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Chronic or refractory breathlessness adversely affects quality of life. Current treatment strategies for managing breathlessness are often inadequate in providing complete relief. Kinesiology taping is generally used in musculoskeletal practice for preventive and rehabilitative purposes. Recently, our attention was drawn to the plausible mechanism(s) and indication for use of kinesiology taping for managing chronic breathlessness. We present a brief review of the scientific rationale and efficacy of kinesiology taping for respiratory function-related outcomes. Through this publication, we hope to catalyse discussions amongst palliative care professionals and researchers on the potential use of kinesiology taping in the management of chronic breathlessness. [ABSTRACT FROM AUTHOR]

Introduction: Dysphagia and communication changes are common in life-limiting conditions and Speech-Language Pathology (SLP) involvement to facilitate effective communication, eating and drinking contributes to the goals of comprehensive palliative care. Aim: To examine the existing literature around the role of SLPs in palliative care to define the best practice role for SLPs in this area, identify current services and interventions provided by SLPs to patients with life-limiting conditions, assess for potential gaps between best practice in the literature and everyday SLP practice and opportunities for improvement. Methods: The methods used were electronic literature searches within MEDLINE, EMBASE and CINAHL, and manual searching. Papers were classified according to type. Meta-analysis was not appropriate due to the nature of the papers, and so a narrative exploration of themes was conducted. Results: Thirty-two papers were included (eight research, twenty-four non-research). Discussion: Specific roles for SLPs in dysphagia, communication, and holistic professional practice were identified. There is insufficient research to determine whether this is reflected in everyday SLP practice. Potential challenges to providing services include the impact of working with people who are dying, limited professional preparation, ongoing education constraints, and legal and ethical considerations. Further research into SLP activities with patients with life-limiting conditions is required to explore the valuable contributions already being made by SLPs to the care of patients with life-limiting illnesses and to identify opportunities to develop and improve evidence-based services in this area. [ABSTRACT FROM PUBLISHER]

Background Palliative care and rehabilitation both aim to support patients to live as actively as possible. Goal setting has been identified in health policy and clinical guidelines as a mechanism to achieve this. While goal setting is well established in traditional rehabilitation, it is unclear how it should be implemented within palliative care where people are faced with diminishing abilities. Aim To identify and synthesize published literature regarding goal setting in palliative care. Method Electronic searches were carried out on MEDLINE, PSYCHINFO, EMBASE, CINAHL, ASSIA, and Google Scholar databases between November 2010 and January 2011. Papers were included if they focused on patient-centred goal setting in palliative care. No restrictions were placed on study design or type of paper. Papers were classified according to the type and design and research papers were quality appraised. Papers were read and analysed using framework analysis. Findings Sixteen papers met the inclusion criteria. Three themes were identified: 1. Definitions, process, and functions of goal setting; 2. The challenges of delivering goal setting; 3. Theories underpinning goal setting. Conclusions Goal setting is recognized as an important component of patient-centred palliative care, but there is no agreement regarding 'best practice' and clinicians face particular challenges when trying to set goals with patients in this context. Little attention has been paid to developing a robust, theory-based approach to goal setting in this setting. Hope theory and theories of how people adapt to life-threatening illness could inform the process of goal setting in palliative care. [ABSTRACT FROM AUTHOR]

The article includes a comprehensive bibliography focused on significant papers across various priority journals. Topics include public perception of palliative care in Germany, aspects of palliative care in multiple sclerosis, and the lack of a palliative approach in terminal hospital admissions for chronic disease in rural settings. Relevant research papers, reviews, and case reports are indexed, primarily in English, and include full source data and abstracts.

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]

Background: General practitioners (GPs) have a key role in palliative care provision for patients with advanced cancer. Continuity is valued by patients with such needs but is limited within current primary care systems. Exploration of the facilitators of and barriers to continuity in this complex context is required. Aim: To identify facilitators of and barriers to continuity with GPs in primary palliative care among people with advanced cancer and/or their close persons. Design: Mixed-methods systematic review with content and thematic analyses. Data sources: Keyword searches were carried out in five databases (Ovid MEDLINE(R), Ovid EMBASE(R), CINAHL, Web of Science, and Cochrane), policy documents and grey literature search engines in December 2020. Evidence was reviewed using relevant quality appraisal tools; data were extracted and tabulated. Findings were reported in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses statement, and the review was prospectively registered on PROSPERO. Results: Seventeen studies were included. Six studies originated from the UK; six from Europe; three from Canada; and two from Australia. Two studies were mixed-methods, four presented quantitative data, and 11 papers reported on qualitative studies. Four themes were developed: (1) the role of GPs in facilitating continuity; (2) the role of patients and/or close persons in facilitating continuity; (3) changing needs throughout the disease trajectory; and (4) the organisational context in primary care. Conclusions: Facilitators of and barriers to continuity in primary palliative care are outlined. Further research is required to explore how patients and/or their close persons experience continuity in primary palliative care. Specifically, the work required of them to achieve their desired level of continuity, and their capacity for action in this context, needs further attention. [ABSTRACT FROM AUTHOR]

Background: Given the increasing emphasis on community-based provision of palliative care and the view that good dying should occur at home, it is unsurprising that policy in many countries has started focusing on preventing hospital admissions at the end of life. However, little attention has been paid to the role of the emergency department (ED) in this regard, despite the fact that a high proportion of hospital admissions among patients with palliative care needs originate in the ED. This paper presents the next logical step in improving understanding of ED use within a palliative care context; as to determine what constitutes an avoidable ED presentation initially requires recognition of the reasons that such patients are presenting. Methods: A systematic, narrative approach was used to appraise the relevant studies. From August to December 2014, electronic databases, gray literature and guidelines were searched, using MeSH headings and keywords. As it was anticipated that reasons for presentation would be differently described, all papers addressing presentations to the ED among patients with palliative care needs were identified; information regarding reasons for presentation were then examined. Results: Twelve papers ultimately met the inclusion criteria and were accessible. The ‘reason’ for a patient's presentation was largely defined as their ‘presenting complaint’ or ‘underlying diagnosis.’ There was consistency in the studies in this respect; the majority found that people with lung cancer and those experiencing distressing respiratory symptoms were most likely the present to the ED. Subsequently, pain and gastrointestinal symptoms such as nausea and vomiting were uniformly found to be most common. The three prospective studies gathered information about reason for presentation from the patient perspective using structured questionnaires, but no study collected qualitative data from patients and families. Discussion: This systematic narrative review is the first to explore reasons for ED presentation among patients with palliative care needs. However, the data does not facilitate a detailed discussion about the difficulties that this population of patients face, and whether they may be best managed in an acute or community setting. A deep understanding of the perspectives of patients is urgently needed, so as to both understand their reasons for presentation and implement relevant patient-directed changes in service provision. [ABSTRACT FROM PUBLISHER]

This paper reflects on the adaptation of the World Café concept to engage with members of the public in Compassionate Communities Café Conversation, focussing on enabling people to understand the importance of thinking and talking about the end of life. The approach enables people to come together to share their experience and ideas, wisdom, worries, and wishes. The seven design principles of the World Café are central to the process, together with the sharing of resources developed to engage people in discussion as well as practical activity. This paper outlines the preparation, presentation, and pilot evaluation of the Compassionate Communities Café Conversation experience in two towns in the Mid-West of Ireland. The experience and findings suggest that this approach offers a potentially very useful framework for use by others as part of a health promoting approach to palliative care. [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]

Australia is one of the most successful multi-cultural countries in the world, resulting from continuous immigration for the last 70 years or so. Australia is home for people from almost 200 countries with more than one in five speaking a language other than English at home. Some people arrive in Australia seeking protection from conflict in their own country. They may seek protection as a refugee and in the meantime live in the community while awaiting the outcome of their asylum request. Drawing on a story of one asylum seeker, this paper describes some of the key considerations required in caring for an asylum seeker who is facing the end of their life, making recommendations for addressing their often-complex care needs. [ABSTRACT FROM AUTHOR]

Information about traditional end-of-life care customs was gathered from Māori New Zealanders. How health and palliative care services helped or hindered families to use their customs within different health care settings was also examined. The use of the digital story-telling method to create personalised short videos is reported on in this paper. Kaupapa Māori Research and social constructivist methods were employed to conduct face-to-face interviews with 61 Māori families (including someone with a life limiting illness), plant medicine healers, spiritual practitioners and health and palliative care providers. Of these, sixteen family representatives participated in a digital story telling workshop. A Kaupapa Māori thematic analysis confirmed earlier findings that the digital storytelling method was a useful technique to record Māori traditional caregiving customs. Subject material aligned with four dominant themes; (1) 'whānau manaaki', where the mana (value, prestige, authority) of family was given visibility and was celebrated; (2) the 'importance of wairuatanga' provided insight into the place of Māori spirituality, (3) the 'importance of rongoā rākau' highlighted the role of traditional plant medicines; and (4) the 'cultural support provided by health professionals' reflected the care values health and palliative Q3 care professionals should ideally adopt. [ABSTRACT FROM AUTHOR]

Background: People in palliative and end of life care often experience issues relating to feelings of loneliness and feeling unable to connect with and express their emptions. This can lead to poorer outcomes for people, and inhibits person-centred experiences. Aim: To understand the benefits of poetry therapy for people in palliative and end of life care. Methods: A narrative review of literature pertinent to the use of poetry with people in palliative and end of life care produced 13 relevant papers, which are presented within this paper. Results: Within the literature, 4 key themes emerged: (1) The impact of poetry on the wellbeing of people in palliative and end of life care, (2) the impact of poetry on the wellbeing and confidence of health care professionals, (3) the value of poetry for family members preparing for and coping with bereavement, and (4) The value of poetry in facilitating person-centred practices in palliative care. Conclusions: Poetry therapy can enable a person-centred culture by promoting feelings of well being for people in palliative care, and is also beneficial for health care professionals and family members. [ABSTRACT FROM AUTHOR]

Most international definitions of palliative care in the worlds of policy and practice emphasize the 'holistic' dimensions of end-of-life experience and its care. To discover whether the definitions of palliative care are reflected in the field's research priorities. A content analysis of two research journals, one British and the other American, is described to provide a simple indicative answer to this question. The abstracts of 609 research papers drawn from these two journals between the years 2021–22 were examined thematically. The categories of physical alone, physical, and psychological, and psychological alone, when combined accounted for 69% of all research reports. The broader social aspects of care, outside of communication and advance care planning, were largely unaddressed. The social domain accounted for 29%, but 78% of this figure was about advance care planning and communication. Likewise, the role of spirituality, present in most of the definitions, was under researched and under reported. Even within this context, the results were disappointing. Spiritual care accounted for only 2% of reports. Examination of research publications of two major palliative care research journals showed a significant overemphasis on symptom management and health service delivery assessments. This significant dearth of investigation in the major areas of social and spiritual domains is a call to action for researchers, grant making bodies, researchers, ethics committees, and journal editorial teams. [ABSTRACT FROM AUTHOR]

The long-term care workforce is a significant provider of palliative care. The majority of older people being admitted to long-term care have palliative care needs and many are approaching end of life. The long-term care workforce comprises both registered health care professionals and unlicensed health care workers (UHCW) who provide most direct care. Studies that have examined palliative care competence in long-term care have focused on staff knowledge. However, it is also important to understand staff attitudes, beliefs, and values towards palliative care because these attributes influence behaviours related to care provision. The aim of the qualitative evidence synthesis is to identify and appraise the best available qualitative evidence on the attitudes, beliefs, and values of the long-term care workforce towards palliative care. The review will consider original research that reports qualitative findings of long-term care staff and their attitudes, beliefs, and values regarding palliative care for residents of long-term care facilities. The following databases will be searched for eligible papers: CINAHL, EMBASE, PubMed, PsychINFO, and Scopus. Studies that meet the inclusion criteria by addressing all of the phenomena of interest will be reviewed using the Joanna Briggs Institute (JBI) methodology for systematic reviews of qualitative evidence. Two reviewers will independently assess the studies for methodological quality. The data will be extracted using the standardized JBI SUMARI extraction tool. Specific details about authors and publication date, study design, aims, context, population, cultural and linguistic background, location, main findings, limitations, and conclusions will be extracted and a level of credibility assigned. Categories will be developed from the findings. The findings will be presented diagrammatically and accompanied by a narrative to explain categories and synthesised findings. The review of the literature will synthesis key findings pertaining to the attitudes, beliefs, and values of the workforce providing palliative care to older people in long-term care, beyond what is known about palliative care knowledge in this workforce. [ABSTRACT FROM AUTHOR]

The grief associated with bereavement, while a natural response to loss, is usually a traumatic life event. The bereavement experience for a primary caregiver with the experience of caring for a loved one is complex, especially if this role has required them to relinquish aspects of their own life. The healing trajectory for the bereaved carer is often more complex than for many other bereavements, given the pre-death experience of caregiving. This paper describes the development of a bereavement model which arose from significant clinical experience of working with bereaved carers in a community palliative care environment. The model assists the bereaved carer in gaining insight into their experience and a focus for their psychological and emotional expression, thereby promoting adaptation to the transition and promoting a healthier grief trajectory. [ABSTRACT FROM AUTHOR]

New public health approaches to palliative care highlight the role of communities in care, yet there is little evidence of studies on community-led initiatives in the palliative care context. Therefore, the aim of this study, which took place in Auckland, New Zealand, was to (1) explore Pacific family carers' views on what they need to feel supported as they care for older family members at the end of life and (2) to devise a resource that reflects their views that may be used to raise community awareness about these needs. This was achieved using a Participatory Action Research (PAR) framework in which a focus group was carried out and a work group formed to implement the focus group's recommendations that were informed by a thematic analysis of the focus group data. The analysis resulted in the foregrounding of four themes, with the focus of this paper being on the 4th theme, the centrality of spirituality for a group of Pacific caregivers. This emphasis was chosen due to it being an underexplored topic in the palliative care literature. Co-creating resources based on research with community members allows for the development of tailored approaches of significance to that community, in this instance, a music video. [ABSTRACT FROM AUTHOR]

There is a cost to persons who counsel or work with individuals who are ill, dying, or bereaved. Frequently, they can experience grief reactions that can negatively affect a personal sense of well-being, and relationships with others both within and outside of their workplace. This paper explores the phenomenon of carer grief. The paper also identifies strategies - both individual and organizational - that assist carers in coping with the experience of grief. [ABSTRACT FROM AUTHOR]

Paramedics play an essential and distinct role as providers of care to the dying, deceased and bereaved in Aotearoa, New Zealand and around the world. In this paper, we highlight what is known about the features, barriers and facilitators of quality end-of-life care by emergency ambulance personnel. We also identify priorities for future policy and practice, education and research in this area. Paramedics provide urgent and after-hours support to those with known life-limiting illness and their caregivers, but also attend sudden deaths, from unexpected or unknown causes. Paramedic care at the end of life may involve attempted resuscitation; challenging decision-making and communication; symptom relief; recognition of irreversible dying; provision of compassionate, culturally responsive support for co-responders, bystanders and the bereaved. There is an insufficient acknowledgement of the critical and unique role of paramedics, as providers of urgent care to the dying deceased and bereaved. Ambulance personnel around the world want better preparation and support for end-of-life care. Future research should aim to evaluate and improve this vital care, explore the needs and experiences of those who call an ambulance in the context of death, dying or bereavement and address equity and cultural responsiveness. [ABSTRACT FROM AUTHOR]

The article focuses on the periodical from 1998 to 2003. It states that during this period there was no paper on research reportings and consisted of palliative care practitioners' perception about what should be there in palliative care. It mentions that number of articles discussed palliative care in countries like Malaysia and Korea.

The terms 'inequity' and 'vulnerability' have increasingly become popular in publications concerning health research and policy, including those on palliative care. Often, these words are used with ethical connotation but without precise definitions. In addition, despite the seeming affinity between these two terms, it remains vague how they might relate to each other. This paper proposes a way to understand the meaning of, and relationship between, inequity and vulnerability in palliative care. I start by introducing the risk chain model proposed by Alwang and his colleagues that describes how vulnerability occurs. Then I expand the risk chain model from ethical perspectives specifically in the context of palliative care and explore the meaning of inequity and vulnerability in palliative care. The paper concludes with identification of who are the vulnerable in palliative care and when palliative care is inequitable. [ABSTRACT FROM AUTHOR]

Our choice for care at the end of our lives is constrained by many factors, including the options available to us, our capacity to choose and the social structures that constrain our options and therefore our choices. Working with the interaction between personal agency and social constraints is a core public health activity. An intentional public health approach to palliative and end-of-life care can elucidate the direct relationship between our social circumstances and the quality of our end of life and uncover the implications of structural inequity for end-of-life choice. The approach reorients systems and settings to achieve accessible and equitable palliative and end of-life care for all, and identifies contributions that all jurisdictions, settings, organisations, sectors and communities can make to improving end-of-life care outcomes. Frameworks that support this shift in practice and policy are however in their infancy. Implementation frameworks that can structure and guide 'how' to translate public health palliative care concepts into sustainable practice are needed. This paper reports on an evidence-based Australian public health palliative care framework designed to achieve this. [ABSTRACT FROM AUTHOR]

There are numerous online resources available to assist palliative care clinicians. This paper surveys available resources, focusing on the wide range of websites available to help clinicians research clinical questions, share institutional wisdom, exchange educational resources, network with colleagues, and keep up to date with emerging research. [ABSTRACT FROM AUTHOR]

The article presents abstracts of medical research. They include "Where do prevention and palliative care meet? A systematic literature study on the interfaces of two different health care sectors," "The illness trajectory of elderly cancer patients across cultures: SIOG position paper" and "Magnetic resonance-guided focused ultrasound surgery for the non-invasive curative ablation of tumors and palliative treatments: a review."

Introduction: Public health approaches offer the opportunity to move beyond clinical and health services approaches to end-of-life (EoL) care, to focus on whole populations, individuals and communities rather than patients and carers. They also allow concepts such as capacity, resilience, and wellbeing to come to the fore. Methods: This paper, drawing on the experience of a diverse group of academics and practitioners from three countries in Europe, considers the research challenges related to examining new public health approaches to EoL care and how learning from more traditional or classic public health research can influence a future research agenda. Additional opportunities provided by the new public health approach to broaden learning and participation in research are considered. Results: By bringing together strong traditional methods such as analysis of longitudinal population-level data with participatory approaches that draw on communities' experience and aspirations for care, the authors suggest that new and improved opportunities exist to evaluate the impact of participatory approaches. Discussion: In conclusion, the paper urges researchers from classic and new public health to work in partnership to generate and respond to the emerging research agenda around new public health initiatives. There is much to be learned from both. [ABSTRACT FROM AUTHOR]

There is a significant gap in the provision of palliative care for children living with HIV (CLHIV) in Indonesia. While Indonesia has one of the highest rates of HIV infection amongst children in Asia, there is limited availability and access to palliative care services for CLHIV, especially for those living in rural areas. This paper highlights the need to scale up the provision of pediatric palliative care services for CLHIV in the country through the integration of palliative care into existing HIV care. This integration would not only increase the accessibility of palliative care for CLHIV, but also improve the quality of HIV care by addressing and meeting individual needs, enhancing retention in HIV care and improving quality of life amongst CLHIV. An effective integration of palliative care may be achieved by adopting World Health Organization's Public Health Strategy for Palliative Care, with adaptations made to accommodate the unique geographical and cultural contexts of Indonesia. [ABSTRACT FROM AUTHOR]

Palliative care is aimed at reducing the physical, mental, social and spiritual pain of the critically ill patients irrespective of the diagnosis. Dermatologists are rarely involved in palliative works currently, but recent literature demands an active involvement. In this paper, we tried to review literature linking palliative care and dermatology. We also attempted to define the need and scope of palliative dermatology as a subspecialty of palliative care. Policymakers of palliative medicine should seriously consider the role of dermatologists in the team and a dermatologist may avail basic training in palliative care as it may aid them to address certain clinical situations in a better way. [ABSTRACT FROM AUTHOR]

At a time when death-and-dying are increasingly thought of as medical events, even to the point where professionals traditionally oriented towards healing are sometimes thought to be responsible for intentionally ending the lives of patients, it is becoming increasingly clear that palliative care is both unique and critically important. In this paper I show the need for clear articulation of the philosophy of this distinctive practice that properly acts with intent towards neither health in a narrowly medical sense nor patient death. I propose four lenses through which a rigorous philosophy of palliative care may be approached: trust, intent, authenticity, and the foundational question of good dying - literally euthanasia. I contend that proper palliative care seeks to cloak ( palliare) pain within the context of trusting relationships both as a good in itself and as way of de-cloaking the things that form important components of most people's narratives of good dying: opportunities to authentically engage with trusted others with the aim of finding some kind of meaning in life and community, even during the process of dying. Furthermore, palliative care is characterized by a non-paternalistic willingness to point outside of itself in order to help patients authentically engage the important existential questions of human mortality via lenses that extend beyond those offered by scientific medicine. [ABSTRACT FROM AUTHOR]

The newborn intensive care unit (NICU) is often a setting for end-of-life care. While previous publications acknowledge the role that spirituality may play in pediatric end-of-life care, how these beliefs and values can affect the process of decision-making by parents, relations between clinicians and families, and perceptions among team members, may not, as yet, be well understood. This paper uses a complex case to explore the role of spirituality in end-of-life decision-making in the NICU setting. The case presentation involves a 34-week gestation African American infant (called Angela in the paper) with congenitally acquired cytomegalovirus. After several weeks of clinical improvement, Angela's condition deteriorated, necessitating end-of-life decision-making. Angela's parents' religious beliefs and values became central to all subsequent family decision-making pertaining to Angela's care. Understanding these beliefs and values, and the extent to which they could be accommodated given Angela's prognosis, was essential, yet challenging, for Angela's care team. Issues including religious objection to life-limiting treatment, family-team communication, surrogate decision-making, and moral distress of health care team members are discussed. The analysis of this case aims to help clinicians involved in end-of-life care in the NICU setting respond to families' spirituality in ways that promote ethical care, facilitate family decision-making, and reduce the potential for moral distress among clinicians. [ABSTRACT FROM AUTHOR]

Public health approaches to palliative care must appreciate that health professionals are part of communities, and the importance of partnerships should not be ignored - despite the inherent challenges. The true partners in a public health approach towards the end of life are of course, dying people, their families and friends, and members of the communities within which they are living and dying. However, we ignore important partnerships with nurses, doctors, and other healthcare professionals at our peril. This paper situates hospices within the broader community and uses vignette's to highlight approaches to community engagement and the challenges of partnership. [ABSTRACT FROM AUTHOR]

Background: Attempts to develop tools to measure client satisfaction in the palliative care sector have identified a number of challenges, including the lack of common definition of ‘satisfaction’. This paper reports on the utilization of the Victorian Palliative Care Satisfaction Instrument (VPCSI) in three Victoria-wide surveys over three years, of patient and carer satisfaction with palliative care provision. Aim: The VPCSI aimed to both meet the Australian Government performance indicator reporting and facilitate quality improvement for palliative care services. Setting/participants: All palliative services receiving funding from the Victorian Department of Health were invited to participate. Feedback via survey was captured from adult patients, carers, and bereaved carers in both inpatient and community palliative care settings. Results: Overall state-wide response rates averaged 26% over the three-year trial period. Satisfaction state-wide rated very high, ranging from 66% for patients to 74% for bereaved carers. Top five items given priority to improve varied across respondent type but overall included opportunities to talk to other carers; activities to pass the time; minimizing financial burden and training for carers to perform specific care tasks. The top five rated items overall were level of respect shown as an individual; nurse responses; expertise of staff; overall palliative care team performance; and support for physical care. Conclusion: These data demonstrate that the VPCSI is an important tool for the collection of consumer satisfaction data in the palliative care sector across a wide range of service providers. [ABSTRACT FROM PUBLISHER]

Death literacy is defined as a set of knowledge and skills that make it possible to gain access to understand and act upon end-of-life and death care options. People, and communities, with high levels of death literacy have context-specific knowledge about the death system and the ability to put that knowledge into practice. Positioned within a public health framework, death literacy is considered an outcome of people's experiences of and learnings about, death and dying. Death literacy also appears to be a resource that individuals and communities can use for their own benefit strengthening their capacity for future caring. This purpose of this paper is to explore the concept of death literacy using the evidence from a 6-year research project. We do this by examining how it corresponds to, and differs from, existing concepts and practices such as death education, health literacy, and community development. Our aim is to introduce new thinking into public health approaches to palliative care, offer practice development pathways in this arena and propose that death literacy offers a useful conceptual framework for both describing and understanding the outcomes of a public health approach to palliative care. [ABSTRACT FROM AUTHOR]

Background Palliative sedation (PS) involves the administration of sedative medications and analgesics with the purpose of reducing level of consciousness for patients with refractory suffering in the setting of imminent dying and terminal illness. Although the merits of PS, as well as potential concerns, have been raised frequently in the literature in the past two decades, the clinical utilization and acceptance of PS (and of palliative care in general) have been sparse in Mexico. Discussion As a relatively new treatment option for medical care providers in Mexico, palliative care and the appropriate use of PS are being slowly and cautiously introduced into clinical practice. However, acceptance of the ethical, moral, and legal permissibility of PS remains variable, as is the understanding of appropriate use or integration of palliative care into clinical practice in Mexico. Summary Given changes to Mexican law that have called for provision of adequate palliative care for all patients in Mexico, and advance care planning laws that allow patients to refuse medical treatments that are not consistent with their goals of care, this paper seeks to frame commonly articulated positions regarding PS, explores these challenges in Mexico, and suggests putative guidelines for safe and appropriate implementation of PS. At the urging the Ministry of Health in Mexico, we present a cogent, evidence-based, and internationally vetted protocol outlining the indications for PS and suggested clinical practice guidelines for safe and effective implementation of PS in Mexico for appropriate patients. [ABSTRACT FROM AUTHOR]

Medicare does not pay for beneficiaries to undergo advance care planning (ACP). In this paper, I argue why this failure is economically unsound and unethical. I begin with an analysis of the data regarding current Medicare end-of-life expenditures. Research on these data demonstrates a failure of high-intensity spending to improve end-of-life outcomes. These data further show that ACP can effectively control end-of-life care costs since most persons who undergo ACP opt for palliative-based treatment at the end of life, as opposed to high-intensity medical treatment. I then discuss how current regional variations in Medicare spending on end-of-life care and the failure of Medicare to offer an ACP benefit to its beneficiaries is both economically unjust and appears to violate several tenets of medical ethics. Reliance on the Patient Self-Determination Act of 1990 is also refuted as an ethical solution to the raised concerns about Medicare's failure to fund an ACP benefit. I conclude by noting that the ethical force behind why Medicare should fund an ACP benefit is rooted in its conceptual goals as a means to align patient treatment preferences with the medical care they receive, and not simply the ability of ACP to help control end-of-life care costs. [ABSTRACT FROM AUTHOR]

It is commonly assumed that, in the realm of ethical decision making at the end-of-life, 'luck' and 'risk' do not intrude. Nonetheless 'moral luck' (where happenstance makes a moral difference) does intrude and can have an unanticipated impact on the ultimate moral outcomes of end-of-life care. In the interests of upholding the ethical standards of end-of-life care, healthcare providers have increasingly relied on ethical principlism as a rational decision-guiding frame in the sincere belief that such an approach will enable patient self-determination and control over treatment decisions when needing end-of-life care. Due to contextual variables and associated uncertainties in end-of-life care, however, the intended moral outcomes of appeals to commonly accepted ethical principles (in particular the principle of autonomy) are not always realized. What is not always appreciated is that whether 'good' or 'bad' moral outcomes are achieved can be as much a matter of chance as of choice. This essay explores the relevance and possible implications of moral luck in end-of-life decision making and care. A key conclusion of the paper is that the notion of moral luck needs to be taken seriously in end-of-life care contexts since it can have an unanticipated impact on the outcomes of the decisions that are made and thereby on the moral interests of patients facing the end of their lives. [ABSTRACT FROM AUTHOR]

In ordinary usage, the word 'hope' is clear and unambiguous. But in the palliative care context it has been amplified, dramatized, glamorized, and spiritualized to the extent that it is no more than a piece of inflated rhetoric. In this paper, I will offer a simple analysis of a simple word; explain why the inflated sense is unhelpful; show why hope does not have a straightforward 'opposite'; and argue that 'hope' is not a name for a metaphysical, psychological, or spiritual something-or-other. However, bewitched by their inflated understanding of 'hope', some palliative care professionals apparently tell patients and carers what they should hope for - which could hardly be more patronizing - while others use it as a portmanteau term to describe whatever positive health care outcomes take their fancy. My suggestion is that palliative rehabilitation specialists should resist the temptations of inflation and glamorisation, and begin to use the word more precisely, modestly, and transparently. There is no such thing as 'hope' the life force, 'hope' the inner power, 'hope' the universal human phenomenon, or 'hope' the theological virtue. [ABSTRACT FROM AUTHOR]

Over the past two decades in Australia, there has been significant change in the palliative care sector, the profile of the workforce and its educational requirements. This is reflective of worldwide developments, where educational aspects of palliative care have been integral to the development of service models. This paper describes a project undertaken by the Department of Health in Victoria Australia, to redirect its educational funding towards clinical scholarships to enable clinicians to undertake postgraduate academic studies. The aim of this project was to assess the impact of the Clinical Scholarship Program funding for recipients who undertook postgraduate studies in palliative care. As part of quality assurance, an online survey was distributed to Scholarship recipients across 2 cohorts spanning the years 2008-2010. Recipients were surveyed for the impact and outcomes of their participation in the program. Twenty one-year scholarships for each year (2008-2010), were available to medical, nursing, and allied health professionals currently working in Victoria's public palliative care service system, undertaking postgraduate study in approved courses. Analysis of the data indicated that of most significance was the benefit to the individual, in terms of the impact of study on their professional and personal life and the low rates of employment turnover. Participants also indicated their improved capacity to provide high-quality palliative care services. For the Department of Health this small investment has demonstrated great benefit; and for the palliative care sector it achieved a significant impact enabling an increase in educational opportunities to enhance capacity and capability of the workforce. [ABSTRACT FROM AUTHOR]

The philosophy of palliative care recognizes that end-of-life care impacts the whole family. Consequently, palliative care involves support for the family during illness and after the patient's death. Until recently, no clinical guidelines on bereavement support existed in palliative care. Little is known about the extent of bereavement follow-up provided by specialist services. A few surveys show that bereavement programmes may be common, but need to work with best-practice models to ensure optimal allocation of support. An increasing amount of research shows complicated grief as a clinical phenomenon and a distinct diagnostic entity. The fundamental issue is mapping universally valid norms of reactions, including the prevalence of complications, and lately also the pursuit of a diagnostic entity of complicated grief. In the recently released fifth edition of the American Diagnostic and Statistical Manual of Mental Disorders all proposals for diagnostic criteria for complicated grief were rejected. Instead, the committee chose to remove the 'bereavement exclusion' of the DSM-IV, which excluded individuals from a diagnosis of major depressive disorder right after a loss. This paper addresses issues related to complicated grief as a bereavement-related disorder, and current implications and challenges in palliative care bereavement support will be discussed. The academic society seems to support a public health framework based on a systematic and evidence-based approach, which builds on needs and risks, to inform the organization of bereavement services. Until a distinctive and clearly defined concept of complicated grief exists and validated assessment tools are applicable, attention to new effective interventions is of vital importance in the provision of bereavement care. Bereavement counsellors in palliative care need to work to provide a clearer platform for evidence-based treatments for complicated grief within the remit of palliative care, or the lack of focus on complicated grief in palliative care is a complicating factor for the bereaved caregivers. [ABSTRACT FROM AUTHOR]

Background The majority of deaths in the UK occur in acute hospitals, and older people have the highest hospital death rates. Improved palliative care for older people has been identified as an international priority, yet little is known about the profile of older patients with palliative care needs in hospitals. Objective To describe the profile of older hospital inpatients (≥85 years), and to explore the prevalence and nature of palliative care needs among this group. Methods A cross-sectional survey of palliative care need in older people was undertaken in two UK acute hospitals. Hospital case notes were examined for evidence of palliative care need according to Gold Standards Framework (GSF) prognostic indicator criteria. Patients (or consultees) completed assessments of palliative care need. Subjects Data were collected for 654 consenting patients/consultees. This paper describes data from 110 patients aged ≥85 years. Results Forty per cent of the older patients were identified as having palliative care needs according to GSF criteria. Frailty was the most common indicator of palliative care need (16.7%). The most common reason for admission to hospital was general frailty (25.5%). Conclusions While this study is limited by its small sample size, the results suggest that older people with frailty conditions constitute a substantial proportion of hospital inpatients with palliative care needs. However, it is unclear whether a specialist palliative care framework is the most appropriate model for this group. The care provided to older people at the end of life may best be provided by generalists such as geriatricians, as part of a comprehensive generalist-led palliative care framework. [ABSTRACT FROM AUTHOR]

Background Current models of care for people with advanced chronic obstructive pulmonary disease (COPD) have been demonstrated to be inadequate, particularly in areas such as advance care planning, symptom control and psychosocial and spiritual care. Aim This paper aims to explore how a model of patient-centred care can incorporate a palliative approach to form a practical and useful framework for care that meets the needs of people with advanced COPD. Discussion There is increasing recognition of the need to provide active disease management at the same time as supportive care for people with chronic disease. A palliative approach can incorporate these two care imperatives but a number of barriers often make implementation problematic. A patient-centred care approach can help to address these barriers and is increasingly being seen as an appropriate framework for all healthcare service provision. Significant changes are required to health systems and service provision for this model of care to be implemented; specialist palliative care services can take a leading role in change management. Conclusion Patient-centred care provides an appropriate framework for the development of a model of care for advanced COPD. It allows for a need-based approach to service provision, rather than the current prognosis-based system and brings patient and carer needs and concerns to the forefront of care. [ABSTRACT FROM AUTHOR]

A bibliography on the subject of palliative care is presented, which includes research papers "Trends associated with Home Care Supporting Clinics in Japan," "At-home palliative sedation for end-of-life cancer patients" and "Where do Egyptian palliative care patients with cancer die?."

Palliative care, as with other health care services, is faced with the difficulty of competing for limited health care resources. Health care decision makers seek to maximize 'value for money' when selecting services to fund. The challenges for the palliative care community are to (a) demonstrate the cost effectiveness of its interventions in comparison to other health services and (b) provide evidence that the resources currently allocated are being used efficiently. Health economic evaluation can be conducted to support this. In this paper different economic approaches to evaluating health care services are introduced. Providing examples from (home based) palliative care we consider the opportunities to progress this work. We also describe the related challenges of capturing activity, costs, and outcomes. Although the very nature of this area of care presents unique methodological challenges that will need to be overcome, appropriate analyses will allow comparisons across the wider health sector and strengthen the argument for palliative care services. [ABSTRACT FROM AUTHOR]

When a person with a co-morbid mental illness requires palliative care, a balance in expert mental health and palliative care is critical to a dignified ending. The patient with a co-morbid mental illness requiring end-of-life care in Australia is currently under-recognized, and urgent consideration of the specific needs of this often discriminated against and stigmatized population is essential to provide appropriate care. This discussion paper explores the issues that arise when palliative care is necessary for a person living and dying with a mental illness, in the context of the Australian health care system and end-of-life care. A case for collaborative interprofessional clinical partnerships exists between the patient, family carers, and palliative care and specialist mental health clinicians, so that optimal care can be facilitated for the person living with a chronic or severe mental illness at the end of life. [ABSTRACT FROM AUTHOR]

Introduction This paper discusses why advanced cancer patients use Complementary and Alternative Medicine (CAM) and how they communicate about this with their physicians. While several studies have examined the extent of CAM use by advanced cancer patients, the reasons for CAM use have been addressed much less. Approach Using peer-reviewed online journal databases, we conducted a search for current literature dating back to 2000 related to the use of CAM in palliative cancer care. These databases included: Pubmed, Academic Search Complete, SocIndex, Healthsource, CINAHL, Alt Healthwatch, and Academic Search Elite. Keyword combinations that were used are: Complementary medicine OR alternative medicine OR holistic medicine OR unorthodox medicine OR unproven medicine (AND) cancer OR oncology OR advanced cancer OR tumor OR malignant (AND) palliative care OR palliative OR hospice (AND) decision making. Results Seven studies were found addressing the use of CAM by advanced cancer patients. The most common reasons for CAM use in advanced cancer patients are symptom relief, looking for a cure and survival/lengthening life. The studies varied widely in terms of how CAM was operationalized, as well as in terms of type of cancer diagnosis, socio-demographic characteristics, sampling strategy, and study design (mostly surveys). Generally patients would like their health care providers to initiate the discussion about CAM use and ask them about CAM use in a non-judgemental manner, listening carefully to their experiences and needs. Discussion It is important for physicians to be prepared to discuss CAM use with their patients and to have a basic understanding of the most common types of CAM. Patients often do not seem as concerned about evidence as health care providers. It would be to the patients' benefit if integration of CAM modalities in palliative care becomes more readily available. [ABSTRACT FROM AUTHOR]

A bibliography on progress in palliative care is presented which includes the journal "Acta Oncologica," research papers "Music therapy for end-of-life care," by J. Bradt and colleagues, and "Nurse's perceptions and experiences with end-of-life communication and care," by D. Boyd.

A bibliography on different medical subjects is presented which includes research papers and journals such as "Disorders," "Archives of Internal Medicine" and "International Medicine Journal."

The European Association for Palliative Care (EAPC) represents 46 national associations from 27 European countries and more than 50 000 health care workers and volunteers working or interested in palliative care. The area of influence includes 23 developing countries, most of them in Eastern Europe and Central Asia. Even though many countries are improving rapidly in their economy and the development of their health care systems, there still are major gaps between Western and Eastern European countries. EAPC has produced guidance on different areas of palliative care from symptom assessment to organization of care. The congresses and research congresses as well as the website (www.eapcnet.eu) are renowned platforms for dissemination and exchange of information. The research network and a number of task forces are active on a wide range of topics. Members from developing countries can benefit from these activities, and, for example, pan-European comparisons such as the Atlas of Palliative Care in Europe have been used with good effect for advocacy work in individual countries. EAPC actions such as the Budapest Commitments and the Venice Declaration also have been useful for developing countries. However, more specific support is needed for the developing countries. EAPC has set up a newsletter for Eastern European and Central Asian countries that is available in English and Russian, and more recently also a Russian website (www.eapcspeaksrussian.eu). A survey on information needs is currently under way to provide a basis for more tailored provision of information and knowledge. More specifically the ATOME project (Access to Opioid Medications in Europe) funded in the seventh Framework programme of the European Commission works at the improvement of access to opioids for medical and scientific use in 12 East and South European countries. As a first central project goal, a revised version of the World Health Organization policy guidelines on ensuring balance in access to controlled medicines has been released only recently. The European Association for Palliative Care produces high-quality expert advice, with congresses, publications, the website and various other activities. Palliative care professionals from Eastern European and Central Asian countries benefit from these activities. In addition, EAPC has initiated additional activities with a focus on developing countries, ranging from information needs assessment to specific research projects. The range of activities of EAPC is only possible with the continuing input of palliative care professionals from all over Europe. Palliative care professionals from developing countries are invited to contribute and share the successes of EAPC. [ABSTRACT FROM AUTHOR]

Working in palliative care with other cultures in the domain of grief, loss, and bereavement, the challenge for practitioners is to be open to difference and remain conscious of their own cultural beliefs, while being aware of their perceptions and interpretations of another's culture. This paper explores some of the requirements that need to be in place to develop collaboration and sharing of knowledge, wisdom, and experience when working in palliative care on the interface between individual focussed and community focussed cultures and countries. [ABSTRACT FROM AUTHOR]

After the decline of the compartmentalization of Dutch society, where healthcare was being organized along confessional/denominational lines, spirituality became neglected or implicit for decades in the Netherlands healthcare system. During the modernization of healthcare in the 1960s, the development of professional language concerning chaplaincy and psychosocial care in a secularizing society created a blind spot for this fundamental dimension of care. From the moment palliative care in the Netherlands became part of a national programme, healthcare providers, policymakers, and researchers were presented with the challenge of reassessing this complex concept. National policy and personal initiatives on research and education connected in an inspiring process that led to a Dutch, consensus-based national guideline for multidisciplinary spiritual care as part of palliative care, the adjustment of the professional standard of healthcare chaplaincy in the Netherlands, and the initiative for a European taskforce on spiritual care. In the appendices of this paper the first English-language summary of the Dutch guideline on spiritual care and the European Association for Palliative Care (EAPC) definition of spirituality are presented. [ABSTRACT FROM AUTHOR]