Impact of the Powys Macmillan GP clinical facilitator project: views of health-care professionals

The UK charity, Macmillan Cancer Relief, commissioned a 3-year pilot project employing 12 GP clinical facilitators (GPCFs). The aim was to raise the standard of generalist palliative care, provide extended clinical palliative care and provide a coordinated framework for commissioning specialist palliative and cancer care in Powys, rural Wales. As part of the comprehensive evaluation, surveys of GPCFs, GPs, district nurses and community hospital nurses were undertaken in order to record changes in palliative care activity, specialist palliative care services and training needs. Services providing 24-hour nursing and social services were perceived as in need of development. Referrals to Macmillan nurses increased by 40% and GPs reported that time spent on palliative care increased, on average, from a quarter of a day to half a day per week, although district nurses reported a reduction in palliative care activity. The majority of nurses thought that the GPCF's contribution was important. The use of local palliative care guidelines increased significantly among district nurses by the end of the project.     

Evaluation of a scheme to enhance palliative cancer care in rural Wales

Since the early 1990s, the United Kingdom has seen several initiatives designed to improve the quality of cancer palliative care in the community. We report on the evaluation of a project that took place in the rural county of Powys in Wales in which a group of general practitioner clinical facilitators (GPCFs) sought to raise the overall standard of palliative care among primary health care teams (PHCTs). The evaluation was conducted over 3 years and made use of several methods: interviews with facilitators and other key stakeholders at regular intervals throughout the project; a survey of PHCT members at two time points; an analysis of patterns of opioid prescribing in the county before and during the project; monitoring of referrals to specialist palliative care services out of county; and an analysis of place of death of those dying from cancer. The evaluation found that local general practitioners (GPs) were willing to work as facilitators and that they made contact with over two thirds of those in the PHCTs. Facilitators undertook a variety of clinical, educational and service development initiatives but did report on problems of role definition and time management. There were no marked changes in patterns of referral to specialist palliative care or in place of death, but there was some evidence to suggest that the facilitators had an influence on their colleagues opioid prescribing patterns.     

Palliative care services in England: a survey of district nurses' views

Good access to health and social services is essential to enable palliative care patients to remain and die at home. This article reports on a survey of perceptions of availability of such services by district nursing teams (651 respondents) across eight cancer networks in England. Only just over half of respondents thought GP home visits and specialist palliative care assessment were always available. Many district nurses reported, at best, only sometimes being able to access inpatient palliative care beds, respite care, Marie Curie/night sitting services or social work assessment. Wide variation in access to all services was reported between cancer networks. Equitable provision of services is essential if more patients are to be cared for and die at home, but our results indicate considerable room for improvement. Primary care trusts, cancer networks and strategic health authorities must work together to ensure minimum standards of access nationally if the recommendations of the NICE guidance on supportive and palliative care are to be achieved.     

Palliative care for patients with cancer: district nurses' experiences

AIM: This paper reports a study exploring district nurses' experiences of providing palliative care for patients with cancer and their families. BACKGROUND: There is an increasing demand for palliative care in the community, as many patients wish to die at home. District nurses are central to providing palliative care in the community, but there is a dearth of literature on district nurses' experiences in palliative care. METHOD: A Husserlian phenomenological approach was adopted with a purposive sample of 25 female district nurses. Data were collected using unstructured, tape-recorded interviews and analysed using Colaizzi's seven stages of data analysis. FINDINGS: Four themes were identified: the communication web; the family as an element of care; challenges for the district nurse in symptom management and the personal cost of caring. CONCLUSIONS: District nurses' experiences of providing palliative care to family units was challenging but rewarding. The emotive nature of the experience cannot be under-estimated, as many district nurses were touched by the varying situations. Whilst acknowledging the need to maintain an integrated approach to care, district nurses should be identified as the key workers in the complex situation of palliative care.     

Providing palliative care for cancer patients: the views and exposure of community general practitioners and district nurses in Japan

ContextThe role of general practitioners (GPs) and district nurses (DNs) is increasingly important to achieve dying at home.ObjectivesThe primary aim of this region-based representative study was to clarify 1) clinical exposure of GPs and DNs to cancer patients dying at home, 2) availability of symptom control procedures, 3) willingness to participate in out-of-hours cooperation and palliative care consultation services, and 4) reasons for hospital admission of terminally ill cancer patients.MethodsQuestionnaires were sent to 1106 GP clinics and 70 district nursing services in four areas across Japan.ResultsTwo hundred thirty-five GPs and 56 district nursing services responded. In total, 53% of GPs reported that they saw no cancer patients dying at home per year, and 40% had one to 10 such patients. In contrast, 31% of district nursing services cared for more than 10 cancer patients dying at home per year, and 59% had one to 10 such patients. Oral opioids, subcutaneous opioids, and subcutaneous haloperidol were available in more than 90% of district nursing services, whereas 35% of GPs reported that oral opioids were unavailable and 50% reported that subcutaneous opioids or haloperidol were unavailable. Sixty-seven percent of GPs and 93% of district nursing services were willing to use palliative care consultation services. Frequent reasons for admission were family burden of caregiving, unexpected change in physical condition, uncontrolled physical symptoms, and delirium.ConclusionJapanese GPs have little experience in caring for cancer patients dying at home, whereas DNs have more experience. To achieve quality palliative care programs for cancer patients at the regional level, educating GPs about opioids and psychiatric medications, easily available palliative care consultation services, systems to support home care technology, and coordinated systems to alleviate family burden is of importance.     

Sexuality in palliative care: patient perspectives

This qualitative study investigated the meaning of sexuality to palliative patients. Face-to-face interviews were conducted with ten patients receiving care in a tertiary palliative care unit, a hospice or by palliative home care services in their homes. Several themes emerged. Emotional connection to others was an integral component of sexuality, taking precedence over physical expressions. Sexuality continues to be important at the end of life. Lack of privacy, shared rooms, staff intrusion and single beds were considered barriers to expressing sexuality in the hospital and hospice settings. Only one subject had previously been asked about sexuality as part of their clinical care, yet all felt that it should have been brought up, especially after the initial cancer treatments were completed. Home care nurses and physicians were seen as the appropriate caregivers to address this issue. Subjects unanimously mentioned that a holistic approach to palliative care would include opportunities to discuss the impact of their illness on their sexuality.     

Supporting cancer patients with palliative care needs: district nurses' role perceptions

The aim of this study was to examine UK district nurses' perceptions of their role in supporting palliative care cancer patients. Patients with cancer are living longer with the disease. District nurses are the largest UK workforce caring for people with cancer at home, the preferred place of care. Meeting patients' supportive and palliative care needs is complex. Little is known about district nurses' supportive role in the early phase of palliative care. Semistructured interviews were conducted with 34 district nurses. Data were analyzed thematically, with assistance from Atlas/ti. A dominant theme emerging from the interviews was ambiguity in the district nurses' supportive role in early palliative care. District nurses discussed the importance of making contact early on to support cancer patients and their families but had difficulty articulating this "support." Ambiguity, lack of confidence, and perceived skill deficits presented district nurses with dilemmas that were difficult to resolve. District nurses have great potential for meeting cancer patients' supportive and palliative care needs, a potential not currently realized. Education alone is unlikely to improve practice without an understanding of the tensions faced by district nurses in their work. Recognizing and addressing dilemmas in the everyday work of district nurses is central to moving practice forward.     

District nurses' needs: palliative care for people with learning disabilities

The aim of this article is to identify national palliative care issues, and current palliative care services provided by district nurses for people with a learning disability in North Staffordshire, UK. The professional and educational needs of district nurses in the role of palliative care providers for people with a learning disability were identified by two small focus groups involving district nurses. This resulted in the formulation of a questionnaire, which was circulated to 165 district nurses. While the initial part of the research is qualitative, the final survey involved a quantitative analysis using a questionnaire and a three-point Likert scale. This compared a number of independent variables such as age range, length of experience and number of contacts with clients who have a learning disability and palliative care needs. The results provide an overview of existing service uptake and a profile of the professional and educational needs of district nurses when caring for people with a learning disability who also have palliative care needs.     

Macmillan nurse facilitators for palliative care: evaluation of a pilot project

AIM: to describe and evaluate the implementation of two Macmillan nurse facilitator posts. METHOD: a case study design was adopted with data collection in two main phases. A range of data collection techniques were used, including interview, questionnaire and observation. Various sampling strategies were adopted for the different data collection methods. The use of multiple sources of data supported the triangulation of evidence in order to increase the strength and rigour of the analysis. FINDINGS: two Macmillan nurse facilitator posts were set up with the overall aims of enhancing the quality of palliative care to patients in the community by mobilising the existing skills and supporting the development of new competencies by community nurses. The Macmillan nurse facilitators have been active in three areas directly linked to community nurses' clinical practice: educational programmes, establishment of a palliative resource nurse network and support of clinical guidelines in nursing and primary care teams. The model of peer facilitation whereby the Macmillan nurse facilitators continue to work as district nurses for part of the week has been highly valued by community nurses. CONCLUSIONS: the single most important factor identified in facilitating successful implementation of these posts has been the 'dual role' nature of the posts. This has been key to acceptance of the posts by a generic workforce. The posts provide an effective model for supporting and enhancing the palliative clinical skills and knowledge of generic community-based staff.     

Palliative care in district general hospitals: the nurse's perspective

Most patients with a terminal illness die in hospital, yet the opinions of their prime carers are largely ignored. This study investigated registered nurses' perceptions of palliative care in district general hospitals. A random sample of 263 nurses was surveyed, using a pre-piloted questionnaire, and results showed that 70% of general ward nurses believe that managing care of the dying is an integral part of hospital care. However, their dissatisfaction with the care they give is reflected in the mere 8% who consider hospital an ideal setting for patients who are dying. Although nurses are confident in their physical/clinical role, dealing with psychosocial issues is more problematic. A minority feel confident in discussing death and dying with the patient. Barriers to optical palliative care on general wards were perceived as lack of appropriate education and training, work pressures, and lack of support from medical colleagues and managers.     

Primary care services received during terminal illness

The World Health Organization (1990) provides guidelines on what constitutes effective palliative care. However, it remains unclear whether people with a terminal illness living in their own homes have access to the services they need. This article reports on a study carried out in the United Kingdom on the views of people with a terminal illness (n = 15), their lay carers (n = 10) and bereaved carers (n = 19). Participants were asked about the primary care services they had received and their views on both helpful and unhelpful aspects of service provision. All terminally ill people in the study (except one) had cancer, which raises questions about access to palliative care services for non-cancer populations. Participants had contact primarily with district nurses, general practitioners and Macmillan nurses (specialist nurses). Few other services were received. A number of important issues arose from the data, indicating that lay carers in particular were not always receiving the information and support they needed in order to be effective caregivers.     

Perceptions of the role of the hospital palliative care team

AIM: The aim of this study was to understand staff perceptions of the role of the hospital palliative care team and to identify knowledge and confidence levels of general staff caring for patients with palliative care needs. METHOD: A survey questionnaire tool was used with a response rate of 51 per cent. Participants included nurses, health care assistants and doctors. RESULTS: The study highlighted several misconceptions about the role of the palliative care team, but demonstrated that the clinical staff surveyed were confident in their palliative care skills, with the exception of discharge planning, despite the fact that only 26 per cent of nurses reported having undergone training in palliative care. It identified that HCAs felt confident in caring for dying patients yet had little confidence in dealing with distressed relatives or speaking to patients and families about death. It was also interesting to note that trained nurses felt confident in their symptom control skills, and they rated training in this area as one of the top priorities. CONCLUSION: The findings have considerable implications for palliative care services. Professional education should continue to focus primarily on symptom control and communication skills training, but stress management training should be considered. Staff need to be clear about how to obtain advice and what support is available for cancer patients. Further research is required to understand the needs of HCAs and potential models for education and support.     

Improving palliative care services: a pragmatic model for evaluating services and assessing unmet need.

Evaluating local palliative care services and identifying gaps in services for patients are crucial to the development of services which enable people to die at home in a well-supported environment. A review of the local strategy for providing respite and support services for palliative care patients and their carers was carried out in one area of south-east England. The review comprised four elements: identification of services available; interviews with provider 'stakeholders'; interviews with patients and carers; questionnaire survey of general practitioners and district nurses. The findings and outcome are described. It is suggested that this approach could be adopted by health authorities to form one part of a comprehensive system of needs assessment. Alternatively, it could be used by groups of providers to evaluate existing services and to identify potential improvements to services. Advantages and disadvantages of the approach for both commissioners of such reviews and those carrying them out are discussed.     

District nurse involvement in providing palliative care to older people in residential care homes

Although less than 15% of older people in care homes die of a terminal disease such as cancer, many more die following a period of slow deterioration. In the UK, residents of care homes receive their nursing care from primary healthcare providers. This article reports on a study that describes how district nurses and care home managers define their responsibilities when caring for residents who are dying. The findings presented are from a detailed survey of 89 district nurse team leaders and 96 care home managers. District nurses were the most frequent health professionals visiting care homes, but less than half reported involvement in palliative care. The differing priorities and perceptions of participants regarding what constituted nursing and personal care influenced older people's access to palliative care services. Furthermore, the organization of care and the stability of the care home workforce affected participants' ability to establish ongoing supportive working relationships. It is argued that unless there is an organizational review of current practice, older people will continue to have unequal access to generalist and specialist palliative care.     

Macmillan nurse facilitators: establishing a palliative resource nurse network in primary care

AIM: to describe how a link nurse system for palliative care was established in primary care and report on an evaluation of the system undertaken as part of a larger evaluation of newly established Macmillan nurse facilitator posts. METHOD: a range of data collection techniques was used to collect information relating to the link nurse system including interview, questionnaire and observation. Various sampling strategies were adopted for the different data collection methods. This paper reports on the findings of semi structured interviews with groups of district nurses and link nurses, a questionnaire to district nurses, telephone interviews with a sample of questionnaire respondents and site observations. FINDINGS: the Macmillan nurse facilitators have established, supported and maintained a robust palliative resource nurse (PRN) group within primary care. The majority of practising clinical district nursing staff have used this important resource for a variety of reasons over the past four years. The model developed provides an opportunity for professional development for the PRNs. This initiative has been viewed as a very positive development and has been utilised for disseminating information, research and audit purposes from clinicians both within and out-with primary care. CONCLUSIONS: The establishment of a palliative resource network within primary care has been successful. It has provided an effective and efficient means of disseminating information across a large workforce and extensive geographical area. The development of a clear structured model benefits both the PRNs and the organisation by providing clear expectations of the role while offering a framework for professional development.     

End of life care: a discursive analysis of specialist palliative care nursing

AIM: The aim of this paper is to consider alternative approaches to service delivery for patients with chronic life-limiting illnesses other than cancer. It will also discuss the issues that arise when considering specialist palliative care services within a broader public health context in the United Kingdom. BACKGROUND: Contemporary specialist palliative care in the United Kingdom can be said to have two main client groups: the majority are people with a diagnosis of cancer, and a minority are those with a number of other chronic illnesses. From the evidence to date, patients dying from chronic, non-malignant disease experience a considerable number of unmet needs in terms of symptom control and psychosocial support. Although debates in the literature over the last decade have challenged the focus of specialist palliative care services on patients with a cancer diagnosis, only a minority of those with other chronic illnesses receive specialist palliative care services. DISCUSSION: Current models of specialist palliative care may not be the most appropriate for addressing the complex problems experienced by the many patients with a non-cancer diagnosis. We suggest that care should be structured around patient problems, viewing specialist palliative care as a service for those with complex end of life symptoms or problems. A role for innovative nurse-led care is proposed. CONCLUSION: Reframing the approach to specialist palliative care in the United Kingdom will require great effort on the part of all health and social care professionals, not least nurses. Critical and creative thinking are prerequisites to the development of new models of working. We suggest that a more coherent approach to research and education is required, in particular strategies that explore how patients and nurses can work together in exploring experiences of illness in order to develop more proactive approaches to care.     

Evaluation of the effectiveness of UK community pharmacists' interventions in community palliative care

INTRODUCTION: In 1997, the Royal Pharmaceutical Society of Great Britain Working Party reported that UK community pharmacists had a crucial role in effective medicines management and effective symptom control for those receiving palliative care in the community. However, prior to the integration of community pharmacists into the community palliative team, it is necessary to evaluate the effectiveness of their pharmaceutical interventions. AIM: To assess the effectiveness of community pharmacists' clinical interventions in supporting palliative care patients in primary care using an independent multidisciplinary panel review. METHODS: Patients with a life expectancy of less than 12 months were each registered with a single pharmacy and their consent was obtained for the community pharmacists to access their general practitioner (GP) case records. The community pharmacists received training in palliative pharmaceutical care and documenting interventions. The trained community pharmacists provided palliative pharmaceutical care to the recruited patients. At the end of a 10-month period, the clinical interventions were reviewed by an independent multidisciplinary expert panel consisting of a palliative care consultant, a Macmillan nurse (community palliative care nurse) and a hospital pharmacist with special interest in palliative care. RESULTS: Fourteen community palliative care teams (including community pharmacists, GPs and community nurses) took part in the study and 25 patients were recruited over the 10-month recording period. All but one patient had a diagnosis of cancer; the other patient had chronic obstructive pulmonary disease. By the end of the project, 14 patients had died. Community pharmacists recorded a total of 130 clinical interventions. Thirty interventions were excluded as insufficient information had been documented to allow review by the panel. Eighty-one per cent of the interventions were judged by the expert panel likely to be beneficial. However, 3% were judged likely to be detrimental to the patients' well-being. CONCLUSIONS: Most of the clinical interventions made by the community pharmacists for palliative pharmaceutical care were judged by the expert panel as being likely to be beneficial. The result supports the view that when community pharmacists are appropriately trained and included as integrated members of the team, they can intervene effectively to improve pharmaceutical care for palliative care patients.     

Palliative care nursing in rural and urban community settings: a comparative analysis

Nurses have key roles in the coordination and delivery of community-based palliative care. The purpose of this study was to examine the differences between rural and urban community nurses' delivery of palliative care services. A survey was distributed to 277 nurses employed by a community agency in Ontario, Canada, and a 60% response rate was obtained. Nurses reported spending 27% of their time providing palliative care. Rural and urban nurses had similar roles in palliative care but rural nurses spent more time travelling and were more confident in their ability to provide palliative care. Both groups of nurses reported moderate job satisfaction and moderate satisfaction with the level of interdisciplinary collaboration in their practice. Several barriers to and facilitators of optimal palliative care provision were identified. The study results provide information about the needs of nurses that practise in these settings and may provide a basis for the development of strategies to address these needs.     

Palliative care in the community: the challenge for district nurses

Palliative care is expanding out of the hospice, and out of the narrow confines of its association with cancer. It should be a part of all care. District nurses are ideally placed to implement and coordinate palliative care in the community, making use of the talents of many other agencies and professionals. However, because of a lack of communication between these agencies, there is confusion about their roles, and many patients may not be receiving optimal care. This article argues that by promoting interagency and interprofessional communication and cooperation, district nurses can strengthen their role at the heart of palliative care provision in the community.     

Mitigating opioid errors in inpatient palliative care: A qualitative study

BackgroundOpioids are a high-risk medicine used in high doses and volumes in specialist palliative care inpatient services to manage palliative patients’ pain and other symptoms. Despite the high volume of opioid use in this care setting, serious errors with opioids are exceedingly rare. However, little is known about the factors that mitigate opioid errors in specialist palliative care inpatient services.AimTo explore palliative care clinicians’ perceptions of factors that mitigate opioid errors in specialist palliative care inpatient services.Methods and designA qualitative study using focus groups and semi-structured interviews.Participants and settingRegistered nurses, doctors, and/or pharmacists (‘clinicians’) who were involved with and/or had oversight of the services’ opioid delivery and/or opioid quality and safety processes, employed by one of three specialist palliative care inpatient services in metropolitan NSW.FindingsFifty-eight participants took part in this study, three-quarters (76%) of which were palliative care nurses. A positive opioid safety culture was central to mitigating opioid errors in specialist palliative care inpatient services. This culture of opioid safety was founded on clear and consistent safety messages from leadership, clinicians empowered to work together and practise safely, and a non-punitive approach to errors when they occurred. The clinical nurse educator was seen as pivotal to shaping, driving and reinforcing safe opioid delivery practices across the palliative care service.ConclusionCreating and sustaining a positive opioid safety culture, and promoting a non-punitive approach to opioid error and reporting, is essential to mitigating opioid errors in the specialist palliative care inpatient setting.