Circumstances of hospital admissions in palliative care: A cross-sectional survey of patients admitted to hospital with palliative care needs.

BACKGROUND: On average, people will experience 2.28 hospital admissions in the last year of life with the likelihood of a hospital admission increasing in the last 2 weeks of life. Reducing hospital admissions has become a focus for high-income countries as they work to manage the financial implications of an ageing population. However, the circumstances by which patients with palliative care needs are admitted to hospital remain poorly understood. AIM: To explore the circumstances of hospital admissions for patients with palliative care needs. DESIGN: Cross-sectional survey design using face-to-face questionnaires. SETTING/PARTICIPANTS: In total, 116 patients aged >18 years admitted to a tertiary hospital with palliative care needs. RESULTS: Those with a non-cancer diagnosis and those aged over 75 years were less likely to have hospice involved prior to the admission ( x2 (1, n = 116) = 10.19, p = 0.00). Few patients recognised community services as having a role in enabling them to remain at home. Those with cancer placed a significantly higher priority on receiving information about their illness ( t(114) = 2.03, p = 0.04) and receiving tests and investigations ( t(114) = 2.37, p = 0.02) in hospital. CONCLUSION: This study has demonstrated the complexity of hospital admissions in palliative care. Further research is needed to explore patient perceptions of care at home and the role of community services to enable them to remain at home. Understanding the motivation to come to hospital in the context of an incurable illness and limited treatment options may help to inform the development of services that can enable better care at home.

Predictors of patient-related benefit, burden and feeling safe in relation to hospital admissions in palliative care: A cross-sectional survey.

BACKGROUND: Research exploring patient experience of palliative care in the hospital setting has previously been limited to negative aspects of care. However, recent studies have shown that patients with palliative care needs experience benefits being in hospital. Little is known about how experiences of benefit and burden vary according to socio-demographic and illness-related factors and how these experiences influence patient preferences to return to hospital. AIM: To identify factors influencing experiences of benefit and burden and the predictors associated with a preference to return to hospital in palliative care. DESIGN: Cross-sectional design using a questionnaire survey. SETTING/PARTICIPANTS: In total, 116 hospital inpatients admitted with palliative care needs in an urban hospital in New Zealand. Recruitment was from an oncology ward, four general medical wards and a respiratory ward. RESULTS: Those living in more deprived areas experienced more benefit being in hospital ( F(4, 109) = 3.15, p = 0.017), while younger people ( F(4, 109) = 4.44, p = 0.00) and those from Asian or Pacific cultures ( F(2, 111) = 7.78, p = 0.000) experienced more burden. Those with a non-cancer diagnosis felt less safe in hospital ( p = 0.04). 'Feeling safe' was a significant ( B = 0.14, p = 0.03) predictor for a preference to return to hospital. CONCLUSION: Deprivation, diagnosis, age and ethnicity influenced experiences of benefit and burden in hospital. 'Feeling safe' was a significant predictor for a preference to return to hospital. Further research is needed to understand why certain patient factors influence experiences of hospitalisation and how 'feeling safe' can be replicated in other care environments.

What cost components are relevant for economic evaluations of palliative care, and what approaches are used to measure these costs? A systematic review.

BACKGROUND: It is important to understand the costs of palliative and end-of-life care in order to inform decisions regarding cost allocation. However, economic research in palliative care is very limited and little is known about the range and extent of the costs that are involved in palliative care provision. AIM: To undertake a systematic review of the health and social care literature to determine the range of financial costs related to a palliative care approach and explore approaches used to measure these costs. DESIGN: A systematic review of empirical literature with thematic synthesis. Study quality was evaluated using the Weight of Evidence Framework. DATA SOURCES: The databases CINAHL, Cochrane, PsycINFO and Medline were searched from 1995 to November 2015 for empirical studies which presented data on the financial costs associated with palliative care. RESULTS: A total of 38 papers met our inclusion criteria. Components of palliative care costs were incurred within four broad domains: hospital care, community or home-based care, hospice care and informal care. These costs could be considered from the economic viewpoint of three providers: state or government, insurers/third-party/not-for-profit organisations and patient and family and/or society. A wide variety of costing approaches were used to derive costs. CONCLUSION: The evidence base regarding the economics of palliative care is sparse, particularly relating to the full economic costs of palliative care. Our review provides a framework for considering these costs from a variety of economic viewpoints; however, further research is required to develop and refine methodologies.

What do we know about different models of providing palliative care? Findings from a systematic review of reviews.

BACKGROUND: A wide range of organisational models of palliative care exist. However, decision makers need more information about which models are likely to be most effective in different settings and for different patient groups. AIM: To identify the existing range of models of palliative care that have been evaluated, what is already known and what further information is essential if the most effective and cost-effective models are to be identified and replicated more widely. DESIGN: A review of systematic and narrative reviews according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Study quality was assessed using the AMSTAR (A MeaSurement Tool to Assess Reviews) tool. DATA SOURCES: MEDLINE, EMBASE, PsycINFO, CINAHL, Cochrane Library, Web of Science and ASSIA were searched for reviews about models of service provision from 2000 to 2014 and supplemented with Google searches of the grey literature. RESULTS: Much of the evidence relates to home-based palliative care, although some models are delivered across care settings. Reviews report several potential advantages and few disadvantages of models of palliative care delivery. However, under-reporting of the components of intervention and comparator models are major barriers to the evaluation and implementation of models of palliative care. CONCLUSION: Irrespective of setting or patient characteristics, models of palliative care appear to show benefits and some models of palliative care may reduce total healthcare costs. However, much more detailed and systematic reporting of components and agreement about outcome measures is essential in order to understand the key components and successfully replicate effective organisational models.

Lay and professional stakeholder involvement in scoping palliative care issues: Methods used in seven European countries.

BACKGROUND: Stakeholders are people with an interest in a topic. Internationally, stakeholder involvement in palliative care research and health technology assessment requires development. Stakeholder involvement adds value throughout research (from prioritising topics to disseminating findings). Philosophies and understandings about the best ways to involve stakeholders in research differ internationally. Stakeholder involvement took place in seven countries (England, Germany, Italy, Lithuania, the Netherlands, Norway and Poland). Findings informed a project that developed concepts and methods for health technology assessment and applied these to evaluate models of palliative care service delivery. AIMS: To report on stakeholder involvement in the INTEGRATE-HTA project and how issues identified informed project development. DESIGN: Using stakeholder consultation or a qualitative research design, as appropriate locally, stakeholders in seven countries acted as 'advisors' to aid researchers' decision making. Thematic analysis was used to identify key issues across countries. SETTING/PARTICIPANTS: A total of 132 stakeholders (82 professionals and 50 'lay' people) aged ⩾18 participated in individual face-to-face or telephone interviews, consultation meetings or focus groups. RESULTS: Different stakeholder involvement methods were used successfully to identify key issues in palliative care. A total of 23 issues common to three or more countries informed decisions about the intervention and comparator of interest, sub questions and specific assessments within the health technology assessment. CONCLUSION: Stakeholders, including patients and families undergoing palliative care, can inform project decision making using various involvement methods according to the local context. Researchers should consider local understandings about stakeholder involvement as views of appropriate and feasible methods vary. Methods for stakeholder involvement, especially consultation, need further development.

STAKEHOLDER INVOLVEMENT THROUGHOUT HEALTH TECHNOLOGY ASSESSMENT: AN EXAMPLE FROM PALLIATIVE CARE.

OBJECTIVES: Internationally, funders require stakeholder involvement throughout health technology assessment (HTA). We report successes, challenges, and lessons learned from extensive stakeholder involvement throughout a palliative care case study that demonstrates new concepts and methods for HTA. METHODS: A 5-step "INTEGRATE-HTA Model" developed within the INTEGRATE-HTA project guided the case study. Using convenience or purposive sampling or directly / indirectly identifying and approaching individuals / groups, stakeholders participated in qualitative research or consultation meetings. During scoping, 132 stakeholders, aged ≥ 18 years in seven countries (England, Italy, Germany, The Netherlands, Norway, Lithuania, and Poland), highlighted key issues in palliative care that assisted identification of the intervention and comparator. Subsequently stakeholders in four countries participated in face-face, telephone and / or video Skype meetings to inform evidence collection and / or review assessment results. An applicability assessment to identify contextual and implementation barriers and enablers for the case study findings involved twelve professionals in the three countries. Finally, thirteen stakeholders participated in a mock decision-making meeting in England. RESULTS: Views about the best methods of stakeholder involvement vary internationally. Stakeholders make valuable contributions in all stages of HTA; assisting decision making about interventions, comparators, research questions; providing evidence and insights into findings, gap analyses and applicability assessments. Key challenges exist regarding inclusivity, time, and resource use. CONCLUSION: Stakeholder involvement is feasible and worthwhile throughout HTA, sometimes providing unique insights. Various methods can be used to include stakeholders, although challenges exist. Recognition of stakeholder expertise and further guidance about stakeholder consultation methods is needed.

Specialist palliative care nursing and the philosophy of palliative care: a critical discussion.

Nursing is the largest regulated health professional workforce providing palliative care across a range of clinical settings. Historically, palliative care nursing has been informed by a strong philosophy of care which is soundly articulated in palliative care policy, research and practice. Indeed, palliative care is now considered to be an integral component of nursing practice regardless of the specialty or clinical setting. However, there has been a change in the way palliative care is provided. Upstreaming and mainstreaming of palliative care and the dominance of a biomedical model with increasing medicalisation and specialisation are key factors in the evolution of contemporary palliative care and are likely to impact on nursing practice. Using a critical reflection of the authors own experiences and supported by literature and theory from seminal texts and contemporary academic, policy and clinical literature, this discussion paper will explore the influence of philosophy on nursing knowledge and theory in the context of an evolving model of palliative care.

The 'problematisation' of palliative care in hospital: an exploratory review of international palliative care policy in five countries.

BACKGROUND: Government policy is a fundamental component of initiating change to improve the provision of palliative care at a national level. The World Health Organisation's recognition of palliative care as a basic human right has seen many countries worldwide develop national policy in palliative and end of life care. There is increasing debate about what form comprehensive palliative care services should take, particularly in relation to the balance between acute and community based services. It is therefore timely to review how national policy positions the current and future role of the acute hospital in palliative care provision. The aim of this exploratory review is to identify the role envisaged for the acute hospital in palliative and end of life care provision in five countries with an 'advanced' level of integration. METHOD: Countries were identified using the Global Atlas of Palliative Care. Policies were accessed through internet searching of government websites between October and December 2014. Using a process of thematic analysis key themes related to palliative care in hospital were identified. RESULTS: Policies from Switzerland, England, Singapore, Australia and Ireland were analysed for recurring themes. Three themes were identified: preferences for place of care and place of death outside the hospital setting, unnecessary or avoidable hospital admissions, and quality of care in hospital. No policy focused upon exploring how palliative care could be improved in the hospital setting or indeed what role the hospital may have in the provision of palliative care. CONCLUSIONS: Palliative care policy in five countries with 'advanced' levels of palliative care integration focuses on solving the 'problems' associated with hospital as a place of palliative care and death. No positive role for hospitals in palliative care provision is envisaged. Given the rapidly increasing population of people requiring palliative care, and emerging evidence that patients themselves report benefits of hospital admissions, this area requires further investigation. In particular, a co-design approach to policy development is needed to ensure that services match the needs and wants of patients and families.

A qualitative study exploring the benefits of hospital admissions from the perspectives of patients with palliative care needs.

BACKGROUND: The acute hospital plays a significant role in caring for people with a life-limiting illness. Most research to date has focused exclusively upon the negative aspects of hospitalisation. Currently, there is little known about the benefits of hospital admissions for patients with palliative care needs. AIM: The aim of this study was to explore the benefits of hospital admissions, from the perspectives of patients with palliative care needs. DESIGN: A qualitative study design was adopted. Longitudinal, semi-structured, face-to-face interviews were used to elicit the views of patients admitted to hospital in one large urban acute hospital in New Zealand. SETTING/PARTICIPANTS: The study sample comprised 14 patients admitted to Auckland City Hospital between July 2013 and March 2014 who met one of the Gold Standard Framework Prognostic Indicators for palliative care need. RESULTS: Through a process of thematic analysis, four themes were identified from the data: being cared for and feeling safe, receiving care to manage at home, relief for family and 'feeling better and/or getting better'. The benefits of being in hospital were reported to extend beyond treatments received. Most participants reported their preference was to come to hospital even if they had been able to access the care they received in hospital at home. CONCLUSION: This research contributes to a greater understanding of the benefits associated with hospitalisation for patients with palliative care needs. The findings suggest that such benefits extend beyond the treatment patients receive and challenge current assumptions regarding the role of the acute hospital in palliative care.

Patient and family experiences of palliative care in hospital: what do we know? An integrative review.

BACKGROUND: In most developed countries, acute hospitals play a significant role in palliative care provision and are the setting in which most people die. They are often the setting where a life-limiting diagnosis is made and where patients present when symptoms develop or when they are not well managed. Understanding the experiences of hospital admissions for people with a life-limiting illness and their families is essential in understanding the role acute hospitals play in providing palliative care. AIM: The aim of this review is to synthesise current evidence regarding the experience of palliative care in an acute hospital setting from the perspectives of patient and family. DESIGN: An integrative review was completed using standard processes followed by a process of data extraction and synthesis. DATA SOURCES: Using predefined search terms, literature was sourced from five electronic databases including MEDLINE (EBSCO), CINAHL, EMBASE, Cochrane and PsycINFO between January 1990 and November 2011. Reference lists from relevant articles were cross-checked and pertinent journals hand searched for articles. RESULTS: In total, 32 articles were included in the review. Five recurring themes were identified from the synthesised data: symptom control and burden, communication with health professionals, decision-making related to patient care and management, inadequate hospital environment and interpersonal relationships with health professionals. CONCLUSION: This review has identified that, largely as a result of study design, our knowledge of patient and family experiences of palliative care in an acute hospital remains limited to discrete aspects of care. Further research is required to explore the total patient and family experience taking into account all aspects of care including the potential benefits of hospital admissions in the last year of life.

Economic impact of hospitalisations among patients in the last year of life: an observational study.

BACKGROUND: Hospital admissions among patients at the end of life have a significant economic impact. Avoiding unnecessary hospitalisations has the potential for significant cost savings and is often in line with patient preference. OBJECTIVE: To determine the extent of potentially avoidable hospital admissions among patients admitted to hospital in the last year of life and to cost these accordingly. DESIGN: An observational retrospective case note review with economic impact assessment. SETTING: Two large acute hospitals in the North of England, serving contrasting socio-demographic populations. PATIENTS: A total of 483 patients who died within 1 year of admission to hospital. MEASUREMENTS: Data were collected across a range of clinical, demographic, economic and service use variables and were collected from hospital case notes and routinely collected sources. Palliative medicine consultants identified admissions that were potentially avoidable. RESULTS: Of 483 admissions, 35 were classified as potentially avoidable. Avoiding these admissions and caring for the patients in alternative locations would save the two hospitals £5.9 million per year. Reducing length of stay in all 483 patients by 14% has the potential to save the two hospitals £47.5 million per year; however, this cost would have to be offset against increased community care costs. LIMITATIONS: A lack of accurate cost data on alternative care provision in the community limits the accuracy of economic estimates. CONCLUSIONS: Reducing length of hospital stay in palliative care patients may offer the potential to achieve higher hospital cost savings than preventing avoidable admissions. Further research is required to determine both the feasibility of reducing length of hospital stay for patients with palliative care needs and the economic impact of doing so.

Autonomy and choice in palliative care: time for a new model?

AIMS: This paper will examine understandings of autonomy and choice in relation to palliative and end-of-life care and identify implications for nursing practice. BACKGROUND: Autonomy in relation to patient-centred care and advocacy has been identified as a key component of palliative and end-of-life care provision internationally. Understandings of autonomy have emerged in an individualised framework, which may be inadequate in supporting palliative and end-of-life care. DESIGN: A critical discussion paper. DATA SOURCES: Seminal texts provide a backdrop to how autonomy is understood in the context of palliative care. An overview of literature from 2001 is examined to explore how autonomy and choice are presented in clinical practice. IMPLICATIONS FOR NURSING: A model of autonomy based on a 'decision ecology' model may be more applicable to palliative and end-of-life care. Decision ecology aims to situate the individual in a wider social context and acknowledges the relational dimensions involved in supporting choice and autonomy. Such a model recognizes autonomy around wider care decisions but may also highlight the everyday personal aspects of care, which can mean so much to an individual in terms of personal empowerment and dignity. CONCLUSION: A 'decision ecology' model that acknowledges the wider social context, individual narratives and emphasises trust between professionals and patients may support decision-making at end of life. Such a model must support autonomy not just at the level of wider decisions around care choice but also at the level of everyday care.

Extent of palliative care need in the acute hospital setting: a survey of two acute hospitals in the UK.

BACKGROUND: In common with international health policy, The End of Life Care Strategy for England has highlighted the delivery of high quality palliative care in the acute hospital setting as an area of priority. AIM: The aim of this study was to explore the extent of palliative care need in the acute hospital setting, and to explore agreement between different sources in the identification of patients with palliative care need. DESIGN: A cross-sectional survey of palliative care need was undertaken in two UK acute hospitals. Hospital case notes were examined for evidence of palliative care need according to Gold Standards Framework (GSF) prognostic indicator criteria. Medical and nursing staff were asked to identify patients with palliative care needs. Patients (or consultees) completed assessments of palliative care need. PARTICIPANTS: Of a total in-patient population of 1359, complete datasets were collected for 514 patients/consultees. RESULTS: 36.0% of patients were identified as having palliative care needs according to GSF criteria. Medical staff identified 15.5% of patients as having palliative care needs, and nursing staff 17.4% of patients. Patient self-report data indicated that 83.2% of patients meeting GSF criteria had palliative care needs. CONCLUSION: The results reveal that according to the GSF prognostic guide, over a third of hospital in-patients meet the criteria for palliative care need. Consensus between medical staff, nursing staff and the GSF was poor regarding the identification of patients with palliative care needs. This has significant implications for patient care, and draws into question the utility of the GSF in the hospital setting.

Symptom burden, palliative care need and predictors of physical and psychological discomfort in two UK hospitals.

BACKGROUND: The requirement to meet the palliative needs of acute hospital populations has grown in recent years. With increasing numbers of frail older people needing hospital care as a result of both malignant and non-malignant conditions, emphasis is being placed upon understanding the physical, psychological and social burdens experienced by patients. This study explores the extent of burden in two large UK hospitals, focusing upon those patients who meet palliative care criteria. Furthermore, the paper explores the use of palliative services and identifies the most significant clinical diagnostic and demographic factors which determine physical and psychological burden. METHODS: Two hospital surveys were undertaken to identify burden using the Sheffield Profile for Assessment and Referral to Care (SPARC). The Gold Standards Framework (GSF) is used to identify those patients meeting palliative care criteria. Participants were identified as being in-patients during a two-week data collection phase for each site. Data was gathered using face-to-face interviews or self-completion by patients or a proxy. Descriptive analyses highlight prevalence and use of palliative care provision. Binary logistic regression assesses clinical diagnostic predictor variables of physical and psychological burden. RESULTS: The sample consisted of 514 patients and elevated physical, psychological and social burden is identified amongst those meeting palliative care criteria (n = 185). Tiredness (34.6%), pain (31.1%), weakness (28.8%) and psychological discomfort (low mood 19.9%; anxiety 16.1%) are noted as being prevalent. A small number of these participants accessed Specialist Palliative Care (8.2%). Dementia was identified as a predictor of physical (OR 3.94; p < .05) and psychological burden (OR 2.88; p < .05), being female was a predictor of psychological burden (OR 2.00; p < .05). CONCLUSION: The paper highlights elevated levels of burden experienced by patients with palliative care requirements. Moreover, the paper also indicates that a large proportion of such patients are not in receipt of palliative approaches to their care. Furthermore, the paper identifies that those with non-malignant illnesses, especially dementia, may experience high levels of physical and psychological burden.

What is the extent of potentially avoidable admissions amongst hospital inpatients with palliative care needs?

BACKGROUND: There is clear evidence that the full range of services required to support people dying at home are far from being implemented, either in England or elsewhere. No studies to date have attempted to identify the proportion of hospital admissions that could have been avoided amongst patients with palliative care needs, given existing and current local services. This study aimed to examine the extent of potentially avoidable admissions amongst hospital patients with palliative care needs. METHODS: A cross sectional survey of palliative care needs was undertaken in two acute hospitals in England. Appropriateness of admission was assessed by two Palliative Medicine Consultants using the following data collected from case notes: reasons for admission; diagnosis and co-morbidities; age and living arrangements; time and route of admission; medical and nursing plan on admission; specialist palliative care involvement; and evidence of cognitive impairment. RESULTS: A total of 1359 inpatients were present in the two hospitals at the time of the census. Of the 654 consenting patients/consultees, complete case note data were collected for 580 patients; the analysis in this paper relates to these 580 patients. Amongst 208 patients meeting diagnostic and prognostic criteria for palliative care need in two acute settings in England, only 6.7% were identified as 'potentially avoidable' hospitalisations. These patients had a median age of 84. Half of the patients lived in residential or nursing homes and it was concluded that most could have received care in this setting in place of hospital. CONCLUSION: Our findings challenge assumptions that, within the existing configuration of palliative and end of life health and social care services, patients with palliative care needs experience a high level of potentially avoidable hospitalisations.

Awareness contexts revisited: indeterminacy in initiating discussions at the end-of-life.

AIMS: To explore if and how information about a transition to a palliative care approach was communicated to patients recently discharged from hospital and who fulfilled standardized criteria for palliative care need. BACKGROUND: Palliative care philosophy and, more recently, UK palliative care policy, endorse a context of 'open' awareness, where all parties openly acknowledge that the patient's death is approaching. The perceived benefits of making the patient aware of their prognosis encompass a variety of planning activities, which mean that death, when it occurs, is arguably more in keeping with the wishes of the patient. DESIGN: A qualitative inductive interview study conducted in 2010-2011. METHODS: Fifteen semi-structured interviews were conducted with 15 patients and 3 family carers. All patients were identified as having palliative care needs according to standardized criteria, 3-6 months after discharge from hospital. A thematic analysis was undertaken. FINDINGS: Contrary to the professed ideal of 'open' awareness, some participants were only partially aware and others wholly unaware that they were likely to be approaching the end-of-life. Those identified as unaware were over 85. Participants displayed a reluctance to acquire knowledge which would require them to face the imminence of death. CONCLUSION: Philosophy and policy aside, people do not always conform to the autonomy paradigm of a self-directed life followed by a self-directed death.

Prevalence and predictors of transition to a palliative care approach among hospital inpatients in England.

AIM: The aim of this research was to quantify the extent of palliative care transitions among patients in two acute hospitals and to identify factors predicting the initiation of a transition to palliative care. METHODS: We conducted a prospective survey of hospital inpatients in two hospitals in the United Kingdom in which we examined hospital case notes for evidence of palliative care need. Further data were collected from medical staff, nursing staff, patients, and proxy consultees. RESULTS: Of 514 participating patients, 183 (36.2 percent) fulfilled criteria for palliative care need. In 61 cases (33 percent), there was evidence of transition to a palliative care approach. There was an increased likelihood of palliative care transition among patients with cancer, dementia, or stroke. CONCLUSIONS: There is a need for discussion of the meaning, and operationalization, of palliative care transitions if UK policy to increase the extent of transitions is to be enacted. This study has implications internationally, given the increased global focus on the role of the acute hospital in palliative care.

A narrative literature review of older people's cancer pain experience.

AIMS AND OBJECTIVES: To synthesise current evidence about the experience of older people with cancer pain and consider how exploration of this may inform clinical practice and research. BACKGROUND: Cancer is more prevalent in older age. Evidence suggests that older people's pain is generally under-recognised and under treated. Pain is a significant concern for many people living and dying with cancer and may be of particular concern for older people who may have complex biopsychosocial needs. There is mounting evidence that older people and their families experience high level of unmet need generally and suboptimal pain in particular. DESIGN: Narrative literature review. METHOD: A comprehensive search of five electronic databases was undertaken between the years 1996-2010 inclusive. Inclusion criteria were primary research papers relating older peoples' experiences of cancer pain, incorporating the verbal report or narrative account of experience of cancer. RESULTS: Seventeen papers met the criteria for inclusion in the review. Three major themes emerged from the literature: (1) emotional experience identified by older people with cancer pain, (2) effects of pain on life and living, and (3) how communication affects the experience or expression of cancer pain including subthemes of validating, trust and cultural effects on the communication of pain. CONCLUSION: There is limited research about older people's cancer pain from the perspective of the person experiencing the pain. This review highlights the need for further research into living and dying with cancer pain which incorporates the unique and individual experience of older people. RELEVANCE TO CLINICAL PRACTICE: Understanding the complexity and nature of older people's cancer pain experience should inform appropriate effective care that improves quality of life and promotes independence and dignity. Culturally sensitive training in communication may enhance understanding of the needs of older people with cancer pain.

'That's part of everybody's job': the perspectives of health care staff in England and New Zealand on the meaning and remit of palliative care.

BACKGROUND: the right for patients of all diagnoses to be in receipt of palliative care from an early point in the diagnosis of a life-limiting condition is now enshrined in policy in a number of countries and increased emphasis is placed upon the role of generalist palliative care. However, little is known as to how this policy is enacted on the ground. AIM: to explore understandings of, and perceived roles in relation to, palliative care provision amongst generalist and specialist health care providers in England and New Zealand. DESIGN: qualitative data were collected via individual interviews and focus groups. SETTING/PARTICIPANTS: participants comprised generalist and specialist palliative care providers working in a variety of settings in England (n = 58) and New Zealand (n = 80). RESULTS: the following issues with significant implications for this new phase of development for palliative care were identified: (1) difficulties with terminology and perceived roles/responsibilities; (2) problems of integrating palliative care into a generalist workload; (3) challenges in generalist/specialist partnership working; and (4) the potential negative consequences of specialization. CONCLUSIONS: these data indicate that, within England and New Zealand, the policy rhetoric of universal palliative care provision is not being straightforwardly translated into service delivery and individual clinical practice. Further research is required to explore and evaluate different models of organization and service provision that empower 'generalists' to provide palliative care, without resulting in deskilling. Finally, definitional clarity at an academic/policy level is also needed.

Barriers and facilitators to the receipt of palliative care for people with dementia: the views of medical and nursing staff.

BACKGROUND: The global prevalence of dementia is set to rise to almost 65 million people by 2030, providing policy makers and practitioners with significant challenges, not least within the realms of end-of-life care. The international literature would suggest that people with dementia may benefit from palliative forms of care, but evidence indicates that many fail to access such provision at the end of life. The role of the health care team is pivotal if people with dementia are to benefit from the transition to palliative care. AIM: This paper reports on qualitative research conducted in the UK that sought to explore the experiences of health care practitioners working in palliative care and sought to establish the issues relating to end-of-life care for people with dementia. DESIGN: Eight focus groups and four individual interviews were held. Data were analysed using a thematic approach. SETTING/PARTICIPANTS: The study included palliative care practitioners (n = 58) including medical, nursing and allied health professionals. Participants were recruited from acute hospitals, general practice, hospices and specialist palliative care units in the UK. RESULTS: Four themes were identified: Making the transition; Competence challenged; 'The long view' and Working together. Whilst there exists good practice in this area, the barriers to timely and appropriate transitions to palliative care for people with dementia and their families continue to exist. The paper concludes with recommendations for policy and practice development.