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.     

Balancing dual roles in end-of-life research.

Ethical and practical issues are sure to arise from the majority of research studies done with palliative populations. Whether it is feeling opportunistic, being emotionally available, or struggling with witnessing a gap in service and needs of the participants receiving care, nurses involved in research find a way to balance both roles to meet the needs of the participants as well as the study (McIlfatrick, Sullivan, & McKenna, 2006). This paper highlights some of the practical and ethical issues that arise when frontline nurses also take on the role of research assistant for studies with palliative populations. Specifically, the authors highlight their personal experiences based on their research assistant work on a study examining family caregiver coping in end-of-life cancer care. The authors discuss the "balancing act" of taking on these dual roles and offer recommendations on how to be with and approach people when doing research at the end of life using a framework based on Swanson's Theory of Caring (1991).     

The future of palliative care nursing research in Australia

Nursing research in palliative care is becoming more important as cost effectiveness and evidence-based practice are becoming mandatory. Fifty-nine published and unpublished projects relating to nursing research on palliative care in Australia between 1990 and 1996 were reviewed. Findings indicated that nurses working in palliative care in Australia are interested in researching a range of topics using varied methods. The nurses' primary interests appear to be their own professional issues and management of the patient's pain. Little research on families/carers of palliative care patients was evident. There is a need for future research to focus on projects that justify the nurse's role in the palliative care team, show that nursing interventions for symptom control affect patient outcomes and prove nurses are integral to the psychosocial and spiritual wellbeing of the patient and family during the palliative care journey.     

Bridging the gap: can a link nurse initiative influence palliative care in an acute hospital?

With 90% of people needing some inpatient hospital care in the final year of life, it is evident that the provision and awareness of palliative care, and education surrounding this, are widely needed. This study aims to evaluate a palliative care link nurse initiative (PCLN) in an NHS acute hospital, identifying key factors affecting link nurses' ability to influence palliative care practice. This qualitative study used semi-structured interviews and a focus group to show the anticipated and actual influence of link nurses on practice. Findings suggest that link nurses had increased knowledge and skills in palliative care due to education provided. Link nurses were seen to have an influence on the presence and quality of palliative care practice in hospital wards. Factors that could help link nurses to have greater influence are reported, as are difficulties in providing care and accessing training.     

The ethics and practicalities of consent in palliative care research: an overview

In order to ensure that further developments and improvements are made in palliative care, research is essential. Palliative care is no different from other specialities in that it needs a scientific foundation on which to base its practice. Research in palliative care is particularly difficult, however, because of the population under study. Research in palliative care presents a 'minefield' of ethical issues. One of the major issues is how to obtain informed consent from patients. This article discusses the practical and ethical issues surrounding consent for quantitative research in palliative care, and offers some guidance to health professionals considering the issue with patients.     

Using the Canadian Code of Ethics for Registered Nurses to explore ethics in palliative care research

Nursing research in palliative care raises specific and challenging ethical issues. Questions have arisen about whether such research is morally justified, given the low likelihood of direct benefit to dying patients as research participants. The Canadian Code of Ethics for Registered Nurses outlines eight primary values intended to guide nursing practice. We use these values to explore the moral dimensions of research with the palliative care population. Our conclusion is that palliative care research is needed to foster excellent care for these patients and their families, but that nurses must remain constantly vigilant to ensure that participants are protected from resultant harms. Through this exploration we highlight particular considerations that nurse researchers must contemplate when accessing a vulnerable population.     

Nurses' knowledge of palliative care in the Australian Capital Territory

Australia has a growing number of specialist palliative care services. As they expanded in the Australian Capital Territory, a working party was established to discuss issues associated with palliative care. One activity authorized by this committee was a survey of nurses' knowledge of palliative care. The Palliative Care Quiz for Nurses (Ross et al, 1996) was adapted with permission for this survey: 455 registered and enrolled nurses were surveyed; 247 (54%) participants returned completed questionnaires. The overall mean score for the Palliative Care Quiz was 12.4 of a possible 20; the mean scores were 13.2 for registered nurses and 10.6 for enrolled nurses. Nurses with some oncology or palliative care experience scored significantly higher than others. Nurses with more work experience as measured by working years also attained significantly higher scores. Analysis and examination of correct items suggest that nurses have acquired basic knowledge through experience. However, as other studies have suggested, there is also a lack of knowledge of complex symptoms found in palliative care patients.     

Improving self-management skills: a whole systems approach

This article outlines the rationale behind an approach developed at the National Primary Care Research and Development Centre (NPCRDC) to improve patients' abilities to self-manage their conditions with the support of services provided by the NHS. The approach is systematic and requires involvement of patients in the development of information, changing access arrangements to health services and promoting a patient-centred approach to care. A programme of research and development is currently being undertaken at The University of Manchester by researchers based at NPCRDC to investigate the effectiveness of this approach. The evidence base for the strategy under investigation is discussed and proposals are made for the role of nurses as facilitators for the self-management agenda in the NHS.     

The experience of transition to palliative care services: perspectives of patients and nurses

The care of patients whose illnesses cannot be cured places many stresses on health professionals (both generalist and specialist), and more importantly on patients and families. The complexities for all concerned in the process of referral to palliative care services should not be underestimated, however there is evidence that the referral process could be better handled by all health professionals. With greater understanding of the dynamics of care, the crisis of living with an incurable illness and dying can be lessened for patients. This article reports on a qualitative research project undertaken at a large metropolitan palliative care service and its referring public hospital. Patients and nurses were interviewed to identify issues relating to the care of patients and families newly referred to palliative care. The findings of this research identify themes in relation to the transition of patients from acute curative to palliative care services, e.g. pace and timing of the transition, fear and (mis)understanding, accepting palliative care, information and education on palliative care, and peer support and supervision for palliative care nurses.     

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.     

Palliative care nursing in rural Western Australia

This article presents the findings of a study of rural palliative care nurses in Western Australia. The number of rural centres in Western Australia offering palliative care services is increasing; however, at present there is little empirical data available about the roles of the nurses involved. This study was undertaken to begin to correct this deficit. The study examined basic social processes associated with the role of rural palliative care nurses, and identifies issues that affect the nurses' professional practice. A modified grounded theory approach was used to form a conceptual framework that describes rural palliative care nursing. Theoretical sampling techniques were used to identify the six palliative care nurses working in rural Western Australia who participated in the study. Data were generated using in-depth interview and participant observation techniques. Constant comparative analysis of the data was employed to allow concepts to emerge from the data. The central theme that developed is the all-consuming nature of the rural palliative care nurse's role. Three subthemes relating to multiple roles, expectations of nurses, and coping strategies are also discussed. This research explored issues that rural palliative care nurses feel are relevant to their professional practice, and it describes the basic social processes inherent in the rural palliative care nurse's role. Recommendations for nursing research, education, administration and clinical practice are presented.     

Developing user involvement in research

User involvement is central to the UK government's modernization agenda for the National Health Service (NHS). This paper represents work undertaken for the NHS National Cancer Research and Development Programme and NHS Executive Trent. It includes reflection on the experience of user involvement in health care research drawing on current UK health policy documents and an examination of the factors affecting recruitment to breast cancer clinical trials, and contributes to the debate on recruitment to clinical trials. Reference to UK policy documents is made throughout as well as real life experience of involving users in research. It summarizes key issues that nurses and midwives must consider to ensure effective user participation in research and practice.     

Communication in the development of culturally competent palliative care services in the UK: a case study

Research suggests that many minority ethnic patients who receive palliative care in the UK are satisfied with the service they are given. However, various studies have revealed that minority ethnic groups' experiences of care are far from perfect. The most significant problem for these patients centres on communication. This article presents some results from an exploratory study, commissioned by Luton Health Action Zone, to explore the role of communication in delivering effective palliative care services to South Asians living in Luton. Overall, it was found that the services provided are, in most cases, valued and seen as being effective. However, as the service providers who were interviewed readily recognized, there were areas where improvements could be made. The main issues were found to be the need to inform South Asian populations of the availability of palliative care services and the need to improve communication between patients and service providers. This article describes the communication problems that service providers and users face. It also identifies possible policy improvements aimed at developing the 'cultural competency' of services.     

Securing ethical permissions to conduct research with children

The process of obtaining ethical permission for medical research is particularly complex in multicentre studies. This article explores the experience of seeking approval for a mixed-method study of children's palliative care in the UK. The study recruited participants through the NHS (nurses and consultants) and third sector (hospice staff and families). The stringent checks and balances that are discussed here apply to any medical research, and can reassure all interested parties of consistently high ethical standards.     

Critical caring. Promoting good end-of-life care in the intensive care unit.

Changing the culture in the ICU to include palliative care interventions along with curative interventions is already underway. Further work is needed, however. This is a role for the critical care nurse. Critical care nurses can be involved in research and education to enhance their future practice in end-of-life care. Research to establish evidence-based protocols for use in patients who require palliative care in the ICU needs to be done. Critical care nurses can prepare themselves for carrying or dying patients by attending palliative care seminars and continuing education courses or by taking a short clinical sabbatical or internship in a local hospice to observe and help give end-of-life care. Hospice nurses can be invited to the ICU to give inservice sessions and to help nurses and other staff understand the transition to dying, including the services that need to be offered to the patient and the family. Nurses from the hospital palliative care team can consult and be available for follow-up. Promoting good end-of-life care should be a goal for all intensive care nurses and critical care units. This goal is reached one patient at a time.     

Depression in palliative care settings: the need for training for nurses and other health professionals to improve patients' pathways to care

Depression is highly prevalent in patients receiving palliative care; however, detection rates are low, with many patients who suffer with depression continuing to go undetected and untreated. A number of factors unique to this setting, as well as issues relating to staff knowledge and self-efficacy working with depression, may impede the detection of patients who are depressed by professional health care staff. Although programmes aimed to train nurses and other allied health staff in depression may be an effective way to improve detection rates, there have been few studies investigating the efficacy of these interventions. This article draws upon recent literature to provide a narrative review of barriers to detection and factors relating to professional palliative care staffs' ability to provide pathways to care for patients who suffer with depression in this setting. Previously evaluated training programmes are reviewed and the argument is made that further development and empirical evaluation of depression training interventions for staff in this setting will provide services with evidence-based methods of training nurses and other professional care staff and improve the pathways to care for patients who suffer with depression.     

It just didn't work: the realities of quality assessment in the English health care context

AIMS: Assessment of care quality is integral to health and palliative care provision and there is a need to develop and implement outcome measures to assess quality. This study aimed to: (1) describe the implementation of a palliative care outcome measure in non-specialist palliative care settings and (2) to understand the implementation of the measure. METHOD: Twenty-five non-specialist palliative care settings were purposely sampled and invited to implement a palliative care outcome measure. Fifteen settings agreed to take part. The research team provided training and support in the use of the measure. Data were collected on actual use of the measure and, via interviews with patients and nurses, on their experiences. RESULTS: The number of assessments was low (21 patients assessed against an anticipated minimum of 240). The analysis of nurses' accounts identified important considerations in understanding the low response. Although nurses saw the implementation of the outcome measure as bringing opportunities for themselves, including their own professional development, and for the organisations they represent, including raising organisational profiles, there were a number of factors that acted as impediments. These include: perceived time to administer the paperwork; competence and confidence in recruiting patients and proceeding with informed consent; concerns about the effects of completing the measure with very ill patients; and the effects of nurses raising palliative care issues on their relationships with patients. CONCLUSIONS: It is difficult to integrate outcome measures into routine clinical practice. Future interventions should consider how to tailor the implementation of outcome measures within existing working structures and provide education and training to enable nurses to deal with potentially sensitive palliative care issues.