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This study investigates the views of contemporary Muslim jurists about withdrawing treatment of the terminally ill. Its aim is threefold. Firstly, it analyses jurists' views concerning core themes within the process of withdrawing treatment. Secondly, it provides insight into fatwas about withdrawing treatment. Thirdly, it compares these views with current medical standards in Europe and the Atlantic world on withdrawing treatment. The data consisted of six papers by Muslim jurists presented at the conference of the Islamic Fiqh Council in 2015. We conducted a directed content analysis (DCA) through a predetermined framework and compiled an overview of all previous fatwas referred to in the papers, which are also analysed. The results show that the general consensus is that if health cannot be restored, treatment may be withdrawn at the request of the patient and/or his family or on the initiative of the doctor. The accompanying fatwa emphasizes the importance of life-prolonging treatment if this does not harm the patient. It becomes apparent in the fatwa that the doctor has the monopoly in decision-making, which is inconsistent with current medical standards in Europe. Managing disclosure in view of the importance of maintaining the hope of Muslim patients may challenge the doctor's obligation to share a diagnosis with them. [ABSTRACT FROM AUTHOR]

Aim: The increase in the number of people with chronic obstructive pulmonary disease (COPD) and the disease burden, has prompted concerted efforts to improve healthcare, particularly outpatient services. In line with these attempts the Partnership-Based Nursing Practice Theoretical Framework for People with COPD was developed to guide outpatient nursing care. The principal approach of the framework is a ‘Dialogue’ with the patients, which has four components: ‘Establishing family involvement’, ‘Assisting living with symptoms’ and ‘Facilitating access to healthcare’, with the primary goal being ‘Enhancement of the health experience’. With new knowledge, research on the framework, and extensive experience in using it, a need arose to modify the framework to maximize its clinical utility. Design: Discursive paper. Methods: A narrative review and critical reflection was conducted to revise the nursing practice framework via selected literature search from 2012 to 2022, research on the framework, and the authors' reflections on the clinical experience of using the framework. Results: The nursing practice framework highlights capacities and possibilities that lie in the nurse–patient relationship. The overarching dialogue in the revised framework includes both patients and families. The action-related component ‘Assisting living with the disease’ was added to the framework to underscore the significance of attempting to understand what may lie ahead for patients and families. The other action-related components are as follows: ‘Assisting living with symptoms’ and ‘Facilitating access to healthcare’. The primary goal remains unchanged: enhancing the ‘Health experience’. Conclusion: Using the revised nursing practice framework in outpatient care may help to enhance the lives of people with COPD and their families, particularly at advanced stages of the disease. It may have transferability to other groups of people living with progressive diseases dealing with complicated health problems, and to reduce the usage of costly healthcare resources such as hospital care. Implications for the Profession and/or Patient Care: The partnership-based nursing practice framework assumes an extension of conventional specialized respiratory service and embraces a comprehensive account for that which may influence the patient's health problems. This guidance, which holistically attends to patient-family needs of living with complicated and progressive health predicaments, is fundamental. It contributes to strengthening the disciplinary focus of nursing, interdisciplinary collaboration, person-family-centred quality nursing care and inspires research initiatives. Critical reflections and updates on nursing practice frameworks, such as this revision, are essential to advance nursing and healthcare. [ABSTRACT FROM AUTHOR]

Home is regarded as an important and safe place to be when nearing the end of life. However, for some, the home may be a place where people feel anxious and alone. The aim of this discussion paper is to reflect on the contextual and theoretical meaning of home. We will, based on a broader understanding of home, also suggest that home-deaths can take place both in a home-based care context and a facility-based care context, as the meaning of home belongs to the individual. We will end our discussion by concluding that the actions of care and nurses’ attitudes are of vital importance, so that a feeling of home can be created for patients nearing the end of life, irrespective of their context. [ABSTRACT FROM AUTHOR]

This quality improvement project aimed to transition completion of Edmonton Symptom Assessment System (ESAS) at our supportive care clinic from paper to electronic format. Proportion of patients who completed electronic ESAS (eESAS). Starting July 2018, patients could complete eESAS 24h before check-in (eESAS-before), eESAS after check-in (eESAS-after) or on paper (pESAS). A total of 6631 cancer patients had 25,767 clinic visits between July 13, 2018 and November 5, 2021. The ESAS completion rate was 100%. eESAS uptake gradually increased over time, first reaching ≥75% eESAS completion in 5/2019 (eESAS-after 61.9%; eESAS-before 14.0%; pESAS 24.1%). We observed a sharp uptake in eESAS-before since adoption of telehealth during the pandemic (May 2020) and the ≥75% eESAS target was consistently achieved from November 2020 onwards (eESAS-after 0.6%; eESAS-before 76.7%; pESAS 22.7%). In an anonymous survey, we identified several modifiable barriers to implementing eESAS. Transition to eESAS was a gradual process and was catalyzed by the pandemic. [ABSTRACT FROM AUTHOR]

Fontan-type surgery is the final step in the sequential palliative surgical treatment of infants born with a univentricular heart. The resulting long-term haemodynamic changes promote liver damage, leading to Fontan-associated liver disease (FALD), in virtually all patients with Fontan circulation. Owing to the lack of a uniform definition of FALD and the competitive risk of other complications developed by Fontan patients, the impact of FALD on the prognosis of these patients is currently debatable. However, based on the increasing number of adult Fontan patients and recent research interest, the European Association for The Study of the Liver and the European Reference Network on Rare Liver Diseases thought a position paper timely. The aims of the current paper are: (1) to provide a clear definition and description of FALD, including clinical, analytical, radiological, haemodynamic, and histological features; (2) to facilitate guidance for staging the liver disease; and (3) to provide evidence- and experience-based recommendations for the management of different clinical scenarios. [ABSTRACT FROM AUTHOR]

The timely integration of palliative medicine is an important component in the treatment of various advanced diseases. While a German S‑3-guideline on palliative medicine exists for patients with incurable cancer, a recommendation for non-oncological patients and especially for palliative patients presenting in the emergency department or intensive care unit is missing to date. Based on the present consensus paper, the palliative care aspects of the respective medical disciplines are addressed. The timely integration of palliative care aims to improve quality of life and symptom control in clinical acute and emergency medicine as well as intensive care. [ABSTRACT FROM AUTHOR]

Copyright of Journal of Medical Imaging & Radiation Sciences is the property of Elsevier B.V. and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Background: The Integrated Palliative Care Outcome Scale (IPOS) validly and reliably measures symptoms and concerns of those receiving palliative care. Aim: To determine the equivalence of the paper version with an electronic version of the IPOS (eIPOS). Design: Multicentre randomised crossover trial (NCT03879668) with a within-subject comparison of the two modes (washout period 30 min). Setting/Participants: Convenience sample of specialist inpatient and palliative home care patients aged over 18 years with cancer and non-cancer conditions was recruited. Scores were compared using intraclass correlation coefficients (ICC), Bland-Altman plots and via a mixed-effects analysis of variance. Results: Fifty patients were randomised to complete paper-electronic (n = 24) and electronic-paper (n = 26) IPOS with median age 69 years (range 24–95), 56% male, 16% non-cancer. The ICCs showed very high concordance for the total score (ICC 0.99, 95% CI 0.98–1.00), lowest ICCs being observed for symptoms 'Appetite loss' and 'Drowsiness' (ICC 0.95, 95% CI 0.92–0.97). Nine of seventeen items had ICCs above 0.98, as did all subscales. No statistically significant mode, order, age, and interaction effects were observed for IPOS total score and subscales, except for 'Communication' (Fmode = 5.9, p = 0.019). Fifty-eight percent preferred the electronic version. In the group 75+ years, 53% preferred the paper version. Only three entries in the free-text main problems differed between the versions. Conclusion: The very high equivalence in scores and free text between the IPOS and the eIPOS demonstrates that eIPOS is feasible and reliable in an older palliative population. [ABSTRACT FROM AUTHOR]

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]

Experiencing cancer impinges life in several ways. Research on the biographical implications of cancer has focused on its disruptive nature. Biographical renewal is not given full attention despite existing literature on positive transformations after cancer. This conceptual paper presents an account of biographical renewal in the milieu of cancer survivorship. Further, we discussed some crucial facilitators that promote the biographical renewal. Caregivers may consider biographical renewal as a substantially new goal in the survivorship care plan to improve patients' quality of life. The discussion is designed to foster an understanding of biographical renewal for the psychosocial practice by professionals with cancer patients, survivors, and their caregivers – formal and informal, to provide comprehensive care during cancer survivorship. Implications for palliative care are also discussed. [ABSTRACT FROM AUTHOR]

Background: Basic palliative care teaching should be included in training curricula for health care providers (HCPs) at all levels of the health service to ensure that the goal set by the South African (SA) National Policy Framework and Strategy for Palliative Care, to have an adequate number of appropriately trained HCPs in South Africa, is achieved. Furthermore, palliative learning objectives for nurses and doctors should be standardised. Many SA medical schools have integrated elements of Palliative Medicine (PM) teaching into undergraduate medical training programmes for doctors; however, the degree of integration varies widely, and consensus and standardisation of the content, structure and delivery of such PM training programmes are not yet a reality. Aim: This joint position paper aims to describe the current state of undergraduate medical PM teaching in South Africa and define the PM competencies required for an SA generalist doctor. Setting: Palliative Medicine programme leads and teachers from eight medical schools in South Africa. Methods: A survey exploring the structure, organisation and content of the respective medical undergraduate PM programmes was distributed to PM programme leads and teachers. Results: Responses were received from seven medical schools. Through a process of iterative review, competencies were defined and further grouped according to suitability for the preclinical and clinical components of the curriculum. Conclusion: Through mapping out these competencies in a spiralled medical curriculum, the authors hope to provide guidance to medical curriculum designers to effectively integrate PM teaching and learning into current curricula in line with the goals of the SA National Policy Framework and Strategy on Palliative Care (NPFSPC). [ABSTRACT FROM AUTHOR]

Copyright of Medizinische Klinik: Intensivmedizin & Notfallmedizin is the property of Springer Nature and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Copyright of Anaesthesiologie & Intensivmedizin is the property of DGAI e.V. - Deutsche Gesellschaft fur Anasthesiologie und Intensivmedizin e.V. and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Introduction. Palliative care embraces the plight of patients and caregivers. Cognitive and emotional empathy, empathetic care and the information environment at a time of dying influence caregivers' experiences of information interactions and emotional well-being. Understanding empathetic care, and the need for empathy in caregiver information interaction experiences in both palliative care and information behaviour, is still too limited. Visceral autoethnographic sharing combined with other qualitative research methods may help. Method. This paper intends to push the boundaries of research on the complexities of information interactions experienced by caregivers in empathetic care for the dying. Themes for further research are deducted from the subject literature, recorded experiences of caregivers, and our own experiences and insight gained from dual sharing experiences as information behaviour researchers and caregivers (i.e. collaborative autoethnography). We allow for etic (outsider) and emic (insider) perspectives. Information behaviour, collaborative autoethnography, and the philosophy of palliative care served as research lenses. Analysis. A cursory thematic content analysis was applied to the literature on caregiver experiences, caregiver 'voices' on information interaction, the value of collaborative autoethnography and our own shared experiences. Results. Key research themes include: caregiver sense-making in individual situated contexts; conceptualisation of empathy and empathetic care; cross disciplinary collaborative autoethnographic research. Conclusion. Since conventional research designs alone cannot address the complexities of information interactions, and there has been a failure to meet with the expectations of caregivers at the time of dying, alternative designs such as inter-disciplinary collaborative autoethnography supplemented by qualitative mixed methods research must be considered. [ABSTRACT FROM AUTHOR]

The Heart Failure Association of the European Society of Cardiology has published a previous position paper and various guidelines over the past decade recognizing the value of palliative care for those affected by this burdensome condition. Integrating palliative care into evidence‐based heart failure management remains challenging for many professionals, as it includes the identification of palliative care needs, symptom control, adjustment of drug and device therapy, advance care planning, family and informal caregiver support, and trying to ensure a 'good death'. This new position paper aims to provide day‐to‐day practical clinical guidance on these topics, supporting the coordinated provision of palliation strategies as goals of care fluctuate along the heart failure disease trajectory. The specific components of palliative care for symptom alleviation, spiritual and psychosocial support, and the appropriate modification of guideline‐directed treatment protocols, including drug deprescription and device deactivation, are described for the chronic, crisis and terminal phases of heart failure. [ABSTRACT FROM AUTHOR]

Background: The WHO definition of palliative care includes bereavement support as integral to palliative care, yet a previous survey of bereavement support in palliative care in Europe has shown a range of service responses to loss. A rigorous approach to agreeing and implementing a palliative care bereavement framework was required. Aim: The aim of this study was to develop consensus on best-practice recommendations for bereavement care principles, structures, processes and delivery based on current practice and evidence. Design: In accordance with Guidance on Conducting and Reporting Delphi Studies, a consensus-building five-round Delphi technique was performed. A scoping review of research literature informed drafting of 54 statements by the EAPC Bereavement Task Force. Evaluation of the statements was performed by an expert panel using a 5-point Likert scale. ⩾80% agreement were defined as essential items and 75%–79% agreement were defined as desirable items. Items with a consensus rating <75% were revised during the process. Setting/participants: The Delphi study was carried out by an expert panel among membership organisations of the European Association for Palliative Care. Results: In total, 376 email requests to complete Delphi questionnaire were distributed with a response rate of 23% (n = 87) and a follow-up response-rate of 79% (n = 69). Of the initial 54 statements in six dimensions, 52 statements were endorsed with 26 essential statements and 26 desirable statements. Conclusions: The six dimensions and 52 statements agreed through this Delphi study clarify a coherent direction for development of bereavement services in palliative care in Europe. [ABSTRACT FROM AUTHOR]

Background: The EAPC White Paper addresses the issue of spiritual care education for all palliative care professionals. It is to guide health care professionals involved in teaching or training of palliative care and spiritual care; stakeholders, leaders and decision makers responsible for training and education; as well as national and local curricula development groups. Methods: Early in 2018, preliminary draft paper was written by members of the European Association for Palliative Care (EAPC) spiritual care reference group inviting comment on the four core elements of spiritual care education as outlined by Gamondi et al. (2013) in their paper on palliative care core competencies. The preliminary draft paper was circulated to experts from the EAPC spiritual care reference group for feedback. At the second stage feedback was incorporated into a second draft paper and experts and representatives of national palliative care organizations were invited to provide feedback and suggest revisions. The final version incorporated the subsequent criticism and as a result, the Gamondi framework was explored and critically revised leading to updated suggestions for spiritual care education in palliative care. Results: The EAPC white paper points out the importance of spiritual care as an integral part of palliative care and suggests incorporating it accordingly into educational activities and training models in palliative care. The revised spiritual care education competencies for all palliative care providers are accompanied by the best practice models and research evidence, at the same time being sensitive towards different development stages of the palliative care services across the European region. Conclusions: Better education can help the healthcare practitioner to avoid being distracted by their own fears, prejudices, and restraints and attend to the patient and his/her family. This EAPC white paper encourages and facilitates high quality, multi-disciplinary, academically and financially accessible spiritual care education to all palliative care staff. [ABSTRACT FROM AUTHOR]

This discussion article examines narrative positioning related to pain management for people who use substances at the end of life. We explore how dominant narrative genres associated with biomedicine, such as 'restitution' and narratives common within the context of drug services such as 'recovery' can hinder effective pain management within this population. We argue that these discourses can marginalise the ethical self-identity of patients who use substances at the end of life. It can also trouble health and social care professionals in supporting patients and generating counter-narratives that challenge those often associated with substance use. Stigma is a common experience for this population with stereotyping as 'junkies' and associated with criminality. They are positioned as drug-seeking, and this requires more surveillance at the end of life when opioid therapy is potentially more available and authorised. This can make it challenging to generate 'companion' stories that are positive and maintain moral adequacy. Dominant biomedical narrative genres often prevent the recognition of the fractured stories that people using substances can often present with. This can lead to narrative silencing and to the under treatment of pain. The person's self-identity is invested in narratives of recovery, and opioid use symbolises their addicted past because for practitioners, this population is at clinical risk with the potential for drug seeking behaviours. Whilst not requiring formal ethical review this discussion paper was constructed in accordance with good scientific practice with the work of other researchers respected and cited appropriately. [ABSTRACT FROM AUTHOR]

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

Palliative care is an evolving field with extensive studies demonstrating its benefits to patients, families, and the health care system. Many health systems have developed or are developing palliative care programs. The Canadian Society of Palliative Care Physicians (CSPCP) is often asked to recommend how many palliative care specialists are needed to implement and support an integrated palliative care program. This information would allow health service decision makers and educational institutions to plan resources accordingly to manage the needs of their communities. The CSPCP is well positioned to answer this question, as many of its members are Directors of palliative care programs and have been responsible for creating and overseeing the pioneering work of building these programs over the past few decades. In 2017, the CSPCP commissioned a working group to develop a staffing model for specialist palliative care teams based on the interdependence of three key professional roles, an extensive literature search, key stakeholder interviews, and expert opinions. This article is the Canadian Society of Palliative Care's recommended starting point that will be further evaluated as it is utilized across Canada. For more information and to see sample calculations go to the Canadian Society of Palliative Care Physicians Staffing Model for Palliative Care Programs (https://www.cspcp.ca). [ABSTRACT FROM AUTHOR]

Background: The Pontifical Academy for Life (PAV) is an academic institution of the Holy See (Vatican), which aims to develop and promote Catholic teachings on questions of biomedical ethics. Palliative care (PC) experts from around the world professing different faiths were invited by the PAV to develop strategic recommendations for the global development of PC ("PAL-LIFE group"). Design: Thirteen experts in PC advocacy participated in an online Delphi process. In four iterative rounds, participants were asked to identify the most significant stakeholder groups and then propose for each, strategic recommendations to advance PC. Each round incorporated the feedback from previous rounds until consensus was achieved on the most important recommendations. In a last step, the ad hoc group was asked to rank the stakeholders' groups by order of importance on a 13-point scale and to propose suggestions for implementation. A cluster analysis provided a classification of the stakeholders in different levels of importance for PC development. Results: Thirteen stakeholder groups and 43 recommendations resulted from the first round, and, of those, 13 recommendations were chosen as the most important (1 for each stakeholder group). Five groups had higher scores. The recommendation chosen for these top 5 groups were as follows: (1) Policy makers: Ensure universal access to PC; (2) Academia: Offer mandatory PC courses to undergraduates; (3) Healthcare workers: PC professionals should receive adequate certification; (4) Hospitals and healthcare centers: Every healthcare center should ensure access to PC medicines; and (5) PC associations: National Associations should be effective advocates and work with their governments in the process of implementing international policy framework. A recommendation for each of the remaining eight groups is also presented. Discussion: This white paper represents a position statement of the PAV developed through a consensus process in regard to advocacy strategies for the advancement of PC in the world. [ABSTRACT FROM AUTHOR]

Oncology has come a long way in addressing patients' quality of life, together with developing surgical, radio-oncological and medical anticancer therapies. However, the multiple and varying needs of patients are still not beingmet adequately as part of routine cancer care. Supportive and palliative care interventions should be integrated, dynamic, personalised and based on best evidence. They should start at the time of diagnosis and continue through to end-of-life or survivorship. ESMO is committed to excellence in all aspects of oncological care during the continuum of the cancer experience. Following the 2003 ESMO stand on supportive and palliative care (Cherny N, Catane R, Kosmidis P. ESMO takes a stand on supportive and palliative care. Ann Oncol 2003; 14(9): 1335-1337), this position paper highlights the evolving and growing gap between the needs of cancer patients and the actual provision of care. The concept of patient-centred cancer care is presented along with key requisites and areas for further work. [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]

Background: In recognition of the ongoing discussion on euthanasia and physician-assisted suicide, the Board of Directors of the European Association for Palliative Care commissioned this white paper from the palliative care perspective. Aim: This white paper aims to provide an ethical framework for palliative care professionals on euthanasia and physician-assisted suicide. It also aims to provide an overview on the available evidence as well as a discourse of ethical principles related to these issues. Design: Starting from a 2003 European Association for Palliative Care position paper, 21 statements were drafted and submitted to a five-round Delphi process Participants: A panel with 17 experts commented on the paper in round 1. Board members of national palliative care or hospice associations that are collective members of European Association for Palliative Care were invited to an online survey in rounds 2 and 3. The expert panel and the European Association for Palliative Care board members participated in rounds 4 and 5. This final version was adopted as an official position paper of the European Association for Palliative Care in April 2015. Results: Main topics of the white paper are concepts and definitions of palliative care, its values and philosophy, euthanasia and physician-assisted suicide, key issues on the patient and the organizational level. The consensus process confirmed the 2003 European Association for Palliative Care white paper and its position on the relationship between palliative care and euthanasia and physician-assisted suicide. Conclusion: The European Association for Palliative Care feels that it is important to contribute to informed public debates on these issues. Complete consensus seems to be unachievable due to incompatible normative frameworks that clash. [ABSTRACT FROM AUTHOR]

Background: Outcome measurement plays an increasing role in improving the quality, effectiveness, efficiency and availability of palliative care. Aim: To provide expert recommendations on outcome measurement in palliative care in clinical practice and research. Methods: Developed by a European Association for Palliative Care Task Force, based on literature searches, international expert workshop, development of outcome measurement guidance and international online survey. A subgroup drafted a first version and circulated it twice to the task force. The preliminary final version was circulated to wider expert panel and 28 international experts across 20 European Association for Palliative Care member associations and the European Association for Palliative Care Board of Directors and revised according to their feedback. The final version was approved by the European Association for Palliative Care Board for adoption as an official European Association for Palliative Care position paper. Results: In all, 12 recommendations are proposed covering key parameters of measures, adequate measures for the task, introduction of outcome measurement into practice, and national and international outcome comparisons and benchmarking. Compared to other recommendations, the White Paper covers similar aspects but focuses more on outcome measurement in clinical care and the wider policy impact of implementing outcome measurement in clinical palliative care. Patient-reported outcome measure feedback improves awareness of unmet need and allows professionals to act to address patients’ needs. However, barriers and facilitators have been identified when implementing outcome measurement in clinical care that should be addressed. Conclusion: The White Paper recommends the introduction of outcome measurement into practice and outcomes that allow for national and international comparisons. Outcome measurement is key to understanding different models of care across countries and, ultimately, patient outcome having controlled for differing patients characteristics. [ABSTRACT FROM AUTHOR]

Background: People with intellectual disabilities often present with unique challenges that make it more difficult to meet their palliative care needs. Aim: To define consensus norms for palliative care of people with intellectual disabilities in Europe. Design: Delphi study in four rounds: (1) a taskforce of 12 experts from seven European countries drafted the norms, based on available empirical knowledge and regional/national guidelines; (2) using an online survey, 34 experts from 18 European countries evaluated the draft norms, provided feedback and distributed the survey within their professional networks. Criteria for consensus were clearly defined; (3) modifications and recommendations were made by the taskforce; and (4) the European Association for Palliative Care reviewed and approved the final version. Setting and participants: Taskforce members: identified through international networking strategies. Expert panel: a purposive sample identified through taskforce members’ networks. Results: A total of 80 experts from 15 European countries evaluated 52 items within the following 13 norms: equity of access, communication, recognising the need for palliative care, assessment of total needs, symptom management, end-of-life decision making, involving those who matter, collaboration, support for family/carers, preparing for death, bereavement support, education/training and developing/managing services. None of the items scored less than 86% agreement, making a further round unnecessary. In light of respondents’ comments, several items were modified and one item was deleted. Conclusion: This White Paper presents the first guidance for clinical practice, policy and research related to palliative care for people with intellectual disabilities based on evidence and European consensus, setting a benchmark for changes in policy and practice. [ABSTRACT FROM AUTHOR]

The purpose of this study was to provide an evidence base for colorectal cancer research activity that might influence policy, mainly at the national level. Improvements in healthcare delivery have lengthened life expectancy, but within a situation of increased cancer incidence. The disease burden of CRC has risen significantly, particularly in Africa, Asia and Latin America. Research is key to its control and reduction, but few studies have delineated the volume and funding of global research on CRC. We identified research papers in the Web of Science (WoS) from 2007 to 2021, and determined the contributions of the leading countries, the research domains studied, and their sources of funding. We identified 62 716 papers, representing 5.7% of all cancer papers. This percentage was somewhat disproportionate to the disease burden (7.7% in 2015), especially in Eastern Europe. International collaboration increased over the time period in almost all countries except in China. Genetics, surgery and prognosis were the leading research domains. However, research on palliative care and quality‐of‐life in CRC was lacking. In Western Europe, the main funding source was the charity sector, particularly in the UK, but in most other countries government played the leading role, especially in China and the USA. There was little support from industry. Several Asian countries provided minimal contestable funding, which may have reduced the impact of their CRC research. Certain countries must perform more CRC research overall, especially in domains such as screening, palliative care and quality‐of‐life. The private‐non‐profit sector should be an alternative source of support. [ABSTRACT FROM AUTHOR]

Background: Reflexive thematic analysis is widely used in qualitative research published in Palliative Medicine, and in the broader field of health research. However, this approach is often not used well. Common problems in published reflexive thematic analysis in general include assuming thematic analysis is a singular approach, rather than a family of methods, confusing themes and topics, and treating and reporting reflexive thematic analysis as if it is atheoretical. Purpose: We reviewed 20 papers published in Palliative Medicine between 2014 and 2022 that cited Braun and Clarke, identified using the search term 'thematic analysis' and the default 'relevance' setting on the journal webpage. The aim of the review was to identify common problems and instances of good practice. Problems centred around a lack of methodological coherence, and a lack of reflexive openness, clarity and detail in reporting. We considered contributors to these common problems, including the use of reporting checklists that are not coherent with the values of reflexive thematic analysis. To support qualitative researchers in producing coherent and reflexively open reports of reflexive thematic analysis we have developed the Reflexive Thematic Analysis Reporting Guidelines (the RTARG; in Supplemental Materials) informed by this review, other reviews we have done and our values and experience as qualitative researchers. The RTARG is also intended for use by peer reviewers to encourage methodologically coherent reviewing. Key learning points: Methodological incoherence and a lack of transparency are common problems in reflexive thematic analysis research published in Palliative Medicine. Coherence can be facilitated by researchers and reviewers striving to be knowing – thoughtful, deliberative, reflexive and theoretically aware – practitioners and appraisers of reflexive thematic analysis and developing an understanding of the diversity within the thematic analysis family of methods. [ABSTRACT FROM AUTHOR]

Background: The World Health Organisation and palliative care stakeholders recommend that healthcare workers are educated in palliative care. Provision of high-quality palliative care is fundamental to nursing practice. However, caring for palliative care patients and meeting family needs is challenging without appropriate knowledge and experience. Palliative care education and clinical skill development for undergraduate student nurses is a priority to ensure graduate nurses are equipped with the knowledge and skill to deliver safe and competent care. Methods: A scoping review guided by Arksey and O'Malley's framework was used to identify undergraduate student nurses' palliative care education and preparation. A comprehensive literature search of five electronic databases and grey literature were conducted from January 2002 to December 2021. The aim was to review the empirical evidence and ascertain how undergraduate student nurses' palliative care education is organised, facilitated, delivered and evaluated. Screening was performed independently by two reviewers against eligibility criteria with meetings to discuss included papers and form a consensus. Data was extracted and related to palliative care undergraduate student nurses' education, educational model, methodology, key findings, and recommendations. Analysed and summarised data was mapped onto the four key review questions (educational models utilised, methods used to assess effectiveness, facilitators/barriers and gaps in the literature). Results: 34 papers met the criteria for this review. The review highlights that undergraduate nursing palliative care education is more evident in high income countries. Limited and diverse published research existing in low- and middle-income countries. Educational models utilised were theoretical and experiential learning and educational process, early integration and multiple learning methods which were highlighted as facilitating factors. However, crowded curricula, lack of palliative care clinical placement expertise, difficulty providing clinical placement, timing and delivery of palliative care and difficulty responding to simulated environments (manikins) were perceived barriers. Nevertheless, palliative care education can increase knowledge, positive attitude, self-confidence and adequate preparation of undergraduate student nurses. Conclusion: This review highlights that there is limited research regarding the timing and delivery of palliative care principles and practice in undergraduate student nurse education. Early integration of palliative care education impacts upon students perceived preparedness for practice and positively influences their attitudes to palliative care provision. [ABSTRACT FROM AUTHOR]

The article presents a response to the article "Staffing a Specialist Palliative Care Service, a Team-Based Approach: Expert Consensus White Paper" in the journal's 2019; 22 issue. Topics discussed include the need for integrating mental health professionals into interdisciplinary palliative care teams, and the value of alleviating psychological suffering in treating patients with mental illness. Also noted are specific contributions of psychologists in palliative care design.

A call for special focus issue papers on integrative palliative care is presented.

Palliative care is one of the most basic care approaches for providing care to patients with life-threatening illnesses. Applying theories in palliative care provision results in such cares' development and organization and guides health care providers in this direction. Oneof the caring theories that can be focusedonpalliative care isWatson'shumancaring theory, which despite its applicability in palliative care, has not been studied much. Thus, this study aimed at assessing how to use this theory in palliative care that can be applied to health care providers in all clinical specialties and societies with different cultures. [ABSTRACT FROM AUTHOR]

We conducted a literature search to identify and compare definitions of the experiential dimension of spiritual pain. Key databases were searched, up to the year 2021 inclusive, for papers with a definition of "spiritual" or "existential" pain/distress in a clinical setting. Of 144 hits, seven papers provided theoretical definitions/descriptions; none incorporated clinical observations or underlying pathophysiological constructs. Based on these findings, we propose a new definition for "spiritual pain" as a "self-identified experience of personal discomfort, or actual or potential harm, triggered by a threat to a person's relationship with God or a higher power." Our updated definition can inform future studies in pain assessment and management. [ABSTRACT FROM AUTHOR]

Background: The number of children who require palliative care has been estimated to be as high as 21 million globally. Delivering effective children's palliative care (CPC) services requires accurate population-level information on current and future CPC need, but quantifying need is hampered by challenges in defining the population in need, and by limited available data. The objective of this paper is to summarise how population-level CPC need is defined, and quantified, in the literature. Methods: Scoping review performed in line with Joanna Briggs Institute methodology for scoping reviews and PRISMA-ScR guidelines. Six online databases (CINAHL, Cochrane Library, EMBASE, Medline, PsycINFO, and Web of Science), and grey literature, were searched. Inclusion criteria: literature published in English; 2008–2023 (Oct); including children aged 0–19 years; focused on defining and/or quantifying population-level need for palliative care. Results: Three thousand five hundred seventy-eight titles and abstracts initially reviewed, of which, 176 full-text studies were assessed for eligibility. Overall, 51 met the inclusion criteria for this scoping review. No universal agreement identified on how CPC need was defined in population-level policy and planning discussions. In practice, four key definitions of CPC need were found to be commonly applied in quantifying population-level need: (1) ACT/RCPCH (Association for Children with Life-Threatening or Terminal Conditions and their Families, and the Royal College of Paediatrics and Child Health) groups; (2) The 'Directory' of Life-Limiting Conditions; (3) 'List of Life-Limiting Conditions'; and (4) 'Complex Chronic Conditions'. In most cases, variations in data availability drove the methods used to quantify population-level CPC need and only a small proportion of articles incorporated measures of complexity of CPC need. Conclusion: Overall, greater consistency in how CPC need is defined for policy and planning at a population-level is important, but with sufficient flexibility to allow for regional variations in epidemiology, demographics, and service availability. Improvements in routine data collection of a wide range of care complexity factors could facilitate estimation of population-level CPC need and ensure greater alignment with how need for CPC is defined at the individual-level in the clinical setting. [ABSTRACT FROM AUTHOR]

This paper explores the critical role of prognostication tools in identifying high-risk hospitalized older adults who may benefit from palliative care. With an ageing population and increasing prevalence of chronic illnesses, the demand for patient-centered healthcare is paramount. The study evaluates three key tools—the Palliative Performance Scale, CARING criteria, and Palliative Care Rapid Emergency Screening tool. Each tool is analyzed for its psychometric properties, advantages, and limitations. Despite their strengths and limitations, these tools emerge as crucial screening tools for identifying older adults at heightened mortality risk within one year of hospital admission. Our paper calls for ongoing research to adapt and validate existing tools, ensuring their applicability across diverse clinical settings and patient populations. [ABSTRACT FROM AUTHOR]

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