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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]

Opioid stewardship is one essential function of pain and palliative care pharmacists and a critical need in the United States. In recent years, this country has been plagued by two public health emergencies: an opioid crisis and the COVID-19 pandemic, which has exacerbated the opioid epidemic through its economic and psychosocial toll. To develop an opioid stewardship program, a systematic approach is needed. This will be detailed in part here by the Opioid Stewardship Taskforce of the Society of Pain and Palliative Care Pharmacists (SPPCP), focusing on the role of the pharmacist. Many pain and palliative care pharmacists have made significant contributions to the development and daily operation of such programs while also completing other competing clinical tasks, including direct patient care. To ensure dedicated time and attention to critical opioid stewardship efforts, SPPCP recommends and endorses opioid stewardship models employing a full time, opioid stewardship pharmacist in both the inpatient and outpatient setting. Early research suggests that opioid stewardship pharmacists are pivotal to improving opioid metrics and pain care outcomes. However, further research and development in this area of practice is needed and encouraged. [ABSTRACT FROM AUTHOR]

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

Worldwide, over 61 million people suffer from symptoms caused by conditions which could be helped by Palliative Care. Physiotherapy is increasingly utilised as part of the multi-disciplinary team in providing Palliative Care, but this is not widely accepted by physiotherapists whose attitudes and beliefs towards it may be framed by the absence of the topic in their undergraduate education. To evaluate the literature relating to the effect of Palliative Care education interventions on the attitudes and beliefs of Physiotherapy undergraduate students. A structured search on Academic Search Ultimate, MEDLINE Complete, CINAHL Complete, APA PsycInfo, Education Source, Communication Source, SPORTDiscus with Full Text, Business Source Ultimate, SocINDEX with Full Text, and Regional Business News was conducted in October 2020. Articles were limited to peer-reviewed journals published in English and involving an educational intervention delivered to pre-qualification Physiotherapy students. Four papers were included which all measured change in attitudes and beliefs. Three papers showed a significant positive change in students' attitudes and beliefs towards PC, and one showing a positive but non-significant change. There was no consensus on the ideal curriculum content, delivery method or time. PC content within the curriculum is still in its formative stages within Physiotherapy education. While there is currently no consensus on the ideal method and format of how it should be delivered, there is some evidence to suggest that it can have a positive impact on Physiotherapy students' attitudes and beliefs towards PC. [ABSTRACT FROM AUTHOR]

For people living with a life-limiting condition it is challenging to contribute to the design of future services due to limited research foregrounding meaningful engagement of 'vulnerable groups' in co-design. This paper shares findings and critical reflections on sensitively engaging people with lived experience of palliative care transitions, and making their lived experiences visible and legitimate in the co-design process. This paper presents an asset-based approach for reframing 'vulnerability', and visual and narrative tools to facilitate participation. Sharing critical reflections on the design tools and methods, the paper discusses future considerations for engaging 'invisible communities' in co-design of public services. [ABSTRACT FROM AUTHOR]

Research in palliative care is regarded as ethically challenging although there is increasing recognition that such research is important. Young adults with life-shortening conditions were not expected to reach adulthood but this population is growing and there is limited research that focuses on their lives or their experiences of engaging in research. The study explored the unintended consequences of pandemic control measures on the lives of young adults living with life-shortening conditions in the United Kingdom. This paper focuses on some of the methodological issues arising from this study, drawing on data that explores participants’ experiences of taking part. This is an interpretivist and inclusive qualitative study co-produced with three experts by experience using constructivist Grounded Theory method conducted during the first wave of the Coronavirus pandemic. In-depth interviews using a topic guide were transcribed verbatim and analysed iteratively until the point of data saturation. Twenty-six young adults aged 22–40 (17 female; 9 male), reporting a wide range of life-limiting and/or life-threatening conditions including rare and undiagnosed conditions and co-morbidities. Through analysis we identify four key themes focusing on participants’ experiences of taking part in the research: helping others and influencing change; reciprocity and support; therapeutic value; and (in)visibility and legacy. This paper offers methodological reflections on research in palliative care drawing on qualitative co-produced research involving young adults with life-shortening conditions. Our findings indicate that although participating in research can feel uncomfortable, this is outweighed by the perceived benefits of contributing to research. [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: 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]

WHO recommends integrating rehabilitation into palliative care when providing services for people with life-threatening conditions. Recently, there has been increasing interest in exploring how rehabilitation and palliative care approaches could be combined. The aim of this study was to map and discuss the goals of intervention programmes that combine rehabilitation and palliative care. A scoping review was performed. The electronic databases MEDLINE, EMBASE, and CINAHL were searched for papers published between January 2014 and September 2022. Papers were considered eligible if the participants in question had a life-threatening disease and if interventions included both rehabilitation and palliative care. All study types were included. Ten papers describing five interventions were included. Qualitative goals were narratively described, and quantitative goals were analysed according to the International Classification of Functioning, Disability and Health, and the Total Pain framework. Findings showed an overall focus on functioning and quality of life. Further analysis indicated an emphasis on physical and psychological dimensions. Social participation, and the social and spiritual dimensions were rarely evaluated. This review indicates that goals relative to social participation, the social and spiritual dimensions, and the patient's own goals may well be overlooked as points of orientation for interventions. There is an increasing interest in combining palliative care and rehabilitation approaches in clinical work. When rehabilitation and palliative care are combined, goals may be overlooked, and the patient's own goals can be used as a point of orientation for interventions. Future practice should pay special attention to subjective goals, social participation, and the social and spiritual dimensions when combining rehabilitation and palliative care. [ABSTRACT FROM AUTHOR]

After often gruelling journeys, some refugees arrive at secure locations with severe injury or illness. Others find themselves shortly thereafter facing a life-limiting health condition. Palliative care has been the focus of recent research, and of academic and aid sector dialogue. In this study, we ask: What are experiences and needs of patients and care providers? What opportunities and obstacles exist to enhance or introduce means of reducing suffering for patients facing serious illness and injury in crisis settings? We present findings of a qualitative sub-study within a larger programme of research exploring moral and practical dimensions of palliative care in humanitarian crisis contexts. This paper presents vignettes about palliative care from refugees and care providers in two refugee camps in Rwanda, and is among the first to provide empirical evidence on first-hand experiences of individuals who have fled protracted conflict and face dying far from home. Along with narratives of their experiences, participants provided a range of recommendations from small (micro) interventions that are low cost, but high impact, through to larger (macro) changes at the systems and societal levels of benefit to policy developers and decision-makers. [ABSTRACT FROM AUTHOR]

This research explores how the graphic novel Vivian served as the medium for an Arts-Based Knowledge Translation (ABKT) project in the field of palliative care. ABKT seeks to accomplish the goal of disseminating research-based knowledge through the use of the arts. It is regarded as useful for raising awareness about social issues, fostering a deep engagement with audiences and giving new perspectives on topics at hand. The paper describes the process the researchers undertook to create the graphic novel and embed within it empirical evidence about gender and palliative care, thereby extending its reach beyond traditional academic audiences. The paper also explains how Vivian, as an example of a pūrākau (Māori story) serves as a means for foregrounding the values and perspectives of Māori, the indigenous people of Aotearoa New Zealand. Viewed through this lens, Vivian operates as a critique of western societal values at odds with the fundamental Māori principles of care and hospitality (manaakitanga), relationships (whanaungatanga) and prestige or status (mana). [ABSTRACT FROM AUTHOR]

As many as 70% of Australian patients report they would prefer to die at home, yet only 14% achieve this goal and this hospitalization adds to overall healthcare expenditure. Providing caregivers with practical means for managing symptoms at home facilitates home deaths for palliative care patients and reduces the financial healthcare burden. The aim of this paper is to understand the experience of caregivers administering subcutaneous medications at home to palliative care patients. An integrative review search of the literature revealed five common themes: positive caregiver experiences and caregiver concerns, symptom management, specialist palliative care support needs, educational requirements, and supporting patients to remain at home. Evidence strongly suggests that with support and education from a palliative care team, caregivers find their experience is empowering and positive. Without support and education, patients are more likely to present to hospital leading to admission and subsequent death not in their place of preference. [ABSTRACT FROM AUTHOR]

We Die As We Live, is an art in health research project that positions palliative care staff, working in a myriad of capacities in hospital and hospice settings, as 'Death Elders' because of their expert knowledge and accumulated experience of death and dying. This paper speculates on the commemorative dimensions of death, dying and bereavement as embodied in socially-engaged artistic processes. The weekly art workshops I organised, during my yearlong artist residency at St Vincent's Hospital, Melbourne, were designed to solicit meaningful reflection about death and its impact on the staff, using craft materials, mediums and processes that engaged the participants' senses, and encouraged open discussion about mortality and impermanence. At the end of the residency, when these collective works on paper and ephemeral sculptures were presented in the waiting areas of St Vincent's Hospital, they illustrated that every death is unique and every experience of death is unique, reinforced that we are all connected by this universal truth, and invited public discussion and reflection about the pervasive influence of death. [ABSTRACT FROM AUTHOR]

This paper considers the number of speeches which treat central topics in the House of Lords second reading of the 'Assisted Dying Bill' (October 22, 2021). It summarizes some of the principal arguments for and against the Bill according to the main categories of discussion. These were compassion; palliative care; autonomy, choice and control; legal and social effects. In summarizing the arguments thematically, it is possible to see the current state of the debate and how concerns are shared on either side, even if approaches to and proposed solutions for those problems are different. The paper concludes that the essential source of disagreement lies outside of the arguments raised, and therefore that any change in the law is not likely to arise from political consensus. [ABSTRACT FROM AUTHOR]

AbstractPurpose: This study evaluates the evolution and focal points of research on death anxiety among cancer patients over the last three decades, utilizing bibliometric analyses.Methods: We analyzed publications related to death anxiety among cancer patients from January 1994 to January 2024 using data from the Web of Science Core Collection. Bibliometric indicators such as the number of publications, leading countries, institutions, and research themes were examined.Results: A total of 2,602 papers from 286 institutions across 97 countries were identified. There has been a significant increase in research interest, particularly between 2014 and 2023, with a peak in 2022. The United States and Harvard University were found to be the most prolific contributors. Major research themes include quality of life, palliative care, mental health, and cancer-specific concerns.Conclusion: The results highlight the rapid development in the field of death anxiety research among cancer patients, with an increase in publications and emerging research themes. However, there is limited international and institutional collaboration. The study underscores the need for enhanced cooperative efforts to advance understanding and research in this area, suggesting directions for future research. [ABSTRACT FROM AUTHOR]

Rituals are central to the everyday life of the nurse, yet the fundamental roles that rituals play in caring for the dead and dying has often been neglected. This paper explores modern palliative and post-mortem care – its practices, practitioners and arenas – against the background of long-held, global concerns regarding the dead and dying. Comparison with the archaeological and ethnographic records demonstrates the ubiquitous and enduring practices surrounding death, and the centrality of ritual specialists to this complex social and biological process. This deep-time perspective highlights the importance of nurses, and their associated nursing rituals, in the transition of patients between life and death, and the difficult journeys that nurse, patient and family undertake in this mediation between worlds. Such a perspective not only empowers nurses in their daily practices, and places nursing rituals firmly at the centre of modern palliative care work, but demonstrates the value of archaeology and ethnography in contextualising the challenges of today. [ABSTRACT FROM AUTHOR]

This article presents a scoping review of 74 papers from the peer reviewed literature dealing with occupational therapy in palliative care. Five themes emerged regarding the parameters of occupational therapy in palliative care. The themes include: the importance of valued occupations even at the end of life, an exploration of how occupations change over the trajectory of a terminal illness, the balance between affirming life and preparing for death, valued occupations might be doing, being, becoming, or belonging occupations and the emphasis of a safe and supportive environment as an essential dimension for effective palliative care. These five themes are combined to form a model to guide occupational therapy in palliative care. The model offers structure and direction for occupational therapists in order to offer an opportunity for clients in palliative care to flourish toward the end of their lives. [ABSTRACT FROM AUTHOR]

Palliative care social workers are trained to identify how trauma manifests over the course of serious and chronic illness. This expertise can guide patients and team members to ensure a trauma-informed experience of care. This paper identifies the growth of outpatient palliative care clinics as an opportunity for palliative care social workers to emphasize this clinical skill set and assume a leadership role in the implementation of trauma-informed practices early in the trajectory of serious illness. [ABSTRACT FROM AUTHOR]

Coexisting serious illness and posttraumatic stress place hospitalized individuals at risk for complex pain, anxiety, and retraumatization. Hospital palliative care social workers increasingly recognize the value of trauma-informed care (TIC) for reducing harm in the inpatient setting. Despite this recognition, there is limited operationalization of TIC principles for inpatient interventions. This paper integrates each TIC principle with inpatient psychosocial interventions to advance trauma-informed competencies among inpatient palliative care social workers and to provide a foundation for future TIC implementation research. [ABSTRACT FROM AUTHOR]

There are growing numbers of young children with complex life-limiting conditions as well as varying degrees of physical, sensory and cognitive limitations currently surviving birth. As a trainee art therapist, I needed to clarify exactly what art therapy actually was and how to implement it with this clientele, which initially looked the least likely of the creative therapies to be practical. This article offers an account of my journey providing art therapy to a ten year-old girl during my final year trainee placement within a children's hospice and what she contributed in terms of my development and understanding. Neurobiological studies of sufferers of trauma (who can display similar restricted sensory, emotional and cognitive processing capacity) suggest that art can function in a direct manner on the brain, enabling expression and communication. Art therapy becomes feasible with these children if their anger and frustration is seen as embodied very much like trauma as generally understood. Initial sessions concentrated on creating routines and structures without expectation of an art product even though these could be mistaken for sensory or messy play. Finally, my client engaged with art materials and was able to employ controlled gestures resulting in making marks on paper. A noticeable positive change over my client's attitude occurred. By not focussing on expectations around the marks produced in terms of art, a therapeutic relationship developed. Neurobiological studies involving these children as a specific group and art therapy are recommended. This article offers an account of providing art therapy to a ten year-old girl who has the cognitive facility of someone much younger, is registered blind, has limited fine-motor skills, and has a life-limiting degenerative neurological condition. That she could engage in any form of making art (an often assumed prerequisite of art therapy) may seem improbable. As a result, children with similar abilities are more likely to be offered sensory or messy play, as these might appear immediately more directly accessible. Nevertheless, art materials do feature in messy/sensory play, and though the end result may, indeed, present as a mess, drawing on neurological theory I reason this could still result in therapeutic value as a mode of expression/communication. Part of the initial difficulty for me involved issues around what art therapy was. Consequently, I struggled with the idea of whether what I was doing with my client was art therapy. Although, at times, I felt I was offering sensory or messy play, I was finally able to accept that I had done so in the service of art therapy. A key factor was to do with the role of the art therapist as 'container' for the client's emotions. The art therapist's role is therefore upheld as essential to defining whether it was art therapy or not. Much of the time, what took place did not necessarily emulate what I thought of as 'normative' art therapy practice. However, these sessions were necessary to build up trust, and eventually, my client constructively engaged with art materials. The results were not pictorial, but they were controlled rather than random and were accompanied by a marked change of behaviour. I concluded that art therapy specifically was possible in this situation, and affirm that this client group should not be denied the opportunity because of potentially preconceived expectations. [ABSTRACT FROM AUTHOR]

In light of the COVID-19 pandemic, a pediatric hospice in Ottawa, Ontario, implemented a Virtual Bereavement Group Program, necessitating a reorganization of care delivery during the global crisis. This paper outlines the program and assesses the feedback of families who participated in the program following the death of a child or grandchild. Participants expressed high levels of satisfaction, indicating its potential as an effective approach for pediatric bereavement care beyond the pandemic. [ABSTRACT FROM AUTHOR]

In palliative care in the UK, occupational and/or physiotherapists consult with patients to assess how they are managing their activities for daily living in light of their life-limiting condition(s), and to identify any activities that might benefit from therapeutic intervention. In this paper we use conversation analysis to describe a patient's practice in these consultations, which we call "procedural detailing," whereby they produce a step-by-step description of how they do some everyday activity, such that it is depicted as adequate, stable, and unproblematic. Based on a collection of 15 cases identified in video recordings of consultations in a large English hospice, we demonstrate how patients use this practice to normalize their routine conduct and thereby reject or rule out an actual or anticipated therapeutic recommendation. Our analysis suggests that such descriptions let patients participate in shared decision-making by revealing their preference for routines that preserve their level of independence and dignity. [ABSTRACT FROM AUTHOR]

End of life care or palliative care has been acknowledged as important over the last 30 years and it is essential that doctors have core training in palliative care during their undergraduate training. There is little knowledge of the nature of teaching of palliative care within the undergraduate curriculum. This review was undertaken to determine the evidence to create an effective and appropriate undergraduate curriculum in palliative care. All relevant databases were electronically searched from 1966 until 2001 and selected contemporary work included. Key authors were contacted and grey literature and conference abstracts were searched. Efforts were made to quality grade any evaluation studies of teaching, learning and assessment. Two hundred and eighty abstract citations were obtained--192 papers were excluded due to lack of relevance to this study. Eighty-eight abstracts were obtained and forty-nine papers included in the review. There were no randomized controlled trials of educational interventions or open effect studies. All studies included were descriptive and were graded as level of evidence C. The main findings include lack of consistency in what undergraduates are taught about palliative care. Teaching tends to be fragmented, ad hoc and lacks co-ordination. There are difficulties in recruiting appropriate teachers. Palliative care is rarely formally assessed. Teaching focused more on the acquisition of knowledge and skills rather than attitudes. It is suggested that guidelines should be established within each medical school to develop an integrated curriculum for palliative care with due reference to the multidisciplinary nature of palliative care. [ABSTRACT FROM AUTHOR]

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

Leisure has suffered a neglect in the palliative care literature, with clinically driven narratives often overlooking the pivotal role leisure plays within this landscape. A problem inherent in much of the existing literature is that although scholars agree about the blending of hedonia and eudaimonia, the lines between them are blurred. Therefore, this paper contributes to the existing literature by fleshing out the middle ground of the hedonia and eudaimonia continuum. Here, the authors' term this point of equilibrium transitional leisure, which projects a liminal state of well-being. Interview data is collected from in/day/outpatients, families, and the bereaved (n = 140) associated with multiple hospices (n = 5). Findings detail the contribution of therapeutic services, therapeutic spaces, and therapeutic places to well-being. Conclusions add a further dimension to the well-being literature, an appreciation of 'dying-well' and the middle ground of transitional leisure. Practical implications for enhancing service delivery are presented. [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]

The relief of patients' suffering – both physical and non-physical – is a primary aim of palliative care, and has been described as an obligation and ethical duty for palliative care providers. This paper suggests that common approaches to relieving patients' non-physical suffering – such as creating opportunities to make meaning, achieve personal growth, and hone one's resiliencies – comprise the larger, more tellable part of the palliative care discourse. A more marginal, less tellable part of the discourse acknowledges that some non- physical suffering cannot necessarily be relieved. Inspired by Foucauldian writings, this paper suggests that palliative care discourse may be disciplining the relief of non-physical suffering, with unintended ramifications for front-line practice. Making more space for both the tellable and untellable stories of patients' non-physical suffering holds potential for an evolved palliative care discourse; one that un-disciplines dying. [ABSTRACT FROM AUTHOR]

Social workers in Perinatal Palliative Care (PPC) play an essential role in caring for birthing people carrying a baby with a life-limiting condition and their families. Perinatal palliative care is consistent with social work values concerning fostering quality of life and promoting social justice and access to care. Social workers play a multidimensional role in providing a holistic approach to caring for the birthing person, baby, and family. Although social workers may be part of an interdisciplinary care team, their role is not defined solely by the goals of the greater team, nor has it been discussed in depth in the perinatal palliative care literature. The purpose of this paper is to describe the knowledge, values, and skills essential to the role of the social worker in a hospital-based perinatal palliative care team. A case study will be used to illustrate the relevant practices, and implications are outlined. [ABSTRACT FROM AUTHOR]

Forty-five years ago, the first author of this paper surveyed the US medical schools to determine their offerings on EOL (End-of-Life) issues. The results showed limited exposure for medical school students to learn about dying and death, thus their "learning" was apparently on-the-job training. The EOL offerings were so limited that the American Association of Medical Colleges (AAMC), following the 1975 publication from the survey, contacted the first author to inquire about death and dying in the curricula of their medical schools. Apparently, it was so insignificant that the AAMC did not have such information. Palliative medicine, geriatric medicine, and hospice were then in the "birthing" process, a mere blur on the horizon. Today, as in 1975, it is likely that most medical students have personally had minimal experience with death and that for many entering students, other than on television, the cadaver is their first sight of a dead person. The objective of this research is a longitudinal study at five-year intervals since 1975 reporting on EOL education in US medical schools. The total number of medical schools has increased from 113 in 1975 to 150 in 2020. The current study surveyed medical schools electronically and via postal services with a response rate of 37%. Findings from the survey over time revealed significant inclusion of death and dying and palliative medicine as well as geriatrics and hospice. Gross anatomy has evolved from strictly hands-on to integrating 3D/virtual models, a change not without controversy. A noticeable difference in emphasis is obvious as care now plays a more significant role in medical training than previously, thus making modern medicine not only about cure, but more about care than was previously emphasized. Communication with dying patients and families, analgesics for chronic pain, and advance directives all are covered in over 90% of schools today. The current emphasis on EOL care, not just disease management, is increasing and puts more of a human face on modern medicine. [ABSTRACT FROM AUTHOR]

Although many recognize the importance of addressing the spiritual domain in palliative care, empirically grounded interventions designed to alleviate spiritual needs for patients in palliative care are remarkably scarce. In this paper we argue that the development of such interventions for chaplains is important in order to improve spiritual care in a (post)secular and religiously plural context. We therefore propose an interfaith chaplain-led spiritual care intervention for home-based palliative care that addresses patients' spiritual needs. The intervention is based on elements of spiritual care interventions that have been investigated among other populations. Three important characteristics of the proposed intervention are (1) life review; (2) materiality, ritual and embodiment; and (3) imagination. The aim of this intervention is to improve palliative patients' spiritual wellbeing. It is anticipated that such a structured intervention could assist in improving spiritual care in palliative care. [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]

Social workers and nurses, as members of interprofessional palliative medicine teams, faced unfamiliar challenges and opportunities as they endeavored to provide humanistic care to patients and families during the coronavirus (COVID-19) pandemic. Typical methods for engaging patients and families in medical decision-making became thwarted by visitation restrictions and patients' dramatic health declines. This paper presents an innovative social work and nursing intervention aimed at enhancing humanistic patient/family care and advanced directive dialogs. Through incorporating a narrative synthesis of the teams' reflective journals from COVID-19, the paper chronicles the intervention implementation, patient/family responses, and team members' personal and professional meaning-making processes. [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]

Life-threatening illness such as cancer may lead to existential distress, fears about dying, and questioning our legacy and impact on those around us. Building on the foundation of meaning-focused interventions in cancer care and the significance of the therapeutic alliance, the paradigm of vicarious resilience can inform oncology social work, serving as a means of growth, resilience, and self-care for clinicians. Vicarious resilience is the strength clinicians may experience through clients' resilience in facing adversity, and the meaning that practitioners can gain from supporting individuals through traumatic situations, namely life-threatening illness. Social workers in the field of oncology are at risk for vicarious traumatization and compassion fatigue, as they walk alongside clients through suffering and loss, while also positioned to experience vicarious resilience and meaning through the resilience displayed by clients. This paper will examine the potential benefits of vicarious resilience in the field, and through enhancing psychoeducation and incorporating it into training and supervision, it can be brought to the fore as a paradigm in cancer care, offering a means to support practitioners. A case study involving a composite client navigating her cancer journey will be shared, illustrating the companionship and vicarious resilience through the oncology social work relationship. [ABSTRACT FROM AUTHOR]

The aim of this study was to explore the feasibility of the family talk intervention (FTI) and its acceptability to dependent children when a parent is cared for in palliative home care. The main goal of FTI is to increase family communication about the illness. The present paper derives from a pilot study and is based on 25 children's reports, involving both questionnaires and interviews, after participation. A majority of the children appreciated the structure and content of FTI. They felt seen, heard, and acknowledged by the interventionists and recommended FTI to other children in similar situations. [ABSTRACT FROM AUTHOR]

Many submissions made by individuals to an Australian Parliamentary inquiry into end-of-life care which supported assisted dying used narratives of bad deaths of family or friends, or included stories by people suffering from chronic terminal illness. The submissions used the emotional tugs (pathos) of these narratives to support their case and to highlight the contemporary weaknesses of end-of-life care. This paper analyses the submissions, showing how pathos-based arguments were used in the public debate. Pathos-based arguments are a significant – and potentially very influential – feature in the debate on assisted dying. This paper also analyses the arguments advanced by proponents of assisted dying to show the weaknesses of Victoria's current arrangements for end-of-life care, including the significant suffering of family member or friends; lack of access to good palliative care; and that patient needs were not met, sometimes for religious or value-based reasons. [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]

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

Addressing spiritual needs of patients in healthcare settings improves patient experiences and clinical outcomes; however, non-chaplain providers typically assess spiritual needs differently (quantitative psychometric) than healthcare chaplains (long form narrative) and thus there is little shared language or cross-disciplinary evaluation frameworks across disciplines. This discrepancy impedes the provision of both team-based and patient-centered care. This paper used scoping review methodology to illustrate the overlap between narrative and psychometric assessment tools, comparing four narrative tools against eight psychometric tools. The SpNQ-120 and Brief RCOPE demonstrated consistent domain coverage across the four chaplain narrative tools. This work provides preliminary resources to aid clinicians and researchers in choosing an appropriate tool. Additionally, for those who do not work closely with chaplains, it provides a sense of what domains chaplains prioritize, from their professional and lived experience, in assessing the spiritual life of the patient. This improves interdisciplinary communication, and therefore, patient care. [ABSTRACT FROM AUTHOR]

Recently, the call for chaplains to become 'research literate' has been recognized by various scholars as well as by practitioners in the field. However, papers that present and discuss the study design and provide guidance on the methodology of chaplaincy research are scarce. The aim of this study is to present the design of a mixed-methods study that investigates the impact of a spiritual care intervention on patients' spiritual wellbeing in palliative, home-based care. It reports on the steps needed to conduct such a study in chaplaincy care, and describes and discusses the study's research design, intervention, participants, sampling strategy, patient and public involvement, procedure, ethical considerations, data collection, and analysis. Presenting and discussing such a design is not only useful for researchers before conducting their study, in order to create transparency, but also for chaplains to improve their knowledge on research methodology and research literacy. [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]

Improving the end of life care experience of people dying in acute care has become a priority for our organization since 2016 with the launch of the "Quality Living and Dying Initiative." This initiative has three distinct foci. The first two areas of focus, advance care planning and standardized comfort measures, are well established while the third focus bereavement program remains in its early stages. Bereavement is recognized as an essential component along the continuum of palliative care. Despite this recognition, bereavement care is often lacking in hospital settings. This paper will describe a telephone bereavement initiative spearheaded by the Spiritual Care Team at our organization. [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]

Background: This paper presents the findings from a qualitative research project that explored what ten people with intellectual disabilities who receive care and support in a residential care facility deem valuable for living a good life and what the opportunity to manage resources for care and support themselves means to them. Method: With the use of photovoice, the 10 participants documented their care and support, and by extension, their own lives. We describe how the project was carried out and the facilitating and obstructing factors we encountered. Results: The collected images and related personal stories teach us about the central importance of significant others to the lives of the participants and their vital role as "necessary others" who nurture a multitude of possibilities. Conclusions: The increasing policy focus on independence and self-sufficiency is opposed to the vital role of relationships in the participants' view of a good life. [ABSTRACT FROM AUTHOR]

This paper focuses on the normative notion of ‘good death’, its practical relevance as a frame of reference for ‘death work’ procedures in institutional elder care in Switzerland and the ways in which it may be challenged within migrant ‘dying trajectories’. In contemporary palliative care, the concept of ‘good death’ focuses on the ideal of an autonomous dying person, cared for under a specialised biomedical authority. Transferred to the nursing home context, characterised by long-term basic care for the very old under conditions of scarce resources, the notion of ‘good death’ is broken down into ready-to-use, pragmatic elements of daily routines. At the same time, nursing homes are increasingly confronted with socially and culturally diversified populations. Based on ethnographic findings, we give insight into current practices of institutional ‘death work’ and tensions arising between contradicting notions of a ‘good death’, by referring to decision-making, life-prolonging measures, notions on food/feeding and the administration of sedative painkillers. [ABSTRACT FROM AUTHOR]