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     

Perception and fulfillment of cancer patients' nursing professional social support needs: from the health care personnel point of view

Purpose

This study aimed to (1) explore the needs of cancer patients regarding common nursing professional social support from the perspective of physicians and nurses, (2) identify what type of needs clinical nurses actually fulfill and what remains to be improved, and (3) analyze the potential reasons for the gap between the identified needs and those that are fulfilled.

Methods

A qualitative approach using focus group interviews was adopted to explore the perception and provision of cancer patients' needs regarding nursing professional social support. A purposive sample of 32 health care professionals was recruited from two teaching hospitals in Anhui province, China. Five focus group interviews were conducted and all interviews were tape-recorded and transcribed verbatim. A content analysis was performed with the data.

Results

The healthcare professionals perceived various nursing professional support needs of cancer patients; these include informational, emotional/psychological, and technical support needs; the mobilization of social resources; and palliative care during certain stages. The findings also indicated that there are still many unmet needs, especially needs related to the mobilization of social resources and palliative care. The reasons for the deficiencies in the fulfillment of these needs varied and included both subjective and objective aspects, such as the patients' lack of awareness of how to search for professional support, a shortage of professional staff, and the lack of a culturally appropriate assessment tool.

Conclusions

Cancer patients' supportive care needs were not always fully provided by nurses, even when these needs were identified by healthcare professionals. Nursing professional social support needs should be assessed quickly and effectively so that the appropriate interventions can be offered to cancer patients.     

A comparative review of palliative care development in six countries represented by the Middle East Cancer Consortium (MECC)

Palliative care development and services were reviewed in the region represented by the six members of the Middle East Cancer Consortium: Cyprus, Egypt, Israel, Jordan, the Palestinian Authority, and Turkey. The multimethod review synthesized evidence from ethnographic field visits to inpatient units, home care hospice teams and free-standing hospices, including interviews with hospice and palliative care clinicians, administrators, volunteers, policy makers and academic researchers. Public health data and relevant literature were collated together with internet-accessed information on services and health care systems. A total of 69 services were located; two country members have a history of relatively sustained development of hospice and palliative care, but provision across the Middle East Cancer Consortium region is highly variable at a local level. Considerable barriers to service development were identified in a region already struggling with many military and political conflicts. Key problems are a lack of secure funds and government support, inadequate professional training programs, opioid phobia in professionals and the public, and a lack of awareness and understanding of palliative care needs at public, government, and professional levels. Key areas for further attention were increasing national and international professional training and public education programs, improving opioid legislation and health care policies, negotiating for secure government or health insurance funding provision, raising awareness about the need for pediatric services and for patients with other illnesses, as well as for those with cancer, and working to integrate palliative care into mainstream health service provision and education.     

Accounts of carers' satisfaction with health care at the end of life: a comparison of first generation black Caribbeans and white patients with advanced disease

While much research has described experiences at the end of life, no studies have explored the black Caribbean perspective. This paper compares the final year of life of first generation black Caribbeans and white patients with advanced disease in an inner London health authority, focusing on their satisfaction with service provision in both primary care and acute settings using face-to face interviews with carers of deceased patients. Of the 106 black Caribbean patients and 110 white deceased patients identified as dying during the study period 50 interviews per ethnic group were conducted with family members or close friends, a response rate of 47% and 45%. Even though examples of excellent and good care were cited, a larger proportion of negative satisfaction ratings of health care was recorded among respondents representing black Caribbean patients. This was true for all health care settings, particularly primary care, but less so for specialist palliative care nurses. However, few black Caribbean patients accessed specialist palliative care nurses or hospices. Qualitative data provided a deeper insight into the black Caribbean experience care at the end of life. We recommend that where examples of best practice in palliative care and culturally sensitive provision are evident they be extended to more health care professionals through education and training. Access to specialist palliative care services needs to be improved.     

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.     

The impact of oncology education on practice--a literature review.

Cancer care currently enjoys a high national profile in the UK, with a growing emphasis on cancer education for nurses and allied health professionals, however, there is dearth of research into the effectiveness and impact of cancer education on practice. This paper explores the context of cancer care and education and reviews the literature regarding the relationship between the two. It explores the assumption that education positively influences practice and contributes to the health care agenda by supporting the need for further research in this area.     

Developing cancer education at the Royal Marsden School

The Royal Marsden School of Cancer Nursing and Rehabilitation has developed a range of educational programmes to meet the needs of nurses and allied health professionals working in cancer care and to address the UK's shortage of appropriately trained cancer care specialists. The educational programmes are aimed at a wide range of practitioners at all levels--from newly qualified to consultant. The school has also provided education for nurses working in district general hospitals, with the aim of improving patient care for all people with cancer--in whatever setting they are treated.     

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.     

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.     

Barriers to palliative and supportive care.

The goal of palliative care is to provide comprehensive and intense symptom management and psychological, educational, social, and spiritual support. Barriers to palliative care that nurses encounter may be conceptualized into three main levels: the patient/family, professional, and system barriers. Recommendations for nurses, health care policy makers, and other health professionals to address the barriers are discussed. Future research and work needs to be implemented at all three levels to optimize the quality end-of-life care.     

The Michigan Advanced Practice Nursing Palliative Care Project

The emerging field of palliative care in the United States must respond to the health care needs of persons living and dying from advanced illness. The literature suggests that professional nursing education in palliative care is limited, inconsistent, and sometimes neglected. In response to these identified needs, the Michigan (MI) Advanced Practice Nurse (APN) Palliative Care Project was designed to integrate palliative education into existing graduate nursing curricula and to provide continuing education for postgraduate nurses.     

Supportive and palliative care needs of families of children who die from cancer: an Australian study

OBJECTIVE: To obtain feedback from parents of children who died from cancer about their understanding of palliative care, their experiences of palliative and supportive care received during their child's illness, and their palliative and supportive care needs. DESIGN: A qualitative study with semi-structured interviews. PARTICIPANTS: 24 parents from Perth (n = 10), Melbourne (n = 5), Brisbane (n = 5) and Sydney (n = 4). Setting: Five Australian tertiary paediatric oncology centres. Results Parents whose children died from cancer live within a context of chronic uncertainty and apprehension. Parents construed palliative care negatively as an independent process at the end of their children's lives rather than as a component of a wider and continuous process where children and their families are offered both curative and palliative care throughout the cancer trajectory. The concept of palliative care was perceived to be misunderstood by key health professionals involved in the care of the child and family. The importance and therapeutic value of authentic and honest relationships between health professionals and parents, and between health professionals and children were highlighted as a critical aspect of care. Also highlighted was the need to include children and adolescents in decision making, and for the delivery of compassionate end-of-life care that is sensitive to the developmental needs of the children, their parents and siblings. CONCLUSIONS: There is a need for health professionals to better understand the concept of palliative care, and factors that contribute to honest, open, authentic and therapeutic relationships of those concerned in the care of the dying child. This will facilitate a better understanding by both parents and their children with cancer, and acceptance of the integration of palliative and supportive care in routine cancer 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.     

Exploring bereavement care in inpatient settings

This paper compares the attitudes and practices of health professionals to the provision of family-centred bereavement care in different Australian inpatient settings: palliative care services, acute care and long stay residential aged care settings. Semi-structured interviews (88) were conducted with doctors, nurses, pastoral carers and allied health staff. Comprehensive bereavement care was not being provided or resourced in the acute and aged care hospitals to the same level as that provided in palliative care services. Residential care provided continuity of care and good support for grieving relatives and other residents. A structured bereavement program is needed in all inpatient settings with palliative care patients, along with resource and education support for health professionals.     

Self-reported competence in long term care provision for adult cancer survivors: A cross sectional survey of nursing and allied health care professionals

BackgroundCancer survival is increasing as patients live longer with a cancer diagnosis. This success has implications for health service provision in that increasing numbers of adults who have received cancer therapy are requiring monitoring and long-term health care by a wide range of practitioners. Given these recent trends there is a need to explore staff perceptions and confidence in managing the consequences of cancer diagnosis and treatment in cancer survivors to enhance an integrated cancer service delivery.ObjectiveThis study examines the self-reported perceptions of competence in nurses and professionals allied to medicine providing survivorship services caring for adults after cancer treatment in both secondary and primary care.DesignA cross sectional survey of the adult cancer workforce using a self-assessment tool for assessing confidence in providing long-term cancer patient management. This study was a health service evaluation.SettingThe study was conducted within the United Kingdom.ParticipantsRespondents were 618 health care professionals of these 368 were specialist adult cancer nurses in oncology and the community setting and 250 cancer allied health professionals.MethodThe survey tool was developed with experts in cancer management, nurses professionals allied to medicine such as physiotherapists and dieticians, educationalists, patient groups as well as health service managers. Competence was assessed in 4 domains clinical practice, symptom management, care co-ordination and proactive management. Perceptions of training needs were also ascertained. Data were collected using an Internet survey distributed through cancer services, community settings and professional institutions.ResultsIn total 618 practitioners who responded were providing services for adults’ 1-year post cancer therapy. Practitioners felt confident in managing psychosocial care and communicating with patients. Deficits in self-reported confidence were found in long-term medications management, care planning, long-term and complex symptom management, for those providing dimensions of care coordination and proactive care. Differences in confidence were seen between practitioner groups. Community nurses felt less skilled in managing adult cancer patients long-term.ConclusionsNurses and allied health professionals self-reported confidence, in managing all areas of care for adult cancer survivors, is variable with deficits in important areas of practice. Despite this being a small proportion of practitioners who are working in cancer care, those responding had perceived gaps in knowledge and educational needs. In providing cancer aftercare there is a requisite shift to proactive care, supported self-management and collaborative management if patient's long-term consequences of cancer and its treatment are to be addressed.Implications for practiceIf health care providers are to transform cancer survivor services then investment is required in education and capability planning across nurses, allied health professionals in both the hospital and the community setting.     

The use of neonatal palliative care: Reducing moral distress in NICU nurses

The ethical dilemmas faced by nursing professionals can lead to moral distress and the abandonment of nursing as a career. This is especially true in intensive care nursing where mortality is more prevalent. Neonatal nurses face a particularly high rate of moral distress when dealing with the treatment and loss of critical infants. This distress is compounded when nurses feel that the care they are providing is not in the best interest of the infant. Providing palliative care at the end-of-life may alleviate some of this distress, but only if palliative care is implemented consistently and effectively. Several barriers exist to implementing effective palliative care. The primary barrier is the lack of education of neonatal staff in the correct definition and application of end-of-life comfort care. This includes education in communication, assessment of needs, and implementation. A neonatal-specific palliative care team (or individual palliative care nurse) can fill this gap in education to accommodate effective care. A consistent, effective neonatal palliative care program is essential. Such a program affords the opportunity for compassionate communication with the family, a decrease in moral distress for nurses, and the provision of quality end-of-life care for the neonate.     

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.     

Patient-held records in cancer and palliative care: a randomized,prospective trialt

OBJECTIVES: To evaluate prospectively the introduction of a patient-held record (PHR) in the management of patients with advanced cancer and palliative care needs. DESIGN: a) A prospective, parallel group, randomized controlled trial. b) A postal survey of the opinions of health professionals whose patients had a PHR. SETTING: Out-patient oncology centres in Glasgow and Edinburgh, hospice home-care services across the central belt in Scotland. PARTICIPANTS: A total of 244 patients with advanced cancer recruited either from oncology outpatient clinics or hospice home-care services. The baseline interview was completed by 231 patients and 117 were randomized to receive the PHR. Between 4 and 6 months later, 80 patients with the PHR and 97 without were interviewed. Of the 83 health professionals caring for patients known to have received the PHR 63 replied to a postal questionnaire. MAIN OUTCOME MEASURES: Subjective views of patient satisfaction with communication and perception of communication between patient and health care professionals as determined by structured interview at baseline and after 4-6 months. RESULTS: We could identify no improvement in the provision of information to patients, or patients' satisfaction with information provided by outpatient doctors, GPs, practice and community nurses and hospice or palliative home care staff. Overall, patients' perception of communication between all staff involved in their care with and without PHRs was excellent in 24% and 21 %, respectively, or very good in 56% and 58% (P=0.89). The PHR made no difference to information passing between health professionals, or to the degree of family involvement. Most of those who had a record found it of some use and benefit. CONCLUSION: This study provides no evidence on which to base the widespread promotion of PHRs, although local projects with committed clinicians and patients may well prove popular and effective.     

Healthcare providers' priorities for cancer care: A Delphi study in Greece.

Cancer is a major problem globally and effective cancer care services are needed to lessen its burden on the community. In Greece, oncology health services provision is not located efficiently, resulting in few patients receiving high-quality care. Furthermore, shortages of health professionals and underdeveloped services such as primary care, home care and palliative care have aggravated the problem. The absence of a national cancer registry means that the extent of cancer incidence cannot be evaluated effectively. Dissatisfaction with the Greek NHS is well established, despite the reforms proposed by consecutive Greek governments. It remains that limited research exists in the area of cancer services and cancer care. The aim of this study was to identify the key areas of cancer care and services that needed to be developed or improved in Greece and their prioritisation within the Greek healthcare system. A Delphi technique was used to collect data from a sample of 30 healthcare providers, in three rounds. The response rate for each round was over 77%. The priorities for healthcare providers were focused on staff shortages, working conditions, pain management, home care, day units and communication. Based on the priorities provided by the participants and supporting literature, it is suggested that a national cancer registry, the employment of nurses to develop primary care, home care, day care and palliative care services need to be established. Furthermore, education in communication skills and the redistribution of the bio-medical technology are needed in order to provide more effective cancer services in Greece. More research is needed to validate the actual level of cancer services provided in Greece.     

Challenges that specialist palliative care nurses encounter when caring for patients with advanced dementia

Specialist palliative care (SPC) has expanded recently in Ireland to incorporate diseases other than cancer, including dementia. Two care areas that pose specific challenges for SPC nurses when caring for people with advanced dementia are pain and nutrition/hydration. Assessment and management of pain for a patient who has advanced dementia differs greatly from that for a typical palliative care patient. Similarly, nutrition and hydration pose extraordinary ethical and practical dilemmas not encountered when caring for a patient without dementia. This paper reports a literature review which revealed that although evidence-based information related to each of these areas is available, it tends to be written from the perspective of health professionals with an interest in dementia rather than from the perspective of the SPC nurse. SPC nurses require evidence-based palliative care research to guide their practice, but such research appears to be limited for patients with advanced dementia. Knowledge from specialists in both dementia care and palliative care needs to be combined if we are to provide these patients with the best possible end-of-life care. Further research is required and evidenced-based guidelines need to be formulated.