A national survey of health professionals and volunteers working in voluntary hospice services in the UK. I. Attitudes to current issues affecting hospices and palliative care

This paper reports results from a national survey in 1999 of voluntary hospice services in the UK. It focuses on volunteer and staff views of the purposes of hospice care, and on current debates within palliative care. Twenty-five hospice services, stratified by region, services provided (inpatient care, day care and/or home care) and number of beds were randomly sampled from amongst 175 voluntary hospices in the UK. Nineteen participated. Seventy per cent of a random sample of professional and voluntary staff within these hospices returned a postal questionnaire. Both volunteers and professionals considered care of the whole person, pain and symptom control, quality of life and dying peacefully to be important aspects of hospice care. Most doctors chose care of the whole person as the most important aspect, and they were more likely to choose this option than other staff. Hospice volunteers were less positive than hospice staff (particularly doctors and nurses) in their attitudes to extending hospice care to noncancer patients (where many volunteers held no strong view), to restricting care to patients with specialist palliative care needs, and less negative about euthanasia. These findings illustrate the importance of including hospice volunteers and the general public, as well as hospice staff, in debates about the future of hospice and palliative care in the UK. Further research is needed into lay and professional views of the role of hospices and palliative care services.     

"Pain talk" in hospice and palliative care team meetings: an ethnography

BACKGROUND: Specialist palliative care nurses have considerable expertise in pain management and this expertise can contribute to tension in the boundary between specialist nurses and non-specialist doctors. OBJECTIVES: This article reports on how specialist palliative care nurses contribute to team talk about pain and the rhetorical strategies they use to develop their reputation and credibility in pain management. DESIGN AND SETTINGS: This is an ethnographic study involving the collection of naturally occurring data from eight palliative care team meetings. The study is concerned with team meetings in hospice, community and hospital palliative care settings. METHODS: Data was collected by audio recording eight team meetings in hospice, hospital and community palliative care settings. The data were analysed using a grounded theory approach followed by application of the tools of discourse and conversation analysis. RESULTS: The findings indicate that specialist palliative care nurses use rhetorical strategies such as contrastive rhetoric, telling atrocity stories, veiled criticism and neutralism as a platform for building a reputation in managing pain. Furthermore they situate their expertise in pain management by direct contrast with problems related to non-specialist practice in pain management. CONCLUSIONS: The team meetings are a safe place, a collegial setting for specialist nurses to challenge non-specialist medical practice and to manage the specialist/non-specialist boundary. The findings have implications for further research related to the specialist nurse/non-specialist doctor boundary and for education of specialist nurses and GPs.     

Refining a checklist for reporting patient populations and service characteristics in hospice and palliative care research

ContextIn specialist hospice and palliative care services, variations occur in diagnoses and prognoses of subpopulations referred, service configuration, and the health systems delivering care. These three levels of variation limit the ability to generalize study findings.ObjectivesThis article reports on coding one year of palliative care research using a previously developed checklist. The aims were to 1) quantify current reporting of factors related to generalizability in specialist palliative care research; 2) review and potentially refine the checklist in light of the first aim; 3) demonstrate the feasibility of collecting these data; and 4) set out simple processes to aid researchers in reporting, and clinicians in applying, new research evidence in hospice and palliative care.MethodsA previously published checklist (five domains, 14 core subdomains, and 24 noncore subdomains) was used to code all research articles (n = 189) published in 2007 in the three leading palliative care research journals.ResultsThe most frequently reported subdomains were patient age, gender, and diagnosis; model of service delivery; and patient performance status. Data in subdomains, including time from referral to death, socioeconomic indices, and ethnicity, were rarely reported; none reported whole-of-service or whole-of-population data. In total, 2646 (189 × 14) core subdomains could have been reported. Data were provided in 28% (746/2646).ConclusionChecklists such as the Consolidated Standards of Reporting Trials evaluate study design, focusing mainly on internal validity. The proposed checklist deals with specific content of hospice and palliative care, focusing on external validity.     

Older adults' attitudes to death, palliative treatment and hospice care

BACKGROUND: Cancer patients who receive care from specialist palliative care services in the UK are younger than those who do not receive this care. This may be explained by age-related differences in attitudes to end-of-life care. OBJECTIVE: To determine the relationship between age and i) attitudes to death and preparation for death; and ii) knowledge about, and attitudes to, cancer and palliative care. DESIGN: Interviews with older people, using a novel questionnaire developed using nominal groups. Main comparisons were made between people aged 55-74 with those aged 75 years and over. SETTING: General practices in London. SUBJECTS: 129 people aged 55-74 and 127 people aged 75 years or over on the lists of general practitioners. METHODS: A cross-sectional survey to determine knowledge and experience of hospice care; preparation for end-of-life; and attitudes to end-of-life issues. RESULTS: Participants were knowledgeable about specialist palliative care and almost half had some indirect contact with a hospice. People aged >74 were less likely than younger participants to want their doctor to end their life in a terminal illness. Although they believed death was easier to face for older people, they did not believe that younger people deserved more consideration than older people when dying, or that they should have priority for hospice care. Education, social class, hospice knowledge and anxiety about death had little influence on overall attitudes. CONCLUSIONS: The relative under-utilization of hospice and specialist palliative care services by older people with cancer in the UK cannot be explained by their attitudes to end-of-life issues and palliative care.     

Patient satisfaction with hospice day care

Day hospice allows patients to remain living at home while attending a specialist palliative care center. This paper describes patient feedback (n=26) on medical, social and therapeutic out-patient palliative care services provided at one such facility in Northern Ireland. Medical records of all attending patients (n=50) were reviewed, and patients completed a semi-structured questionnaire. Patients’ comments on day hospice were largely positive. A number of suggestions for new service activities were made, and the need for education of multi-professional team members was recognized. Respondents recognized that day hospice allowed respite care for the family. Patients were very appreciative of the care that was offered—their concern for its continuance perhaps restraining any criticism they had. Such findings provide the opportunity for health professionals to gain further insights into day care to better meet patients’ needs.The views and opinions expressed do not necessarily reflect those of the Northern Ireland Hospice     

Massage and aromatherapy massage: nursing art and science

This article begins by reviewing the place of complementary therapies in palliative care from the perspective of UK professional organizations, namely the Nursing and Midwifery Council (NMC) (formerly the United Kingdom Central Council for Nursing, Midwifery and Health Visiting (UKCC)) and the British Medical Association (BMA). It then reviews recent research on the use of massage and aromatherapy massage in palliative care and comments on their credibility and implications, thereby addressing nursing science. The art of nursing is explored through four case histories where massage was used intuitively when words were difficult or seemed inadequate. To conclude, by focusing on the therapies provided by a UK hospice, there is consideration of the practicalities of implementing massage and aromatherapy massage in a specialist palliative care unit.     

Providing Palliative and Hospice Care to Children,Adolescents and Young Adults with Cancer

ObjectivesTo describe palliative, concurrent, and hospice care in pediatric oncology in the United States (US), we present a clinical scenario illustrating palliative and hospice care, including eligibility for concurrent care, insurance coverage and billing, barriers to accessing quality pediatric palliative and hospice care, and implications for oncology nursing practice.Data SourcesPeer-reviewed articles, clinical practice guidelines, professional organizations, and expert clinical opinion examining pediatric oncology, palliative care, and hospice care.ConclusionUnderstanding the goals of palliative and hospice care and the differences between them is important in providing holistic, goal-directed care.Implications for Nursing PracticeOncology nurses play a pivotal role in supporting the goals of pediatric palliative care and hospice care and in educating patients and their families. Nurses form trusting relationships with pediatric oncology patients and their families and are in a position to advocate for best palliative care practices as disease progresses to end of life, including when appropriate concurrent care or hospice.     

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.     

Haematological malignancy: are patients appropriately referred for specialist palliative and hospice care? A systematic review and meta-analysis of published data

Haematological malignancies are complex diseases, affecting the entire age spectrum, and having marked differences in presentation, treatment, progression and outcome. Patients have a significant symptom burden and despite treatment improvements for some sub-types, many patients die from their disease. We carried out a systematic review and meta-analysis to examine the proportion of patients with haematological malignancies that received any form of specialist palliative or hospice care. Twenty-four studies were identified, nine of which were suitable for inclusion in the meta-analysis. Our review showed that patients with haematological malignancies were far less likely to receive care from specialist palliative or hospice services compared to other cancers (Risk Ratio 0.46, [95% confidence intervals 0.42-0.50]). There are several possible explanations for this finding, including: ongoing management by the haematology team and consequent strong bonds between staff and patients; uncertain transitions to a palliative approach to care; and sudden transitions, leaving little time for palliative input. Further research is needed to explore: transitions to palliative care; potential unmet patient needs; where patients want to be cared for and die; existing practices in the delivery of palliative and end-of-life care; and barriers to specialist palliative care and hospice referral and how these might be overcome.     

Hospital referrals to a hospice: timing of referrals, referrers' expectations, and the nature of referral information

Hospital referrals to Mary Potter Hospice were reviewed prior to the implementation of a new hospital palliative care support service. The hospital palliative care service aims to improve the communication between health professionals in the acute hospital and hospice, and to advise the hospital staff on its management of terminally ill patients. The purpose of this review was to provide baseline information that would assist the hospice with the planning and future evaluation of the new service. Information included the timing of the referrals, the type of referral information provided by hospital doctors, and their expectations of hospice care. One fifth of patients were referred near to death. While medical information was nearly always provided on referral, information on the psychological, spiritual and social dimensions of care was often absent. A third of hospital doctors expressed their expectation of the hospice as "to take over" the patient's care. This suggests the hospital palliative care support service should encourage health professionals to take a more active role in caring for dying patients. The findings are discussed in relation to the goals of the new hospital palliative care support service.     

Needs assessment: a tool for hospice expansion

This article outlines the strategies adopted by a voluntary hospice to identify the local needs for hospice care, and summarizes the needs assessment findings. Since the advent of specialist palliative hospice inpatient services, only a small proportion of dying patients have been admitted to hospices. Recent UK government initiatives have promised extra or equalized funding and perhaps a widening of the criteria for admission. The work reported here was based on Stevens and Raftery's (1997) protocol for needs assessment and Higginson's (1997) review of the components of health care needs in palliative and terminal care. These were used to identify local requirements and provide evidence for expansion of the hospice and the services it provides to the local health economy.     

A model long-term care hospice unit: care, community, and compassion

The purpose of this study was to investigate the factors that influenced the quality of care of terminally ill nursing home residents on a hospice unit in a city and county long-term care facility. The findings disclosed that the hospice team had created a cultural environment in which care, community, and compassion were the predominant components of their philosophy of palliative care. Communication at all levels-among staff, family, friends, and residents-was found to be a core hospice value, essential to community development. The results of this study illustrate that exemplary palliative care can be provided when an interdisciplinary team is dedicated to creating an environment where the principles of palliative care can be fully implemented. The authors conclude that there is a developing role for geriatric nurses to participate in further defining and providing palliative care for older people in their homes, hospitals, nursing homes, and residential care.     

Hospice and palliative care development in Africa: a multi-method review of services and experiences

There is a paucity of information on hospice and palliative care provision in Africa and only a weak evidence base upon which to build policy and practice development. We set out to assess the current state of provision across the continent, mapping the existence of services country by country and exploring the perspectives and experiences of those involved. A multi-method review was conducted involving a synthesis of evidence from published and gray literature, ethnographic field visits to seven countries, qualitative interviews with 94 individuals from 14 countries, and the collation of existing public health data. Forty-seven African countries were reviewed, involving the assistance of numerous hospice and palliative care activists, including clinicians, managers, volunteers, policy makers, and staff of donor organizations. The 47 countries of Africa could be grouped into four categories: no identified hospice or palliative care activity (21 countries); capacity building activity is underway to promote hospice and palliative care delivery (11 countries); localized provision of hospice and palliative care is in place, often heavily supported by external donors (11 countries); and hospice and palliative care services are approaching some measure of integration with mainstream service providers and gaining wider policy recognition (four countries). Overall, services remain scattered and piecemeal in most African countries, and coverage is poor. Nongovernmental organizations are the predominant source of provision. Major difficulties relate to opioid availability, workforce development, and achieving sustainable critical mass. Models exist in Uganda, Kenya, South Africa, and Zimbabwe for the development of affordable, sustainable community-based hospice and palliative care services, but sensitivity is required in adopting Western models of hospice and palliative care for implementation in the African cultural context. Overall, interest in the development of hospice and palliative care in Africa has never been greater.     

Systematic review of specialist palliative day-care for adults with cancer

Goal of work To inform future practice, research and policy in specialist palliative day-care by systematically reviewing the evidence for how the structure and process of this form of care relate to outcomes for adults with cancer.Patients and methods Medical, nursing and social science computerized databases were searched up until December 2003 for studies of palliative day-care reporting information on service structure, care processes or outcomes including symptom control, quality of life, social and psychological support, and patient and relative satisfaction with care. Qualitative and quantitative studies were assessed for methodological quality and graded, and the findings synthesized into the review.Main results Twelve observational studies were found that showed the difficulties of evaluating a service already operating and of recruiting a vulnerable population of patients as they deteriorated. Most services are nurse-led, but varied in the facilities, staff mix, care models, activities and places they offered. Patients attending seemed a selected group of those already receiving palliative care who were mostly white, aged over 60 years and retired, with needs for emotional and social support and pain control. There were insufficient studies to provide conclusive evidence of improved symptom control or health-related quality of life, but all qualitative studies found patients valued the social support and opportunity to take part in activities that day-care provided.Conclusions There is evidence for high satisfaction among patients selected into day-care, but not yet sufficient to judge whether this improves symptom control or health-related quality of life. Further research should explore selection and access into care, the most effective models of care, its cost, and potential benefits for relatives and carers. Comparison with models of care for older adults and those with mental illness would also be informative.     

Preparation, information and liaison: conducting successful research in palliative care

Palliative care professionals are increasingly exposed to, and under pressure to participate in, research to promote evidence-based practice. This may pose challenges and tensions within normal working practices. This article draws on the results of a small qualitative study that explored the experiences of a group of specialist nurses at an independent hospice involved in palliative care research. By reflecting on their experiences and the difficulties they encountered, primarily with regard to obtaining informed consent from patients to take part in the research, this article explores issues relevant to practitioners and researchers when conducting palliative care research involving patients. It concludes by suggesting guidelines for conducting good quality research.     

Introducing reflective narratives into palliative care home care education

The purpose of the research project was to determine the impact of palliative care education and the writing of a reflective narrative on nurses' self-awareness of their attitudes toward death and care of the dying. Findings support integration of narrative reflection into palliative care education as an effective teaching strategy.Only qualitative findings of a larger study are presented; quantitative results have been published in the Journal of Hospice & Palliative Nursing (Home care and hospice nurses' attitudes toward death and caring for the dying: effects of palliative care education. 2005;7[4], 212-218).     

Pediatric Palliative Care in Sub-Saharan Africa: A Systematic Review of the Evidence for Care Models,Interventions, and Outcomes

ContextThe progressive disease burden among children in sub-Saharan Africa means the provision of palliative care is essential and should be provided alongside treatment where it is available.ObjectivesTo systematically review the evidence for pediatric palliative care models, interventions, and outcomes to appraise the state of the science and inform best practice.MethodsA systematic review search strategy was implemented in eight electronic databases, the search results reported using a PRISMA statement, and findings tabulated.ResultsIn terms of evidence of palliative care provision and outcomes, only five articles were identified. These represent a small range of acute, community, and hospice care and offer some limited guidance on the development and delivery of services.ConclusionPediatric palliative care is a pressing clinical and public health challenge in sub-Saharan Africa. Explicit evidence-based models of service development, patient assessment, and evidence for control of prevalent problems (physical, psychological, social, spiritual, and developmental) are urgently needed. Greater research activity is urgently required to ensure an evidence-based response to the enormous need for pediatric palliative care in sub-Saharan Africa.     

Safe and Appropriate Use of Methadone in Hospice and Palliative Care: Expert Consensus White Paper

Methadone has several unique characteristics that make it an attractive option for pain relief in serious illness, but the safety of methadone has been called into question after reports of a disproportionate increase in opioid-induced deaths in recent years. The American Pain Society, College on Problems of Drug Dependence, and the Heart Rhythm Society collaborated to issue guidelines on best practices to maximize methadone safety and efficacy, but guidelines for the end-of-life scenario have not yet been developed. A panel of 15 interprofessional hospice and palliative care experts from the U.S. and Canada convened in February 2015 to evaluate the American Pain Society methadone recommendations for applicability in the hospice and palliative care setting. The goal was to develop guidelines for safe and effective management of methadone therapy in hospice and palliative care. This article represents the consensus opinion of the hospice and palliative care experts for methadone use at end of life, including guidance on appropriate candidates for methadone, detail in dosing, titration, and monitoring of patients' response to methadone therapy.     

Therapeutic relationships in specialist palliative care nursing practice

There has been limited research into the scope or standards of specialist palliative care nursing practice in an Australian context. This study sought to develop a competency framework that described the core domains of specialist palliative care nursing. This article explores one key domain of specialist palliative care nursing practice - therapeutic relationships - that was identified as underpinning other domains of practice. A mixed method was used, involving a literature review, a survey including practice exemplars and an interview of specialist palliative care nurses. Seventy-four registered nurses working in designated specialist palliative care nursing roles from each Australian state and mainland territory were involved. The nurses represented metropolitan, regional, rural and remote communities, various inpatient facilities and community practice settings. Five core domains of specialist palliative care nursing practice were identified: complex supportive care, collaborative practice, leadership, improving practice and therapeutic relationships. Therapeutic relationships were identified as the central domain of specialist palliative care nursing practice to which all other domains were inextricably linked.     

Nurse Practitioner-Based Models of Specialist Palliative Care at Home: Sustainability and Evaluation of Feasibility

ContextPatients with serious medical problems who live at home may not be able to access specialist-level palliative care when the need develops. Nurse practitioner (NP)-based models may be able to increase the availability of specialist care in the community.ObjectivesThe aim of this study was to evaluate the financial sustainability and feasibility of two NP-based models in an urban setting.MethodsIn one model, an NP was linked with a social worker (SW) to create a new palliative home care team (PHCT-NP-SW), which would provide consultation and direct care to referred homebound elderly patients with advanced illnesses. In a second model, an NP was assigned to a hospice program (Hospice-NP) for the purpose of enhancing the reach and impact of a home care team. The revenue generated by each model was compared with direct costs; the PHCT-NP-SW model also was evaluated for its feasibility and impact on patient-level outcomes.ResultsOver a two-year period, the NP in the PHCT-NP-SW model made 350 visits and followed 114 patients at home. Annualized revenue through reimbursement from patient billing offset less than 50% of the NP’s salary costs. In contrast, the Hospice-NP model led to a 360% increment in hospice referrals, yielding sufficient new revenue to support this position indefinitely after only seven months. The PHCT-NP-SW model provided numerous interventions that yielded a significant decline in symptom distress during the initial two weeks after referral (P = 0.003), 100% compliance with advance care planning, 21% admission rate to hospice, access to other community services, and crisis management. Nonetheless, lack of funding led to closure of this model after the two years.ConclusionThis experience suggests that a PHCT-NP-SW model is not sustainable in this urban environment through reimbursement-based revenue, whereas a Hospice-NP model for hospice can be sustainable based on the growth of hospice census. The PHCT-NP-SW model appears to offer benefits, and additional efforts are needed to establish the funding mechanisms to sustain such programs, create mixed models of hospice and nonhospice funding, or provide a basis for sustainability through cost reduction.