Rural palliative care needs: a survey of primary care professionals in Powys, Wales

The county of Powys in rural Wales has a population of about 125,000 people and no district general hospitals. In 1999, 12 Macmillan general practitioner clinical facilitators were appointed as part of a pilot project aiming to provide a coordinated framework for the commissioning of specialist cancer and palliative care services, extended clinical care to cancer and non-cancer patients, and an educational intervention to raise the standards of generalist palliative care. A survey of facilitators, general practitioners, district nurses and community hospital nurses was undertaken early in the project. Palliative care formed a small but significant part of respondents' workload. Specialist palliative care services were seen as helpful but distant from the patients. Pain and symptom control were seen to be problematic in patients with diagnoses other than cancer. Services that provided 24-hour nursing care at home were thought to be in need of development by most respondents.     

Roles, service knowledge and priorities in the provision of palliative care: a postal survey of London GPs

OBJECTIVES: To explore general practitioners' (GPs) current involvement in and attitudes towards the provision of palliative care in primary care. METHODS: Postal survey of 356 London-based GPs, assessing attitudes towards palliative care provision, district nursing and specialist palliative care services, and priorities for future service development. RESULTS: Currently, 65% of GPs were providing palliative care to patients on their list; 72% agreed or strongly agreed palliative care was a central part of their role; and 27% wanted to hand care over to specialists. Most GPs (66%) disagreed with the statement that 'palliative care is mainly district nursing (DN) work'. Many were unaware of out-of-hours DN and specialist palliative care services. Multi-variable analysis found four GP characteristics--larger practice size, more years experience as a GP, receipt of palliative care education, and current provision of palliative care--were associated with agreement that palliative care was central to a GP's role. CONCLUSION: A minority of NHS GPs in London would rather have no involvement in palliative care in primary care. Knowledge of current services for palliative care is generally poor among GPs. These findings highlight potential gaps in services, particularly in small practices. Specialists will need to consider these factors in working with GPs to develop primary palliative care and to enable greater access to specialist 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.     

Palliative care in non-malignant disease: a pragmatic response

With increasing requests for palliative care provision for all patients regardless of diagnosis, professionals within specialist palliative care services and palliative care nurse specialists need to consider how they will respond. Current palliative care is considered inequitable as the majority of palliative care services do not include those with non-malignant disease. This article examines a number of issues concerning the extension of palliative care to this patient population. It considers the needs of non-cancer patients, palliative care responsibilities, resource implications, professional knowledge and responsibilities, and possible action. Recommendations include the need for further research to explore these patients' needs and the role of specialist palliative care services. Suggestions regarding how Macmillan nurses could respond to the increased demand for palliative care services are offered. Within the current financial climate, the only realistic response for the Macmillan nurse is to act as a consultant working in collaboration with other health professionals outside the palliative care specialty.     

How and why do GPs use specialist palliative care services?

This study presents findings on the interaction of generalists and specialists within palliative care. General practitioners (GPs) are central to community palliative care as most of the last year of a patient's life is spent at home under the care of the primary health care team. GPs see few palliative care patients each year, however, and access to specialist palliative care services for support, advice and referral can be important particularly to support patients who wish to die at home. The aim of this study was to explore GP use of and attitudes towards specialist palliative care services through semi-structured interviews in inner city, urban and rural areas. It was part of a longitudinal evaluation of an educational intervention, and the quantitative components are reported elsewhere. Sixty-three GPs were interviewed, having been sampled randomly from inner city, urban and rural health authority district lists. While most interviewees reported using specialist palliative care services as a resource, other models of use included working together as an extended team, seldom using such services and handing over care or responsibility entirely. Availability of services clearly shaped use, but previous experience and expectations of easy access were also important. Patterns of use were not necessarily fixed, but dependent also on the differing needs of and wishes of patients and carers. Specialist palliative care services need to be aware of such variations in ways of working and to consider the implications for the capacity and flexibility of both primary care and specialist service provision.     

Building bridges in palliative care: evaluating a GP Facilitator programme

The objective of this study was to evaluate the impact of the Macmillan GP Facilitator Programme in Palliative Care on the knowledge, attitudes and confidence in symptom control of general practitioners (GPs), communication with patients and out-of-hours practice. GP Facilitators work on average for two sessions a week with practices in their locality. The design included a before and after study, with geographical controls matched on type of area (inner city, urban and rural) and broadly on Jarman scores using postal questionnaires sent to GPs. Scores measured change in GP awareness, attitudes and practice over two years of the intervention, derived from Likert scale responses to the postal questionnaires. Although overall few significant results were found, we did identify an increase in the use of palliative care guidelines in Facilitator districts, together with an increase in awareness of day care. The programme was associated with increased positive attitudes towards specialist palliative care services and results suggested increased satisfaction with out-of-hours services for patients. No change was found for confidence in symptom control and communication over diagnosis with cancer patients was less than in control districts. The design also incorporated a qualitative component, and from this we found the Facilitator programme to be popular with local GPs who valued the support of a colleague who knew the demands and constraints of general practice. In conclusion, we have demonstrated an impact of the GP Facilitator programme on GP awareness of, use and increased positive attitudes towards specialist palliative care services. By improving communication between primary and specialist palliative care, the programme should contribute substantially to improved care of the dying at home.     

Exploring nursing outcomes for patients with advanced cancer following intervention by Macmillan specialist palliative care nurses

BACKGROUND: Little information exists about the outcomes from nursing interventions, and few studies report new approaches to evaluating the complex web of effects that may result from specialist nursing care. AIMS: The aim of this study was to explore nursing outcomes for patients with advanced cancer that may be identified as resulting from the care of a Macmillan specialist palliative care nurse. METHODS/INSTRUMENTS: Seventy-six patients referred to 12 United Kingdom Macmillan specialist palliative care nursing services participated in a longitudinal study of their care over 28 days. Patients were interviewed and completed the European Organization for Research on Treatment of Cancer Quality of Life Scale and the Palliative Care Outcomes Scale at referral, and 3, 7 and 28 days following referral to a Macmillan specialist palliative care nursing service. A nominated carer was interviewed at baseline and 28 days. Notes recorded by Macmillan specialist palliative care nurses in relation to each patient case were analysed. FINDINGS: Significant improvements in emotional (P = 0.03) and cognitive functioning (P = 0.03) were identified in changes in patients' European Organization for Research on Treatment of Cancer Quality of Life Scale scores, and in Palliative Care Outcomes Scale patient anxiety scores (P = 0.003), from baseline to day 7. Analysis of case study data indicated that overall positive outcomes of care from Macmillan specialist palliative care nursing intervention were achieved in 42 (55%) cases. STUDY LIMITATIONS: Sample attrition due to patients' deteriorating condition limited the value of data from the quality of life measures. The method developed for evaluating nursing outcomes using data from patient and carer interviews and nursing records was limited by a lack of focus on outcomes of care in these data sources. CONCLUSIONS: A method was developed for evaluating outcomes of nursing care in complex situations such as care of people who are dying. Positive outcomes of care for patients that were directly attributable to the care provided by Macmillan specialist palliative care nurses were found for the majority of patients. For a small number of patients, negative outcomes of care were identified.     

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.     

Improving access to clinical information in after hours community palliative care.

OBJECTIVE: To improve access to clinical information for nurses and doctors providing after hours community palliative care in a regional Australian setting. DESIGN: This was an action research project designed to improve collation and distribution of succinct, pertinent and timely information about unstable palliative care patients to nurses and general practitioners (GPs) involved in after hours care. Each week day, each patient's purpose-designed single-page information sheet was updated on the community palliative care service computers. This sheet was designed to give key abstracted information on each patient's history, current condition, treatment and plans for future care. Patients considered to be unstable had their sheets faxed to the GPs on call. SETTING AND SUBJECTS: This procedure was followed for all adult patients admitted to Ballarat Hospice Care Inc, Victoria, Australia between June and August 2004. The nurses and Executive Officer at Ballarat Hospice Care Inc and thirteen GPs from the Ballarat and District Division of General Practitioners were involved in the study. MAIN OUTCOME MEASURES: Surveys and feedback from palliative care nurses and GPs. RESULTS: A one-page information sheet provided essential clinical information to nurses and doctors. The nurses' confidence markedly increased with ready access to the information sheets on a hand held Palm Pilot. The nurses also reported improved outcomes for patients using this approach and there was favourable feedback from GPs. CONCLUSIONS: This project led to the development of a simple, effective and low cost means of improving communication between professionals caring for palliative care patients after hours.     

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.     

Which terminally ill cancer patients in the United Kingdom receive care from community specialist palliative care nurses?

This study investigates how cancer patients who receive care from community specialist palliative care (CSPC) nurses differ from those who do not. This was achieved by secondary data analyses from the Regional Study of Care for the Dying, a retrospective interview survey of deaths in 1990 in 20 nationally representative health districts. Interviews were obtained for 2,074/2,915 (71%) of randomly selected cancer deaths; 574 (27.8%) were reported to have received care from a Macmillan nurse, hospice home-care nurse, or other community specialist palliative care nurse. Using logistic regression analysis 10 factors were found to predict independently CSPC use. Being dependent with dressing/undressing, needing help at night, having constipation, experiencing vomiting/nausea, being mentally confused, having breast cancer and being under the age of 75 years increased the likelihood of receiving CSPC. Having a lymphoma, leukaemia or myeloma, a brain tumour and being dependent on others for help with self-care for more than 1 year decreased the likelihood. The use of CSPC nurses to provide expertise in symptom control and to support families of dependent patients is consistent with the aims of palliative care, and therefore appears appropriate. Further research is, however, needed to investigate the apparent age bias in access to these services, and to ensure that CSPC services are provided on the basis of need, irrespective of patient age.     

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.     

Cooperating with a palliative home-care team: expectations and evaluations of GPs and district nurses

BACKGROUND: Palliative home-care teams often cooperate with general practitioners (GPs) and district nurses. Our aim was to evaluate a palliative home-care team from the viewpoint of GPs and district nurses. METHODS: GPs and district nurses received questionnaires at the start of home-care and one month later. Questions focussed on benefits to patients, training issues for professionals and cooperation between the home-care team and the GP/ district nurse. A combination of closed- and open-ended questions was used. RESULTS: Response rate was 84% (467/553). Benefits to patients were experienced by 91 %, mainly due to improvement in symptom management, 'security', and accessibility of specialists in palliative care. After one month, 57% of the participants reported to have learnt aspects of palliative care, primarily symptom control, and 89% of them found cooperation satisfactory. Dissatisfaction was caused mainly by lack of information from the home-care team to primary-care professionals. CONCLUSION: GPs and district nurses welcomed the palliative home-care team and most experienced benefits to patients. Strengthened communication, initiated by the home-care team would enhance cooperation.     

Prescribing by specialist nurses in cancer and palliative care: results of a national survey

BACKGROUND: This study investigates Macmillan nurses' views on nurse prescribing in cancer and palliative care and explores perceived motivators and barriers to training for and the implementation of this extended nursing role. METHOD: National postal survey of 2252 Macmillan nurses in the UK. RESULTS: A response rate of 70% (1575) was achieved. Eleven percent (168 of 1575) of Macmillan nurses surveyed were trained as extended formulary independent nurse prescribers. Half (88 of 168) of the Macmillan nurses who could prescribe from the extended formulary were prescribing, representing just 6% (88 of 1575) of the sample. Training deficits highlighted included poor organization and insufficient length, depth and specificity of courses (to meet the needs of nurses working in palliative care) and a lack of medical mentorship. Among Macmillan nurses who had not undergone extended formulary independent nurse prescribing training, 25% (335) perceived that prescribing was not part of their specialist nursing role. A further 40% (538) expressed reluctance to undergo training. CONCLUSIONS: A clear lack of enthusiasm amongst specialist nurses in cancer and palliative care to undertake prescribing training was identified. It is noteworthy that half of the Macmillan nurses trained as extended formulary independent nurse prescribers were not prescribing. Since government targets for nurse prescribing are not yet being met, these findings raise important questions concerning whether extended nurse prescribing is likely to be a successful initiative in cancer and palliative care.     

General practitioners' and district nurses' views of hospital at home for palliative care

Cambridge Hospital at Home (CH@H) provides 24-h nursing in a patient's own home to patients requiring terminal and palliative respite care. To investigate views of the service, we surveyed all GPs and district nurses (DNs) in the catchment area of the scheme. Responses were received from 85% of DNs and 65% of GPs. The majority of DNs (93%) and GPs (57%) had patients referred to CH@H, whereas 90% of DNs and 42% GPs had patients admitted. The most commonly reported reason for non-referral was lack of availability of places (GPs 62%; DNs 63%). Ninety per cent DNs and 84% GPs rated continuation of the scheme as important. The most important reported benefits were 24-h care (GPs 84%; DNs 82%) and help in keeping patients at home (GPs 69%; DNs 83%). Seventy-four DNs also considered help in arranging discharge to be important. Almost half GPs and DNs considered CH@H worse than other NHS services in terms of availability and limits on the duration of care. Whilst 65% of DNs thought CH@H had reduced workload, 77% GPs reported it had made no difference or had increased it. Most indicated that CH@H made a difference in allowing patients to die at home (GPs 60%; DNs 68%). The CH@H scheme is viewed as beneficial for patients requiring palliative care at home, although GPs and DNs expressed realistic reservations about specific aspects of the scheme. With the emergence of Primary Care Trusts, NHS commissioning of hospice at home services will more firmly rest with primary care practitioners, who on balance clearly prize them.     

Macmillan cancer and palliative care specialists: their practice development support needs

This study explores the practice development support needs of specialist nurses working in cancer and palliative care, in order to assist in the improvement of cancer and palliative care services. Using a whole population survey, postal questionnaires were sent to 1144 Macmillan post holders in England, Scotland and Wales. There was a 75.7% response rate. Three focus groups consisting of a total of 21 respondents were also used as a secondary form of data collection to supplement and expand upon the questionnaire responses. The findings reveal substantial practice development needs, particularly in relation to organizational support and guidance, education support, resources and access to evidence. The study demonstrates that nurses felt unable to engage in improving care unless initiatives were supported in practical ways by their organizations.     

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.     

How well do general practitioners deliver palliative care? A systematic review

General practitioners (GPs) deliver the majority of palliative care to patients in the last year of life. This article seeks to examine the nature of GP care, perceptions of the GPs themselves and others of that care, the adequacy of palliative care training, issues relating to accessibility of GPs to palliative care patients, and strategies that may be of use in encouraging more effective delivery of palliative care by GPs. Medline and PubMed databases from 1966 to 2000 were searched, and 135 references identified. Sixty-six of these described studies relevant to GP palliative care. GPs value this part of their work. Most of the time, patients appreciate the contribution the GP makes to palliative care particularly if the GP is accessible, takes time to listen, allows patient and carer to ventilate their feelings, and is seen to be making efforts made regarding symptom relief. However, reports from bereaved relatives suggest that palliative care is performed less well in the community than in other settings. GPs express discomfort about their competence to perform palliative care adequately. They tend to miss symptoms which are not treatable by them, or which are less common. However, with appropriate specialist support and facilities, GPs have been shown to deliver sound and effective care. GP comfort working with specialist teams increases with exposure to this form of patient management, as does the understanding of the potential other team members have in contributing to the care of the patient. Formal arrangements engaging GPs to work with specialist teams have been shown to improve functional outcomes, patient satisfaction, improve effective use of resources and improve effective physician behaviour in other areas of medicine. Efforts by specialist services to develop formal involvement of GPs in the care of individual patients, may be an effective method of improving GP palliative care skills and appreciation of the roles specialist services can play.     

Meeting complex needs: an analysis of Macmillan nurses' work with patients

Macmillan nurses, working as Clinical Nurse Specialists (CNS), are in many ways the public face of specialist palliative care in the UK. However, the way in which they manage their clinical workload is not well understood. Questions about this aspect of their work have emerged from a large-scale evaluation of Macmillan nursing in 12 sites in the Trent and Thames regions of the UK, funded by Macmillan Cancer Relief. This article focuses on how Macmillan nurses enact their patient care role, drawing on caseload data, diaries and semi-structured interviews from the wider evaluation. It concentrates on the following issues: characteristics of referred patients; nature of interventions given; division of time between different aspects of the CNS role; nurses' perceptions of their patient-care role. Findings suggest that activities associated with direct patient care account for the majority of nurses' time, with little time spent in any other individual aspect of the CNS role. The delivery of care to older patients at the end of life is a major part of Macmillan nurses' clinical role. Issues relating to the educational and support needs of Macmillan nurses are raised.