for children and other dependants (NICE, 2004: 86). Social care is described as: practical help; personal care for patients; preservation or enhancement of social networks;
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emotional support; income maintenance; provision of information on local and national resources; access to safe living environments which comply (at least) with minimum standards; provision of respite care (NICE, 2004: 86-7). The Manual recognises (NICE, 2004: 87) that much of this is wholly or partly provided outside the NHS and focuses on collaboration with users, carers, social services and voluntary agencies. It emphasises the local cancer networks as important places for co-ordination and planning, although these rarely include social care agencies. The services needed are listed as: practical support, including personal and domestic care; support to maintain independent living; support to maintain employment status; access to information and assistance in welfare rights; services to assess the needs and protect the rights of vulnerable adults or children of a family member who has cancer, and to support people with cancer in caring for vulnerable adults or children; respite and day care in social and health care settings; care home placements; support for carers, including emotional and practical support. A summary of the evidence (NICE, 2004: 92-3) notes evidence that patients report unmet needs in managing their family lives, emotions and changes in social identity, and the absence of outcome studies assessing service that seek to provide such help. However, there is evidence for the effectiveness of a palliative care multiprofessional team model in providing care, for the presence of a ‘dedicated’ (i.e. specifically allocated) social worker as part of the team in providing emotional support and for the involvement of volunteers. The evidence summary refers to the need to evaluate effective models for providing social care services, particularly barriers to patients accepting use of the services. A summary of resource implications refers to the importance of providing detailed ‘…social care assessments and welfare benefits advice by social workers…’ (NICE, 2004: 93). All this suggests that social workers should be a part of palliative care teams, but does not specifically connect this to the evidence that social issues in patients’ lives are not tackled or point to the need to develop those elements of the social work and social care roles identified that would respond to this need. The two supplementary reviews show where these comments come from. The social support Chapter of the Evidence Review (Gysels and Higginson, 2004: 149-70) contain 40 mentions of the word ‘social’, 19% of the total in the document. The equivalent Chapter in the Economic Review (Ward et al, 2004: 33-7) contains 56 mentions of the word ‘social’, 52% of the total in the document. Most of the studies were about home care services provided primarily by nurses, in which multiprofessional work, with a keyworker for effective information provision to the family, was recommended. However, one study (Allison, et al, 1983) specifically
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examined a social work service, and defined the social worker’s role in palliative care as: identification of problem areas in the patient’s present life situation; sharing relevant information concerning the patient with his family within the limits of confidentiality; liaison with community resources to provide necessary supplies and equipment for home care; assisting the patient in purposeful planning for living; helping the family to deal with disrupted relationships; helping the patient with dysfunctional emotional reactions to illness (Gysels and Higginson, 2004: 150). The Economic Review (Ward et al, 2004) tries to cost the social support that Manual recommends for the population of a typical cancer network with £1.5m population and average needs. There are a number of exclusions. For example, social support straddling local authority social services and the voluntary sector are not costed (Ward et al, 2004: 5), the cost implications for local authorities of better information to patients, identified as ‘potentially substantial’ (Ward et al, 2004: 12), are not calculated, and the recommendation to support user and mutual support groups, said to have typical costs between £10,000 and £60,000 a year (Ward et al, 2004: 15) were also excluded due to lack of information. Social support is costed by examining three elements of the service: the social work element of a specialist palliative care team; providing welfare rights advice; training for other healthcare workers on the social elements of carrying out a front-line assessment. The functions of social workers in palliative care are identified (the document like the Manual does not say where this information comes from, but it does not seem to be the evidence review) as follows: social care assessments; welfare rights advice; bereavement counselling; general counselling; professional psychological assessment, intervention, and support; care of families and children. It is claimed that only social workers can do most social care assessments, and provide welfare rights advice, while other health care professionals might provide some of the rest. Therefore, costs are only assessed for the first two functions. This exclusion means that major functions in relation to family support, said by the evidence to be poorly provided, are not costed, and assumed to come from the general resources for palliative care services. For social work, these are: 0.8 whole-time equivalents per 17 in-patient beds, 1.5 sessions per 20-place palliative day centre, 0.8 whole-time equivalents per million population and 1.6 whole-time equivalents per 300 bereavement service clients. The costing continues by assuming that 50% of specialist palliative care patients will require a social care assessment or welfare rights advice; no source is given for this
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assumption. Five hours is taken as an average time to make an assessment on the advice of a single social care advisor to the team, and the possibility of welfare rights advice is lost at this point of the calculation. An average cancer network will require 4.3 whole-time equivalent social workers to do this number of hours work for the average numbers of patients, and this is costed at a salary in 2001 of £22,557.00. This is probably an inadequate level, taken from an adult services social worker costing by the University of Kent Personal Social Services Research Unit (Ward et al, 2004: 37), since many social workers in specialist palliative care have substantial experience and are paid at local authority principal officer rates. Another element of the costing is the assumption that all healthcare professionals will need to be trained, with the involvement of social care professionals, to make frontline assessments, and costs are allocated for this in the initial training requirements for the implementation of the guidance, but ‘…after completion of training, these assessments will become resource neutral, in the sense that no extra staff will be required and the assessments will become part of normal working practice’ (Ward et al, 2004: 34). The assumption that there will be no ongoing training needs in social care for a healthcare workforce that is constantly changing and inadequate in numbers seems imprudent. There is a separate costing for bereavement services, many of which are part of social work services in specialist palliative care. The costing is neutral about whether the service is provided as part of a social work team or by general bereavement services in the community, but makes provision for organisation, administrative support and, included in the estimate for specialist palliative care reported above, for social workers or others providing bereavement counselling. The costing also notes that some social workers will be proving psychological assessment and care, largely at the lower (non-expert) levels of provision. Chapter 7 of the Manual (NICE, 2004: 95-104) follows that on social support and to some degree interlocks with it. It argues that spiritual issues may arise when emotional and social consequences of cancer have an impact on patients, sees spiritual care as part of a holistic model of care, and family and social support interacting with spiritual care. It uses a four-level model of competence in providing care, similar to that used in the psychological support chapter discussed above, culminating in Level 4 professionals whose primary responsibility is spiritual and religious care. Level 3 staff includes social workers. The two following Manual chapters on general and specialist palliative care include social workers as part of the service and social support and care as crucial to the provision. Most of the references to social care are to omnibus statements, in which social care is included in broader statements about services. Chapter 10 on rehabilitation services refers primarily to allied health professions, and contains only one mention of health and social care professionals. However, among the professionals mentioned are ‘psychosexual counsellors’ and assessment of self-care, coping at home and work and leisure activities is recommended. While these might all be provided as part of a social work service, the healthcare focus of the Manual leaves this possibility unacknowledged. Again, a four-level model of competence is described; referring on this occasion to allied health professionals. Chapter 11 is about complementary therapies.
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Chapter 12 covers services for families and carers and bereavement services, and contains 21 mentions of the word ‘social’. Most of these are again to the omnibus phrases including social care. The Carers (Recognition and Services) Act 1995 is mentioned alongside guidance to ensure that a separate carers’ assessment is obtained. Health and social care professionals ‘providing day-to-day care to patients’ (NICE, 2004: 159) should also address the needs of family members and carers, although the evidence summary says that carers ‘…report high satisfaction with…[home care services]… in helping them to look after patients, but they do not meet many of the carers’ own needs’. (NICE, 2004: 163). Bereavement services are analysed according to a three-component model, the first component being informal care and the second component volunteer and community groups. The third component of ‘specialist interventions (NICE, 2004: 161) refers to mental health, psychological support, counselling/psychotherapy, specialist palliative care and general bereavement services, does not mention social work or social care services. Providing separate assessments for carers, addressing the needs of families and providing bereavements support are all areas that might be regarded as central to a conception of social work in palliative care, yet there is no differentiation of social work or social care from other health care services in this Chapter of the Manual. Chapter 13 reviews directions for future research, and recommends a focus on outcome and effectiveness studies, rather than continued examination of needs. It proposes that studies of effectiveness should make clear the configuration of services assessed. It does not separately deal with social care, treating it as ‘health and social care’.
Discussion
The aim of this paper has been to analyse an authoritative specialist NHS document giving professional guidance on palliative care for cancer patients, an area recognised to have profound social implications. The purpose of doing so is to identify evidence for trends in thinking about the relationship of health and social care and consider possible consequences for the role of social work as part of palliative care. Extending from that, the analysis shows the consequences for social work, viewed as a professional discipline and workforce, of such trends in thinking and analysis of healthcare work. The method of analysis started with a search for particular terms to indicate quantitatively the importance given in them to social concerns, using occurrences of the word ‘social’ as a proxy for the importance given to overall social issues and professional terms to identify the coverage of social work, and, as comparators, healthcare, nursing, medicine and physiotherapy. This method may be limited, if social issues were identified by other terms, but the electronic searches produced outcomes that identified chapters focused on social issues and other appearances in the text, which seem intuitively reasonable. A close reading of the texts did not disclose other major social issues dealt with elsewhere, although a link is often not made to issues where social work and social care services might be relevant. This suggests that healthcare thinking may fail to identify social work and social care contributions explicitly, while not being hostile. A summary of areas of the texts in the documents referring to social issues, and in particular to social support, was used to identify their argument on social issues and its basis.
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The occurrence analysis showed that the impact of social issues, social care and social support were important in the discussion and recommendations. However, ‘social care’ and ‘social support’ were often referred to as part of omnibus terms. Thus, no clear differentiation of social care services or social work was made. This suggests that there may be a risk of token inclusion of social care and social issues, without a full examination of their particular role and needs. Moreover, NICE’s responsibilities makes healthcare the starting point of the documents, a healthcare perspective may colour the way social issues are presented. For example, it may not identify social issues that are the consequence of healthcare priorities. This can be seen in the Executive Summary, which brings together complex commentary on social support in a single recommendation for co-ordination between healthcare and social care agencies. Similarly, social issues are often presented as an impact or consequence of ill-health, rather than a target for consideration and intervention in their own right. The Chapter on families and carers, for example, notes the evidence that palliative home care services provide good care for patients, but not for their carers, but recommends a continuation of responsibility for both, offering no robust guidance on the need for separate assessment of and support for carers. This Chapter, unlike the rest of the guidance, relies strongly on mutual support and volunteer work for the primary provision of services. Throughout, emotional, psychological and social support are seen as adjuncts to the main focus of the service, provided by all professionals in many cases, with a hierarchy of specialisation that offers fully trained and experienced professionals only at the apex of need. The Chapter on social support, on the other hand, does not explore how different levels of support are to be provided, and the Economic Review restricts its costing of the service that social workers should provide to a small proportion of its list of services, leaving the rest, despite evidence that specifically social needs are not being met, to provision by any health and social care professionals. This is a likely recipe for ignoring social needs: anybody’s responsibility is often nobody’s responsibility. Emotional care and care in the home is rightly noted as a component of several professionals’ responsibility, for example as an important element of rehabilitation work. However, this reflects an institutionalised focus on considering the complexity of the role of healthcare professionals, without a similar differentiation of the role of social care professionals. Although it refers to palliative care as a holistic service, the document divides up the service into domains that reflect particular professional or service interests. Thus, the topic areas refer to some general issues, such as co-ordination of care, user involvement, face-to-face communication and information provision, but most of the chapters are proxies for professional interests: psychological support (psychology/psychiatry), social support (social work), spiritual support (chaplains), general palliative care (primary care), specialist palliative care (hospices and specialist palliative care teams), rehabilitation (allied health professionals, especially physiotherapists), complementary therapy, services for families and carers, including bereavement services (voluntary sector and carer support agencies). While overlaps and interlocking provision is acknowledged, the consequence is divided presentation of palliative care that neither reflects the intention of the guidance to achieve a holistic service, nor the evidence and costings, which reflect a much more integrated picture.
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A good example of the consequences of this arises in the multiple levels of competence and professional contribution presented in psychological and spiritual care, and the components of family, carer and bereavement care. In each case, the assumption is that most health and social care professionals or services will be able to identify problems, more competent professionals be able to make simpler interventions, but that more complex interventions may be undertaken by the most highly qualified and accredited professionals, who will assess and deal with only the most complex situations. Moreover, it is acknowledged that there is no research evidence for this four-level differentiation in the case of psychological care, and examination of the research into ‘psychosocial care’, which underlies the evidence of effectiveness shows that nurses, social workers and a range of professionals and volunteers provided information, problem-solving and educational interventions, and in some cases psychology professionals used formal interventions. The ‘social’ has been removed from an analysis that focuses on the psychological, while the psychological is removed from the discussion in the Chapter on social support. The picture in the research is of a gradient or range of provisions, rather than the guidance manual’s recommendation of a service based on professional and status divisions. Consequently, a more realistic recommendation might be multiprofessional consultation, peer support and supervision among professionals and shared work, rather than a hierarchical and professional division. This division of the guidance into professional and service interests for purposes of analysis does not reflect either user requirements and service provision or the research finding of the importance and effectiveness of multiprofessional work. Another consequence of this division of complex services into professional elements comes out in the treatment of social support in the Economic Review (Ward et al, 2004), where there are overlapping elements of psychological, family and bereavement and social care that are hard to disentangle. The costing work also illustrates how the availability of such ‘best-available’ analyses may mislead policy and service development. Substantial elements of provision are excluded from the costing study, which appears to be based on minimal evidence, while assumptions about the complexities of providing a service are acknowledged only in the detail of the text. Consequently, managers looking at the overall costing at a global level might easily make inadequate financial provision. The NICE palliative care guidance thus acknowledges but does not integrate important psychological and social elements, and at the same time its healthcare focus does not differentiate the requirements of social work and social care. Different accounts are given, without sources, in the Manual and the Economic Review of the content of social care services, and one of few studies to outline the actual role of social work in a service, discussed in the Research Evidence, is not picked up. Consequently, the particular service, knowledge and skill development requirements for a palliative care social work service are not authoritatively set out because the focus is on the elements of a total palliative care service, irrespective of the professional groups providing it. The same also applies to psychology and spiritual care. The paradox is that the potential roles of social work and social care, within palliative care services as a whole, are not identified at the same time as the disaggregation of the elements of the service also makes it hard to see it as a whole.
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Conclusion
In summary, the NICE guidance on palliative care provides a useful case study of the way in which social care has been treated in a health care specialty where the social impact of illness is crucial. Social issues are appropriately included. However, the assumptive world of the documents make healthcare its starting point and social care and social support are often aggregated with aspects of service outside the main focus, especially with psychological care. This aggregation makes it difficult to disentangle and give priority to specifically social, social care and social work issues within service organisation and costing work. On the other hand, a focus in the guidance on specific elements of the overall service does not show how a holistic service might be achieved through multiprofessional integration and tends to create recommendations divided along professional and status lines. How could social care and social work organisations respond to this? One way, demonstrated by the American national social workers’ organisation in mental health, is to identify and promote the greater understanding of role of social work in different services. For example in palliative care, it should be possible to achieve greater awareness of the role of social work in psychological care, for which there is clear evidence. On the other hand, the only valid service for most users is a multiprofessional one, so it is also important for the social work profession to identify the elements of social provision in specialist areas of provision, such as palliative care, and how it may be integrated effectively into multiprofessional care.
Acknowledgement
Some parts of this paper are based on the Frederic Seebohm Memorial Lecture, given by the author in November 2004 at the University of Southampton, and a paper for the South-West London Palliative Care Guidance Implementation Group.
Bibliography
Allison, H., Gripton, J., and Rodway, M. (1983) Social work services as a component of palliative care with terminal cancer patients. Social Work in Health Care 8(1): 29-44. Gysels, M. and Higginson, I. J. (2004) Improving supportive and palliative care for adults with cancer: Research Evidence, London: National Institute for Clinical Excellence. NASW (2005) The Social Work Profession, http://www.socialworkers.org/pressroom/features/general/prof ession.asp NICE (2004) Improving Supportive and Palliative Care for Adults with Cancer: The Manual, London: National Institute for Clinical Excellence. NICE (2005) Welcome to the National Institute for Health and Clinical Excellence, http://www.nice.org.uk/ (accessed: 12th July 2005).
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Saunders, C. (2001) Social work and palliative care: the early history’, British Journal of Social Work, 31(5): 791-9. Ward, S., Salzano, S., Sampson, F. and Cowan, J. (2004) Improving Supportive and Palliative Care for Adults with Cancer: Economic Review, London: National Institute for Clinical Excellence.
Social work and the NICE Guidance on palliative care
Abstract
The guidance published by the UK National Institute for Clinical Excellence (NICE) on improving palliative and supportive care for adults with cancer is analysed, as a case study of the treatment of social work, social care and social issues from the perspective of a healthcare organisation, in the context of the incorporation of social care into healthcare provision in the UK. A quantitative analysis of word occurrences demonstrates inclusion of social issues, but an aggregation of social care with health care and of social support with psychological, spiritual and other forms of nonmedical provision. Examination of the guidance Manual and its supporting Evidence and Economic reviews discloses coverage but limited articulation of social work and social care roles, while use within the documents of several professional and status distinctions make it hard to understand the integration of service as multiprofessional and holistic. Professional social work bodies and social workers need to identify and promote the particular contribution of social work and social care, while also showing how these are integrated into a multiprofessional service.
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Social work and the NICE Guidance on palliative care
Malcolm Payne, Director, Psycho-social and Spiritual Care, St. Christopher’s Hospice, 51-59 Lawrie Park Road, Sydenham, London SE26 6DZ Email: [email protected] Telephone +44 208768 4500
Introduction: the NICE Guidance on palliative care
In 2004, the UK National Institute for Clinical Excellence (NICE; now merged to form the National Institute for Health and Clinical Excellence), published guidance on ‘improving supportive and palliative care for adults with cancer’ (NICE, 2004). It was intended to ‘define the service models needed to ensure that patients with cancer, their families and others carers receive support to help with cancer and its treatment’ (NICE 2004: 15). NICE is ‘the independent organisation responsible for providing national guidance on the promotion of good health and the prevention and treatment of ill health’ (NICE, 2005). Its guidance is regarded as an authoritative standard for UK National Health Service (NHS) provision, and is intended to assist NHS commissioners and service providers plan through local partnerships the services in their area. It was produced by a working party, after extensive consultations with organisations and professions represented in the field. The Guidance Manual is supplemented by two documents: a literature review, the Research Evidence (Gysels and Higginson, 2004) and an Economic Review (Ward et al., 2004), which costed the implementation of the Guidance. Thus, the Guidance represents an authoritative research-based and costed model of health and social care provision in an important specialty relevant to social work and social care. The aim of this paper is to examine critically the treatment of social work in the NICE Guidance on palliative care, as a case study of social work’s treatment in a researchbased healthcare policy and practice document in a multiprofessional specialty. The analysis offers an indication of how social work stands in the context of UK official policy-making, and how professions such as social work are affected by the use of research evidence in health care decision-making. This is important, because government policy is to incorporate social work into major public services such as the NHS and education. Palliative care is a positive service context for incorporating social work because of its multiprofessional ethos, whose conception explicitly requires social work participation (Saunders, 2001), this paper asks how the authoritative professional and service guidance incorporates social work into palliative care.
Method
A search for a number of relevant terms was carried out on the main guidance document, the manual and the evidence and economic reviews. The aim of these searches was to provide a quantitative measure of the emphasis of the documents on discussion of these subjects. The outcome is reported in Table 1 and the discussion is contained in the next (third) section. Using these searches, an analysis of the discussion on social work, social care, psychosocial issues and social support was then undertaken. The argument of the Manual, followed by selected material in the Evidence and Economic reviews were summarised in turn, in the fourth section of this paper, followed by a discussion section. Conclusions are discussed in the final section.
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Occurrence of terms
The terms ‘social work’, ‘social worker’, ‘social care’, ‘social support’ (a term used in the documents) and ‘psychosocial’ (with and without a hyphen – an omnibus term often used in health care to refer issues that include psychological and social sequelae of health care conditions) and the word ‘social’ were used, then compared with the terms ‘health care’ with and without a hyphen and ‘health’. Professional titles were also searched for: ‘doctor’ and ‘medical’, ‘nurse’ and ‘nursing’ and ‘physiotherapy’. The omnibus term, often used in official documents in the UK in the early part of the 21st century, ‘health and social care’ was also searched for. Table 1 Instances of occurrence of terms in the documents Search terms The Manual Research Evidence Economic Review social work 5 15 1 social worker 5 32 19 social care 136 14 44 social support 24 40 12 social 271 210 107 health and social care 101 9 27 health 379 335 88 health care 72 100 17 healthcare 16 7 15 psychosocial 13 126 0 physiotherapy 4 9 3 nurse or nursing 64 272 81 doctor or medical 42 166 35 This discussion focuses on terms related to social care and social work; other terms have been examined for comparison. ‘Social work’ and ‘social worker’ are not heavily cited in the Manual, but there is a stronger usage in the Research Evidence, drawing on social work literature, and in the Economic Review because there are many references to staff costings. 74.2% of the usages of social care appear in the omnibus term ‘health and social care’ in the Manual, 64% in each of the other documents, so separate discussion of social care as a concept is not a strong feature of the documents. The terms ‘social support’ and ‘psychosocial’ was more often used than ‘social work’ or ‘social care’ in the evidence review; possibly because the healthcare focus of the research leads to an emphasis on the social elements of healthcare, rather than separate professions and services. ‘Social’ and its derivatives are used extensively in the documents, although not as much as ‘health’ and its derivatives; this suggests that social issues are being incorporated in healthcare debate and guidance. Social work and social care receive more mentions than another small profession contributing to palliative care, physiotherapy, and compare well with usage of terms referring to nursing and medicine, perhaps because a healthcare perspective is central to the documents, in view of the responsibilities of its parent body. The occurrence of terms in the documents confirms that, as might be expected, social aspects of health care are important in the NICE Guidance Manual (NICE 2004) and its supporting documents; social factors are not ignored. Social care and social work
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also have a reasonable place. The next two sections examine how social work and social care arise, and how we may evaluate their treatment.
Social work and social care issues in the documents
The Executive Summary of the Manual provides an overview of its content. Of its 15 uses of the word ‘social’, six are of the omnibus term ‘health and social care professionals’, making recommendations that do not differentiate between the two groups. Three are of ‘psychological, social and spiritual care’, again an omnibus for a group of non-medical aspects of care. Six mentions occur in the two paragraphs summarising the ‘social support’ section of the Manual; these emphasise the impact of the social consequences of cancer and the importance of ‘explicit partnerships’ between local health and social care services and ‘the voluntary sector’. Thus, this section, likely to be influential with busy managers and professionals, does not identify or differentiate the particular skills and contribution of social work and social care services and relies on administrative co-ordination as the major thrust of its recommendations. The Manual text prior to Chapter 6 on ‘social support’ contains 67 references to the word ‘social’, mostly omnibus usages of ‘health and social care’ and combinations ‘psychological, social and spiritual’ care. However, a section on specialism notes (NICE 2004a: 22) as an example that local authority social workers are generalists, while hospice social workers are seen as specialist palliative care workers. Social support is recommended as an integral part of palliative care, and social aspects are recommended as important elements of assessment and communication. Social work and social care are included in Chapter 5 on psychological support services. This proposes a 4-level model of role and expertise. At level 1, it recommends that all health and social care professionals should be able to recognise psychological needs. At level 2 such professionals who are ‘designated’ and ‘with additional expertise’ (NICE, 2004a: 78) should be able to screen patients for psychological distress and engage in problem-solving; this include social workers (NICE, 2004: 79). At level 3, ‘trained and accredited professionals’ (NICE 2004: 78) should be able to screen for psychological distress and diagnose some psychopathology, and provide counselling and specific psychological interventions ‘according to an explicit theoretical framework’ (NICE, 2004: 78). This includes ‘… mild to moderate cancer-related concerns such as worries about treatment, personal relationships (including sexual relationships), relationships with hospital staff and spiritual issues.’ (NICE: 2004: 80). All of these areas would be the normal province of social workers, but here are regarded as appropriate only for those with standing as accredited counsellors using explicit frameworks such as anxiety management and solution-focused therapy. Level 4 is reserved to ‘mental health specialists’ and involves diagnosis of psychopathology and interventions such as cognitive-behaviour therapy (NICE: 2000: 78). The American National Association of Social Workers (NASW, 2005) argues that ‘…professional social workers are the [American] nation’s largest group of mental health services providers. There are more clinically trained social workers—over 190,000 in 1998—than psychiatrists, psychologists, and psychiatric nurses combined’. The NICE recommendations on psychological support, if they reflect a broader direction in official thinking on the role of social work, might press the British social work profession to develop a similar argument about its contribution to mental health.
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The evidence summary in the Manual (NICE, 2004: 83-4) acknowledges that there is no evidence for the benefit of the four-level model, although elements of it have achieved research support. The relevant Chapter of the Research Evidence review (Gysels and Higginson, 2004: 115-48) shows that many of the studies provided groupbased psychosocial support, educational and problem-solving approaches by a variety of personnel, including nursing and social work staff. Most results were mixed, and the reviewers conclude: Grade Ia [the best] evidence suggests that psychosocial interventions with cancer patients are important for enhancing coping and life quality for patients with cancer. However, there is a need for caution. Psychotherapeutic interventions are not beneficial per se. Different patient groups with different types or stages of diseases have different needs. Mainly grade Ib [the next best] studies show that individually tailored interventions such as the specialist nursing interventions or an interdisciplinary team seem to have a positive impact on psychological and physical functioning. The assessment of patient’s needs deserves to be stressed in the recommendations. (Gysels and Higginson, 2004: 119). Of the 25 individual studies reviewed, that is not the meta-analyses, five (20%) involved a social worker, eight (32%) by nurses, and three (12%) psychologists or psychiatrists; not all the study summaries indicate the professional identity of the therapist and some of these overlap. However, this shows that the review refers mainly to support designated as psychological, without regard to the profession of the worker, and the research reviewers focus on ‘psychosocial’ is interpreted as psychological, excluding the social. This is an example of how the professional divisions by which the chapters are organised discounts the complexity of the multiprofessional service. The main Chapter focusing on social issues is Chapter 6 on ‘Social Support’. It has central importance for the Manual’s conception of the role and contribution of social work and social care, containing 71 mentions of the word ‘social’, 26.1% of the total in the document, but only one mention each of ‘social work’ and ‘social worker’ in the text; two mentions appear in the citations. Social support is listed as: emotional support; help with personal care, such as bathing and dressing; advice on work and employment issues and assistance with financial support; help inside and outside the home; practical aids; help to care for children and other dependants (NICE, 2004: 86). Social care is described as: practical help; personal care for patients; preservation or enhancement of social networks;
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emotional support; income maintenance; provision of information on local and national resources; access to safe living environments which comply (at least) with minimum standards; provision of respite care (NICE, 2004: 86-7). The Manual recognises (NICE, 2004: 87) that much of this is wholly or partly provided outside the NHS and focuses on collaboration with users, carers, social services and voluntary agencies. It emphasises the local cancer networks as important places for co-ordination and planning, although these rarely include social care agencies. The services needed are listed as: practical support, including personal and domestic care; support to maintain independent living; support to maintain employment status; access to information and assistance in welfare rights; services to assess the needs and protect the rights of vulnerable adults or children of a family member who has cancer, and to support people with cancer in caring for vulnerable adults or children; respite and day care in social and health care settings; care home placements; support for carers, including emotional and practical support. A summary of the evidence (NICE, 2004: 92-3) notes evidence that patients report unmet needs in managing their family lives, emotions and changes in social identity, and the absence of outcome studies assessing service that seek to provide such help. However, there is evidence for the effectiveness of a palliative care multiprofessional team model in providing care, for the presence of a ‘dedicated’ (i.e. specifically allocated) social worker as part of the team in providing emotional support and for the involvement of volunteers. The evidence summary refers to the need to evaluate effective models for providing social care services, particularly barriers to patients accepting use of the services. A summary of resource implications refers to the importance of providing detailed ‘…social care assessments and welfare benefits advice by social workers…’ (NICE, 2004: 93). All this suggests that social workers should be a part of palliative care teams, but does not specifically connect this to the evidence that social issues in patients’ lives are not tackled or point to the need to develop those elements of the social work and social care roles identified that would respond to this need. The two supplementary reviews show where these comments come from. The social support Chapter of the Evidence Review (Gysels and Higginson, 2004: 149-70) contain 40 mentions of the word ‘social’, 19% of the total in the document. The equivalent Chapter in the Economic Review (Ward et al, 2004: 33-7) contains 56 mentions of the word ‘social’, 52% of the total in the document. Most of the studies were about home care services provided primarily by nurses, in which multiprofessional work, with a keyworker for effective information provision to the family, was recommended. However, one study (Allison, et al, 1983) specifically
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examined a social work service, and defined the social worker’s role in palliative care as: identification of problem areas in the patient’s present life situation; sharing relevant information concerning the patient with his family within the limits of confidentiality; liaison with community resources to provide necessary supplies and equipment for home care; assisting the patient in purposeful planning for living; helping the family to deal with disrupted relationships; helping the patient with dysfunctional emotional reactions to illness (Gysels and Higginson, 2004: 150). The Economic Review (Ward et al, 2004) tries to cost the social support that Manual recommends for the population of a typical cancer network with £1.5m population and average needs. There are a number of exclusions. For example, social support straddling local authority social services and the voluntary sector are not costed (Ward et al, 2004: 5), the cost implications for local authorities of better information to patients, identified as ‘potentially substantial’ (Ward et al, 2004: 12), are not calculated, and the recommendation to support user and mutual support groups, said to have typical costs between £10,000 and £60,000 a year (Ward et al, 2004: 15) were also excluded due to lack of information. Social support is costed by examining three elements of the service: the social work element of a specialist palliative care team; providing welfare rights advice; training for other healthcare workers on the social elements of carrying out a front-line assessment. The functions of social workers in palliative care are identified (the document like the Manual does not say where this information comes from, but it does not seem to be the evidence review) as follows: social care assessments; welfare rights advice; bereavement counselling; general counselling; professional psychological assessment, intervention, and support; care of families and children. It is claimed that only social workers can do most social care assessments, and provide welfare rights advice, while other health care professionals might provide some of the rest. Therefore, costs are only assessed for the first two functions. This exclusion means that major functions in relation to family support, said by the evidence to be poorly provided, are not costed, and assumed to come from the general resources for palliative care services. For social work, these are: 0.8 whole-time equivalents per 17 in-patient beds, 1.5 sessions per 20-place palliative day centre, 0.8 whole-time equivalents per million population and 1.6 whole-time equivalents per 300 bereavement service clients. The costing continues by assuming that 50% of specialist palliative care patients will require a social care assessment or welfare rights advice; no source is given for this
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assumption. Five hours is taken as an average time to make an assessment on the advice of a single social care advisor to the team, and the possibility of welfare rights advice is lost at this point of the calculation. An average cancer network will require 4.3 whole-time equivalent social workers to do this number of hours work for the average numbers of patients, and this is costed at a salary in 2001 of £22,557.00. This is probably an inadequate level, taken from an adult services social worker costing by the University of Kent Personal Social Services Research Unit (Ward et al, 2004: 37), since many social workers in specialist palliative care have substantial experience and are paid at local authority principal officer rates. Another element of the costing is the assumption that all healthcare professionals will need to be trained, with the involvement of social care professionals, to make frontline assessments, and costs are allocated for this in the initial training requirements for the implementation of the guidance, but ‘…after completion of training, these assessments will become resource neutral, in the sense that no extra staff will be required and the assessments will become part of normal working practice’ (Ward et al, 2004: 34). The assumption that there will be no ongoing training needs in social care for a healthcare workforce that is constantly changing and inadequate in numbers seems imprudent. There is a separate costing for bereavement services, many of which are part of social work services in specialist palliative care. The costing is neutral about whether the service is provided as part of a social work team or by general bereavement services in the community, but makes provision for organisation, administrative support and, included in the estimate for specialist palliative care reported above, for social workers or others providing bereavement counselling. The costing also notes that some social workers will be proving psychological assessment and care, largely at the lower (non-expert) levels of provision. Chapter 7 of the Manual (NICE, 2004: 95-104) follows that on social support and to some degree interlocks with it. It argues that spiritual issues may arise when emotional and social consequences of cancer have an impact on patients, sees spiritual care as part of a holistic model of care, and family and social support interacting with spiritual care. It uses a four-level model of competence in providing care, similar to that used in the psychological support chapter discussed above, culminating in Level 4 professionals whose primary responsibility is spiritual and religious care. Level 3 staff includes social workers. The two following Manual chapters on general and specialist palliative care include social workers as part of the service and social support and care as crucial to the provision. Most of the references to social care are to omnibus statements, in which social care is included in broader statements about services. Chapter 10 on rehabilitation services refers primarily to allied health professions, and contains only one mention of health and social care professionals. However, among the professionals mentioned are ‘psychosexual counsellors’ and assessment of self-care, coping at home and work and leisure activities is recommended. While these might all be provided as part of a social work service, the healthcare focus of the Manual leaves this possibility unacknowledged. Again, a four-level model of competence is described; referring on this occasion to allied health professionals. Chapter 11 is about complementary therapies.
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Chapter 12 covers services for families and carers and bereavement services, and contains 21 mentions of the word ‘social’. Most of these are again to the omnibus phrases including social care. The Carers (Recognition and Services) Act 1995 is mentioned alongside guidance to ensure that a separate carers’ assessment is obtained. Health and social care professionals ‘providing day-to-day care to patients’ (NICE, 2004: 159) should also address the needs of family members and carers, although the evidence summary says that carers ‘…report high satisfaction with…[home care services]… in helping them to look after patients, but they do not meet many of the carers’ own needs’. (NICE, 2004: 163). Bereavement services are analysed according to a three-component model, the first component being informal care and the second component volunteer and community groups. The third component of ‘specialist interventions (NICE, 2004: 161) refers to mental health, psychological support, counselling/psychotherapy, specialist palliative care and general bereavement services, does not mention social work or social care services. Providing separate assessments for carers, addressing the needs of families and providing bereavements support are all areas that might be regarded as central to a conception of social work in palliative care, yet there is no differentiation of social work or social care from other health care services in this Chapter of the Manual. Chapter 13 reviews directions for future research, and recommends a focus on outcome and effectiveness studies, rather than continued examination of needs. It proposes that studies of effectiveness should make clear the configuration of services assessed. It does not separately deal with social care, treating it as ‘health and social care’.
Discussion
The aim of this paper has been to analyse an authoritative specialist NHS document giving professional guidance on palliative care for cancer patients, an area recognised to have profound social implications. The purpose of doing so is to identify evidence for trends in thinking about the relationship of health and social care and consider possible consequences for the role of social work as part of palliative care. Extending from that, the analysis shows the consequences for social work, viewed as a professional discipline and workforce, of such trends in thinking and analysis of healthcare work. The method of analysis started with a search for particular terms to indicate quantitatively the importance given in them to social concerns, using occurrences of the word ‘social’ as a proxy for the importance given to overall social issues and professional terms to identify the coverage of social work, and, as comparators, healthcare, nursing, medicine and physiotherapy. This method may be limited, if social issues were identified by other terms, but the electronic searches produced outcomes that identified chapters focused on social issues and other appearances in the text, which seem intuitively reasonable. A close reading of the texts did not disclose other major social issues dealt with elsewhere, although a link is often not made to issues where social work and social care services might be relevant. This suggests that healthcare thinking may fail to identify social work and social care contributions explicitly, while not being hostile. A summary of areas of the texts in the documents referring to social issues, and in particular to social support, was used to identify their argument on social issues and its basis.
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The occurrence analysis showed that the impact of social issues, social care and social support were important in the discussion and recommendations. However, ‘social care’ and ‘social support’ were often referred to as part of omnibus terms. Thus, no clear differentiation of social care services or social work was made. This suggests that there may be a risk of token inclusion of social care and social issues, without a full examination of their particular role and needs. Moreover, NICE’s responsibilities makes healthcare the starting point of the documents, a healthcare perspective may colour the way social issues are presented. For example, it may not identify social issues that are the consequence of healthcare priorities. This can be seen in the Executive Summary, which brings together complex commentary on social support in a single recommendation for co-ordination between healthcare and social care agencies. Similarly, social issues are often presented as an impact or consequence of ill-health, rather than a target for consideration and intervention in their own right. The Chapter on families and carers, for example, notes the evidence that palliative home care services provide good care for patients, but not for their carers, but recommends a continuation of responsibility for both, offering no robust guidance on the need for separate assessment of and support for carers. This Chapter, unlike the rest of the guidance, relies strongly on mutual support and volunteer work for the primary provision of services. Throughout, emotional, psychological and social support are seen as adjuncts to the main focus of the service, provided by all professionals in many cases, with a hierarchy of specialisation that offers fully trained and experienced professionals only at the apex of need. The Chapter on social support, on the other hand, does not explore how different levels of support are to be provided, and the Economic Review restricts its costing of the service that social workers should provide to a small proportion of its list of services, leaving the rest, despite evidence that specifically social needs are not being met, to provision by any health and social care professionals. This is a likely recipe for ignoring social needs: anybody’s responsibility is often nobody’s responsibility. Emotional care and care in the home is rightly noted as a component of several professionals’ responsibility, for example as an important element of rehabilitation work. However, this reflects an institutionalised focus on considering the complexity of the role of healthcare professionals, without a similar differentiation of the role of social care professionals. Although it refers to palliative care as a holistic service, the document divides up the service into domains that reflect particular professional or service interests. Thus, the topic areas refer to some general issues, such as co-ordination of care, user involvement, face-to-face communication and information provision, but most of the chapters are proxies for professional interests: psychological support (psychology/psychiatry), social support (social work), spiritual support (chaplains), general palliative care (primary care), specialist palliative care (hospices and specialist palliative care teams), rehabilitation (allied health professionals, especially physiotherapists), complementary therapy, services for families and carers, including bereavement services (voluntary sector and carer support agencies). While overlaps and interlocking provision is acknowledged, the consequence is divided presentation of palliative care that neither reflects the intention of the guidance to achieve a holistic service, nor the evidence and costings, which reflect a much more integrated picture.
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A good example of the consequences of this arises in the multiple levels of competence and professional contribution presented in psychological and spiritual care, and the components of family, carer and bereavement care. In each case, the assumption is that most health and social care professionals or services will be able to identify problems, more competent professionals be able to make simpler interventions, but that more complex interventions may be undertaken by the most highly qualified and accredited professionals, who will assess and deal with only the most complex situations. Moreover, it is acknowledged that there is no research evidence for this four-level differentiation in the case of psychological care, and examination of the research into ‘psychosocial care’, which underlies the evidence of effectiveness shows that nurses, social workers and a range of professionals and volunteers provided information, problem-solving and educational interventions, and in some cases psychology professionals used formal interventions. The ‘social’ has been removed from an analysis that focuses on the psychological, while the psychological is removed from the discussion in the Chapter on social support. The picture in the research is of a gradient or range of provisions, rather than the guidance manual’s recommendation of a service based on professional and status divisions. Consequently, a more realistic recommendation might be multiprofessional consultation, peer support and supervision among professionals and shared work, rather than a hierarchical and professional division. This division of the guidance into professional and service interests for purposes of analysis does not reflect either user requirements and service provision or the research finding of the importance and effectiveness of multiprofessional work. Another consequence of this division of complex services into professional elements comes out in the treatment of social support in the Economic Review (Ward et al, 2004), where there are overlapping elements of psychological, family and bereavement and social care that are hard to disentangle. The costing work also illustrates how the availability of such ‘best-available’ analyses may mislead policy and service development. Substantial elements of provision are excluded from the costing study, which appears to be based on minimal evidence, while assumptions about the complexities of providing a service are acknowledged only in the detail of the text. Consequently, managers looking at the overall costing at a global level might easily make inadequate financial provision. The NICE palliative care guidance thus acknowledges but does not integrate important psychological and social elements, and at the same time its healthcare focus does not differentiate the requirements of social work and social care. Different accounts are given, without sources, in the Manual and the Economic Review of the content of social care services, and one of few studies to outline the actual role of social work in a service, discussed in the Research Evidence, is not picked up. Consequently, the particular service, knowledge and skill development requirements for a palliative care social work service are not authoritatively set out because the focus is on the elements of a total palliative care service, irrespective of the professional groups providing it. The same also applies to psychology and spiritual care. The paradox is that the potential roles of social work and social care, within palliative care services as a whole, are not identified at the same time as the disaggregation of the elements of the service also makes it hard to see it as a whole.
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Conclusion
In summary, the NICE guidance on palliative care provides a useful case study of the way in which social care has been treated in a health care specialty where the social impact of illness is crucial. Social issues are appropriately included. However, the assumptive world of the documents make healthcare its starting point and social care and social support are often aggregated with aspects of service outside the main focus, especially with psychological care. This aggregation makes it difficult to disentangle and give priority to specifically social, social care and social work issues within service organisation and costing work. On the other hand, a focus in the guidance on specific elements of the overall service does not show how a holistic service might be achieved through multiprofessional integration and tends to create recommendations divided along professional and status lines. How could social care and social work organisations respond to this? One way, demonstrated by the American national social workers’ organisation in mental health, is to identify and promote the greater understanding of role of social work in different services. For example in palliative care, it should be possible to achieve greater awareness of the role of social work in psychological care, for which there is clear evidence. On the other hand, the only valid service for most users is a multiprofessional one, so it is also important for the social work profession to identify the elements of social provision in specialist areas of provision, such as palliative care, and how it may be integrated effectively into multiprofessional care.
Acknowledgement
Some parts of this paper are based on the Frederic Seebohm Memorial Lecture, given by the author in November 2004 at the University of Southampton, and a paper for the South-West London Palliative Care Guidance Implementation Group.
Bibliography
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