Interprofessional working in palliative care in the community: a review ...

JOURNAL OF INTERPROFESSIONAL CARE, VOL. 14, NO. 3, 2000

Interprofessional working in palliative care in the community: a review of the literature JULIE BLISS, SARAH COWLEY & ALISON WHILE Florence Nightingale School of Nursing & Midwifery, King’s College, London, UK

Summary In the United Kingdom (UK) a range of professionals, who are employed within both statutory and non-statutory organisations, provide palliative care in the community. This paper explores how interprofessional working between these practitioners is facilitated, and considers how language and philosophies of care can impact upon the working relationship between professionals. It is suggested that often the dif® culties experienced when working with another professional are outside the remit of the individuals involved. When working within large organisations within a legislative framework practitioners must be prepared to acknowledge the strengths of different groups, and to understand how these can be utilised to provide effective and appropriate palliative care. Key words: Palliative care, interprofessional working, inter-agency working, organisational impact.

Background to the literature review Research undertaken with district nurses and social workers (Bliss, 1998), and district nurses, social workers and home carers in the UK (Newall & Matthew, 1997) both identi® ed confusion regarding the skills and knowledge of different professions in relation to palliative care provision. The provision of a quality and effective palliative care service in the community is crucial. Four-® fths of people receiving palliative care spend the majority of their ® nal year of life at home (Higginson, 1993). This is supported by Seale & Cartwright (1994) and Field (1996) who reported that, whilst the minority of deaths occur at home, most of the process of dying takes place at home. Recent research has identi® ed a lack of clarity in relation to roles in palliative care. One social worker expressed confusion regarding the role of the district nurse and the Macmillan nurse, whilst district nurses appeared unclear about the contribution that social workers can make in the area of palliative care (Bliss, 1998). This paper will address the issues involved for health and social care professionals who are involved in interprofessional working as a means to provide palliative care. It begins by exploring what is meant by palliative care by the different stakeholders within palliative care provision. Throughout the paper the issue of specialist palliative care services versus general services will be discussed with particular attention to the impact of different organisational Correspondence to: Julie Bliss, Florence Nightingale School of Nursing & Midwifery, King’ s College London, James Clerk Maxwell Building, 57 Waterloo Road, London SE1 8WA, UK. Tel: 0207 848 3211. Fax: 0207 848 3219. E-mail: [email protected] ISSN 1356± 1820 print/ISSN 1469-9567 online/00/030281± 10 Ó

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structures upon care provision. Recommendations are made for future practice development and research in the light of the published literature. De® nitions of palliative care Since the founding of the ® rst hospice in the UK by Cicely Saunders in 1967 there has been a shift from terminal care to palliative care (Clark & Seymour, 1999). This shift can be seen as providing a more comprehensive philosophy of care for individuals, and their families, who have reached a point where it is acknowledged that there is no cure. However, it has given rise to a great deal of potential confusion for both the individual and the professionals involved in care provision, with the terms palliative and terminal care often used interchangeably. For example, Vickeridge (1998) discussed terminal care in a paper entitled `good practice for palliative care’ . The World Health Organisation de® ned palliative care as: `the active total care of patients and their families by a multi-professional team when the patients disease is no longer responsive to curative treatment’ (World Health Organisation Expert Committee, 1990, p. 1). In the UK, the phrase `active total care’ can be found in several de® nitions of palliative care (Standing Medical Advisory Committee/Standing Nursing and Midwifery Advisory Committee, 1992 National Council for Hospice and Specialist Palliative Care Services, 1995) and suggests that a holistic approach is required. Terminal care is `an important part of palliative care’ (National Council for Hospice and Specialist Palliative Care Services, 1995, p. 5). The National Council developed this de® nition further by clarifying that terminal care is concerned with `the last few days or weeks or months of life from a point at which it becomes clear that the patient is in a progressive state of decline’ (National Council for Hospice and Specialist Palliative Care Services, 1995, p. 5). This demonstrates that in reality the point at which terminal care begins is a subjective decision in the absence of an ability to accurately predict prognosis. It is important to note that none of the de® nitions of palliative and terminal care are speci® c regarding the conditions that give rise to a need for palliative care, so that palliative care is not restricted to individuals with cancer. In reality, individuals with palliative care needs who do not have a diagnosis of cancer are often disadvantaged (Cowley, 1993). One of the key factors which impact upon interprofessional working is the language which is employed (Caldock, 1994; Bliss, 1998). An area where terminology is used interchangeably will inevitably result in different interpretations by different professional groups. In a recent study, jointly commissioned by a Health Authority and a Local Authority, to explore the provision of palliative care and interprofessional collaboration, different interpretations of palliative care by professionals were identi® ed (Newall & Matthew, 1997). Recruitment of patients to the study was undertaken by asking social workers, home carers and district nurses to identify individuals whom they considered had palliative care needs. There was not always agreement between professional groups regarding the needs of individuals, for example, social workers identi® ed individuals whom they felt had palliative care needs, while the district nurses often felt that these same individuals had continuing care needs, rather than palliative care needs. This apparent dissonance between district nurses and social workers re¯ ects the lack of clarity within the legislation relating to continuing care in the UK. The Department of Health (1995) issued a circular in order to clarify continuing care, however, the document identi® ed that local policies and eligibility criteria must be set taking into consideration local resources. The lack of an operational de® nition of continuing care compounds the dif® culties facing different professional groups who are involved in continuing and palliative care. This provides an example of the importance of a common language (Newall & Matthew, 1997)

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The ongoing debate in professional practice regarding palliative care versus continuing care is informed by the literature relating to the palliative care approach as separate to specialist palliative care services. The National Council of Hospice and Specialist Palliative Care Services categorised palliative care services at three levels (National Council for Hospice and Specialist Palliative Care Services, 1994). The ® rst level involves the principles of palliative care. The palliative care approach promotes physical and psychosocial well being, considers family and carers, and is guided by the concerns of the patient not solely on physical considerations (Clark & Seymour, 1999). It has been suggested that these principles should be utilised by all clinicians and could underpin continuing care. The second level involves specialist practitioners who work in a variety of non-specialist settings such as a team of Macmillan nurses working in the community. The third level, provided at home or in a specialist setting, involves a concentrated number of staff with access to expert knowledge. Such specialist services are often provided in conjunction with mainstream services. However, Robbins (1997) questioned the justi® cation for the title specialist services, suggesting that it is not always clear what additional contribution the specialist team makes to that of the mainstream services. The contribution may be of knowledge regarding pain control, expert counselling skills or related to resources. The specialist palliative care team may have more time to spend with individuals and their families or work effectively as a multidisciplinary team. This suggests that factors which in¯ uence interprofessional working need to be explored more closely in relation to palliative care. The organisation of palliative care The provision of palliative care is dependent upon partnerships across statutory and nonstatutory organisations and working across those organisational (National Health Service Executive, 1998). By working together it is possible to capitalise on the range of skills and resources available across health and social care agencies (Higginson, 1993). Clark & Seymour (1999) have suggested that teamwork, along with total care and trust, are the essential components of palliative care. Before considering what the interprofessional and organisational barriers and facilitators are in palliative care it is necessary to identify who might be involved in palliative care. During the previous 10 years statutory healthcare has been provided by a number of organisations such as the acute hospital Trust, the community Trust and potentially GP Fundholders (NHS & Community Care Act, 1990). The New NHS Modern Dependable White Paper (Department of Health, 1997) has resulted in the introduction of Primary Care Groups, which commission services whilst being accountable for the utilisation of resources in order to enhance quality and ef® ciency. Under the 1990 NHS and Community Care Act specialist palliative care commissioning remained under the remit of the Health Authority, however, Primary Care Groups will be commissioning specialist palliative care services in the future (Tebbit, 1999). As a consequence of this, Primary Care Group members, doctors, nurses and a Local Authority representative, will be required to have up to date information regarding management and organisation of palliative care services and be well informed to meet their obligations of clinical governance (Department of Health, 1997). Palliative care within the NHS It is important to remember that the individual and their family are at the centre of the team, however, any number of other professionals may also be involved (Clark & Seymour, 1999). The team may include consultants and GPs, ward nurses, district nurses, Macmillan nurses and professions allied to medicine, e.g. physiotherapists, occupational therapists and

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chiropodists. Macmillan nurses were initially pump-primed by monies from the Cancer Relief Macmillan Fund, now Macmillan Cancer Relief (MCR) and as such were able to provide care for individuals with cancer. After 3 years of funding by MCR the posts transfer to NHS funding, either within an acute or community Trust (Clark & Seymour, 1999). The Macmillan nurse has been identi® ed as the professional most likely to obtain equipment and to take a liaison role between different services (Rhodes & Shaw, 1999). However, not everyone with cancer in that study was offered a Macmillan nurse, despite their availabilit y to individuals with cancer. Taking into consideration the earlier de® nitions of palliative care this focus on cancer would suggest that other chronic illnesses requiring palliative care may be even less likely to access appropriate services, such as expertise in symptom control. Another main provider of health care in the community is the district nurse. Palliative and terminal care is an area of care which encompasses all the skills and knowledge possessed by district nurses (Goodman et al., 1998). The district nurses in the study (Goodman et al., 1998) felt that they were responsible for the delivery and co-ordination of care whilst working with individuals with palliative care needs. This suggests that in other areas of their working practice district nurses may feel that there is the potential to be directed by other members of the primary health care team, e.g. the GP. It could be argued that this split in the management of care provides an example of the different philosophies underpinning general practice and district nursing. Carpenter (1993) proposed that doctors are prepared to hand over care for palliative care patients to nursing staff since cure is no longer an option. This suggests that the philosophy of some GPs is to cure the patient whereas district nurses will work towards a digni® ed death for the individual and their family. Palliative care within local authorities The Local Authority provides other statutory provision for individuals with palliative care needs, through social workers, home carers and meals on wheels alongside the other departments within the Local Authority if appropriate, such as housing. In contrast to the NHS provision, Local Authorities are unlikely to have a speci® c palliative care service since it is not required under statute. As previously discussed individuals with palliative care needs are likely to come under the continuing care eligibility criteria, and some social services are now recognising palliative care and including it within the community care (Rhodes, 1999), with social work being considered an integral component of palliative care (Monroe, 1998). The role of the social worker in palliative care is in¯ uenced by three components: the non-medical goals of the palliative care team; the skills of a variety of professionals required; and the expectations of the clients, their family and other professionals (Monroe, 1998). When asked to identify what they would view as their remit in the care of a terminally ill lady and her husband, four social workers (n 5 6) identi® ed assessment, three social workers identi® ed support and advice, and two liaising with other services (Bliss, 1998). It is of interest to note that social workers have indicated that the introduction of Macmillan nurses had led to an erosion of their role as counsellors (Davies & Connolly, 1995) highlighting that skill mix may not be utilised effectively. Non-statutory provision of palliative care Macmillan Cancer Relief funding of specialist nurses is a signi® cant component of non-statutory provision. Additionally there other schemes supported by MCR such as the introduction of GP facilitators, jointly funded by the Royal College of General Practitioners (RCGP), to develop education in relation to palliative care within primary health care teams (Clark & Seymour, 1999). Both the funding of specialist nurses and this GP facilitator scheme


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demonstrate the close working relationship between the statutory and non-statutory sector. Other non-statutory schemes include respite-sitting services such as that offered by Crossroads and bereavement follow-up schemes, such as CRUSE. The Marie Curie community nursing service, founded in 1948, developed to offer bedside nursing care for patients at home having asked more that 7000 people with cancer what services they felt were needed (Barnes, 1999). The type of Marie Curie nurse required is determined by the district nurse, who is responsible for assessing the patients needs, which represents another example of close collaboration between a charitable organisation and the NHS. In addition to the home nurses provided by Marie Curie, they also fund 11 centres providing an in-patient hospice. Indeed, almost 75% of in-patient hospices are funded by non-statutory provision. Alongside the Marie Curie centres, Sue Ryder Homes fund seven hospices, 157 are voluntary hospices and 61 are funded by the NHS (Jackson & Eve, 1999). Challenges to interprofessional working in palliative care It is evident from the description of professionals and organisations involved in palliative care provision that there is great potential for an individual needs-led, package of care for individuals and their family. However, a multiplicity of factors have the potential to fragment any attempts to provide a seamless service for individuals who, during the palliative stage of a condition, may be less able to articulate their own needs and thoughts on the care which they receive. Interprofessional working is concerned with collaborative partnership within teamwork (Gerace, 1991; Kneale, 1994). Before collaboration can take place several preconditions must be met (Henneman et al., 1995), paramount of which is that individuals must be prepared to work together. Practitioners should not feel under threat from other professional groups, but value the different contributions that can be made to provide an appropriate package of care (Gerace, 1991; Trnobranski, 1995). This may be dif® cult if practitioners are unaware of the contributions that other professionals can make to palliative care. Understanding of role In order to work together, professionals are required to understand both their own role and expertise, and the role and expertise of other professionals. A small exploratory study described how a group of district nurses could not agree on their own role in relation to palliative care. Five DNs (n 5 6) felt that it would be important to build a relationship with the patient whilst one felt that there was no role for her at present (Bliss, 1998). Although this was a small study it highlighted that agreement even amongst one professional group within palliative care cannot be assumed. If confusion exists within each professional group, other professionals are less likely to appreciate the expert knowledge and skills, which can be utilised to provide an appropriate package of care. The extent of understanding regarding roles and expertise has been found to in¯ uence how, and when professionals refer to others involved in palliative care provision (Worth et al., 1995). Referral is dependent upon the individual who initiates it and inevitably the understanding of the hospital or GP, to name but two, in addition to the reality that available services will inform the timing and the destination of the referral. District nurses have reported that referrals are too late, reducing the time available to build a relationship with the individual and their family before the end stage of their illness (Bergen, 1992; Worth, et al., 1995; Newall & Matthew 1997; Audit Commission, 1999). It has been suggested that this is indicative of a lack of understanding regarding the contribution that district nursing can make to palliative care before there is a need for intensive home nursing in the terminal stages of

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the condition (Goodman et al., 1998). Equally social workers have identi® ed concerns that their expertise in counselling are not fully utilised since they are not appropriately valued by doctors and nurses (Davies & Connolly, 1995). It has been suggested that referral to a social worker is mainly dependent upon `whim and chance’ , which suggests that there is not a clear understanding of their contribution (Bywaters, 1991, p. 20). Although unintentional, this lack of understanding may well result in a form of gatekeeping with individuals not accessing the most appropriate care. Goodman et al. (1998) reported one district nurses as saying: `we tend not to get other agencies in if possible, because you know it’ s running out of time anyway and you feel you can give as much input as they need’ (p. 495). This may be avoided by earlier referrals to services and closer working relationships between professional groups. One method of developing a greater understanding of role and expertise is for professionals to be involved in interprofessional education, such as that established by the RCGP and MCR since interprofessional education has been found to promote effective collaboration (Horder, 1992).

Professional values The impact of professional philosophies and language has been highlighted in the discussion surrounding de® nitions of palliative and terminal care. However, the impact of professional cultures pervades all aspects of interprofessional working, be it in relation to palliative care or any other aspect of care (Caldock, 1994; Newall & Matthew, 1997; Robbins, 1993). Examination of the nursing Code of Professional Conduct (United Kingdom Central Council for Nursing, 1992) and the social work Code of Ethics (British Association of Social Workers, 1986) reveals that the nursing code focuses upon the individual in contrast to social work which places the client in a collective content (Wilmot, 1995). These different philosophies will inevitably in¯ uence how professionals are able to work together. For example, in child protection research Fitzsimmons & White (1997) found that nurses considered that a report that a child was in need required action, in contrast to the social work perspective which interpreted that an identi® cation of a need provided an opportunity to monitor the situation to gain a better understanding of the situation. This also suggests that district nurses and social workers may be working to different time scales. It can be assumed that these philosophical differences will impact upon all aspects of interprofessional working. Henneman et al. (1995) conducted a concept analysis of collaboration and stated that the following must be present in effective collaboration to take place: shared planning and decision-making, shared responsibility and non-hierarchical relationships. Whilst this does not encompass all the factors required for collaboration, it does provide a framework to discuss the impact of organisational factors upon the provision of interprofessional working in palliative care. These areas can be discussed in relation to the structure and processes of palliative care, inevitably impacting upon the outcomes of palliative care provision.

The challenges of organisations within palliative care The professionals who may be involved in the provision of palliative care work in a variety of organisations, e.g. acute hospital Trust, community Trust, Local Authority, charitable organisations and the voluntary sector. Thus, there may be organisational issues in addition to interprofessional issues which impact upon the provision of care.


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The structure of organisations The NHS provides health care, which is free at the point of delivery. Only recently have those commissioning services become directly responsible to the local community following the introduction of Primary Care Groups. In contrast, the social services departments, which form part of Local Authority provision, have been accountable to the elected members of the council since 1974. Charitable and voluntary organisations are accountable to their Trustees and are to a certain extent able to concentrate on palliative care more readily, since it is usually the key focus of the organisation. These fundamental difference in accountability have led to the development of different organisational hierarchies within which district nurses, specialist palliative care nurses and social workers practice. District nurses and specialist palliative care nurses on a statutory professional register are required to work within the UKCC Code of Professional Conduct (United Kingdom Central Council for Nursing, 1992), thus exercising a degree of professional responsibility. At the current time, there is not a statutory register for social workers who work to a code of ethics which is voluntary. In research examining working in social services departments, 50% of social workers were frustrated by having responsibility without the power to follow through on issues (Balloch et al., 1995). Social workers may be required to have their care plans agreed and signed by their manager while district nurses in contrast have sole responsibility for the care planned for patients. However, there are greater requirements set out within legislation for social workers e.g. child protection (Home Of® ce, Department of Education and Science and The Welsh Of® ce, Department of Health, 1991) and the Mental Health Act (1983), which provide social workers with statutory powers to act. This has been found to provide a source of con¯ ict with doctors considering social workers to be in¯ exible when adhering to child protection guidelines (Davies & Connolly, 1995). It is important that everyone has a clear understanding of the structural issues which impact upon the practice of each professional group, as often the professional will be limited in their options due to the organisational policies and legislation within which they must work. Other structural factors which impact upon palliative care include the hours that a service is available, since palliative care needs are not restricted to Monday to Friday between 9 a.m. and 5 p.m. However, not all community Trusts offer a 24-hour district nursing service, with some specialist palliative care teams providing a weekend on call service, while most social services can only be contacted at certain times during the day. It is impossible to encompass within this paper the range of service arrangements across all the organisations involved in palliative care provision. However, it is important to acknowledge that there are many differences, even in neighbouring services, with which practitioners must become familiar if effective interprofessional working is to occur in palliative care. Taking into consideration the multiple organisations involved, their different lines of accountability and the availabilit y of services it becomes apparent that holistic care, a key principle of the palliative care approach, is a challenge. Practitioners must work hard with each other and the individual and their family to ensure that an appropriate package of are is provided.

The process of providing palliative care Newall & Matthew (1997) found that in 45% of cases (n 5 20) there was virtual agreement, regarding the composition of a package of care, between the district nurse, social worker and home carer. However, on other occasions the three groups were often unaware of the contribution provided by others into the individual package of care. It is important to consider why this was happening and how such dif® culties can in¯ uence shared planning and decision-making. This may be an example of the impact of communication between pro-

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fessional groups, potentially exacerbated by the fact that the district nurse was employed by the community Trust and the social worker and home carer by the Local Authority. Previous research (Cartlidge et al., 1985) has demonstrated that communication is not always effective even when the team members are based in one building and therefore location within different organisations may inevitably make effective communication more dif® cult. The process of referrals to district nurses could be facilitated if other professional groups had an enhanced understanding about the knowledge and skills of district nurses. It is not suf® cient for district nurses to report that referrals are too late without taking some form of action to rectify the situation. One way in which this concern could be addressed is through the clari® cation of the role and remit of district nursing and sharing of this with other professional groups (Audit Commission, 1999). In relation to social services departments concerns are often raised regarding the dif® culty of contacting a social worker (Newall & Matthew, 1997), relating to poor response rates to enquiries when messages are left for social workers and inadequate arrangements when the social worker is not available (Davies & Connolly, 1995). Part of the explanation may rest with the level of sickness experienced by social workers, with only 18 (n 5 107) having not taken time of sick in the previous year, and the relatively rapid turnover of staff (Balloch et al., 1995). Another factor which impacts upon the process of providing palliative care is the resources available within organisations. In the United Kingdom this is evident in the principle of free at the point of delivery for health care in contrast to the means-testing which occurs for some services offered by the Local Authority. This has been found to be a source of dissatisfaction for some informal carers (Rhodes & Shaw, 1999). One very clear way in which resources impact upon the provision of palliative care is related to equity of services. Palliative care may be required by individuals with any number of chronic illnesses and is not limited to cancer. However, Seale & Cartwright (1994) found that individuals who died from non-cancer disease were relatively disadvantaged compare with those who died from cancer. This apparent gap between espoused theory in relation to palliative care and practice is an important consideration in exploring interprofessional working in palliative care. Macmillan nurses are now beginning to work with individuals who require assistance with symptom control such as pain relief for chronic conditions, e.g. leg ulcers and chronic obstructive airways disease. Professionals need to become less tribal in their management of illnesses other than cancer if palliative care needs are to be recognised and met. Alongside equity, access to available services is another area which is impacted upon by organisational resources. In some instances carers have refused services in order that the patient will not become informed of their diagnosis and in some cases prognosis (Rhodes & Shaw, 1999). As a response to this some specialist palliative care nursing teams have changed their name from Macmillan Nurses to the continuing care team. This questions the ef® cacy of services being condition related and thus perhaps conveying a negative image to the public. It has been suggested that if the services were available to everyone who has a palliative care need they would be unable to meet the demand for services (George & Sykes, 1997). This undermines the current emphasis on a needs-led service for palliative care. Professions and organisations need to work together to ensure that the most effective and appropriate care is available for everyone with palliative care needs. The way forward Palliative care has continued to develop over the last 30 years to a point where it is now acknowledged as being in a position to in¯ uence all aspects of clinical care, not just cancer. However, scope remains to develop effective interprofessional working which capitalises on


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the differences in philosophy and culture of professional groups. In relation to the challenges of different organisations recent government guidelines on priorities for the NHS and social services (Department of Health, 1998) has identi® ed ways in which policies will be developed to facilitate closer collaboration between organisations. This must be capitalised upon by professionals to facilitate a greater understanding of the strengths of the multiple professionals and non-statutory providers of palliative care. This, in turn, will allow effective and appropriate palliative care to be available to all who require it. Whilst practitioners endeavour to rise to the challenge, research is required to explore the barriers and facilitators in interprofessional working across organisations to allow the development of a model for palliative care provision.

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