Nursing the dying within a generalist caseload: a focus group study of district nurses

BACKGROUND: Community nurses (members of UK District Nursing teams) have a key role in the provision of palliative care in the community in the UK. However, their views about delivering palliative care within their generalist workload have not been assessed. OBJECTIVES: To explore community nurses' perceptions of their palliative care role, and their provision of such care within the context of their wider generalist workload. DESIGN: Focus group study. SETTING: Four Primary Care Trusts in London, UK. PARTICIPANTS: A purposive sample of 51 community nurses. METHODS: Nine focus groups (four to seven participants in each) were conducted between 2003 and 2004. Data were analysed using the framework approach. RESULTS: We identified five broad themes. Community nurses felt they had a central role in the provision of palliative care to patients at home. Many felt this role was not recognised by other health care professionals and managers. Palliative care was identified as unpredictable and time-consuming within a pressurized context characterised by staff shortages and consequent lack of time. Whilst rewarding, palliative care took its toll on nurses' emotions, compounded by a perceived lack of formal support. Finally, undertaking palliative within a generalist workload created additional pressures for community nurses. CONCLUSIONS: The integration of palliative care into routine generalist caseloads generated workload stresses in time and emotion. Community nurses felt their palliative care role and its impact on workload was not adequately acknowledged. Palliative care specific support mechanisms and ways of working may be necessary to meet patients' and professionals' expectations of effective, compassionate care at the end of life.     

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.     

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.     

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.     

Influence of Age and Parity on the Emotional Care Given to Women Experiencing Miscarriages

Obstetrical nurses (N = 309) participated in a study of the hypothetical influence of patients' age and parity status on nurses' emotional care for women who had experienced miscarriage. Vignettes in which age and parity were varied were mailed to the sample along with a questionnaire. After factor analysis, three measures of emotional care were used as the dependent variables: emotional seriousness, priority of care, and emotional support. Analysis of variance showed that the parity status of the woman was a significant variable in the nurses' perceptions of emotional seriousness and priority of care, but did not affect the nurses' perceptions of the need for emotional support. Age was not a significant variable in the three measures of emotional care.     

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.     

Reviewing a new model for delivering short-term specialist palliative care at home

The transition period between inpatient and community care is often a time of anxiety for patients receiving palliative care and their families. The team at Michael Sobell House designed and implemented a new community palliative care nursing service in order to ease the difficulties associated with moving between these settings. The new model offered short-term support for nurses trained in specialist palliative care who provide hands-on care, psychological support, night nursing or advice and support. The service supplemented existing community teams in order to offer a quick response to patient need. The service was evaluated at the end of the first year using two methods: an audit examining the first year's activity; and a questionnaire to health professionals who had used the service. Insight into the origins of referrals, the tasks performed by the outreach nurses and the aims of each patient episode were gained. Healthcare professionals' feedback was positive and gave some areas for suggested improvement. Reflections included issues relating to collaborative working between services, gaining a greater understanding of the problems associated with facilitating a home death and exploring potential areas of service expansion.     

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.     

Nurses' and patients' perceptions of expert palliative nursing care

AIM: This paper reports a study of the perceptions of patients and nurses of palliative care and, in particular, the concept of the expert palliative nurse. BACKGROUND: Palliative care is a growing specialty and is practised globally. There is, however, limited information on patients' views about palliative care. While the idea of expertise in nursing is not new, few studies have explored the concept of the expert nurse in palliative care. Some evidence exists on palliative nurses' perceptions of their care, that it is supportive and involves maintaining therapeutic relationships with patients. Facing a terminal illness has been identified as a stressful and fearful experience that affects all aspects of life. It has also been revealed that dying patients may have unmet care needs, mainly in the areas of pain and symptom control, emotional support, and spending time alone. METHODS: A phenomenological study was carried out, using in-depth interviews and thematic content analysis. A convenience sample of 22 Registered Nurses and 22 dying patients was interviewed in 1996-1997. FINDINGS: Dying patients had a desire to maintain independence and remain in control. Palliative care nurses experienced both effective and ineffective interpersonal communication, the building of therapeutic relationships with dying patients and attempting to control patients' pain and distressing symptoms. Patients and nurses agreed that the two most important characteristics of an expert palliative nurse were interpersonal skills and qualities such as kindness, warmth, compassion and genuineness. CONCLUSION: Although the study was conducted in the United Kingdom, the findings have relevance for palliative care practice globally in terms of dependence, issues of patient choice, nurses being interpersonally skilled and building therapeutic relationships with patients.     

Management of terminal cancer patients: attitudes and training needs of primary health care doctors and nurses

 The objective of the study was to ascertain the attitudes and training needs of primary health care (PHC) professionals regarding the management of terminal cancer patients. A cross-sectional study involving 30 PHC teams (15 urban and 15 rural) in the health district of Majorca (Spain) was carried out. Out of the 224 doctors and 186 nurses initially included, 157 and 156, respectively, completed a questionnaire designed to elicit the participant's opinions on the role of PHC in palliative care, their needs in terms of training and their management of clinical and psychological symptoms. Forty percent of professionals considered that terminal care should be the responsibility of PHC, whereas 59.5% thought it preferable for such care to be given either in Palliative Care Units or by oncologists. All kinds of relationships between PHC professionals and specialists were highly valued. Seventy-five percent of general practitioners referred to pain control, and 83% of doctors and nurses provided emotional support. Most health professionals felt training in emotional aspects would be the most desirable. One group of professionals considered palliative care to be an asset in PHC, whereas another group thought that patient care should be provided by specialists. The majority of doctors and nurses pinpointed the need for improving co-ordination with specialists. A need for tuition in palliative care was clearly stated. In conclusion, the planning of palliative care should take into account the attitudes and opinions of PHC doctors and nurses. Published online: 21 June 2000     

Residential aged care: the last frontier for palliative care

AIM: This paper is a report of an explorative study describing the perceptions and beliefs about palliative care among nurses and care assistants working in residential aged care facilities in Australia. BACKGROUND: Internationally, the number of people dying in residential aged care facilities is growing. In Australia, aged care providers are being encouraged and supported by a positive policy platform to deliver a palliative approach to care, which has generated significant interest from clinicians, academics and researchers. However, a little is known about the ability and capacity of residential aged care services to adopt and provide a palliative approach to care. METHODS: Focus groups were used to investigate the collective perceptions and beliefs about palliative care in a convenience sample of nurses and care assistants working in residential aged care facilities in Australia. Thematic content analysis was used to analyse the data, which were collected during 2004. RESULTS: Four major themes emerged: (1) being like family; (2) advocacy as a key role; (3) challenges in communicating with other healthcare providers; (4) battling and striving to succeed against the odds. Although participants described involvement and commitment to quality palliative care, they also expressed a need for additional education and support about symptom control, language and access to specialist services and resources. CONCLUSION: The residential aged care sector is in need of support for providing palliative care, yet there are significant professional and system barriers to care delivery. The provision of enhanced palliative care educational and networking opportunities for nurses and care assistants in residential aged care, augmented by a supportive organizational culture, would assist in the adoption of a palliative approach to service delivery and requires systematic investigation.     

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.     

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.     

The developing role of children's nurses in community palliative care

This article addresses some of the contemporary issues in relation to providing palliative care for children in Ireland, particularly focusing on the creation of the specialist palliative care nursing outreach posts. The recent publication of an Irish national policy on palliative care for children with life-limiting illness is welcome news for paediatric nurses in Ireland. Children are valued members of society and have a right to receive quality health care and support appropriate to meet both children and the families' precise needs. However, community services for children with life-limiting illnesses remain inadequate, with many parents and families struggling to provide palliative care for children in the home. Currently, community nurses, who are not always registered children's nurses, are providing palliative care for children at the end of life. These nurses may not fully understand the specific needs of critically or chronically ill children and their families. In addition, there are no specific palliative care educational programmes in Ireland with regard to end-of-life care for children. The challenges of providing palliative care to children and their families in relation to symptom control, controversial ethical and legal issues, and emotional and practical support, mean that advanced knowledge is required in order to progress the agenda and thus provide excellence in children's palliative care in Ireland. It is important that the agenda is moved forward so that children and their families requiring palliative care and nursing support do not suffer from a lack of professional provision for their needs.     

The work of a specialist AIDS home support team: the views and experiences of patients using the service

The work of a specialist AIDS home support team whose role is to ensure continuity of care between hospital and community for patients with HIV infection is viewed from the patients' perspective. Information comes from a wider interview study in which 265 gay men positive for HIV were asked about their perceptions of and satisfaction with a variety of different services. Of the group, 119 (46%) reported involvement with the home support team. The team was seen as providing links between patients, the hospital and the community, as well as offering security for those who expected to need help in the future. For the most part, the team were seen in a favourable light when compared to other professionals and 53% felt they received a considerable amount of reassurance and support from them.     

Pain management services in palliative care: a national survey

INTRODUCTION: The effective management of pain requires a multidisciplinary approach. Previous studies have suggested that around 8% of cancer patients will require interventional techniques from an anaesthetist with special interest in pain management to maximize pain control, although this percentage may increase in the cohort of patients with difficult pain syndromes under the care of specialist palliative care services. We wished to determine the experiences and views of other palliative care physicians with regard to input from specialists in pain management. METHOD: A postal questionnaire was sent to the consultant members of the Association of Palliative Medicine. RESULTS: Most respondents had access to 'as-required' anaesthetist consultations with 72% of respondents feeling that the frequency of consultation was adequate. However, over half of the respondents had used the services of a pain management specialist less than four times in the past year and a quarter of respondents had not been involved in a joint consultation with an anaesthetist in the past year. All respondents felt that the pain management specialist's role included advice on technical procedures but less than 25% felt that their role should extend to advice on prescribing analgesics. DISCUSSION: There are likely to be several reasons for this apparent underutilization of specialist anaesthetist/pain management services. This survey has identified possible factors including lack of formal arrangements, lack of suitable experience and the attitudes of palliative medicine consultants.     

An out-of-hours protocol for community palliative care: practitioners' perspectives

Much of palliative care takes place in the patient's home. Out-of-hours service provision can be an area of concern. With the aim of improving this service, the former Calderdale and Kirklees Health Authority introduced an out-of-hours protocol for palliative care in the community. After 1 year the authors examined the experiences of primary care practitioners in using the protocol. Twenty district nurses and 15 GPs from 25 general practices in Calderdale, Huddersfield and North Kirklees took part in the study, which involved face-to-face group and individual telephone interviews. Practitioners felt that the out-of-hours protocol had made a positive contribution to palliative care in the community and that the out-of-hours handover form played a key role in improving communications and the coordination of services. For many participants, the protocol encouraged a more anticipatory approach to care and enabled better access to drugs and to specialist advice. The main areas of concern related to updating patient information on the handover forms, and to shortcomings in the support offered to carers. Future developments should address these issues. Although recognizing the dangers of generalization from research of this type, the findings offer encouragement to others considering similar schemes.