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.     

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.     

Palliative care for patients with non-malignant disease: will hospital physicians refer?

The objective of this research was to determine whether consultant physicians would consider referring patients with non-malignant disease to a specialist palliative care service, and if so, which patients they would refer. In addition, reasons for referral, expectations of the palliative care team and concerns about the extension of palliative care to non-malignant disease were examined. A postal questionnaire was sent to all 100 consultant physicians, including subspecialities, working in hospitals in south-east Wales, UK. Out of the 100 questionnaires, 78 physicians responded, of whom 94% would consider referring patients with non-malignant disease to a specialist palliative care service. The physicians would be prepared to refer patients with a wide range of conditions, for a variety of reasons. Among the physicians surveyed there was a general enthusiasm for specialist palliative care services to be made available to patients with non-malignant disease. The most appropriate form of service was thought to be a system of shared care and responsibility and this was seen as a means of addressing concerns regarding the lack of disease-specific expertise within the palliative care team.     

Exploring the views of nurse prescribing among Macmillan nurses

Nurse prescribing is a key government initiative which aims to enhance patient care. The aim of this study was to investigate the prescribing practice of specialist nurses working in cancer and palliative care and to explore the benefits of and barriers to uptake of nurse prescribing training. A national postal survey of 2252 Macmillan nurses was undertaken using a structured questionnaire with open-ended questions. Data were analyzed using thematic content analysis for 1575 respondents (70% response rate). Only 13% (203) had undergone prescribing training and of these 105 provided responses to the open questions concerning training and of the 87% (1372) who had not undergone the training, 423 provided details on barriers to nurse prescribing training. The data presented in this paper draw from this data. The findings indicate that those who prescribed gave the prospect of improving care as the main reason for undertaking nurse prescribing training. The main reasons why these specialist nurses did not undertake training were: resource issues particularly with respect to backfill while training, lack of medical support and mentorship, concerns about the relevance of prescribing as a nursing role and prioritizing other courses. If nurse prescribing is to be more widely available for cancer and palliative care patients it is important in both primary and secondary care to address the resource and support issues.     

How and Why Did a Regional Palliative Care Program Lead to Changes in a Region? A Qualitative Analysis of the Japan OPTIM Study

ContextImproving palliative care is one of the major issues throughout the world.ObjectivesThe primary aim of this study was to explore how and why a regional palliative care program led to changes in a region.MethodsAs part of a nationwide mixed-methods study of a regional palliative care program, a qualitative study was performed with 101 health care professionals involved in the implementation of the program. In-depth interviews were done, focusing on perceived changes and the perceived reasons for the changes. We used thematic analyses.ResultsSeven themes were identified as follows: 1) improved communication and cooperation among regional health care professionals; 2) increased confidence in the system to care for cancer patients at home; 3) improved knowledge/skills, practice, and perception of palliative care; 4) contribution to self-growth; 5) wide variability in perceived changes in the knowledge and perception of patients, family members, and the general public; 6) wide variability in the perceived regionwide effects of the project; and 7) unresolved issues. Participants emphasized improved communication and cooperation among regional health care professionals and stated a variety of ways of how communication and cooperation influenced daily practice. The main reasons for changes included regionwide interdisciplinary conferences and informal interactions at a variety of meetings.ConclusionThis study advances understanding of how the regional palliative care program created a change in the region. The findings are useful for developing a conceptual framework and identifying key interventions to improve regional palliative care for clinicians, researchers, and policy makers.     

Differences in understanding of specialist palliative care amongst service providers and commissioners in South London

This paper describes a study that sought to identify service providers' and commissioners' understanding of specialist palliative care within the context of changing service provision in one area of South London. Using a formative evaluation framework, we examined the views of 44 providers and commissioners from statutory and voluntary health and social care services about their understanding of specialist palliative care services and, in particular, the remit of current service provision delivered by a Marie Curie Centre. Face-to-face audiotaped semi-structured interviews were conducted. A qualitative thematic analysis highlighted a number of issues including a lack of consensus about definitions of palliative care, ambivalence about referral procedures, and a lack of role clarity between specialist and generalist palliative care providers. The study took place within the real world context of changing services and economic pressures. This raises methodological issues about how services are evaluated and what terminology is used to describe end-of-life care. The study findings confirm that confusion about terminology and referral criteria remain major issues for clinical workers and organizations seeking to access services.     

我国临终关怀准入标准界定的质性研究

目的了解临终关怀实施者、管理者及研究者对临终关怀准入的看法,界定我国临终关怀准入标准。方法采用焦点小组访谈法进行访谈,采用主题分析法整理分析资料。结果提炼出的主题有以预后为基础的准入为主,结合考虑以需求为基础的准入;增加限定条件“对临床根治治疗不获益”;可以考虑缩短准入患者预计生存期的时间;临终关怀准入应先从肿瘤患者入手;可将准入标准的评价指标细化;专业临终关怀机构可作为其他服务的中转站。结论应参考以预后为基础的准入,制定我国临终关怀准入标准。今后随着临终关怀机构的发展扩大,此标准可进一步修订。     

我国临终关怀准入标准界定的质性研究

目的 了解临终关怀实施者、管理者及研究者对临终关怀准入的看法,界定我国临终关怀准入标准.方法 采用焦点小组访谈法进行访谈,采用主题分析法整理分析资料.结果 提炼出的主题有以预后为基础的准入为主,结合考虑以需求为基础的准入;增加限定条件"对临床根治治疗不获益";可以考虑缩短准入患者预计生存期的时间;临终关怀准入应先从肿瘤患者入手;可将准入标准的评价指标细化;专业临终关怀机构可作为其他服务的中转站.结论 应参考以预后为基础的准入,制定我国临终关怀准入标准.今后随着临终关怀机构的发展扩大,此标准可进一步修订.     

我国临终关怀准入标准界定的质性研究

目的 了解临终关怀实施者、管理者及研究者对临终关怀准入的看法,界定我国临终关怀准入标准.方法 采用焦点小组访谈法进行访谈,采用主题分析法整理分析资料.结果 提炼出的主题有以预后为基础的准入为主,结合考虑以需求为基础的准入;增加限定条件"对临床根治治疗不获益";可以考虑缩短准入患者预计生存期的时间;临终关怀准入应先从肿瘤患者入手;可将准入标准的评价指标细化;专业临终关怀机构可作为其他服务的中转站.结论 应参考以预后为基础的准入,制定我国临终关怀准入标准.今后随着临终关怀机构的发展扩大,此标准可进一步修订.     

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.     

A service evaluation of a specialist community palliative care occupational therapy service

Abstract

Background

Occupational therapy aims to maximize patients' independence and is thus particularly relevant in palliative care where a loss of function is both common and distressing for patients. However, there is evidence that health professionals have a limited understanding of its role and remit, with the consequence that timely referrals are not made.

Method

A service evaluation was undertaken to establish colleagues' understanding of the palliative care occupational therapy service and its perceived benefit to patients in one local primary care area. A mixed methods approach was used, combining an online survey and focus groups. One hundred people were invited to complete the questionnaire, with a 58% response rate. Twenty-five people subsequently participated in two focus groups.

Results

Participants believed that the service achieved its aims. The main reasons for referral to the occupational therapy service were for the provision of equipment, or advice about equipment to support independent community living. Facilitating patients' preferred place of care was ranked next in importance. Participants did not feel that they were sufficiently aware of the full range of occupational therapy services available, and suggested that the provision of education and information would be effective in raising awareness of the remit of the specialist occupational therapy service.

Conclusion

From the professional service users' perspective, the specialist community palliative care occupational therapy service makes a valuable contribution to maintaining patients' independence, comfort, and quality of life, and is associated with supporting patients' preferred place of care. Areas highlighted for development include clear communication pathways, and education and information strategies regarding the role of the palliative care occupational therapist.     

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.     

Hospital discharge referral decision making: a multidisciplinary perspective.

Patients discharged without home care referral were presented as case studies to nurses, social workers, physicians, and discharge planners experienced in discharge planning. Observations and tape-recorded interviews were used to identify patterns clinicians used when gathering information, determine information essential to discharge referral decisions, and explore why patients in need may not be referred for service. Clinicians collected information randomly, and content analysis of their interviews identified mental and functional status, treatment adherence, medical and co-existing conditions, medication management, social support, and prior hospitalization as essential information. Three themes describe why patients may not receive needed referrals: patient characteristics, workload and staffing, and educational issues. Suggestions for improved practice and further research are based on these themes.     

Fast-track palliative care training to bridge the theory-practice gap

Having identified a need to develop the knowledge and skills of health care professionals in palliative care, a specialist team from a primary care trust set up a fast-track training programme. This consists of an academic module, a four-week secondment to palliative care settings and a project undertaken in the workplace to bring about a change in practice. The programme has proved successful in increasing students' skills and confidence and in changing practice in the workplace.     

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.     

Collaboration between the specialties in provision of end-of-life care for all in the UK: reality or utopia?

The UK End of Life Care Strategy (EoLCS) requires specialist palliative care services to contribute to end-of-life care for all. This systematic review aims to critically appraise literature published in the UK to identify how specialist palliative care professionals can collaborate with other health professionals within four of the key National Service Framework areas: heart failure, chronic obstructive pulmonary disease, neurological conditions, and dementia. Relevant literature was identified by electronic searches of various databases and websites and via secondary sources. A limited amount of quality research was found. Thematic analysis was applied and the over-riding themes were barriers to collaboration, organizational issues, and patients' and carers' views. The review concludes that when a collaborative approach to care is used, quality end-of-life care is achieved. Each disease pathway needs greater clarity regarding how it links with the EoLCS.     

Which cancer patients are referred to Hospital at Home for palliative care?

Previous research has shown that palliative home care use is influenced by variables such as age, socioeconomic status, presence of an informal carer, diagnosis, and care dependency. However, there is little information on its association with other health service use. This study compared 121 cancer patients referred to Hospital at Home (HAH) for palliative care with a sample of 206 cancer patients not referred who died within the same period. Electronic record linkage of NHS databases enabled investigation of patients' total input of care in their last year of life. Univariate analysis showed that patients referred to HAH were younger, lived in less deprived areas, were less likely to have been diagnosed within a month of death and to have causes other than cancer recorded on their death certificate. They were furthermore more likely to have had specialist oncology input, Macmillan nursing, Marie Curie nursing, acute hospital care, and district nursing before their last month of life. When care was received, patients referred to HAH received more hours of district nursing care. However, patients not referred to HAH began their acute hospital and district nursing input earlier (further from death) than those referred. Multivariate logistic regression analysis showed HAH referral to be negatively associated with breast and genitourinary cancers and number of noncancer causes recorded on the death certificate. Referral was significantly positively associated with specialist oncology input, Marie Curie nursing, and a late start (close to death) of acute hospital and district nursing care. It is hypothesised that referral to palliative home care is more likely among patients who have had prior contact with cancer services or are most clearly identified as cancer patients, and whose illness progression is manifested by a relatively short but intensive period of care prior to death.