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The number of older people dying in long-term care facilities (LTCFs) is increasing globally, but care quality may be variable. A framework was developed drawing on empirical research findings from the Palliative Care for Older People (PACE) study and a scoping review of literature on the implementation of palliative care interventions in LTCFs. The PACE study mapped palliative care in LTCFs in Europe, evaluated quality of end-of-life care and quality of dying in a cross-sectional study of deceased residents of LTCFs in 6 countries, and undertook a cluster-randomized control trial that evaluated the impact of the PACE Steps to Success intervention in 7 countries. Working with the European Association for Palliative Care, a white paper was written that outlined recommendations for the implementation of interventions to improve palliative and end-of-life care for all older adults with serious illness, regardless of diagnosis, living in LTCFs. The goal of the article is to present these key domains and recommendations. Transparent expert consultation. International experts in LTCFs. Eighteen (of 20 invited) international experts from 15 countries participated in a 1-day face-to-face Transparent Expert Consultation (TEC) workshop in Bern, Switzerland, and 21 (of 28 invited) completed a follow-up online survey. The TEC study used (1) a face-to-face workshop to discuss a scoping review and initial recommendations and (2) an online survey. Thirty recommendations about implementing palliative care for older people in LTCFs were refined during the TEC workshop and, of these, 20 were selected following the survey. These 20 recommendations cover domains at micro (within organizations), meso (across organizations), and macro (at national or regional) levels addressed in 3 phases: establishing conditions for action, embedding in everyday practice, and sustaining ongoing change. We developed a framework of 20 recommendations to guide implementation of improvements in palliative care in LTCFs. [ABSTRACT FROM AUTHOR]

A fundamental element of quality healthcare is that provision is accessible to all users and culturally sensitive to them. However, there is evidence to suggest that there is inequity of provision across all cultures. Furthermore, there is a paucity of published research in the United Kingdom concerning palliative care for minority ethnic families with a life-threatened or life-limited child or young person. The article sets out to discuss the findings of a literature review and, drawing on current work by the Centre for Children and Families Applied Research at Coventry University under the leadership of Professor Jane Coad, to explore the interface between South Asian cultures and the experience of palliative care services of children, young peoples, and families. All families require a broad range of services which are appropriately delivered and accessible throughout the trajectory of their child's illness. The literature review findings reveal that how families understand concepts such as health and disease arise from the complex interaction between personal experience and cultural lifestyle including language, family values, and faith. There is an urgent need to involve South Asian families in research in order to provide a robust evidence-base on which to develop service provision so that care is matched to the unique needs of individuals concerned. [ABSTRACT FROM AUTHOR]

Background: Liver disease is a growing health concern and a major cause of death. It causes multiple symptoms, including financial, psychological and social issues. To address these challenges, palliative care can support people alongside active treatment, and towards the end of life, but little is known about the care experiences of individuals with liver disease in the United Kingdom. This review aimed to explore the palliative and end‐of‐life care experiences of people with liver disease in the United Kingdom. Method: A systematic review was conducted using a five‐stage process and following Preferred Reporting Items for Systematic Reviews and Meta Analyses guidelines. Searches were across Web of Science, Scopus, EBSCO and grey literature until 10 May 2023. The review was registered through International Prospective Register of Systematic Reviews (PROSPERO). NVivo 12.5 was used to facilitate data analysis (systematic review registration: PROSPERO CRD42022382649). Results: Of 6035 papers (excluding duplicates) found from searches, five met the inclusion criteria of primary research related to adults with liver disease receiving palliative and/or end‐of‐life care in the United Kingdom, published in English. Reflexive thematic analysis of the data was conducted. The themes identified were the experiences of people with liver disease of relating to healthcare professionals, using services, receiving support, and experiences of information and communication. These were connected by an overarching concept of disempowerment versus empowerment, with the notion of person‐centred care as an important feature. Conclusion: This review has found variations in the care experiences of people with advanced liver disease towards the end of life and an overall lack of access to specialist palliative care services. Where services are designed to be person‐centred, experiences are more empowering. Further research is needed but with recognition that it is often unclear when care for people with liver disease is palliative or end‐of‐life. Patient and Public Contribution: An online public involvement workshop was held on 18 April 2023 through Voice (2023). This included four people with liver disease and four carers to discuss the review findings and to design a qualitative research study to further explore the topic. [ABSTRACT FROM AUTHOR]

Background Given the globally ageing population, care homes have an important role in delivering palliative and end-of-life care. Advance care planning (ACP) is promoted to improve the quality of end-of-life care in this setting. While many professionals can be involved in ACP, little is known about what influences multi-professional involvement and how multi-professional working impacts the ACP process in the UK. This study investigated multi-professional practice in relation to ACP in nursing homes. Design and methods An ethnography was undertaken in two UK nursing homes using multiple methods of data collection: observations, interviews and document review. Participants included the following: nursing home residents (n  = 6), relatives (n  = 4), nursing home staff (n  = 19), and visiting health and social care professionals (n  = 7). Analysis integrated thematic analysis, mapping of resident ACP trajectories and documentary analysis. Findings This paper suggests that multi-professional and relatives' involvement in ACP was disjointed. Continuity and coordination were disrupted by misalignment of visiting professional and nursing home organisational structures. Findings show a 'knotworking' approach to teamwork and power imbalance between nursing home staff and visiting professionals, such as general practitioners. While residents wished their relatives to be involved in their ACP, this was not formally recognised, and limited support existed to facilitate their involvement. Conclusion The structure and organisation of multi-professional and relatives' involvement in ACP led to fragmentation of the process. This marginalised the voice of both the resident and nursing home staff, thereby limiting ACP as a tool to enhance quality of end-of-life care. [ABSTRACT FROM AUTHOR]

People living on a low income are less likely to access palliative care in the UK; however, beyond the statistics, little is known about the impact of poverty on attitudes towards death and experiences of dying and bereavement. Covid-19 has disproportionally affected poorer communities and foregrounded issues of social and health inequalities including experiences of loss and grief. Whilst this might suggest an opportune moment for embracing inclusive health-promoting approaches to palliative care, this paper argues that the centrality of concepts such as choice within such approaches, and assumptions about what constitutes a 'good death', disregard the ways in which structural, social and economic aspects of poverty interface with attitudes towards and experiences of dying, and may exacerbate inequalities in death and dying. [ABSTRACT FROM AUTHOR]

Background: Racial disparities in pain management have been observed in the USA since the 1990s in settings such as the emergency department and oncology. However, the palliative care context is not well described, and little research has focused outside of the USA or on advanced disease. This review takes a cross-national approach to exploring pain management in advanced disease for people of different racial and ethnic groups. Methods: Mixed methods systematic review. The primary outcome measure was differences in receiving pain medication between people from different racial and ethnic groups. Five electronic databases were searched. Two researchers independently assessed quality using JBI checklists, weighted evidence, and extracted data. The quantitative findings on the primary outcome measure were cross-tabulated, and a thematic analysis was undertaken on the mixed methods studies. Themes were formulated into a conceptual/thematic matrix. Patient representatives from UK ethnically diverse groups were consulted. PRISMA 2020 guidelines were followed. Results: Eighteen papers were included in the primary outcome analysis. Three papers were rated 'High' weight of evidence, and 17/18 (94%) were based in the USA. Ten of the eighteen (56%) found no significant difference in the pain medication received between people of different ethnic groups. Forty-six papers were included in the mixed methods synthesis; 41/46 (89%) were based in the USA. Key themes: Patients from different ethnically diverse groups had concerns about tolerance, addiction and side effects. The evidence also showed: cultural and social doctor-patient communication issues; many patients with unmet pain management needs; differences in pain assessment by racial group, and two studies found racial and ethnic stereotyping. Conclusions: There was not enough high quality evidence to draw a conclusion on differences in receiving pain medication for people with advanced disease from different racial and ethnic groups. The mixed methods findings showed commonalities in fears about pain medication side effects, tolerance and addiction across diverse ethnic groups. However, these fears may have different foundations and are differently prioritised according to culture, faith, educational and social factors. There is a need to develop culturally competent pain management to address doctor-patient communication issues and patients' pain management concerns. Trial registration: PROSPERO-CRD42020167890. [ABSTRACT FROM AUTHOR]

In this paper, I will share findings from a qualitative study that offers a thematic analysis of 76 interviews with Muslim patients and families as well as doctors, nurses, allied health professionals, chaplains and community faith leaders across the United Kingdom. The data show that for many Muslims, Islam—its texts and lived practice—is of central importance when they are deliberating about death and dying. Central to these deliberations are virtues rooted within Islamic theology and ethics, the traditions of adab (virtue) and aqhlaq (proper conduct). Themes analysed include theological and moral understandings around the virtues of hope and acceptance. The study provides an analysis of these themes in relation to the experiences of Muslim patients and families arriving at meaning making around death and dying and how this interfaces with their interaction with biomedicine and healthcare. The study shows that the juxtaposition of different values and moral frameworks require careful negotiation when Muslim patients and families encounter the healthcare system. The study also describes how healthcare professionals and staff of other faiths and no faith encounter Muslim beliefs and practices, and the challenges they face in interpreting virtues and values rooted in faith, especially when these are perceived to be mutually opposed or inconsistent. [ABSTRACT FROM AUTHOR]

Paramedics frequently encounter patients requiring palliative and end of life care. This is anticipated to increase with an ageing UK population, a strengthening preference for care and death to occur in the home, alongside pressurized community services. Nationally education is lacking and despite localized efforts of improvement, widespread change within ambulance services to advance the quality of care for this patient group has been slow to emerge. This paper describes two UK ambulance service improvement programmes that have sought to address this need. South Western Ambulance Service NHS Foundation Trust and London Ambulance Service NHS Trust collaborated with a nationally renowned charity, Macmillan Cancer Support, to create innovative programmes of change. Both services targeted data exploration, valued inter-professional learning and effectively engaged local stakeholders. Experience demonstrates the need for collaboration with specialist palliative care and dependence on community services to access support and alternatives to hospital conveyance. This paper considers the future for end of life care leadership in UK ambulance services and the development of specialist paramedic roles. While the future of an alliance of paramedicine and palliative care is yet to be fully realized, our work exhibits the significant progress made by UK ambulance services. [ABSTRACT FROM AUTHOR]

Aim: To explore perspectives of Mesothelioma UK clinical nurse specialists (CNSs) on their role in providing palliative care for patients with mesothelioma and their families. Design: A qualitative descriptive approach using focus group and interview methods. Methods: Focus groups and semi‐structured interviews were conducted with 16 Mesothelioma UK clinical nurse specialists using the online software Google Meet. Data collection was carried out in Jan‐Feb 2021 and data were analysed using thematic analysis. The consolidated criteria for reporting qualitative research (COREQ) was used as the reporting guideline for this paper. Results: Four main themes were identified from the data: Mesothelioma UK clinical nurse specialist role in relation to palliative care; joint working with specialist palliative care and community services; patients and family carer's willingness to engage with palliative care services; and the impact of COVID‐19 on palliative care for mesothelioma patients. Conclusion: This study provides valuable insights into palliative care needs in mesothelioma. Patients with mesothelioma and their families have significant palliative care needs throughout the course of their illness from diagnosis to the end of life. Mesothelioma UK CNS's play a crucial role in supporting patients' and families palliative care needs, and are highly skilled in providing this care. Impact By acknowledging the role of Mesothelioma UK CNS's in palliative care provision, and supporting collaborative working between specialist and generalist palliative care providers, there is the capacity to significantly improve palliative care in mesothelioma and improve outcomes for patients and their families. [ABSTRACT FROM AUTHOR]

Background: Access to affordable, appropriate housing is one of the key social determinants of health, affecting well-being across the lifecourse. However, beyond a recognition that housing quality is linked to place of death, little is known about the ways in which housing status impacts social, emotional, and practical aspects of dying and bereavement. Method: The Checking Out project is a qualitative study aiming to explore the ways in which socio-economic status impacts people's experiences of, and attitudes towards, death, dying, and bereavement in the United Kingdom. Qualitative interviews were carried out with 14 bereaved individuals with experience of poverty at end of life or in bereavement, and 15 professionals supporting individuals in low-income communities. Interviews were conducted via phone/video call, and data include experiences of end of life and bereavement both before and during the pandemic. Transcripts were examined using thematic analysis. Results: Housing emerged as an important factor affecting people's experiences, with 7 of the 14 bereaved individuals and all except 1 of the professionals discussing housing-related issues. Participants described ways in which unsuitable housing and housing insecurity impacted practical aspects of dying but also emotional and social well-being at end of life. Housing-related issues affected both patients and their families, though families found it difficult to air these concerns when their relative was dying. Conclusion: The paper demonstrates how trusted professionals are able to advocate or address the issues faced by bereaved individuals and suggests implications for policy and practice. A greater awareness of the potential impact of housing status across public services, including healthcare practitioners, welfare support, and housing providers, could better support patients and practitioners to address these issues proactively. Housing providers and policy-makers should be included as key partners in collaborative public health approaches to palliative care. [ABSTRACT FROM AUTHOR]

Background: The involvement of speech and language therapists (SLTs) within paediatric palliative care (PPC) settings has been recognized within the extant literature. However, there is little understanding of SLT's specific roles and practices when working with this vulnerable cohort of children and their families. As part of a larger body of work to develop consensus‐based recommendations for SLTs working in PPC, it is important to investigate demographic and caseload characteristics. Aims: This exploratory study aimed to gather previously undocumented international demographic data pertaining to SLT service provision, caseload and training in PPC. Additionally, it sought to ascertain the current treatment and assessment approaches of SLTs, and if variations exist in beliefs and practices. Methods & Procedures: An anonymous cross‐sectional survey was designed and reported according to the Checklist for Reporting Results of Internet E‐Surveys (CHERRIES). The online survey consisted of 40 items spanning four domains: (1) demographic information, (2) caseload information, (3) service provision and (4) training and education. SLTs from Australia, Canada, New Zealand, the UK, Ireland and the United States were recruited using a purposive snowball sampling approach. Descriptive analysis of closed‐ended survey responses and content analysis of open‐ended responses are presented. Outcomes & Results: A total of 52 respondents completed the survey. SLTs worked in a variety of PPC settings, with patients of varying age and disease groups. Over 50% of participants reported working in PPC for ≤ 4 years. Genetic disorders (34%), oncology (27%) and neurological conditions (21%) made up a significant portion of respondents' caseloads. Reported treatments and assessment approaches used by SLTs are not unique to a PPC population. Barriers and enablers for practice were identified. A portion of participants did not feel trained and prepared to assess (19.2%) or treat (15.4%) PPC clients. Conclusions & Implications: This study confirms that SLTs internationally have a role in the management of communication and swallowing impairments in a PPC context. However, whether current training and resources adequately support SLTs in this role remains questionable. This paper helps to provide SLTs, administrators, professional associations and tertiary institutions with foundational data to help inform workforce planning, advocacy efforts and training priorities. What this paper addsWhat is already known on the subjectThe published multidisciplinary literature has identified that SLTs have a role in PPC. However, there has been no targeted research investigating the professional characteristics of clinicians in this context, nor any detailed information regarding associated clinician beliefs or management approaches.What this paper adds to existing knowledgeThis study is a snapshot of attributes, practice patterns and beliefs of SLTs who work with a PPC population. It highlights SLT perspectives of education and training, as well as meta‐perceptions of themselves within the multidisciplinary team.What are the potential or actual clinical implications of this work?Data presented in this paper will help to enable SLTs, organizations and associations to augment service provision and determine future professional development priorities within the field of PPC. [ABSTRACT FROM AUTHOR]

Background: Many palliative care health settings that care for children and young people (CYP) at the end of life use the buccal mucosa as a route of drug administration to manage the sudden onset of symptoms, such as seizures, agitation and dyspnoea, and for breakthrough pain management. The buccal route is a minimally invasive method that delivers fast symptom relief and is useful for those with swallowing impairment or reduced enteral absorption. Aim: This paper reports on a small retrospective study involving 26 CYP who received end-of-life care between January and December 2017 to review the advantages and disadvantages of using buccal opioids for breakthrough pain relief with a focus on diamorphine as the preferred opioid. Method: A retrospective case note review. Findings: This paper shares the clinical practice experiences from one UK organisation of care for CYP at the end of their lives and contributes to the growing body of pharmacological evidence. Conclusion: Buccal opioids, specifically buccal diamorphine, are an effective strategy to treat breakthrough pain or dyspnoea in CYP. [ABSTRACT FROM AUTHOR]

The demands and costs of health care resulting from increasingly ageing populations have become a major public health issue in the United Kingdom and other industrially developed nations. Concern with cost containment and shortage of resources has prompted a progressive shift in responsibility from state provision of care to individual patients and their families, and from the institutional setting of the hospital to the domestic home. Under the guise of choice and patient centredness, end-of-life care is framed within a discourse of the ‘good death’: free from distress and discomfort and accompanied by significant others in the preferred place, usually assumed to be home. The promotion of the ‘good death’ as a technical accomplishment enabled by pre-emptive discussion and advance care planning has sidelined recognition of the nature and significance of the pain and suffering involved in the experience of dying. There has been little research into the disparity between policy and professional assumptions and the lived reality of end of life. In this paper, we present findings from a qualitative study of how terminally ill patients, bereaved family members, and members of the public understand, anticipate, and experience death and dying. These findings contribute to an important and timely critique of the normative idealisation of death and dying in health policy and practice, and the need to attend closely to the real-world experiences of patients and the public as a prerequisite for identifying and remedying widespread shortcomings in end-of-life care. [ABSTRACT FROM AUTHOR]

Objectives: Electrochemotherapy uses electric fields to facilitate the influx of chemotherapy into cancer cells, producing a targeted effect. For head and neck cancer, it is mainly used for palliation of non-skin-origin metastases. It is used infrequently in the UK. This paper presents our experience and a UK survey to identify its frequency of use. Methods: Between 2016 and 2019, a prospective database was created and reviewed. Only patients with non-skin-origin metastatic head and neck cancer, with no other palliative options, were included. Survival length, complications and symptomatic benefit were assessed. The survey was conducted via e-mail. Results: Five patients were included: three with squamous cell carcinoma, one with esthesioneuroblastoma and one with hepatocellular carcinoma. Survival ranged from 1 month to over 20 months. Minor complications were seen. Only 15 out of 69 UK head and neck multidisciplinary teams offer electrochemotherapy. Conclusion: Electrochemotherapy is a well-tolerated adjunct to standard palliation of metastatic head and neck cancer, and is offered by a limited number of UK multidisciplinary teams. [ABSTRACT FROM AUTHOR]

Background: Most deaths occur in people over the age of 65 years, yet there is widespread evidence that older people have inequitable access to good palliative and end-of-life care. For people with dementia, there are further barriers to receiving palliative care. Identifying when older people with dementia are reaching the end of their lives is not straightforward. A palliative approach to care has been recognised as key in UK practice guidance; the National Institute of Health and Care Excellence recommends that, from diagnosis, people living with dementia should be offered flexible, needs-based palliative care that takes into account how unpredictable dementia progression can be. However there are still wide gaps in care in the dementia pathway, largely because commissioning is fragmented. Method: This paper describes the Admiral Nurse case management approach to palliative care by benchmarking its practice against the European Association of Palliative Care white paper recommendations for palliative care in dementia. [ABSTRACT FROM AUTHOR]

Background: Telehealth is growing and its application in palliative care is seen as a solution to pressures on palliative care services. A 2010 UK review reported growing awareness of telehealth in palliative care but a lack of evidence-based research to support its use. The primary aim of this review was to describe the current use of telehealth in palliative care in the UK and evaluate telehealth initiatives against a digital service standard. The secondary aim was to explore whether telehealth results in a reduction in emergency care access. Methods: Systematic review of the literature with thematic synthesis. Records were screened and data extracted by two reviewers. EMBASE, MEDLINE, CINAHL, Psychinfo and Cochrane central register for controlled trials were searched using pre-defined terms. Hand searching of conference literature, thesis databases and citation tracking was also conducted. The protocol for this systematic review was registered with PROSPERO and can be found at http://www.crd.york.ac.uk/PROSPERO/display%5frecord.php?ID=CRD42017080038. Results: The search identified 3807 titles and 30 studies were included in the review. Telehealth was used to support patients and carers, electronic record keeping and professional education. Notably, the number of home telemonitoring initiatives for patients had increased from the 2010 review. Despite this variety, many studies were small scale, descriptive and provided little evidence of evaluation of the service. Ten papers were sufficiently detailed to allow appraisal against the digital service standard and only one of these met all of the criteria to some extent. Seven studies made reference to emergency care access. Conclusions: Although there is growth of telehealth services, there remains a lack of evaluation and robust study design meaning conclusions regarding the clinical application of telehealth in palliative care cannot be drawn. There is insufficient evidence to appreciate any benefit of telehealth on access to emergency care. Future work is needed to evaluate the use of telehealth in palliative care and improve telehealth design in line with digital service standards. [ABSTRACT FROM AUTHOR]

In the palliative phase of a person's illness, the needs of the patient and informal caregivers are paramount. Caregivers often look to palliative care practitioners for support, guidance and emotional comfort. This article reviews the role of the informal caregiver at the end of life, summarising their concerns and needs. The paper also highlights caregiver difficulties in making the coping transition when the patient's medical condition becomes advanced and they require end-of-life care. The focus of the review is placed on discussions about Advanced Care Planning (ACP). ACP is a complex legal, ethical and practical issue that can enable caregivers to consider future strategies and enable them to provide high quality care at the end of life. The paper looks at some of the ethical and legal issues associated with this sensitive end-of-life issue. [ABSTRACT FROM AUTHOR]

Background: metastatic spinal cord compression (MSCC) is an oncology emergency. Prevalence is increasing. Treatment and care are complex and those diagnosed may be faced with life-changing challenges. Aims: to review the impact and management of MSCC in patients with cancer, in order to analyse nursing considerations for supporting patients. Methods: a literature review and thematic analysis of five primary research papers, published between 2009 and 2014. Findings: two themes of prognosis/survival time and independence versus dependence were discovered. Conclusions: the onset of MSCC may result in paralysis and associated loss of independence, impacting on a patient's quality of life. Understanding individuals' prognosis and treatment/care preferences is fundamental for the sensitive, individualised support of patients with MSCC. The findings reinforce the nurses' role in health education, in order to raise awareness of MSCC and promote early diagnosis so that patients maintain function and independence as long as possible. The findings support the need for nurses to be equipped with appropriate communication skills to initiate and engage in sensitive, difficult and proactive conversations with patients and their families, supporting the delivery of humanised care. [ABSTRACT FROM AUTHOR]

Background: Despite a fast-paced environment, the emergency clinician has a duty to meet the palliative patient's needs. Despite suggested models and interventions, this remains challenging in practice. Aim: To raise awareness of these challenges by exploring the experience of palliative care patients and their families and informal carers attending the emergency department, and of the clinicians caring for them. Design: Qualitative systematic literature review and thematic synthesis. Search terms related to the population (palliative care patients, family carers, clinicians), exposure (the emergency department) and outcome (experience). The search was international but restricted to English and used a qualitative filter. Title, abstracts and, where retrieved, full texts were reviewed independently by two reviewers against predefined inclusion criteria arbitrated by a third reviewer. Studies were appraised for quality but not excluded on that basis. Data sources: MEDLINE [1946-], Embase[1947-], CINAHL [1981-] and PsycINFO [1987-] with a bibliography search. Results: 19 papers of 16 studies were included from Australia (n = 5), the United Kingdom (n = 5), and United States (n = 9) representing 482 clinical staff involved in the emergency department (doctors, nurses, paramedics, social workers, technicians), 61 patients and 36 carers. Nine descriptive themes formed three analytic themes: 'Environment and Purpose', 'Systems of Care and Interdisciplinary Working' and 'Education and Training'. Conclusion: In the included studies, provision of emergency palliative care is a necessary purpose of the emergency department. Failure to recognise this, gain the necessary skills or change to systems better suited to its delivery perpetuates poor implementation of palliative care in this environment. [ABSTRACT FROM AUTHOR]

This paper describes research undertaken as part of an MA study in leadership. It draws on interviews with six high profile leaders at the fore front of end of life care sector in the UK. Its findings and emerging themes offer insights about the opportunities for social work leaders in palliative care in the future and how the profession and palliative care sector address current barriers to taking advantage of such opportunity. The main focus of this paper is leadership related to palliative care social work. However, it relates to much broader themes including the history, politics and culture of this profession and the requirements for leadership on the part of social work in the broader contexts of health and social care. [ABSTRACT FROM AUTHOR]

Introduction Research in palliative care (PC) is often regarded as challenging due to the vulnerability of the population and other peculiarities. We aim to systematically identify barriers to research in PC in the literature. Methods The electronic databases CINAHL, MEDLINE were searched for papers published in the last 25 years. Citations and then abstracts were screened for inclusion. Original papers were included on first-level analysis. On a second level reviews, reports, and position papers were analyzed. Papers containing a direct patient report were specifically analyzed. Barriers were categorized (ethical considerations, financial and time expenses, study design and methodology, human resources and politics) and results quantified. Results Twenty-one original papers and 65 other papers were included. Five studies involved patients directly, five were systematic reviews, three were study experiences, and seven were surveys or workshop reports. Most papers originated from UK, USA, or Norwegian Universities. Ethics and methods were the most often mentioned categories on both levels. Accrual, attrition, and gatekeeping were frequently named barriers. Complex invasive studies or possible side effects hinder patients' participation, as patients are often willing to participate for altruistic motivations. Discussion Barriers to PC research are ethical concerns and methodological challenges. Possible strategies to overcome methodological barriers include international collaborative efforts to include more patients and improve study designs. Ethical barriers indicate the need for patient involvement in the research development process and tailoring research specifically to the PC population. [ABSTRACT FROM AUTHOR]

Aim: To explore the role of UK district nurses in providing care for adult patients with a terminal diagnosis by reviewing qualitative research. Design: Meta-ethnography was used to conduct the synthesis. Data sources: CINAHL, MEDLINE and British Nursing Index (BNI) were searched comprehensively for primary research relating to the role of UK district nurses in palliative care. Review methods: The abstracts and titles of 700 papers were screened against inclusion criteria, of these 97 full papers were appraised. Some 24 studies reported in 25 papers were selected for inclusion in the synthesis. Findings: In total, five key themes were identified: valuing the role; practical role; relationships with patients and families; providing psychological support; and role uncertainty. Further synthesis yielded two ‘lines of argument’. The concept of the ‘expert friend’ argues that the atypical relationship district nurses cultivate with patients underpins district nurses’ provision of palliative care and profoundly influences the nature of psychological support given. Secondly, the concept of ‘threat and opportunity’ encapsulates the threat district nurses can feel to their traditional role in palliative care through changing health and social policy, while recognising the benefits that access to specialist knowledge and better training can bring. Conclusion: The findings have implications for understanding the motivators and barriers experienced by district nurses delivering palliative care in a time of unprecedented change to community health services [ABSTRACT FROM AUTHOR]

AimTo synthesize information about management of end of life care in people with dementia using review papers.BackgroundThere are increasing numbers of people being diagnosed with dementia worldwide, and the needs of people with dementia and their carers at the end of life may be different from those with other chronic diseases. By highlighting the challenges of palliative care in persons with dementia and the ways they are best managed, practitioners in primary care may be able to improve services for this group of people at the end of life.MethodsA search of electronic databases of English language papers published in peer-reviewed journals, 2000–2011 inclusive was undertaken using broad terms related to palliative care and dementia. 6167 papers were identified. Titles and abstracts were read. Papers were included if they were literature reviews of palliative or end of life care for people with dementia/Parkinson's disease/Lewy body dementia/cognitive impairment/Alzheimer's disease or any other cognitive impairment, in any setting (hospital, care home, community) and covering people of all ages. Papers were excluded if they covered palliative care focusing on other conditions, or were about an aspect of dementia care and treatment not related to palliative care.FindingsOur critical synthesis generated five main themes from this review of the reviews: (1) carers’ (family caregivers’) experiences; (2) person-centred care; (3) practice (including advance care planning, pain and comfort, nutrition, medical complications and minimizing the distress of behavioural symptoms); (4) system factors, including ethical dilemmas, decision making, information, and training; and (5) research priorities. There appears to be good evidence on the care and management of patients with dementia at the end of life which can be used to influence policy development and emerging specificity about research priorities in palliative care practice for people with dementia. [ABSTRACT FROM PUBLISHER]

Background: This paper outlines the structure, processes and outcomes of a 12-month development programme for nurses who were transitioning from a practice-based training role to a practice development role. The programme was part of organisational commitment to develop a personcentred culture. A new team of practice development facilitators across the UK was formed at Marie Curie, a UK-based charity supporting persons with palliative and end-of-life care needs. Aim: The overall aim of the programme was to enable practice development facilitators to engage with the theory and practice of practice development, and to develop as enablers in the delivery of person-centred practice. Method: A co-designed, multimethod evaluation of the programme, which adopted emancipatory practice development and active learning methodologies. Data collection included fourth-generation evaluation, reflective writing, participant stories and examples of practice change. Findings: The programme supported a change in focus of participants' role from technical to emancipatory. The team identified new ways of engaging together that enabled them to embody personcentredness. By experiencing active learning, they came to a better understanding of themselves and their practice. Throughout the programme, the team experienced a range of organisational challenges that impacted on their progress. Development of facilitation skills and a strong community of practice will enhance the embeddedness and sustainability of the new role. Conclusions: Facilitators of practice development can be catalysts in the development of personcentred cultures, which are indicative of flourishing organisations. To be sustainable, initiatives such as this one need to be included in organisational strategy. A sense of wellbeing and renewed commitment to develop practice in ways that keep person-centred care at its heart can be experienced through experiencing human flourishing. Key messages: • Making explicit values and beliefs at the beginning of a programme enables social learning and innovation in practice • Investment in practice development can be a catalyst in developing person-centred cultures • Role modelling person-centredness has a positive impact on staff wellbeing and person-centred practices • Embedding communities of practice maintains the momentum of new ways of working [ABSTRACT FROM AUTHOR]

Despite the widespread use of Health Care Support Workers (HCSWs) in providing palliative and end-of-life care, there is little information available about their contributions towards supporting patients who want to be cared for at home or to die at home. Between January and April 2011, a systematic review was conducted to address two questions: (i) What particular tasks/roles do HCSWs perform when caring for people at the end of life and their families to comply with their desire to remain at home?; (ii) What are the challenges and supporting factors that influence HCSWs' ability to provide palliative and end-of-life care in the community? Databases searched for relevant articles published between 1990 until April 2011 included CINAHL, EMBASE, PsychINFO, British Nursing Index, Web of Science, Medline and ASSIA. In total, 1695 papers were identified and their titles and abstracts were read. Ten papers met the eligibility criteria of the study. After the methodological quality of the studies was appraised, nine papers were included in the review. Judgements regarding eligibility and quality were undertaken independently by the authors. The findings indicate that HCSWs invest a great deal of their time on emotional and social support as well as on assisting in the provision of personal care. They are also involved in providing care for the dying, respite care for family members and offer domestic support. Although it is important to acknowledge the many positive aspects that HCSWs provide, the findings suggest three challenges in the HCSWs role: emotional attachment, role ambiguity and inadequate training. Support factors such as informal peer grief-support groups, sense of cohesiveness among HCSWs and task orientation enabled HCSWs to overcome these challenges. To conclude, induction and training programmes, a defined period of preceptorship, appropriate support, supervision and clearly defined role boundaries may be helpful in reducing the challenges identified in HCSWs' roles. [ABSTRACT FROM AUTHOR]

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 nonmalignant 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. [ABSTRACT FROM AUTHOR]

In the UK there has been a widespread introduction of 'anticipatory prescribing' in community based palliative care. This involves general practitioners (GPs) writing prescriptions in anticipation of them being needed and has been encouraged to try to minimise the risk of patients suffering uncontrolled symptoms and distress; a key reason why terminally ill patients are admitted to hospital in contradiction of most people's preferences. This paper presents the findings from an ethnographic study of healthcare professionals across four care homes and four community sites in two regions (East Midlands and Lancashire/South Cumbria) of the UK. Data were collected from a range of community health professionals, resulting in 83 episodes of observation and 72 interviews. Findings highlight how essential good interdisciplinary communication is to the process of anticipatory prescribing and end-of-life care. This study found that when interdisciplinary communication worked well the anticipatory prescribing process could be carried out smoothly, optimising patient care. [ABSTRACT FROM AUTHOR]

Background: Research suggests that there may be bereavement experiences and support needs which are specific to family caregivers providing end of life care (EoLC), although this remains an under-researched area. This paper focuses on themes relating to bereavement which were derived from an analysis of free text survey responses collected in a research priority setting exercise for palliative and EoLC. Methods: The priority setting exercise involved a public survey, designed to generate research priorities. Rather than identify research topics, many people instead described their experiences and raised more general questions relating to palliative and end of life care. To explore these experiences and perspectives a supplementary thematic analysis was conducted on the survey responses. 1403 respondents took part, including patients, current and bereaved carers, health and social care professionals, volunteers and members of the public. Results: Several grief issues were identified, which seem specific to the experiences of family caregivers. Responses demonstrated a relationship between death experiences, feelings of guilt and bereavement outcomes for some family caregivers, as well as caregiver experiences of a "void" created by the withdrawal of professional support after death. Communication and support needs were also identified by participants. Conclusion: This analysis provides further evidence of some of the specific effects that caring for a loved one at the end of life can have on bereavement experiences. Finding ways of improving communication around the time of death and effective follow up approaches post death could help to address some of these issues. [ABSTRACT FROM AUTHOR]

To examine the role of trained health and personal care assistants in supporting district nurses and family carers in providing palliative and end of life care in the community. In the UK, there is a policy directive to improve end of life care and to enable greater numbers of people to die at home. This places considerable demands on community nursing services and family carers. In response to this, the Complex and Palliative Continuing Care Service employing generic health and personal care assistants was developed as part of the Marie Curie Delivering Choice Programme in one city in the UK. This paper draws on findings from an independent evaluation of the scheme. The wider evaluation used a formative evaluation methodology. This paper draws on in-depth interviews with a range of stakeholders ( n = 17), in-depth interviews with bereaved carers ( n = 6) and an analysis of documentation. Stakeholders and bereaved carers perceived that the health and personal care assistants made a vital contribution to community palliative care. Careful recruitment, specific training, case management by district nursing with allocation of specific tasks and close ongoing communication were key features which stakeholders indentified. Family carers welcomed the way assistants developed relationships and became familiar and able to meet the care needs of patients. There were some problems reported which related to capacity, work flow and the need for extensive written care plans. Employing health care assistants under the supervision of district nurses appears to support patients and family at home during end of life care and contribute to good quality nursing care. The needs for community-based palliative and end of life care will increase rapidly over the course of the next 20 years, placing pressure on community nursing services and family carers. [ABSTRACT FROM AUTHOR]

Bereavement needs assessment for specialist palliative care services has been highlighted as important by NICE guidance on palliative care for adults with cancer. Identifying and implementing appropriate bereavement measurement tools has remained a challenge. This paper identifies and reviews bereavement measurement tools to determine their suitability for use within bereavement services and hospice settings. Cochrane, MEDLINE, PsycINFO and CINAHL, electronic databases were searched, yielding 486 papers. From fifty-nine full text papers appraised, 10 measurement tools were analysed in detail. Some tools had been tested on specific populations which limited transferability to specialist palliative care settings; some lacked adequate theoretical links and were not effective in discriminating between normal and complicated grief reactions; and some lacked clear evidence of validity or reliability. Based on these criteria, conclusions are drawn about the suitability of particular tools for UK bereavement services and hospice settings where intervention is delivered by both trained professionals and volunteers. [ABSTRACT FROM AUTHOR]

Hospice trustees are volunteers who are vital to the governance and management of independent, charitable hospices, yet little is known about their roles and concerns. This paper presents some findings from a qualitative study which explored the views and perspectives of hospice trustees in the UK. Twenty hospice trustees took part in semi-structured telephone interviews, which were analysed using an iterative thematic approach. Nine themes emerged from the analysis, and were grouped into two major categories. One theme, 'becoming a trustee', is presented in this paper to illustrate trustees' concerns about the challenges they face in adapting to change. The pace of change currently facing hospices in the UK is an issue of particular concern to trustees, presenting ongoing challenges for this group of volunteers. The study also raises wider questions about how hospices wish to position themselves in the future. [ABSTRACT FROM AUTHOR]

The provision of palliative care in the UK has traditionally focused on people with cancer. People who are elderly, live in rural areas or have diagnoses other than cancer often have difficulty accessing palliative care services. Community hospitals could be important for those groups currently under-served. A literature review was conducted to determine the role played by community hospitals in the provision of palliative care in the UK. Papers were identified using a keyword search of six electronic databases and hand search of five journals. Fifteen papers were identified according to inclusion and exclusion criteria. Findings indicate that many community hospitals in the UK already have the resources to counter inequalities in access to general palliative care. Much of the evidence uses quantitative methods based on small or non-representative samples and retrospective data collection approaches. Insufficient information about the populations involved meant that findings could not be fully interpreted. More prospective research using qualitative methods involving patients, carers and nurses is required to fully understand the complexities of providing palliative care in this setting. [ABSTRACT FROM AUTHOR]

Abstract: This paper reports findings from visits to palliative care settings and research units in the UK, Belgium and the Netherlands. The aim was to learn about clinicians’ (both nurses and doctors) and academic researchers’ understandings and experiences of palliative sedation for managing suffering at the end of life, and their views regarding its clinical, ethical and social implications. The project was linked to two larger studies of technologies used in palliative care. Eleven doctors, 14 nurses and 10 researchers took part in informal interviews. Relevant reports and papers from the academic, clinical and popular press were also collected from the three countries. The study took place in a context in which attention has been drawn towards palliative sedation by the legalisation of euthanasia in the Netherlands and Belgium, and by the re-examination of the legal position on assisted dying in the UK. In this context, palliative sedation has been posited by some as an alternative path of action. We report respondents’ views under four headings: understanding and responding to suffering; the relationship between palliative sedation and euthanasia; palliative sedation and artificial hydration; and risks and uncertainties in the clinician-patient/family relationship. We conclude that the three countries can learn from one another about the difficult issues involved in giving compassionate care to those who are suffering immediately before death. Future research should be directed at enabling dialogue between countries: this has already been shown to open the door to the development of improved palliative care and to enhance respect for the different values and histories in each. [Copyright &y& Elsevier]

A major challenge in research into care at the end of life is the difficulty of obtaining the views and experiences of representative samples of patients. Studies relying on patients’ accounts prior to death are potentially biased, as they only represent that proportion of patients with an identifiable terminal illness, who are relatively well and therefore able to participate, and who are willing to take part. An alternative approach that overcomes many of these problems is the retrospective or ‘after death’ approach. Here, observations are gathered from proxies, usually the patient''s next of kin, following the patient''s death. However, questions have been raised about the validity of proxies’ responses. This paper provides a comprehensive review of studies that have compared patient and proxy views. The evidence suggests that proxies can reliably report on the quality of services, and on observable symptoms. Agreement is poorest for subjective aspects of the patient''s experience, such as pain, anxiety and depression. The findings are discussed in relation to literature drawn from survey methodology, psychology, health and palliative care. In addition to this, factors likely to affect levels of agreement are identified. Amongst these are factors associated with the patient and proxy, the measures used to assess palliative care and the quality of the research evaluating the validity of proxies’ reports. As proxies are a vital source of information, and for some patients the only source, the paper highlights the need for further research to improve the validity of proxies’ reports. [Copyright &y& Elsevier]

Ethical considerations in researching user views Researching user views has become a central plank of UK cancer and palliative care policy, not least because it is recognized that current systems for treatment reflect inadequately the experiences and concerns of cancer patients. This paper examines the process of accessing user views about cancer and palliative care from an ethical perspective, drawing by way of example on a study of outcomes associated with Macmillan nursing. A moral theory framework is used to discuss some of the issues involved in trying to achieve ethically sound practice and some essentially political issues that frame the process of accessing users’ views are highlighted. The paper recommends that models of research be developed for accessing user views that are congruent with the values and philosophies of supportive and palliative care. This requires striking a fine balance between the ethical duties of providing care and support, nurturing independence and autonomy, and achieving research outcomes that are rigorous while also being accessible and meaningful to users. It also requires developing an understanding of the social, political and economic context of research enquiry with users. [ABSTRACT FROM AUTHOR]

Background: Variation in provision of palliative care in kidney services and practitioner concerns to provide equitable access led to the development of this study which focussed on the perspectives of South Asian patients and their care providers. As people with a South Asian background experience a higher risk of Type 2 Diabetes (T2DM) and end stage kidney failure (ESKF) compared to the majority population but wait longer for a transplant, there is a need for end of life care to be accessible for this group of patients. Furthermore because non English speakers and people at end of life are often excluded from research there is a dearth of research evidence with which to inform service improvement. This paper aims to explore issues relating to the process of recruitment of patients for a research project which contribute to our understanding of access to end of life care for ethnic minority patients in the kidney setting. Methods: The study employed an action research methodology with interviews and focus groups to capture and reflect on the process of engaging with South Asian patients about end of life care. Researchers and kidney care clinicians on four NHS sites in the UK recruited South Asian patients with ESKF who were requiring end of life care to take part in individual interviews; and other clinicians who provided care to South Asian kidney patients at end of life to take part in focus groups exploring end of life care issues. In action research planning, action and evaluation are interlinked and data were analysed with emergent themes fed back to care providers through the research cycle. Reflections on the process of patient recruitment generated focus group discussions about access which were analysed thematically and reported here. Results: Sixteen patients were recruited to interview and 45 different care providers took part in 14 focus groups across the sites. The process of recruiting patients to interview and subsequent focus group data highlighted some of the key issues concerning access to end of life care. These were: the identification of patients approaching end of life; and their awareness of end of life care; language barriers and informal carers' roles in mediating communication; and contrasting cultures in end of life kidney care. Conclusions: Reflection on the process of recruitment in this action research study provided insight into the complex scenario of end of life in kidney care. Some of the emerging issues such as the difficulty identifying patients are likely to be common across all patient groups, whilst others concerning language barriers and third party communication are more specific to ethnic minorities. A focus on South Asian ethnicity contributes to better understanding of patient perspectives and generic concepts as well as access to end of life kidney care for this group of patients in the UK. Action research was a useful methodology for achieving this and for informing future research to include informal carers and other ethnic groups. [ABSTRACT FROM AUTHOR]

This paper addresses how interactions between UK palliative care nursing staff and the bodies of the deceased they care for function as a mechanism to help them make sense of death in line with their work as carers. Through an analysis of postmortem care rituals, I will argue that nurses play an integral role in the ‘making of the dead’, and look at how this functions in relation to their role as carers of bodies in line with associated states of personal wellbeing. Further to this, there is an argument to be made for the recognition of the nurse’s place in biomedical models as managers of the transient body; as the constructors of the well, sick, living and dead body. [ABSTRACT FROM AUTHOR]

There is little in the literature describing hospital specialist palliative care units (PCUs) within the NHS. This paper describes how specialist PCUs can be set up within and be entirely funded by the NHS, and outlines some of the challenges and successes of the units. Having PCUs within hospitals has offered patients increased choice over their place of care and death; perhaps not surprisingly leading to a reduced death rate in the acute hospital. However, since the opening of the PCUs there has also been an increased home death rate. The PCUs are well received by patients, families and other staff within the hospital. We believe they offer a model for excellence in cost-effective inpatient specialist palliative care within the NHS. [ABSTRACT FROM AUTHOR]

The introduction of end-of-life care criteria in the UK aims at standardising the processes of care at the end of life, including how medical decisions on death are communicated to the families of dying and (brain) dead patients. In the setting of the intensive care unit, these activities are routinely complicated by the imperative to secure donor organs for transplantation: where recent changes to donation services have seen the accommodation of organ donation procedures into end-of-life care routines. This has ramifications for understanding how medical decisions around death and dying are brokered with the families of potential organ donors. Drawing on an ethnographic study in England, this paper will document how communications around death get turned into a particular matter of concern for the practice of requesting organ donation from minority ethnic families. It shows how attempts to resolve differences of opinion between health professionals and families about a diagnosis of brain stem death or dying are mediated by sets of brokering practices: specifically, those termed technological, authoritative and religious brokering. These practices, we argue, not only facilitate a family’s acceptance of their relative’s death, but also serve to make possible a decision on organ donation. [ABSTRACT FROM PUBLISHER]

Background: There is a global need to expand palliative care services to reach the increasing number requiring end of life care. In developing countries where the incidences of cancer are rising there is an urgent need to develop the palliative care workforce. This paper reports on a UK Department for international development (DFID) initiative funded through the Tropical Health Education Trust (THET) where palliative care staff, both clinical and academic, volunteered to help to develop, support and deliver a degree in palliative care in sub-Saharan Africa. The objective of the study was to explore the personal impact on the health care professionals of being part of this initiative.Methods: An evaluation approach using a confidential electronic survey containing quantitative and qualitative questions was distributed to all 17 volunteers on the programme, three months after completion of the first cohort. Data were analysed using descriptive statistics and content thematic analysis. Ethical review deemed the study to be service evaluation.Results: 82 % (14) responded and several themes emerged from the data including the positive impact on teaching and educational skills; clinical practice and finally personal development. Using a score of 1-10 (1-no impact, 10 maximum impact) 'Lifestyle choices - life work balance' (rating 7.83) had the most impact.Conclusions: This approach to supporting the development of palliative care in Sub-Saharan Africa through skill sharing in supporting the delivery of a degree programme in palliative care was successful in terms of delivery of the degree programme, material development and mentorship of local staff. Additionally, this study shows it provided a range of positive impacts on the volunteer health care professionals from the UK. Professional impacts including increased management skills, and being better prepared to undertake a senior role. However it is the personal impact including lifestyle choices which the volunteers reported as the highest impact. Interestingly, several of the faculty have joined other volunteer programmes to continue to support the international development of palliative care. [ABSTRACT FROM AUTHOR]

This is the second in an occasional series of paired commentaries in Age and Ageing, the Journal of the British Geriatrics Society and the Journal of the American Geriatrics Society (JAGS). The aim is to address issues of current significance and to foster dialogue and increased understanding between academics and clinicians working in comparative international settings. Both commentaries address the urgent need to improve palliative care for older people, with a critique of some stereotypes surrounding palliative care and the 'good death'. The companion commentary, published in JAGS, was written by Alexander Smith and Vyjeyanthi Periyakoil, and is grounded in their experience as academic clinicians (Smith AK, Periyakoil V. Should we bury 'The Good Death'? Journal of the American Geriatrics Society 2018; in press). In the present paper, we offer a perspective on the outcome and wider consequences of misalignment between current UK policy and aspirations for end of life care in relation to epidemiological trends and patient experience of death and dying. [ABSTRACT FROM AUTHOR]

This paper describes how within a study on the experiences of district nurses since the introduction of general practitioner purchasing, participants were encouraged to describe and define the district nursing service. The identification of terminal care by district nurses and others as a significant and defining example of district nursing work is explored and the possible reasons for its emphasis over other aspects of patient care. The extent to which terminal care was used within contract and purchasing discussions to aid general practitioner understanding of district nursing work and achieve extra funding is described. The paper concludes by questioning the extent to which terminal care is a helpful and accurate representation of what district nursing work entails, and the implications there may be in emphasizing one aspect of care within a purchasing environment. [ABSTRACT FROM AUTHOR]

Background: Speech and language therapists can improve the quality of life of people receiving palliative care through the management of communication and swallowing difficulties (dysphagia). However, their role in this domain is poorly defined and little is understood about the current international professional practice in this field. Aims: To examine how speech and language therapists perceive their role in the delivery of palliative care to clients, to discover current international speech and language therapist practices and to explore the similarities and differences in speech and language therapists’ practice in palliative care internationally. This will inform professional clinical guidelines and practice in this area.Design:Anonymous, non-experimental, cross-sectional survey design.Participants:Speech and language therapists working with adult and paediatric palliative care populations in Republic of Ireland, United Kingdom, United States, Canada, Australia and New Zealand where the speech and language therapist profession is well established. Method: Purposive and snowball sampling were used to recruit participants internationally using gatekeepers. An online survey was disseminated using Survey Monkey (http://www.surveymonkey.com). Results: A total of 322 speech and language therapists responded to the survey. Speech and language therapist practices in palliative care were similar across continents. Current speech and language therapist practices along with barriers and facilitators to practice were identified. The need for a speech and language therapist professional position paper on this topic was emphasised by respondents. Conclusion: Internationally, speech and language therapists believe they have a role in palliative care. The speech and language therapist respondents highlighted that this area of practice is under-resourced, under-acknowledged and poorly developed. They highlighted the need for additional research as well as specialist training and education for speech and language therapists and other multidisciplinary team members in the area of palliative care. [ABSTRACT FROM AUTHOR]

Advance care planning (ACP) is a process being championed within health and social care, particularly since the publication of the UK Department of Health's 2008 End of Life Care Strategy. However, its implementation in dementia care is yet to be fully realised and can pose significant ethical and legal dilemmas for the generic and specialist workforce, the patient themselves, and their family or loved ones. Challenges may be attributable to inadequate communication, capacity issues, missed opportunities, and the perception that dementia is not a life-limiting illness. The aim of this paper is to highlight the benefits of ACP for individuals with dementia while appraising the recognised barriers to assist in developing some realistic recommendations for future practice. [ABSTRACT FROM AUTHOR]

Palliative care seeks to improve quality of life for patients with terminal, chronic or life-long, illnesses. In the UK, most palliative care occurs in primary care, for example, through general practices. A recent national UK survey of palliative care within general practices concluded that practices that utilized recognized initiatives to promote palliative care demonstrated better clinical care and higher perceived quality of palliative care. This paper reports on secondary analyses from that survey to investigate the management of information related to palliative care within practices. Relatively high levels of information provision to families and carers were reported, over two-thirds of practices reported having unified records for palliative care patients and over 90% of practices reported having a cancer/palliative care register that was fully or mostly operational. Larger practices, those using the Gold Standards Framework and practices using unified record keeping for palliative care, were independently more likely to give information to families and carers and were more likely to have a mostly or fully operational palliative care register. When testing for the relationship between measures of the structures and processes of information management and the perceived quality of care, as an outcome, within the practices, practices with a fully operational palliative care register and practices that had higher scores on the record-keeping scale were more likely to rate the quality of their palliative care as very good. [ABSTRACT FROM PUBLISHER]

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. [ABSTRACT FROM AUTHOR]

Background: The United Kingdom has led the world in the development of children's palliative care. Over the past two decades, the illness trajectories of children with life-limiting conditions have extended with new treatments and better home-based care. Future planning is a critically under-researched aspect of children's palliative care globally. This paper describes the development, implementation and evaluation of innovative child and parent-held palliative care planning resources. The resources were designed to facilitate parent and child thinking and engagement in future planning, and to determine care preferences and preferred locations of care for children with life-limiting conditions from diagnosis onwards. These resources fill a significant gap in palliative care planning before the end-of-life phase. Methods: Drawing on contemporaneous research on producing evidence-based children's health information, we collaborated with leading children's not-for-profit organisations, parents, children, and professionals. A set of resources (My Choices booklets) were developed for parents and children and evaluated using interviews (parents, children, professionals) and questionnaires (professionals) and an open web-based consultation. Results: Parents and children responded in three ways: Some used the booklets to produce detailed written plans with clear outcomes and ideas about how best to achieve desired outcomes. Others preferred to use the booklet to help them think about potential options. Remaining parents found it difficult to think about the future and felt there was no point because they perceived there to be no suitable local services. Professionals varied in confidence in their ability to engage with families to plan ahead and identified many challenges that prevented them from doing so. Few families shared their plans with professionals. Parents and children have far stronger preferences for home-care than professionals. Conclusion: The My Choices booklets were revised in light of findings, have been endorsed by Together for Short Lives, and are free to download in English and Welsh for use by parents and young people globally. More work needs to be done to support families who are not yet receptive to planning ahead. Professionals would benefit from more training in person-centred approaches to future planning and additional communications skills to increase confidence and ability to engage with families to deliver sensitive palliative care planning. [ABSTRACT FROM AUTHOR]

The paper discusses a questionnaire survey that examined the attitudes, knowledge, practice, and experience of corneal donation of hospice staff with direct clinical contact with patients. Results revealed several barriers to discussing corneal donation, despite positive staff attitudes toward donation, which could reduce donation rates. It is noted that this could be improved through local policies for further education, prompts in documentation and availability of informative leaflets.

This paper reports on undergraduate students’ evaluation of a new hospice-based interprofessional practice placement (IPP) that took place in the voluntary sector from 2008 to 2009. Ward-based interprofessional training has been successfully demonstrated in a range of clinical environments. However, the multidisciplinary setting within a hospice in-patient unit offered a new opportunity for interprofessional learning. The development and delivery of the IPP initiative is described, whereby multidisciplinary groups of 12 students provided hands-on care for a selected group of patients, under the supervision of trained health care professionals. The placement was positively evaluated and students reported an increased understanding of both their own role and that of other professionals in the team. The evaluation also suggests that additional learning opportunities were provided by the in-patient palliative care unit. The results of this evaluation suggest that the in-patient unit of a hospice caring for patients with life-limiting illness provides a suitable environment to demonstrate and learn about interprofessional practice. [ABSTRACT FROM PUBLISHER]

Background: The UK Department of Health's End of Life Care Strategy highlighted the low percentage of patients who achieve their wish to die at home (~20%). Figures in south west London were below the London regional average. This paper reports an attempt to improve the proportion of patients from one hospital in the area achieving their preferred place of death. Methodology: A funded initiative by two local primary care trusts allowed the development of a 7-day-per-week fast-track discharge service provided by the hospital palliative care team. The hospital team acted as coordinators, ensured that the correct medication and equipment would be available at the home, and personally transferred the patients to community services. Results: Data is presented from the first representative period of fast-track discharging (June 2009-July 2010). A total of 110 discharges were facilitated over this time, with the rate increasing as the service developed. The vast majority of discharges occurred within 72 hours, and a significant number (~20%) occurred within 24 hours. Conclusions: The data indicate that the new service is effective. There are logistical problems in providing such a service and these are discussed. Further work is required to determine the feasibility of extending this service model to other acute hospitals and to evaluate its health-economic impact. [ABSTRACT FROM AUTHOR]