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Background: The practice of palliative sedation continues to raise ethical questions among people, which in turn leads to its varied acceptance and practice across regions. As part of the Palliative Sedation European Union (EU) project, the aim of the present study was to determine the perceptions of palliative care experts regarding the practice of palliative sedation in eight European countries (The Netherlands, Belgium, Germany, UK, Italy, Spain, Hungary, and Romania). Methods: A specifically designed survey, including questions on the most frequently used medications for palliative sedation, their availability per countries and settings, and the barriers and facilitators to the appropriate practice of palliative sedation was sent to expert clinicians involved and knowledgeable in palliative care in the indicated countries. A purposive sampling strategy was used to select at least 18 participating clinicians per consortium country. Descriptive statistical analysis was conducted on the survey data. Results: Of the 208 expert clinicians invited to participate, 124 participants completed the survey. Midazolam was perceived to be the most frequently used benzodiazepine in all eight countries. 86% and 89% of expert clinicians in Germany and Italy, respectively, perceived midazolam was used "almost always", while in Hungary and Romania only about 50% or less of the respondents perceived this. Levomepromazine was the neuroleptic most frequently perceived to be used for palliative sedation in the Netherlands, Spain, Germany, and the United Kingdom. Between 38- 86% of all eight countries´ expert clinicians believed that opioid medications were "almost always" used during palliative sedation. The perceived use of IV hydration and artificial nutrition "almost always" was generally low, while the country where both IV hydration and artificial nutrition were considered to be "very often" given by a third of the expert clinicians, was in Hungary, with 36% and 27%, respectively. Conclusions: Our study provides insight about the differences in the perceived practice of medication during palliative sedation between eight European countries. In countries where palliative care services have been established longer perceptions regarding medication use during palliative sedation were more in line with the recommended European guidelines than in Central and Eastern European countries like Romania and Hungary. [ABSTRACT FROM AUTHOR]

Background: Community-based palliative out-of-hours services operate outside normal working hours. However, little is known about the provision and delivery of such care. Aim: The aim of this study was to describe types of provision and delivery of out-of-hours palliative care services provided by UK hospices. Methods: Survey questionnaires were emailed to 150 adult hospices in the UK. Quantitative data were analysed using SPSS and qualitative data subjected to thematic analysis. Findings: Responding hospices (n=57) provided the following types of support: telephone advice 72% (n=41); care at home 70% (n=40); and rapid response 35% (n=20). There were variations between services regarding referral mechanisms, availability and workforce, and integration with statutory services was limited. Conclusion: Variation in the type of provision and delivery of out-of-hours palliative care services alongside limited integration with statutory care have contributed to inequity of access to community-based palliative care, and potentially suboptimal patient and informal caregiver outcomes. [ABSTRACT FROM AUTHOR]

Background Palliative sedation is a commonly accepted medical practice. This study aims to clarify how palliative sedation is regulated in various countries and whether this may impact its practice. Methods An online survey requesting regulations on palliative sedation was conducted in Belgium, Germany, Hungary, Italy, The Netherlands, Spain, Romania and the UK. Purposive sampling strategy was used to identify clinicians from different medical fields and legal experts for each country. Regulations were analyzed using the principles of the European Association for Palliative Care Framework on palliative sedation. Country reports describing how palliative sedation is regulated were elaborated. Results One hundred and thirty-nine out of 223 (62%) participants identified 31 laws and other regulations affecting palliative sedation. In Spain, 12 regional laws recognize palliative sedation as a right of the patient at the end of life when there are refractory symptoms. In Italy, the law of informed consent and advance directives specifically recognizes the doctor can use deep sedation when there are refractory symptoms. There are also general medical laws that, while not explicitly referring to palliative sedation, regulate sedation-related principles: the obligation of doctors to honour advance directives, informed consent, the decision-making process and the obligation to document the whole process. In Germany, the Netherlands and the UK, palliative sedation is also regulated through professional guidelines that are binding as good practice with legal significance. Conclusions Palliative sedation is considered in the general law of medical practice, in laws regarding the patient's autonomy, and through professional guidelines. [ABSTRACT FROM AUTHOR]

Background: Globally COVID-19 has had a profound impact on the provision of healthcare, including palliative care. However, there is little evidence about the impact of COVID-19 on delivery of out-of-hours specialist palliative care services in the United Kingdom. The aim of the study is to investigate the impact of the COVID-19 pandemic on the delivery of out-of-hours community-based palliative care services. Methods: A national online census survey of managers of adult hospices in the United Kingdom was undertaken. Survey were emailed to managers of adult hospices (n = 150) who provided out-of-hours community palliative care services. Fifteen questions related specifically to the impact of COVID-19. Quantitative data were analysed using descriptive statistics and qualitative data were analysed using descriptive content analysis. Results: Eighty-one responses to the survey were returned (54% response rate); 59 were complete of which 47 contained COVID-19 data. Findings indicated that COVID-19 impacted on out-of-hours community-based palliative care. To meet increased patient need, hospices reconfigured services; redeployed staff; and introduced new policies and procedures to minimize virus transmission. Lack of integration between charitably and state funded palliative care providers was reported. The interconnected issues of the use and availability of Personal Protective Equipment (n = 21) and infection control screening (n = 12) resulted in changes in nursing practices due to fear of contagion for patients, carers and staff. Conclusions: Survey findings suggest that due to increased demand for community palliative care services, hospices had to rapidly adapt and reconfigure services. Even though this response to the pandemic led to some service improvements, in the main, out-of-hours service reconfiguration resulted in challenges for hospices, including workforce issues, and availability of resources such as Personal Protective Equipment. These challenges were exacerbated by lack of integration with wider healthcare services. More research is required to fully understand the implications of such changes on the quality of care provided. [ABSTRACT FROM AUTHOR]

Background: Research requires high-quality ethical and governance scrutiny and approval. However, when research is conducted across different countries, this can cause challenges due to the differing ethico-legal framework requirements of ethical boards. There is no specific guidance for research which does not involve non-medicinal products. Aim: To describe and address differences in ethical and research governance procedures applied by research ethics committees for non-pharmaceutical palliative care studies including adult participants in collaborative European studies. Design: An online survey analysed using descriptive statistics. Setting/participants: Eighteen principal investigators in 11 countries conducting one of three European-funded studies. Results: There was variation in practice including whether ethical approval was required. The time to gain full approvals differed with the United Kingdom having governance procedures that took the longest time. Written consent was not required in all countries nor were data safety monitoring committees for trials. There were additional differences in relation to other data management issues. Conclusion: Researchers need to take the differences in research approval procedures into account when planning studies. Future research is needed to establish European-wide recommendations for policy and practice that dovetail ethical procedures and enhance transnational research collaborations. [ABSTRACT FROM AUTHOR]

Background: In many countries, achieving a home death represents a successful outcome from both a patient welfare and commissioning viewpoint. Significant variation exists in the proportion of home deaths achieved internationally, with many countries unable to meet the wishes of a large number of patients. This review builds on previous literature investigating factors influencing home death, synthesising qualitative research to supplement evidence that quantitative research in this field may have been unable to reach. Aim: To identify and understand the barriers and facilitators influencing death at home. Design: Meta-ethnography. Data sources: The review adhered to the PRISMA guidelines. A systematic literature search was conducted using five databases: PubMed, EMBASE, Ovid, CINAHL and PsycINFO. Databases were searched from 2006 to 2016. Empirical, UK-based qualitative studies were included for analysis. Results: A total of 38 articles were included for analysis. Seven overarching barriers were identified: lack of knowledge, skills and support among informal carers and healthcare professionals; informal carer and family burden; recognising death; inadequacy of processes such as advance care planning and discharge; as well as inherent patient difficulties, either due to the condition or social circumstances. Four overarching facilitators were observed: support for patients and healthcare professionals, skilled staff, coordination and effective communication. Conclusion: Future policies and clinical practice should develop measures to empower informal carers as well as emphasise earlier commencement of advance care planning. Best practice discharge should be recommended in addition to addressing remaining inequity to enable non-cancer patients greater access to palliative care services. [ABSTRACT FROM AUTHOR]

Current demographic, policy and management changes are a challenge to hospices to develop their volunteering practices. The study upon which this paper is based aimed to explore good practice in volunteer involvement and identify ways of improving care through developing volunteering. The project consisted of a narrative literature review; a survey of volunteer managers; and organisational case studies selected through purposive diversity sampling criteria. A total of 205 staff, volunteers, patients and relatives were interviewed across 11 sites in England in 2012. This article focuses on one of the findings - the place that volunteers occupy between the hospice and the community beyond its walls. External changes and pressures in society were impacting on volunteer management, but were viewed as requiring a careful balancing act to retain the 'spirit' of the hospice philosophy. Honouring the developmental history of the hospice was vital to many respondents, but viewed less positively by those who wished to modernise. Hospices tend to be somewhat secluded organisations in Britain, and external links and networks were mostly within the end-of-life care arena, with few referring to the wider volunteering and community fields. Volunteers were seen as an informal and symbolic 'link' to the local community, both in terms of their 'normalising' roles in the hospice and as providing a two-way flow of information with the external environment where knowledge of hospice activities remains poor. The diversity of the community is not fully represented among hospice volunteers. A few hospices had deliberately tried to forge stronger interfaces with their localities, but these ventures were often controversial. The evidence suggests that there is substantial scope for hospices to develop the strategic aspects of volunteering through greater community engagement and involvement and by increasing diversity and exploiting volunteers' 'boundary' position more systematically to educate, recruit and raise awareness. [ABSTRACT FROM AUTHOR]

The application of ethically controversial medical procedures may differ from one place to another. Drawing on a keyword and text-mining analysis of 156 interviews with doctors and nurses involved in end-of-life care ('care providers'), differences between countries in care providers' ethical rationales for the use of sedation are reported. In the United Kingdom, an emphasis on titrating doses proportionately against symptoms is more likely, maintaining consciousness where possible. The potential harms of sedation are perceived to be the potential hastening of social as well as biological death. In Belgium and the Netherlands, although there is concern to distinguish the practice from euthanasia, rapid inducement of deep unconsciousness is more acceptable to care providers. This is often perceived to be a proportionate response to unbearable suffering in a context where there is also greater pressure to hasten dying from relatives and others. This means that sedation is more likely to be organised like euthanasia, as the end 'moment' is reached, and family farewells are organised before the patient is made unconscious for ever. Medical and nursing practices are partly responses to factors outside the place of care, such as legislation and public sentiment. Dutch guidelines for sedation largely tally with the practices prevalent in the Netherlands and Belgium, in contrast with those produced by the more international European Association for Palliative Care whose authors describe an ethical framework closer to that reportedly used by UK care providers. [ABSTRACT FROM AUTHOR]

Background: Worldwide, the demand for specialist palliative care is increasing but funding is limited. The role of volunteers is underresearched, although their contribution reduces costs significantly. Understanding what volunteers do is vital to ensure services develop appropriately to meet the challenges faced by providers of palliative care. Objective: The study's objective is to describe current involvement of volunteers with direct patient/family contact in U.K. specialist palliative care. Design: An online survey was sent to 290 U.K. adult hospices and specialist palliative care services involving volunteers covering service characteristics, involvement and numbers of volunteers, settings in which they are involved, extent of involvement in care services, specific activities undertaken in each setting, and use of professional skills. Results: The survey had a 67% response rate. Volunteers were most commonly involved in day care and bereavement services. They entirely ran some complementary therapy, beauty therapy/hairdressing, and pastoral/faith-based care services, and were involved in a wide range of activities, including sitting with dying patients. Conclusions: This comprehensive survey of volunteer activity in U.K. specialist palliative care provides an up-to-date picture of volunteer involvement in direct contact with patients and their families, such as providing emotional care, and the extent of their involvement in day and bereavement services. Further research could focus on exploring their involvement in bereavement care. [ABSTRACT FROM AUTHOR]

Background Continuous sedation is increasingly used as a way to relieve symptoms at the end of life. Current research indicates that some physicians, nurses, and relatives involved in this practice experience emotional and/or moral distress. This study aims to provide insight into what may influence how professional and/or family carers cope with such distress. Methods This study is an international qualitative interview study involving interviews with physicians, nurses, and relatives of deceased patients in the UK, The Netherlands and Belgium (the UNBIASED study) about a case of continuous sedation at the end of life they were recently involved in. All interviews were transcribed verbatim and analysed by staying close to the data using open coding. Next, codes were combined into larger themes and categories of codes resulting in a four point scheme that captured all of the data. Finally, our findings were compared with others and explored in relation to theories in ethics and sociology. Results The participants' responses can be captured as different dimensions of 'closeness', i.e. the degree to which one feels connected or 'close' to a certain decision or event. We distinguished four types of 'closeness', namely emotional, physical, decisional, and causal. Using these four dimensions of 'closeness' it became possible to describe how physicians, nurses, and relatives experience their involvement in cases of continuous sedation until death. More specifically, it shined a light on the everyday moral reasoning employed by care providers and relatives in the context of continuous sedation, and how this affected the emotional impact of being involved in sedation, as well as the perception of their own moral responsibility. Conclusion Findings from this study demonstrate that various factors are reported to influence the degree of closeness to continuous sedation (and thus the extent to which carers feel morally responsible), and that some of these factors help care providers and relatives to distinguish continuous sedation from euthanasia. [ABSTRACT FROM AUTHOR]

Background The background literature suggests that recruiting patients with advanced cancer from hospice day care to participate in a research study may be challenging. Aim This paper describes such challenges and considers whether those faced by researchers in this study reflect those recorded in the literature. Method Six hundred and twenty-six patients with advanced cancer from hospice day care units in the north-west region of England were recruited as part of a multi-centre mixed methods study to determine the prevalence, aetiology, and natural history of depression and demoralization. Results A number of challenges were reported (i) data collection sometimes presented researchers with ethical dilemmas, although the ability to respond appeared to be influenced by disciplinary background and training, (ii) emotional impact of the research may force researchers to face a variety of emotional responses, and (iii) dilemmas relating to the setting and maintenance of role boundaries included determining the level of emotional connection required to establish relationships of trust between researchers and participants, and imbalances in power and status. Discussion Many of the challenges faced by researchers to recruit patients with advanced cancer from hospice day care to participate in this research study were similar to those described in the literature. Conclusion Most researchers reported that the overall experience was positive, although a number of moral and ethical dilemmas required ongoing reflection and continuing support and supervision to resolve. It is hoped that other researchers engaging in similar forms of research in the future can learn from the challenges that have been identified. [ABSTRACT FROM AUTHOR]

The present study sought to explore the meaning-making people engage in with regard to their experience of sensing the presence of the deceased and to focus on the experience of sensing the presence of the deceased through one of the sensory modalities. Interviews were carried out with eight bereaved adults. Transcripts were analysed using interpretative phenomenological analysis. Analysis identified four superordinate themes. ‘There’s only one person that ever did that’: Sense of presence as a unique and personally distinctive experience referred to participants’ descriptions of the nature of the experiences reflecting the character of the deceased person or aspects of their relationship. ‘I do believe in all that, I’ve experienced it beforehand’: Prior beliefs and understanding sense of presence consisted of the process participants used to try and make sense of their experiences. ‘It’s not frightening anymore’: The changing emotional impact of the experience explored the different emotional impacts of the experiences. ‘They will look at you like you’re crazy’: The importance of sense-of-presence experiences being validated by others referred to concerns about being stigmatised by others as a result of the experiences as well as positive self-perceptions. The themes are interpreted in the context of previous literature and novel ideas about meaning-making and positive self-perceptions are highlighted. Limitations and suggestions for future research are discussed. [ABSTRACT FROM PUBLISHER]

The article discusses a review exploring the recent literature on end-of-life care volunteering and reflects upon the issues pertinent to current organisational challenges and opportunities. It states that articles reporting on research or evaluation of adult end-of-life care services that use volunteers were included. It is concluded that the majority of articles were small in scale and diverse in methodology, but the same topics repeatedly emerged from the qualitative and quantitative data.

Researchers have reported that bereaved people often continue to sense the presence of the deceased. A particular collection of such experiences can be identified as instilling a perception that the deceased person is in some manner present in the company of the bereaved person. The aim of the current review was to synthesise the results on this topic to provide a comprehensive over-view for practitioners working with bereaved people who report these experiences. The studies were reviewed in terms of the nature of the experiences described, the provision of explanatory models to understand the significance of these experiences, describing any culturally specific aspects of these experiences, discussion of the personal impact of having the experiences, and for recommendations of how people who have these experiences can be supported. [ABSTRACT FROM AUTHOR]

Background: Increasing numbers of older patients with advanced cancer live alone but there is little research on how well health services meet their needs. The aim of this study was to compare the experiences and future preferences for care between two groups of older people with cancer in their last year of life; those who live alone, and those who live with co-resident carers. Methods: In-depth qualitative interviews were conducted with 32 people aged between 70 and 95 years who were living with cancer. They were recruited from general practices and hospice day care, when the responsible health professional answered no to the question, of whether they would be surprised if the patient died within twelve months. Twenty participants lived alone. Interviews were recorded and transcribed and the data analysed using a Framework approach, focussing on the differences and commonalities between the two groups. Results: Many experiences were common to all participants, but had broader consequences for people who lived alone. Five themes are presented from the data: a perception that it is a disadvantage to live alone as a patient, the importance of relational continuity with health professionals, informal appraisal of care, place of care and future plans. People who lived alone perceived emotional and practical barriers to accessing care, and many shared an anxiety that they would have to move into a care home. Participants were concerned with remaining life, and all who lived alone had made plans for death but not for dying. Uncertainty of timescales and a desire to wait until they knew that death was imminent were some of the reasons given for not planning for future care needs. Conclusions: Older people who live alone with cancer have emotional and practical concerns that are overlooked by their professional carers. Discussion and planning for the future, along with continuity in primary care may hold the key to enhancing end-of-life care for this group of patients. [ABSTRACT FROM AUTHOR]

Background: Older patients often experience sub-standard communication in the palliative phase of illness. Due to the importance of good communication in patient-centred end-of-life care, it is essential to understand the factors which influence older patients' communication with physicians. This study examines older patients' attitudes towards, and experiences of, patient-physician end-of-life (EoL) communication in three European countries. Methods: A secondary analysis of interviews from British, Dutch and Belgian patients over the age of 60 with a progressive terminal illness was conducted. Cross-cutting themes were identified using a thematic approach. Results: Themes from 30 interviews (Male n = 20, Median age 78.5) included: confidence and trust; disclosure and awareness; and participation in decision-making. Confidence and trust were reinforced by physicians' availability, time and genuine attention and hindered by misdiagnoses and poor communication style. Most participants preferred full disclosure, though some remained deliberately ill-informed to avoid distress. Patients expressed a variety of preferences for and experiences of involvement in medical EoL decision-making and a few complained that information was only provided about the physician's preferred treatment. Conclusions: A variety of experiences and attitudes regarding disclosure and participation in decision-making were reported from each country, suggesting that communication preferences are highly individual. It is important that physicians are sensitive to this diversity and avoid stereotyping. In regard to communication style, physicians are advised to provide clear explanations, avoid jargon, and continually check understanding. Both the 'informed' and the 'shared' patient-physician decision-making models assume patients make rational choices based on a clear understanding of treatment options. This idealized situation was often not reflected in patients' experiences. [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]

This study aimed to evaluate health professionals’ views about palliative care provision in prisons in the counties of Cumbria and Lancashire in the North West of England. Seventeen prison healthcare staff and nine specialist palliative care staff participated in semi-structured interviews and 16 prison healthcare staff completed a questionnaire designed to measure knowledge, skills and confidence in relation to palliative care. The findings highlighted tensions between the philosophies of care and custody, and the many challenges in providing palliative care in a custodial setting. This paper presents two illustrative case study examples, and suggests ways in which some of these challenges can be overcome in practice. [ABSTRACT FROM PUBLISHER]

Service user involvement in health and social care is a key policy driver in the UK. In cancer care it is central to developing services which are effective, responsive and accessible to patients. Cancer network partnership groups are set up to enable joint working between service users and health care professionals and to drive service improvements. The aim of this study was to explore the influence of the cancer network partnership groups' service user involvement activities on cancer care. This was a qualitative study involving documentary analysis and in-depth case studies of a sample of partnership groups. Five partnership groups were purposively selected as case studies from Macmillan regions across the UK; documents were collated from a further five groups. Forty people, including core group members and key stakeholders in cancer services, were interviewed. The evidence from this study suggests that cancer network partnership groups are at their most influential at 'grass roots' level - contributing to patient information resources, enhancing access to services, and improving care environments. While such improvements are undoubtedly important to patients, the groups' aim is to influence strategic changes, for example in cancer care commissioning or macro-level policy decision-making. The evolution of open, participatory relationships between service users and professionals, and recognition of the value of experiential knowledge are seen as key factors in influencing cancer care. The provision of dedicated resources to strengthen service user involvement activities is also vital. [ABSTRACT FROM AUTHOR]

This article draws on a four-year evaluation that assessed the delivery of support services by 15 British hospices and social agencies to family carers of terminally ill people. It aims to examine the politics of evaluation research. Three main arguments are posited: first, that evaluation research is distinguishable from ‘quick and dirty’ evaluations, which are insufficiently resourced and not implemented properly; second, what constitutes a contribution to knowledge and particularly what constitutes ‘new’ knowledge is inherently political; third, drawing on dramaturgy theory, the article presents findings from the study that illustrate how service providers draw selectively in various ways on knowledge, to present their work favourably to their audiences. Finally, the article concludes that such knowledge manipulation raises questions about whose voices are heard within organizations, and the politics involved in the writing of grant applications, in the processes of tendering for the funding of local services. [ABSTRACT FROM PUBLISHER]

The changes within children's palliative care services in the UK over the last decade highlight the importance of respite provision. This article reports on an evaluation of a children's hospice in northern England that was undertaken to elicit the views of 24 service users on their experiences of respite care in the hospice: parents, children and young people, siblings, guardians and family carers. Data were collected using in-depth interviews, transcribed and submitted to framework analysis. The findings demonstrate the tensions that parents in need of respite care feel as a result of the power unconsciously exercised by staff. Redistribution of resources and reordering of priorities are recommended to prevent the inadvertent impact upon families. [ABSTRACT FROM AUTHOR]

This paper describes the preliminary work required to understand cultural differences in palliative care in the United Kingdom and three countries in the Asia-Pacific region, in preparation for a cross-country study. The study is intended to address cultural understandings of palliative care, the role of the family in end of life care, what constitutes good care and the ethical issues in each country. Suggestions are then made to shape the scope of the study and to be considered as outcomes to improve care of the dying in these countries. It is anticipated that the method used to achieve consensus on cross-country palliative care issues will be both qualitative and quantitative. Identifying key priorities in the delivery and quality measures of palliative care will involve participants in focus groups, a Delphi survey and in the development of clinical indicators towards creating standards of palliative care common to the Asian Pacific region. [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]

Bereavement support services are recognised as an integral part of hospices and palliative care services. Exploratory surveys on the nature of such services have been conducted in recent years in several countries, including the USA, UK and Australia. The purpose of this paper is to compare the main findings of these surveys and to offer preliminary suggestions on how to improve this component of care both within and across these three countries. Through this comparison, a number of common aspects of service delivery were highlighted. Common difficulties were also found, including low numbers of paid staff, variations in specialist training, insufficient levels of funding, and the lack of the use of validated bereavement assessment tools. Bereavement support is an important aspect of hospice and palliative care service delivery. In all countries, further research and policy development is required to address the common difficulties. [ABSTRACT FROM AUTHOR]

Objectives. As people face cancer and the end of life, the social, cultural and therapeutic role of food takes on an increasing significance. As part of a larger study involving older Chinese people resident in the UK, we investigated their beliefs about the influence of food on cancer and its role in supportive cancer care. Design. A two-phase qualitative research study involved older Chinese people identified via Chinese community groups. In phase one, 46 older Chinese people participated in seven focus group discussions. In phase two, semi-structured interviews were conducted in Cantonese or Mandarin with 46 different older Chinese people to elicit their understandings of the role of food in health and illness generally and specifically for those with cancer. Results. The analyses revealed four main themes: (1) food as 'therapeutic'; (2) food as 'risky'; (3) food as supportive and comforting; and (4) beliefs about the lack of culturally appropriate and acceptable food in hospitals. Expectations about the lack of Chinese food and the poor quality and perceived unsuitability of 'western' food were regarded as major concerns in relation to hospital admission. Discussion. Understanding the perceived cultural and therapeutic significance of food and its functions in social exchange is one important aspect of promoting supportive and end-of-life cancer care for minority communities. These views helped explain the diversity and salience of food use in illness for older Chinese people resident in the UK. [ABSTRACT FROM AUTHOR]

Concerns remain that health and social care services often fail people dying of chronic illnesses other than those with cancer. British government policy aims to improve end-of-life care and to enable people to make choices about place of care near the end of life, with the assumption that home is often the preferred option. However, some elderly people may lack suitable social networks, family carers and other resources to remain at home. Community hospitals offer a potentially accessible resource for local provision of end-of-life care. They have the advantage of being located within easy reach for family members, are staffed by local people and in most of them, general practitioners can maintain continuity of care. This paper examines patients’ and family carers’ experiences of end-of-life care in community hospitals. In-depth organisational case studies were conducted in six community hospitals in the south of England. Interviews were undertaken with elderly patients dying of cancer and other advanced conditions ( n = 18) and their family carers ( n = 11). Qualitative analysis of transcribed interviews were undertaken, using the principles of grounded theory. Patients and family carers valued the flexibility, local nature (which facilitated visiting) and personal care afforded to them. Most participants regarded community hospitals as preferable to larger district general hospitals. Our research reveals that these participants regarded community hospitals as acceptable places for end-of-life care. Finally, we discuss the implications of our findings for improving end-of-life care. [ABSTRACT FROM AUTHOR]

The objective of the present paper is to explore levels of social service provision, the barriers to receiving these services and the experiences of social service provision amongst older people with heart failure. Five hundred and forty-two people aged over 60 years with heart failure were recruited from UK general practices in four areas of the UK, and these subjects completed quality-of-life and service-use questionnaires every 3 months for 24 months, or until death. Forty patients participated in in-depth interviews. Data collection was conducted between September 2003 and March 2006. Only 24% ( n = 127) of the 460 participants who had provided information about social services contact reported having received social services during the past 24 months. Significant associations between the level of social services contact and participant characteristics were identified, with women, participants over 75 years of age, participants living alone, and those with two or more comorbidities being more likely to report receipt of social services. The qualitative data identified key barriers to using social services, including: access problems; not wanting additional help; the negative experiences of friends; and carers substituting for statutory services. The few participants interviewed who had received social services reported mixed experiences, including problems with inappropriate and insufficient services. This study indicates that only a minority of older people with heart failure have contact with social services. Improving provision for this group involves tackling the barriers to access identified above, as well as ensuring that their views influence service planning and delivery. [ABSTRACT FROM AUTHOR]

To date, there has been only limited research into the supportive and palliative care experienced by people with cancer and other life-limiting illnesses. There is an urgent need to improve our understanding of the problems faced by people whose lives are changed by serious illness, and to use our knowledge to build better and more responsive programmes of care. The preferences, choices, stories, and voices of those affected by life-limiting illness are now central to the development of more and better research in supportive and palliative care. CECo is a new collaboration between experts from many disciplines and backgrounds that over the next 5 years will work to enhance the quality and impact of research in cancer care by taking a fresh look at some challenging problems. Its goal is to use research evidence to change clinical practice and service organisation in ways that will improve the care of people affected by cancer and other serious illnesses. CECo involves leading universities and professional organisations as well as hospice and cancer services from across England. Its purpose is to raise the standard of research, generate new resources, and foster innovation. [ABSTRACT FROM AUTHOR]

The objective of this study was to explore the attitudes of older people and primary care professionals towards communication of diagnosis, prognosis and symptoms in heart failure. Forty-four interviews were conducted with people aged > 60 years with heart failure (New York Heart Association III–IV) recruited from general practices in the UK. Ten focus groups were held with primary care professionals involved in heart failure management. Data were analysed thematically with the aid of the NUD*IST computer program. Participants reported problems with communication, including not being given enough information about their condition, or being given complex information that they did not understand. Many understood little about heart failure and the causes of, and ways to manage, their symptoms. Few participants had had discussions about the prognosis with any health professional, and this was confirmed in professional accounts. Difficulties with terminology were frequently reported: a diagnosis of ‘heart failure’ was rarely communicated to patients to avoid causing anxiety. Educational needs were identified by most primary care professionals in relation to heart failure management and specifically in relation to communication. In conclusion, communication was identified as being inadequate within primary care from both the patient and professional perspectives. These findings point to a need for an educational intervention tailored specifically to the need to improve the communication skills of primary care professionals in chronic heart failure. [ABSTRACT FROM AUTHOR]

Aims: To explore the characteristics and views of the family carers of older people with heart failure. Method: 213 family carers of heart failure patients >60 years were recruited from UK general practitioner (GP) practices. Carer strain, quality of life (QOL) and service satisfaction questionnaires were completed every 3 months for 2 years, as well as 16 interviews with patients and carers, and 9 focus groups with health care professionals. Results: 76% of carers were female, 70% were >60 years and 73% were spousal carers. Predictors of carer strain were symptoms of depression, age and patient NYHA. Predictors of lower QOL were: spousal carer; 2+ health conditions and symptoms of depression. Qualitative findings related to the change in circumstances, impact of responsibilities and health conditions of the family carers. Conclusion: Carers were mainly older women, often experiencing multiple health conditions. Addressing the practical and emotional support required presents a challenge for specialist palliative care in responding to calls for increased involvement in heart failure. A shared care model with liaison between specialist heart failure nurses, cardiologists, primary care teams and hospice services is advocated. [ABSTRACT FROM AUTHOR]

Care homes throughout the UK provide long-term care for frail older people. Whilst care homes are a home for life, many of the older people living in this setting also die there. There is increased interest in improving the care that older people receive in care homes towards the end of life. One way to achieve this has been through links with specialist palliative care services. The knowledge held in care homes by staff, residents and their family carers has yet to be fully integrated into this work. Consequently, a postal survey of care home managers in one English county was undertaken to examine the characteristics of end-of-life care for older people in these care homes. We sought to establish the managers’ understanding of end-of-life care; the extent to which dying and death is present in this setting; the attributes of the resident population living in these care homes; and the availability of resources to support the provision of end-of-life care in this setting. The survey identified that managers held diverse understandings regarding the meaning of end-of-life care. The features of the residents’ conditions and the dying that they experience requires a different way to conceptualise end-of-life care. A longer-term perspective is offered here that encompasses the whole period of a person's residence in a care home. [ABSTRACT FROM AUTHOR]

Aim: To evaluate the effects of a palliative care education programme on the self-reported knowledge and confidence of 72 community nurses. Design: A prospective longitudinal postal questionnaire survey was conducted. Findings: Seventy-one (99%) completed a pre-course questionnaire, 52 (72%) a questionnaire at completion of the course, and 37 (51%) a questionnaire 1 year later. Following the programme, more nurses felt that their professional needs were being met well or very well. Confidence in practice showed an increasing trend over time. Desire for education was lower on course completion than at its start. Palliative Care Nursing Quiz scores rose from a pre-course median of 12.5 to 15 at course completion (P = 0.001) which was maintained 1 year later. Conclusion: The education programme was successful in raising standards of knowledge, professional development and confidence. Improvement was maintained 1 year later. [ABSTRACT FROM AUTHOR]

This paper highlights some of the challenges encountered when recruiting older people with heart failure into longitudinal, community-based research. It draws on the experience gained in a study to provide insights into the palliative care needs of older people with heart failure and the timing and need for service interventions. Five hundred and forty-two people with heart failure (New York Heart Association (NYHA) stages II–IV) and 213 of their informal carers were recruited from primary care practices in four areas of the UK. Ethical issues arising around gate-keeping, terminology and participant burden are discussed along with challenges faced during the recruitment process. Strategies to increase general practitioner and patient recruitment are provided. The paper concludes that prospective longitudinal studies are of particular relevance to chronic illness, and the complexity of setting up such research must be acknowledged and appropriately resourced. [ABSTRACT FROM AUTHOR]

Method Postal survey of UK hospices and specialist palliative care services providing adult bereavement support. Analysis Descriptive statistics and content analysis of free text replies. Results Three hundred services were identified, with 248 valid responses (83%). Of these, 198(80%) were in England and 180 (73%) were associated with inpatient units. Most had been in existence for at least 10 years. Paid staff were used by 219 services (88%) and volunteers were involved in 168 services (68%). A small minority did not provide supervision for their bereavement staff. A quarter of services had insufficient staff. The most common activities were individual support, telephone support, written information, memorialization events and group support. Ninety five services (43%) formally assessed the need for individual support. One hundred and fourteen services (51 %) had no formal mechanisms for bereaved people to provide feedback about such support. Formal audit and evaiuation of bereavement services was uncommon. Conclusions The main elements of bereavement support can be identified but their combination varies. Assessment of people for individual support varies and the small size of many services may inhibit the effective delivery of support. Audit and evaluation of bereavement support may need to be developed. [ABSTRACT FROM AUTHOR]

This paper outlines the broad key findings from a research project on UK childhood bereavement service provision, using eight organizational case studies. Despite a shared objective of 'helping bereaved children' services were very diverse. Three organizational types were identified with differing management and administrative structures, each of which had different implications for staff. Although the overall size and employment status (paid or unpaid) of the respective workforces varied, the number of staff who worked directly with children or their families was similar. Direct and indirect services were offered within a matrix of provision that focussed either on children or on families, and involved individual and/or group work activities. Obtaining sufficient funding presented services with immense challenges. Unless they were part of a larger 'host' organization with a continued commitment to childhood bereavement service provision, services were unable to rely on regular and long-term sources of funding. This can have a detrimental impact on the core business, and on the ability of the service to develop their provision. Improving and increasing research, audit and evaluation of childhood bereavement services would contribute to supporting the case for both individual services and for the childhood bereavement sector as a whole. [ABSTRACT FROM AUTHOR]

In the UK there are concerns that, in certain groups of dying patients such as the old, those with non-cancer diagnoses and those in rural areas, the quality of care is unacceptably variable. There has been no systematic survey of the extent to which community hospitals provide general palliative care for such patients. Therefore, by means of a structured questionnaire we asked senior nurses/managers at all 478 community hospitals in the UK for information on staff expertise, facilities and specialist equipment, liaison arrangements with specialist palliative care providers, priorities, practice and policy in end-of-life care. Of the 346 hospitals (72%) that responded, only 28 were in urban areas. 73% of hospitals employed at least one nurse with additional training in palliative care, 72% had access to 24-hour specialist palliative care advice and 51% had separate overnight accommodation for relatives, but only 22% had designated palliative care beds. Most hospitals did not have written policies or guidelines for patient assessment or symptom control. These findings add to evidence that community hospitals represent an important resource to improve access to palliative care for groups that are currently under-served. [ABSTRACT FROM AUTHOR]

Examines the fall accidents in old age in Great Britain. Analysis on the ethnographic management of falls; Manifestations of fall accidents in old age; Orientation of medical personnel on the management of physical risks of older persons.

Examines the personal attitudes, knowledge and behavior of registered nurses in Great Britain regarding cadaveric donotransplantation. Practice found to be favored by majority of nurses surveyed; Distressing nature of procedure cited by nurses; Favorable reactions of nurses working in renal units to donotransplantation.

Since the introduction of the National Health Service Breast Screening Programme (NHSBSP), the number of ductal carcinoma in situ (DCIS) cases has increased considerably. Despite its increased incidence, some NHS leaflets and reports do not mention it, and the general public seems largely unaware of its existence. There are numerous biological studies dealing with this condition, but its psychosocial aspects seem to have been neglected. We have only been able to locate two British studies (Farmer, A. 1996. Unpublished PhD thesis, University of Southampton; Webb, C. and Koch, T. 1997. J. Adv. Nurs. , 25, 154–525) that address some of the psychosocial issues associated with DCIS. This paper starts by defining DCIS and explaining its usual presentation, natural history and epidemiology. The treatment options for DCIS are described, together with the great deal of confusion and lack of agreement that accompanies them. The psychological issues that women with screen-detected DCIS have to deal with are different from those affecting women diagnosed with symptomatic breast cancer, and a summary of these issues is given. Finally, some suggestions for future psychosocial research are provided. Because the UK as a whole was not covered by the NHSBSP until 1990 (Baum, M. 1995. Lancet , 346, 436; Gage and Fouquet, 1997), the main focus will be on papers published from that year onwards, although some key papers published before then will also be included. The papers reviewed here were found in MEDLINE, EMBASE and BIDS (ISI). Copyright © 1999 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

The author reflects on the 2003 and 2005 research on supportive and palliative care in Great Britain. He says that a strategic review of the research led by Professor Mike Richards in 2003 has discovered stern weaknesses due to poor quality studies and ineffective collaboration. He cites that the review resulted to the creation of another research in 2005 through the Cancer Experiences Collaborative (CECo).

The article reflects the views of the author on the palliative care research and mentions about increasing palliative care research collaboration. It states that international collaborative approach leads to a stronger evidence base and better patient outcomes. It offers information on the International Palliative Care Family Carer Research Collaboration (IPCFRC) led by the Centre for Palliative Care.

Background: Family carers manage a wide range of responsibilities in the lives and care of patients receiving palliative care. They fulfil multiple roles and perform activities within different settings. This has immediate consequences on family carers’ every-day lives. According to literature, family carers in palliative care are both part of the formal and informal care network, but also persons in need of support. This article aims to investigate 1) burdens and rewards associated with family caregiving and 2) what family carers find helpful in their contact with professionals from integrated palliative care initiatives (IPC-i) and other services. Methods: Family carers looking after patients with cancer, chronic obstructive pulmonary disease or chronic heart failure were purposefully recruited at 22 IPC-i in Belgium, Germany, Hungary, the Netherlands and the United Kingdom in the course of the project “Patient-centred palliative care pathways in advanced cancer and chronic disease” (InSup-C). Semi-structured interviews (n = 156) and 87 quantitative questionnaires (CRA, POS, CANHELP Lite) were conducted with family carers. Interviews were analysed with transnationally agreed thematic codes (MAXQDA or NVivo). Statistical tests (SPSS) were carried out in accordance with the characteristic value of the items and distributions. Results: On average, quantitative data showed moderate burden, but the qualitative findings indicated that this burden might be underrated. There is some evidence that IPC-i with well-developed professional care networks and communication systems relieved family carers’ burden by direct and indirect interventions; e.g. provision of night shift nurses or psychological support. Needs of family carers were similar in all participating countries. However, in all countries IPC-i mostly offered one-off events for family carers, lacking systematic or institutionalised support structures. Conclusions: Data suggest that, most IPC-i did not pay enough attention to the needs of most family carers, and did not offer proactive care and access to supportive resources to them (e.g. training, respite care, access to resources). We recommend recognizing family carers as part of the ‘unit of care’ and partner in caregiving, to improve their knowledge about, and access to, and the support available. [ABSTRACT FROM AUTHOR]

An obituary to professor Geoffrey Warren Hanks is presented.

Prison populations across the world are increasing. In the United Kingdom, numbers have doubled in the last two decades, and older prisoners now constitute the fastest growing section of the prison population. One key reason for this shifting prisoner demographic is the growing numbers of men convicted of ‘historic’ sexual offences, many of whom are imprisoned for the first time in old age, and housed in prisons not suited to their needs. These demographic changes have profound consequences, including increased demand for health and social care in prison, and rising numbers of anticipated deaths in custody. Using the findings from a recently completed study of palliative care in prison, this paper proposes that older prisoners face a ‘double burden’ when incarcerated. This double burden means that as well as being deprived of their liberty, older people experience additional suffering by not having their health and wellbeing needs met. For some, this double burden includes a ‘de facto life sentence’, whereby because of their advanced age and the likelihood that they will die in prison, they effectively receive a life sentence for a crime that would not normally carry a life sentence. There has been little popular or academic debate concerning the ethical and justice questions that this double burden raises. Drawing on the work of Wacquant and others, the paper proposes that these changes are best understood as unplanned but reasonably foreseeable consequences of neoliberal penal policies. Although the paper focuses on the UK (which by comparison with other European countries has high rates of imprisonment), many of the challenges discussed are emerging in other countries across the world. This paper illustrates starkly how neoliberal policies and discourses have shaped the expansion and composition of the prison population with its consequent implications for health and justice. [ABSTRACT FROM AUTHOR]

The article focuses on the provision of high quality end-of-life care to dying prisoners. It mentions that bomber Abdelbaset Ali al-Megrahi and train robber Ronnie Biggs have both been released from prison on compassionate grounds as they are sick. It is said that despite the negative reaction of the public toward the move, both meet the criteria of the British Ministry of Justice. Data from a 2009 study shows that prison health-care teams are working with local providers of specialist palliative care to ensure end-of-life care to prisoners.

The author reflects on the palliative care, a widely recognized public health issue in Great Britain. She cites services which have attempted to reach the most disadvantaged such as the small group of charity from Ireland. She added that the palliative care becomes the central aspect of public health and the crude indicators, do not incorporate quality markers. She also extends that people learn a lot from being attentive to personal and family narratives of dying.

The article reports that palliative care research has emerged more strongly in recent years and is increasingly associated with university-based schools of nursing in Great Britain, for example, at the universities of Southampton, Manchester and Sheffield to name just a few. In British universities, the national and international quality of research and scholarship is periodically measured during an extensive procedure call the Research Assessment Exercise (RAE). Sadly in RAE terms the quality of nursing research remains bottom for all research assessed at British universities.

Our research focuses on the complexity of needs associated with distress in people with advanced cancer. We have recently completed a large longitudinal survey exploring the interplay between a number of components of distress, including depression, demoralisation, debility and spirituality, amongst a cohort of people living with terminal cancer. Participants were recruited from 25 hospices across the Northwest of England between 2007-2009. A purposive subsample of 27 people was invited to take part in a qualitative interview to explore in greater depth their personal experiences of living with illness and related distress. Holistic-content analysis revealed two emerging themes: 'personal or personalised care' and 'expectations of truth and certainty'. We discuss these themes in the light of Illich's critique of health care as a 'technical response to a personal challenge'. We highlight the need for further work to explore the impact of organisation of care on personalised need and suggest looking to the chronic illness self-management literature for help in developing future palliative care approaches. [ABSTRACT FROM AUTHOR]

The article reflects on hospice and palliative care services in Great Britain. Hospice Information Services of 2006 shows that there are about 750 hospices and palliative care services. Hospice in this country refer to in-patient units and associated services like home care, daycare and bereavement support, wherein most were established as local charities in providing care for people with cancer.

The growth in the provision of counselling services in British primary care offers an opportunity for general practitioners (GPs) to refer patients to counsellors following bereavement. This study explores the factors that influence GPs referral decisions. Qualitative interviews were conducted with 50 GPs from two cities in southern UK. The study found that GPs draw on notions of abnormal bereavement in making referral decisions. Indicators of bereavement problems related to: the nature of the death; level of social support; and reaction to the death. GPs views about the types of patients likely to benefit from counselling were further criteria employed in referral decisions. The study indicated that consideration of these factors may discriminate against certain types of patients being referred. Further education in the range of psychological theories of bereavement may assist GPs in understanding their bereaved patients’ experiences and in developing their skills in recognising abnormal reactions and making appropriate referrals. [Copyright &y& Elsevier]