The contribution of psychologists to specialist palliative care

Current approaches to multidisciplinary working in specialist palliative care generally acknowledge the need for psychological care and the contribution of specialist psychological services. Embedded within an integrated approach to care, there has long been a recognition of the psychological needs of patients and their informal caregivers, although there has been less consensus on how these needs should be addressed. Confusion appears to exist regarding the boundaries between psychological support and psychological interventions, and which members of the multidisciplinary team are best qualified to provide them. This article aims to explore the contribution of psychologists and psychological services to specialist palliative care. It offers a conceptual model to help categorize psychological care in hospices and specialist palliative care services. It seeks to help define the boundaries between general psychological support and care that may be offered by nurses and other health care professionals, and the specialist expertise of psychologists.     

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 in the community for children with cancer in South East England.

In-depth interviews and discussions were held with 40 different professionals in South East England involved in managing palliative care for children with cancer in the community. Participants included paediatric oncologists and outreach nurse specialists in tertiary centres, paediatricians in shared care units, children's community nurses, general practitioners, social workers and child psychologists. The research examined palliative care services available in the region, exploring attitudes to both current provision and possible service improvements. Providing palliative care in the community involves multi-agency collaboration and the study highlighted a range of different approaches to case management with the diversity of resources available. Key improvements proposed by health-care professionals included: better communication and liaison between all the professionals involved; clearer allocation of roles and responsibilities; 24-hour availability of specialist advice on palliative care for children with cancer; faster access to social work and psychology services at the community level; continuity of nursing and respite care. The provision of specialist local palliative care services for children with cancer was generally rejected. The participants favoured improving community palliative care for all children with life-limiting or life-threatening conditions with community nursing teams providing continuity of care and outreach nurses providing specialist advice and support.     

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.     

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.     

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.     

Palliative care provision for people with intellectual disabilities: a questionnaire survey of specialist palliative care professionals

There is a growing interest in the palliative care needs of people with intellectual disabilities (ID). There are indications that palliative care staff face particular problems providing care to this group, but empirical data about the extent of the problem are lacking. This study aims to gain insight into the current use of palliative care services by people with ID in London, to identify the prevalence and severity of problems faced by palliative care professionals and to identify strategies that will facilitate an improvement in access and delivery of palliative care services to people with ID. A postal questionnaire was developed for this study and returned by 543 professionals working in 53 specialist palliative care services in London (57% response rate). Sixty-seven percent of respondents had supported a patient with ID at some point in their palliative care career. Problems arising from the patient's difficulty in understanding the illness and treatment were reported as the most pertinent. Other prevalent problems included difficulty around communication, assessment and patient fear. Respondents emphasised the need for collaboration with carers and other services. Link worker schemes, training and access to background information were seen as most helpful. The authors conclude that palliative care services appear to be under-used by people with ID. There is a distinct set of problems related to the provision of palliative care for people with ID. Palliative care services should assess the nature and level of their service provision for people with ID. Future research should include epidemiological studies to assess need and include people with ID as informants to evaluate the effectiveness of palliative care provision.     

Caring for patients dying at home from heart failure: a new way of working

This article explores the difficult journey that heart failure patients frequently experience when trying to access palliative care. It describes how a team of Macmillan and heart failure nurse specialists attempted to address the problem using the specialist role to effect change. Individual and group learning needs were identified and addressed while the use of reflective practice and group working helped the nurses to manage and implement change. This project, with management support, empowered the specialist teams to think creatively about nursing practice and improve patient care. It has encouraged working with clinical nurse specialists from other disciplines, thus avoiding a narrowness of outlook. Although this project initially focused on a small number of patients, it has enabled the teams to become established in partnership working; the collaborative approach to providing palliative care for end-stage cardiac failure patients has since continued to grow and flourish. It is hoped that, in the future, further studies can take place to gain more detailed information from patients and their families about how partnership working can continue to meet the needs of this group.     

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.     

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.     

Heart failure and palliative care services working in partnership: report of a new model of care

It is widely acknowledged that people with advanced heart failure have at least as great a need for supportive and palliative care as those with malignant disease. However, specialist palliative care services are seldom involved in their care in the UK. We describe a three-year collaboration between community-based heart failure nurse specialists and existing specialist palliative care services. In the model of care that has evolved, the heart failure nurses remain key workers throughout the illness. They run a regular support group for patients and carers in the setting of a hospice day therapy unit, referring patients for other palliative care involvement as necessary. Activity data and the results of patient interviews are presented. These suggest that the model is a cost effective, sustainable way of providing high quality care for people with heart failure.     

Palliative care nursing for children in the UK and Ireland

Currently, there are many changes taking place in the area of paediatric palliative care. These include the role of the nurse, development of national policies, and recommendations for the future of paediatric palliative care. This article discusses palliative care for children with life-limiting conditions in the UK and Ireland, highlights national and international developments in this area, describes current services, and makes recommendations for future developments. Paediatric palliative care should be holistic, family centred and tailored to meet the needs of each child and family. Palliative care should promote autonomy and allow informed choices regarding end-of-life care. Palliative care should begin at the time of diagnosis and continue beyond illness, through the bereavement process. It should be adaptable to allow care delivery in any setting; home, hospice or hospital. Health professionals providing paediatric palliative care should be appropriately trained in this specialist field and the best interests of the child should always be at the forefront of care.     

The level of need for palliative care: a systematic review of the literature

Palliative care services have developed rapidly over the past 30 years, with little evaluation as to how needs have been met by these new services. As part of a systematic review of palliative care, evidence of the needs of patients and carers has been evaluated from the current literature. Of the total of 673 articles related to the 10 areas within the main review, 64 provided evidence on the need for palliative care services over the period from 1978 to 1997. A further nine articles were added in November 1998 after the end of the study of update the review with more recent research. Need can be assessed in one of two ways: either by adopting an epidemiological approach or by examining health service usage. In the former, evidence is provided on disease-specific mortality, and related to the duration of symptoms prior to the patient's death. As an example of this, it is suggested that services may need to provide pain control for 2800 patients per million (p/M) population dying from cancer each year and 3400 p/M with noncancer terminal illness. Using health service usage as an indicator of need, 700-1800 p/M with cancer and 350-1400 p/M with noncancer terminal illness would require a support team or specialist palliative home care nurse, with 400-700 cancer p/M and 200-700 noncancer p/M requiring inpatient terminal care. Studies indicate that at present usage, palliative care is being provided by 40-50 hospice beds/M. Despite this provision, there remains evidence that in certain areas of care such as pain control, there still remains a high degree of unmet need.     

Audit on discharging patients from community specialist palliative care nursing services

Discharging patients from community specialist palliative care services is a contentious issue. Although some specialist nursing teams discharge patients at the earliest opportunity and are open to re-referral, others retain patients as "pending", i.e. patients do not receive regular contact or intervention but remain on the caseload until a need arises. This anomaly is not surprising given the lack of evidence of good practice in the discharge of patients who no longer have specialist needs. This article describes an audit by a community specialist palliative care nursing team of patients discharged from their caseloads over a 6-month period from January to June 2002. The aims of the audit were to compare the reasons for discharge given by the nurse specialists with existing discharge criteria and to provide data for guidelines for good practice in discharging patients. The rate of re-referral for the discharged cohort was also measured. There were 199 patient discharges in the audit period with 23 being re-referred within 6 months of discharge. The reasons for discharge were generally broader than the discharge criteria and the nurses frequently emphasized to the patient, the family and primary carers that re-referral was welcomed as needs arise. The need for multicentre discharge audits was also highlighted.     

Systematic review of the problems and issues of accessing specialist palliative care by patients, carers and health and social care professionals

OBJECTIVES: To determine the problems and issues of accessing specialist palliative care by patients, informal carers and health and social care professionals involved in their care in primary and secondary care settings. DATA SOURCES: Eleven electronic databases (medical, health-related and social science) were searched from the beginning of 1997 to October 2003. Palliative Medicine (January 1997-October 2003) was also hand-searched. STUDY SELECTION: Systematic search for studies, reports and policy papers written in English. DATA EXTRACTION: Included papers were data-extracted and the quality of each included study was assessed using 10 questions on a 40-point scale. RESULTS: The search resulted in 9921 hits. Two hundred and seven papers were directly concerned with symptoms or issues of access, referral or barriers and obstacles to receiving palliative care. Only 40 (19%) papers met the inclusion criteria. Several barriers to access and referral to palliative care were identified including lack of knowledge and education amongst health and social care professionals, and a lack of standardized referral criteria. Some groups of people failed to receive timely referrals e.g., those from minority ethnic communities, older people and patients with nonmalignant conditions as well as people that are socially excluded e.g., homeless people. CONCLUSIONS: There is a need to improve education and knowledge about specialist palliative care and hospice care amongst health and social care professionals, patients and carers. Standardized referral criteria need to be developed. Further work is also needed to assess the needs of those not currently accessing palliative care services.     

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.     

Community specialist palliative care: experiences of patients and carers

Specialist palliative care provides a range of services for patients and their carers who have complex needs. There is a need to identify what patients and carers gain from contact with the specialist palliative care nurse (SPCN) and what aspects of that care have a positive impact on their quality of life (QoL). The aims of the study were to gain insightful and credible accounts of participants' experiences of the SPCN; to consider those dimensions of care which impact on satisfaction; to discover whether the SPCN provides improvements in QoL and to explore whether experiences match expectations. A qualitative approach focused on the experience and individual meaning; it is the individual narratives produced by each participant that are the rich and interesting outcomes of this study. Both patients and carers reported satisfaction at being given time and being listened to, with the interviewees using words and phrases such as 'confidence', 'trust', knowledge', 'listens to' and 'a sense of being there'. The study shows the patient and carers' lack of knowledge about specialist palliative care while confirming the positive influence of the SPCN.     

Caring for families with a family history of cancer: why concerns about genetic predisposition are missing from the palliative agenda

Care of the family is integral to palliative care, but little attention has been paid to the way nurses, or other healthcare professionals, are responding to the needs of families who are concerned about whether their family history of cancer is associated with an inherited genetic predisposition. This paper discusses how palliative care nurses perceive the care needs of patients with a family history of cancer. Data were collected through recorded, semi-structured interviews with 10 nurses who had worked in specialist palliative care. The findings show that there are cogent arguments and concerns about raising the issue of an inherited genetic predisposition at the end of life (especially when the patient is close to death and there is a lack of knowledge about genetics). Nevertheless, exemplar cases are used to illustrate the reasons why it is important that nurses working in specialist palliative care settings are aware of the needs of this patient group. The paper highlights that nurses not only need an appropriate knowledge base but also an insight of what can be achieved when supporting patients with a family history of cancer.     

Lung cancer, caring for the caregivers. A qualitative study of providing pro-active social support targeted to the carers of patients with lung cancer

INTRODUCTION: Carers of patients with lung cancer often have a short time to access the support they require. The Macmillan Carers Project (MCP) was set up to provide non-clinical social support targeted in the community to the carers of patients with lung cancer and this study describes its evaluation. METHODS: Prospective case study using interviews with the carers, project workers and health and social care professionals to obtain qualitative data for thematic analysis. 81 patients' carers received support from the MCP; 20 carers, 2 MCP workers and their manager and 10 other professionals (chest consultant physician, lung cancer clinical nurse specialist, GP, four Macmillan nurses, hospice social worker and two community social workers) were interviewed. RESULTS: Patients were predominantly male (62%), mean age 71 years and carers were predominantly female (70%) mean age 63 years. Carers identified the MCP as providing emotional support, more time, practical help, financial advice, information and back-up for a myriad of problems. Although there was some overlap with other services, the MCP was valued by carers and professionals as filling a gap in social care. CONCLUSIONS: The unique aspect of this study was support targeted to the carers of a single cancer site (lung) rather than generic cancer support. As lung cancer may progress rapidly, patients and their carers have a short time to gather new information, access services and adjust to their new circumstances and roles. By focusing on the needs of carers from the time of lung cancer diagnosis, we have shown that the MCP was a valued additional service, well received by carers, patients and professionals.