Service evaluation

Community palliative care clinical nurse specialists: a descriptive study of nurse–patient interactions

Abstract

Background: With an ageing population and changes to the UK process of commissioning health-care services, it is important that the role of the community palliative care clinical nurse specialist (CPC-CNS) is better understood. Aim: This study aimed to describe CPC-CNS activities during interactions with patients. Methods: Four CPC-CNSs were observed and audio-recorded during interactions with 34 patients. The data was assessed qualitatively using thematic analysis. Results: An enormous breadth of activities were observed, within a framework of assessment, planning, intervention, and evaluation. Cross-cutting themes were real-time decision making, leadership, ability to respond to and coordinate complex and varied situations, and communication techniques. Data saturation was not achieved. Conclusion: CPC-CNSs provide multifaceted care, requiring wide-ranging knowledge to enable them to act as liaison points in a complex health service, respond independently to the fluctuating needs of patients, and provide effective advance care planning, particularly to those with advanced disease, multi-morbidity, and frailty. Key words: Clinical nurse specialist l Palliative care l Role of nurse l Patient interactions l Advanced disease

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For a full list of author affiliations, see Box 1. Correspondence to: Debra Howell debra.howell@ york.ac.uk

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n the UK, health care is provided to people affected by advanced disease in the primary care setting by multidisciplinary teams (MDTs), which include both generalist practitioners (e.g. family doctors and district nurses) and those with specialist training in specific conditions. Community palliative care clinical nurse specialists (CPC-CNSs) are established members of MDTs. However, the distinct remit of palliative care nurses has changed over time, from being primarily associated with the provision of face-to-face care for terminally ill people, to that of a nurse specialist (Webber, 1997) with clinical, consultative, teaching, leadership, and research responsibilities (Skilbeck et al, 2002). Although health-service infrastructures may differ internationally, there is recognition of the need for consistency between countries in the role of CPC-CNSs. The European Association for Palliative Care (EAPC, 2004), for example, has

described the knowledge and education required to undertake the role of a CPC-CNS. More recent White Papers (EAPC, 2009; 2013) outlined the core competencies of health and social care professionals working in palliative care, as well as the definition and purpose of the various services. However, the details of what CPC-CNSs do in practice on a day-to-day basis are less clear and are often poorly understood by service commissioners and other health professionals. The 2002 World Health Organization (WHO) definition of palliative care emphasised that it may be appropriate for patients with all types of life-threatening illnesses (not just cancer, as in the past) from diagnosis through to end of life and bereavement (WHO, 2002a). At the same time, advances in cancer treatment have increased the number of people living with and beyond cancer; consequently, many of the activities undertaken by CPC-CNSs may be considered closely aligned to the delivery of chronic care (WHO, 2002b). Combined, these changes may contribute to misconceptions about the roles of different practitioners as care moves beyond that which is provided solely to people with cancer in the last few months of life. Further significant changes have occurred in parallel, such as the development and funding of other practitioner roles. These include site-specific cancer nurse specialists, who have a growing role in survivorship care, and community matrons. A plethora of other services may also now be involved to some extent in delivering palliative care. This has led to a clouding of physician, nursing, and advanced nursing remits, which has contributed to a lack of consistent agreement or shared understanding about the role of the CPCCNS (Husband, 2008). Different health-care disciplines can also hold stereotyped or out-ofdate views of each other’s roles in relation to the delivery of palliative care (Auty, 2005). The implications of this confusion are varied; however, services need to understand each other’s roles and expertise to work effectively together

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Debra Howell, Beth Hardy, Caroline Boyd, Chris Ward, Eve Roman, Miriam Johnson

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Service evaluation

(Hill, 2001) and to achieve coordinated health care (Mulvihill et al, 2010). Absence of shared understanding between services can contribute to delayed referral to a service (Walshe et al, 2008), professional conflict (Seymour et al, 2002), and a lack of collaboration between services (Redekopp, 1997). Furthermore, in the current UK model of primary-care commissioning of services, it is important that commissioners are clear about the roles of the services they are investing in. In this context, there is increasing emphasis on health-care services being able to demonstrate their utility. Hence, it is important that there is more understanding among commissioners, health practitioners, and the wider public of the work undertaken by CPC-CNSs; this knowledge can promote appropriate use of services and encourage effective collaborative working, which is often associated with the delivery of quality care. In order to address this, a group of practising CPC-CNSs formed an informal, unfunded collaboration with health-service researchers and conducted an evaluative service review (Brain et al, 2011). The aim of this partnership was to provide the CPC-CNSs with a report containing evidence that they could use to help them describe their role (with respect to their day-today interactions with patients) to commissioners and other stakeholders. This paper is a summary of findings from the more detailed report.

Aim This study aimed to describe CPC-CNS activities during interactions with patients.

Methods A qualitative approach was used whereby the activities of four CPC-CNSs in a city area in the north of England were observed and audio-recorded by a researcher during their interactions with patients over a period of several weeks in 2009.

Participants The practitioners were all senior (band 7) nurse specialists working as part of the same team; three had undertaken extended qualifications.

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Ethical approval As the primary intent of the project was to conduct a service evaluation describing current practice, and no changes were made to the delivery of normal care, the study was defined as a service evaluation by the York NHS Research Governance and Research Ethics Committee and permission was granted to publish the findings.

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Box 1. Author affiliations Debra Howell is Research Fellow, Epidemiology and Cancer Statistics Group, Department of Health Sciences, Seebohm Rowntree Building, University of York,York, YO10 5DD, England; Beth Hardy is Senior Research Fellow, Sue Ryder Care Centre for the Study of Supportive, Palliative and End of Life Care, Faculty of Medicine and Health Sciences, University of Nottingham, England; Caroline Boyd is Community Specialist Palliative Care Nurse, The Lodge, St Leonard’s Hospice,York, England; Chris Ward is Nurse Consultant in Adult Palliative Care, South Tees Hospitals NHS Foundation Trust, England; Eve Roman is Professor of Epidemiology, Epidemiology and Cancer Statistics Group, Department of Health Sciences, University of York, England; Miriam Johnson is Professor of Palliative Medicine, Hull York Medical School, University of Hull, England

Data collection Attempts were made to spend equal time with and visit similar numbers of patients with each nurse. To minimise bias and gain a detached perspective, the researcher was as unobtrusive as possible during interactions and did not participate in the consultation. The process was unstructured in that the entire interaction was observed and recorded, rather than certain activities being focused on. The researcher made notes between visits to document, for example, other practitioners the nurse liaised with between patient contacts. Patients were contacted by their CPC-CNS in advance of each planned visit; the purpose and methods of the evaluation were explained and the patients were asked whether they would consent to a researcher observing and audiorecording the nurse during their consultation. This was reaffirmed with the patients at the time of the interaction and also explained to other people present, including relatives and carers. The interaction was audio-recorded so that the analysis could be as thorough as possible; the recording enabled the researcher to identify activities from the transcript rather than relying on what could be written during the interaction or remembered afterwards. All those present during the interaction were informed that the recording would be transcribed to facilitate data analysis and that anonymised quotes might be used in written articles. The researcher accompanied the nurses on consecutive appointments over complete days, rather than targeting patients with more complex needs, as the intention was to produce a general account of all activities.

Data analysis The recordings were transcribed verbatim, with great care being taken to anonymise patients and any others present during the interaction. ATLAS-ti version 6.2 (ATLAS.ti GmbH) was used to store and manage the data, which was then coded by the same researcher who

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Service evaluation

Assessment: Planning: Intervention: ● History taking ● Liaising with ● Clinical ● Skilled questioning others ● Emotional ● Observation ● Referral to others ● Preparation for ● Use of analogue ● ‘Just in case’ death scales medication ● Provision of ● Examination ● Advance care information planning ● Financial ● Advocacy

Evaluation: Follow-up visit or phone call ● Feedback from others in support team ● Multidisciplinary team meetings ●

Cross-cutting themes: ● Comunication ● Leadership and coordination ● Real-time decision making ● Ability to respond to complex or varied situations

accompanied the nurses. This initially involved meticulous studying of the transcripts to enhance familiarisation with the data. To give structure to the observations, the data was then managed using thematic analysis (Boyatzis, 1998). Distinct activities identified in the data were coded into themes and then checked for coherence and consistency by a further researcher. These categories were collapsed and expanded as data analysis progressed and additional themes were identified.

Results The nurses were observed during 38 interactions with 34 patients (four patients were visited twice during the study period). Fourteen of the patients were male and 20 female; their median age was 66 years (range 35–81 years). Most of the visits occurred in patients’ homes, with two taking place in the in-patient hospice setting. The majority of visits were follow-up appointments but eight new patient assessments were observed and two re-referrals. In addition, one bereavement visit was made to the spouse of a deceased patient. One patient had non-malignant disease (chronic obstructive pulmonary disease), whereas the remainder had a wide range of malignant diseases including adrenal, breast, cholangio, colo­rectal, epiglottis, gastrointestinal, gynaecological, haematological (myeloma), head and neck, lung, pancreatic, peritoneal, prostate, renal, skeletal, and thyroid cancers, as well as bone, brain, and liver metastases. The observations generated a vast amount of data and an immense breadth of activities were identified. Nonetheless, data saturation was not reached by the end of the allocated study period—further new activities were still being identified. An overview of the study findings is presented in Table 1, which summarises inter­ actions in relation to the core nursing principles of assessment, planning, intervention, and evaluation, each with specific components. Several

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cross-cutting themes were evident: communication techniques, leadership and coordination, realtime decision-making, and the ability to respond to complex and varied situations. The study findings are examined within this framework, but it should be noted that many of the categories are interrelated and overlapping.

Assessment A wide range of issues were assessed, including the patient’s history, symptoms, medication, activities of daily living (ADLs) and care package, emotional and psychological problems, end-oflife preferences and decisions, as well as financial and mobility issues. Each of these areas is broken down further in Table 2, clearly highlighting the complexity as well as the varied and detailed nature of this process while demonstrating the wide-ranging knowledge needed to address the multifaceted concerns that may be raised by patients and others present. The assessment process involved use of several techniques, including detailed closed, open, and probing questioning; observation (e.g. of mobility, wellbeing, and anxiety); physical examination (e.g. of syringe driver sites, oral hygiene, and abdominal distension using palpation); and use of measurement tools (including analogue scales to measure pain and response to analgesia). Summarising was often used to check that the nurse had correctly understood the problem from the patient’s or relative’s perspective. An extremely wide range of symptoms were identified and assessed, ranging from the relatively routine to the complex and/or urgent. Examples include pain; problems with gastro­ intestinal functioning, breathing, fatigue, nausea, appetite, and eating; emotional and psychological issues including anxiety and mood; bleeding and bruising; itching; agitation; confusion; and potential spinal cord compression. Assessment involved exploring issues such as the characteristics of each symptom, changes over time, and how symptoms affected the patient’s ADLs. The following excerpt demonstrates the nurse assessing a patient’s gastrointestinal problems and excluding bleeding: Nurse (N): ‘When you say loose, you mean loose stools?’ Patient (P) 22: ‘Loose, yes. Like diarrhoea.’ N: ‘Like thick soup or …?’ P22: ‘No, like a brown mass.’ N: ‘A brown mass. And was it a dark brown mass?’ P22: ‘No. Not particularly dark, no.’ N: ‘Not black?’

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Table 1. Summary of interactions

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Table 2. Issues addressed during the assessment phase Patient history: Symptoms: Medication: Activities of daily Emotional/ Disease pathway Financial: ● Disease pathway: ● Type of symptom ● Current living and the psychological: and end-of-life ● How the patient diagnosis, ● Area of symptom medication, dose, care package: ● General coping decisions: or family is treatment, ● Characteristics of route ● Coping and and emotional ● Response to coping financially relapse, tests, and symptom, when ● Effectiveness of professional wellbeing being told about ● Issues relating to investigations and how often it current support (family ● Mood, anger, disease not being able to ● Family and friends occurs medication and/or agencies) depression, denial progression or work ● Comorbidities ● Potential cause of ● Effectiveness of ● Appetite, eating ● Worries and terminal nature ● Benefits being ● Previous symptom medication for and drinking anxieties of illness received employment, ● What makes it breakthrough pain ● Ability to cope at ● Energy or fatigue ● Feelings about ● Benefits entitled hobbies worse or better ● Side effects home or cope at ● Hyperventilating death being to ● Previous SPC ● Changes over home alone or panicking imminent ● Parking badge input time ● Eliminating, ● Uncertainty ● Feeling of being issues ● Allergies ● Effect on activities incontinence, about disease abandoned at ● Whether financial ● Whether anyone of daily living ability to get to progression or end of treatment issues are in drives ● Emotional effect toilet the future ● Feelings about order in advance ● Knowledge and of symptoms ● Washing and ● Communication DNR status of death understanding of dressing between patient ● Preferred place of illness ● Mobility and falls and others care and death ● Pressure sores ● Potential hospice ● Type of housing admission and stairs DNR, do not resuscitate; SPC, specialist palliative care

The medication review explored current drug regimens and their effectiveness and side effects, as well as possible drug toxicities and allergies, while assessment of ADLs focused on what the patients were physically able to do for themselves, their coping mechanisms, and the support networks available to them. There was a strong emphasis on emotional and psychological assessment, including mood, anxiety, panicking, and the impact of an uncertain future on these, and this was directed at both patients and families. The following excerpts demonstrate the nurse trying to identify the specific causes of a patient’s sadness and assessing a relative’s particular worries about a patient, respectively:

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N: ‘Well just let me ask you one thing. You know when you get down in the dumps, what is it you are thinking about? What goes through your mind?’ (To P22) N: ‘You were quite anxious last time I came, and worried [about the patient]. Have you settled down a bit then, or are you still worried?’ (To relative (R) 21)

Patient preferences and decisions about end-oflife care were also discussed and assessed, for example with respect to the decision to transfer from a curative to a palliative approach to care:

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N: ‘So how are you both feeling now? Cos that’s an enormous decision to make after very active treatment for so long ... And then, you know, you made that massive decision and come home and you’ve just decided on quality of life really haven’t you?’ (To P2 and R2)

Attempts were also made to identify specific anxieties in relation to dying, as highlighted in the discussion below, which took place with a patient who lived alone and was extremely angry and reluctant to accept the short prognosis associated with their disease: N: ‘And what are the things that are frightening you about dying?’ P12: ‘Well what any normal person would be frightened of ...’ N: ‘Well like what? My fears may be very different from yours.’ P12: ‘Well, being on your own.’

Finally, the CPC-CNSs also assessed the patient’s financial situation, including the impact of being unable to work (if this was appropriate), as well as any statutory benefit entitlements being claimed or that the patient or carer might be eligible to apply for. This included issues around mobility, transport, and parking rights.

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Table 3. Overview of interventions Clinical: Emotional/ Liaising with other Referral to others: Preparation for Provision of ● Introduction of psychosocial professionals: ● District nurses death: information: new medication support: ● GP about ● Physiotherapist ● Advance care ● Patient pathway: ● Altering dose, ● Initiating and medication or ● Occupational planning diagnosis and frequency or following-up need for visit therapist ● Discussion about treatment route of existing difficult ● District nurse to ● Symptom preferred place ● Symptoms medication conversations arrange visit management of care and death ● About the dying ● Reassurance ● Praise and frequency and therapist (fatigue ● Memory boxes process about use of encouragement coordinate visits or anxiety) for family ● Financial issues medication, e.g. ● Acknowledging ● Hospice to arrange ● Psycho-oncology ● Preparing carers and entitlements morphine distress admission or alert ● Benefits advisor for impending ● Variation in ● Ensuring ● Sympathy and that admission will ● Social services death of someone individual coping compliance empathy be needed soon ● Hospice services close and their mechanisms ● Suggesting ● Hospital CNSs future loss ● Support services alternative about the patient’s ● Ensuring available therapy condition communication ● Reassurance that ● Hospital had taken place could control consultants about between patients symptoms the patient’s and carers ● ‘Just in case’ drugs symptoms ● Various agencies to organise equipment

Financial: Provision of forms ● Help completing claim forms ● Organising Macmillan financial awards ● Advocacy ● Supporting carer dispute with employer about leave to care for relative ● Liaising between patient and carer over night sitter issues ● Arranging to expedite hospital appointment ● Organising safety alarm and key safe ●

CNS, clinical nurse specialist

A wide range of interventions were planned and instigated by the CPC-CNSs, as shown in Table 3. These ranged from clinical actions, such as the management of medications for optimal symptom control, to the provision of emotional or psychosocial support and patient-specific information. This meant that the nurses frequently liaised with many other professionals, including district nurses, GPs, other specialist nurses (e.g. lung or colorectal cancer CNSs) and hospital consultants; the nurses also had close links with wider clinical and administrative teams at local hospitals and hospices. This gave the CPC-CNSs a central role in the leadership and coordination of care, and they were observed to be actively involved in case management through interactions with other members of the MDT. This was particularly apparent in relation to the provision of home care, where they often provided the link between primary, secondary, and tertiary care as well as with other agencies, such as hospices. The example below relates to several interventions instigated on behalf of a patient with previous and potentially recurrent spinal cord compression, debility, and fatigue: N: ‘I’ll have a chat with [consultant] I think. If it has got worse in the last 2 weeks it might be

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worth bringing your out-patient appointment forward or getting, you know, an X-ray to see what is going on ... [I’ll] have a word with [therapist] and ask her to pop in and see you maybe one day next week ... and she’ll give a session of fatigue management ... and I’ll have a chat with [GP].’ (To P1)

Many of the observed interventions were directed at providing emotional support and reassurance for patients and their carers during the interaction. This included listening to patients and providing praise, encouragement, and sympathy, particularly in the face of uncertainty. The following example is a discussion with a patient and his partner (aged in their 50s), both of whom had cancer diagnoses: N: ‘You’ve been through a phenomenal amount, absolutely huge amount, and then with your [relative’s] diagnosis on top, you know. I think you should give yourselves a pat on the back for getting through that really. You know it’s, it’s massive [... ] I was wondering, you know, I mean for both of you ... if you felt like you needed a bit of extra support, there is psycho-oncology you know at the cancer centre. There’s a couple of psychologists who will see people for, say, six sessions to help them. Would you be interested in that?’ (To P7 and R7)

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Interventions: planning, delivery, and evaluation

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Table 4. Cross-cutting themes Real-time decision making: Leadership and Ability to respond to ● Prioritisation of problems coordinating care: complex or varied ● Who to involve in care ● Overall coordination of situations: ● When to make an onward the care package ● Knowledge about diseases referral ● Liaising with others ● Knowledge about ● When to introduce a difficult ● Referral to others symptoms conversation ● Contact between primary, ● Knowledge about ● How far to take a difficult secondary and tertiary symptom management conversation, e.g. about dying care and other agencies ● Knowledge about support ● Visit frequency systems available

The nurses also intervened directly to provide non-pharmacological therapies, such as relaxation techniques and neuro-linguistic programming. Interventions also took the form of the nurses acting as advocates for patients and carers, for example by providing evidence to resolve employment issues:

appointment or in a follow-up telephone conversation. On occasion this took place during the interaction, e.g. if the nurse assessed the response to medication (such as analgesia) taken during the visit.

Cross-cutting themes

N: ‘Have you talked to [patient]? Have you said everything that you need to say?’ (To R19)

The nurses were often faced with complex, multifaceted problems, and there were several cross-cutting themes in how they managed these issues. These themes included real-time decision making, which was closely linked to leadership and the coordination of care (Table 4). The decision making included prioritising the problems that had been identified, deciding which additional professionals should be involved and when, and making appropriate referrals. With emotional and psychological issues, decisions were made about when to introduce a particularly difficult conversation, how far to pursue this, and when to withdraw to allow the patient to consider further the implications of the discussion. Having the ability to respond to complex or varied situations was another cross-cutting theme as the nurses could never predict the issues that would arise during a consultation—this required a very broad knowledge of diseases, symptoms, and medications as well as local support systems. Communication techniques were a key theme underpinning many of the interactions and, in addition to various questioning techniques, involved giving and receiving information, offering appropriate explanations, providing support and reassurance, listening, and summarising. The nurses encouraged patients to balance stoicism with acknowledgment of their difficulties, and hope with realism. This example shows the nurse trying to really understand and tease out the issues causing the patient anxiety:

A process of evaluation was also observed during interactions, and this often involved activities such as assessing the response of a previous medication change, either at a subsequent

N: ‘Is there something frightening you or worrying you?’ P11: ‘No, not really. I just don’t sleep very well.’ N: ‘And what stops you sleeping apart from this

N: ‘So first of all [patient] let me just give you that ... [paperwork] ... three copies just in case you lose any … This is just a support letter for [relative] to take with her. Did you ring the union guy [relative]?’ (To P3 and R3; R3 was facing an industrial tribunal owning to work absence to care for P3)

Discussions and assessments of preferences around place of care and death were observed to facilitate interventions around advance care planning: memory boxes were prepared for children, preferred place of death was communicated to extended team members, and ‘just in case’ drugs were organised if necessary. Patients and relatives were encouraged to have frank and open conversations about their end-of-life preferences, and information to support preparation for imminent death was provided by the nurses. The following examples show the nurse caring for relatives during the time near to the patient’s death: N: ‘And there will be medicines in here [available in the home], there will be injections in the house; [district nurse] has gone to get them all ready ... so any nurse that came could give an injection. [Patient] doesn’t have to be restless or suffer ... or in pain ...’ (To R26)

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Communication techniques: ● Open and probing questions ● Listening ● Balancing stoicism and acknowledging difficulties ● Balancing hope with realism

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cough at the moment?’ P11: ‘I don’t know, I just wake up and that’s it.’ N: ‘Are you worrying about something?’ P11: ‘I possibly am.’ N: ‘Can you think about what that might be?’ P11: ‘I don’t know.’ N: ‘Are you worrying about the family?’ P11: ‘No, I don’t say I’m worrying about the family so much. But I do worry about them.’ N: ‘What do you worry about? Can you talk to me about it?’ P11: ‘Oh, just the burden to them.’

Discussion This study identified an enormous breadth of activities during CPC-CNSs’ interactions with patients and their relatives and carers. This information could be used to facilitate understanding of the role of specialist palliative care nurses among commissioners, as well as other healthcare practitioners and stakeholders. Despite the extent of activities identified during this study, however, data saturation was not achieved—new activities were still being identified at the end of the research period. When the findings were presented to a group of CPC-CNSs, they could also think of many other activities that formed part of their day-to-day interactions with patients. The authors could find no other research directly reporting the day-to-day role of CPCCNSs. However, the activities and specific themes described in the present study do show that the nurses were applying the core constituents of palliative care as defined by the EAPC, such as autonomy, communication, and a multiprofessional approach to care. Their activities were also aimed at addressing the core competencies in palliative care, including enhancing physical comfort, meeting psychological, social, and spiritual needs, responding to the needs of families, responding to challenges of decision making, and coordinating care (EAPC, 2013). The nurses were also involved in other areas described as ‘highly relevant’ in the context of palliative care, such as advance care planning, continuity of care across different settings, and preferred place of care (EAPC, 2009). More locally, an audit carried out across the region encompassing the study site reported similar findings in terms of, for example, the range of physical and psycho-social problems addressed and the role of the CPC-CNS in onward referrals (Rock and Kirk, 2011). Other studies have explored the role of CPC-CNSs by asking the nurses themselves about specific areas, such as emotional support (Skilbeck and Payne, 2003) and education

(Husband and Kennedy, 2006); by asking nurses to self-assess the time they allocated to different activities (Newbury et al, 2008); or by using a combination of these approaches (Skilbeck and Seymour, 2002). Still others have explored patient and carer perceptions and experiences (McLoughlin, 2002; Seymour et al, 2003; Chapple et al, 2006; Lewis and Anthony, 2007). Although these studies did not describe any additional activities to those identified in the present study in relation to the delivery of care, their different objectives meant they did not fully illustrate the actual day-to-day activities undertaken by the nurses. There has been criticism of studies that solely describe nursing roles, rather than evaluating the effectiveness of the service in terms of impact and outcomes (Corner et al, 2002). Although the authors are in agreement about the need for such evaluation, this was outside the remit and resources available for the present study. However, Taylor and Jones (2012) highlighted that much of the palliative care CNS’s role is hard to measure, and that the rich descriptions that can be generated through qualitative data are inherently valuable in highlighting the ‘hidden’ work undertaken in these services. In this respect, the present study provides a valuable, unique contribution to existing knowledge.

Limitations The study focussed on the clinical aspects of the CPC-CNSs’ interactions and intentionally did not examine the wider role of the nurses, in areas such as the development of policy and strategy; participation in research, evaluation, and audit; and formal teaching. In addition, no attempt was made to analyse the quality of the clinical care or advice given. These issues were beyond the scope of this paper. The study findings were presented to regional CPC-CNSs on completion, who considered them an accurate reflection of their practices. The authors anticipate that many of the activities described are likely to occur in other geographical locations with similar cultural and health-care practices; however, wider generalisability cannot be assumed outside the study area, and indeed across different individual nurses.

Conclusion This study describes an enormous breadth of activities that were observed to take place during CPC-CNSs’ interactions with patients and their relatives and carers. The nurses provided multifaceted care, acting as liaison points in a complex health service, working across numerous

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❛This study identified an enormous breadth of activities that were observed to take place during community palliative care clinical nurse specialists’ interactions with patients and their relatives and carers.❜

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Service evaluation

healthcare settings and with many different professionals; their role in advance care planning was particularly apparent. The nurses required wide-ranging knowledge to enable them to respond independently to the fluctuating needs they encountered, particularly among those with advanced disease, multi-morbidity, and frailty. However, the activities identified are only a partial reflection of the nurses’ role, with respect to both their therapeutic interactions with patients and their extended remit with regard to policy, research, and teaching. Further work is needed to examine the effectiveness of this service using patient-reported outcomes. I● JPN Sources of funding This study was based on an informal collaboration and did not receive any specific funding. Declaration of interests The authors have no conflicts of interest to declare. Acknowledgments We are extremely grateful to the patients and families who consented to the researcher observing the CPC-CNSs during their visits. We are also extremely grateful to Anne Thomson for transcribing the interviews, John Blase for providing assistance with the figures, and Georgia Mortzou for editing an earlier version of the paper. We would like to acknowledge Judith Seagrave, Martin Sainty, Kate Hodge, and Sue Taylor, who were instrumental in instigating and facilitating this study. Auty S (2005) Palliative care: roles and perceptions. Int J Palliat Nurs 11(2): 61 Boyatzis RE (1998) Transforming Qualitative Information. Sage, London Brain J, Schofield J, Gerrish K, et al (2011) A Guide for Clinical Audit, Research and Service Review. Healthcare Quality Improvement Partnership, London Chapple A, Ziebland S, McPherson A (2006) The specialist palliative care nurse: a qualitative study of the patients’ perspective. Int J Nurs Stud 43(8): 1011–22 Corner J, Clark D, Normand C (2002) Evaluating the work of clinical nurse specialists in palliative care. Palliat Med 16(4): 275–7 European Association for Palliative Care (2004) A Guide for the Development of Palliative Nurse Education in Europe. EAPC Taskforce, Italy European Association for Palliative Care (2009) White paper on standards and norms for hospice and palliative care in europe: part 2. Eur J Palliat Care 17(1): 22–33 European Association for Palliative Care (2013) Core competencies in palliative care: an EAPC White Paper on

palliative care education: part 1. Eur J Palliat Care 20(2): 86–91 Hill A (2001) Community palliative care: the evolving role of Macmillan nurses. Nurs Times 97(12): 38–9 Husband J (2008) The evolving role of the community nurse specialist in palliative care. Br J Community Nurs 13(1): 26–30 Husband J, Kennedy C (2006) Exploring the role of community palliative care nurse specialists as educators. Int J Palliat Nurs 12(6): 277–84 Lewis D, Anthony D (2007) A patient and carer survey in a community clinical nurse specialist service. Int J Palliat Nurs 13(5): 230–6 McLoughlin PA (2002) Community specialist palliative care: experiences of patients and carers. Int J Palliat Nurs 8(7): 344–53 Mulvihill C, Harrington A, Robertson A (2010) A literature review of the role of the specialist palliative care community nurse. Int J Palliat Nurs 16(4): 163–72 Newbury J, de Leeuw W, Newton C (2008) What do community palliative care nurse specialists do? An activity analysis. Int J Palliat Nurs 14(6): 264–71 Redekopp N (1997) Clinical nurse specialist role confusion: the need for identity. Clin Nurse Spec 11(2): 87–91 Rock C, Kirk P (2011) Specialist Palliative Care Clinical Effectiveness Audit. Yorkshire Cancer Network: Yorkshire Sub-Regional Palliative and End-of-Life Care Group Seymour J, Clark D, Hughes P et al (2002) Clinical nurse specialists in palliative care. Part 3. Issues for the Macmillan Nurse role. Palliat Med 16(5): 386–94 Seymour J, Ingleton C, Payne S, Beddow V (2003) Specialist palliative care: patients’ experiences. J Adv Nurs 44(1): 24–33 Skilbeck J, Payne S (2003) Emotional support and the role of clinical nurse specialists in palliative care. J Adv Nurs 43(5): 521–30 Skilbeck J, Seymour J (2002) Meeting complex needs: an analysis of Macmillan nurses’ work with patients. Int J Palliat Nurs 8(12): 574–82 Skilbeck J, Corner J, Bath P et al (2002) Clinical nurse specialists in palliative care. Part 1. A description of the MacMillan Nurse caseload. Palliat Med 16(4): 285–96 Taylor C, Jones J (2012) Demonstrating the Value of Macmillan Clinical Nurse Specialists. www.macmillan.org. uk/Aboutus/Healthandsocialcareprofessionals/Newsandupdates/MacVoice/DemonstratingthevalueofMacmillanCNSs.aspx (accessed 7 May 2014) Walshe C, Chew-Graham C, Todd C, Caress A (2008) What influences referrals within community palliative care services? A qualitative case study. Soc Sci Med 67(1): 137–46 Webber J (1997) The evolving role of the Macmillan Nurse. Cancer Relief Macmillan Fund, London World Health Organization (2002a) Definition of palliative care. www.who.int/cancer/palliative/definition/en/ (accessed 7 May 2014) World Health Organization (2002b) Innovative Care for Chronic Conditions: Building Blocks for Action. Global Report. WHO, Geneva

❛The nurses provided multifaceted care, acting as liaison points in a complex health service, working across numerous healthcare settings and with many different professionals ...❜

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Community palliative care clinical nurse specialists: a descriptive study of nurse-patient interactions.

With an ageing population and changes to the UK process of commissioning health-care services, it is important that the role of the community palliati...
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