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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]

This is a response to the article by Merel et al. [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]

This study explores how papers published in international journals in palliative and end‐of‐life care report ethical approval and informed consent. A literature search following PRISMA guidelines was conducted in PubMed, the Web of Science Core Collection, Scopus, the ProQuest Social Science Premium Collection, PsycINFO, and the Cumulative Index to Nursing and Allied Health Literature (CINAHL). A total of 169 empirical studies from 101 journals were deductively coded and analysed. The results showed that 5% of publications provided no information on ethical approval, 12% reported minimal information, 56% reported rudimentary information, and 27% reported comprehensive details. We also found that 13% did not report any information on informed consent, 17% reported minimal information, 50% reported rudimentary information, and 19% reported comprehensive details. The prevalence of missing and incomplete ethical statements and inadequate reporting of informed consent processes in recent publications raises concerns and highlights the need for improvement. We suggest that journals advocate high reporting standards and potentially reject papers that do not meet ethical requirements, as this is the quickest path to improvement. [ABSTRACT FROM AUTHOR]

Background: Patients with advanced incurable cancer face difficult decisions about palliative treatment options towards their end of life. However, they are often not provided with the appropriate information and support that is needed to make informed decisions. This review aimed to identify contexts and mechanisms associated with communication tools, patient decision‐aids and shared decision‐making (SDM) approaches that influence patient outcomes. Methods: We used a realist review method to search for published studies of patients (adults > 18) with advanced cancer who were expected to make a decision about palliative treatment and/or supportive care in consultation with healthcare practitioners. We appraised and synthesised literature describing the contexts of (when and how) decision aids and SDM approaches are used, and how these contexts interact with mechanisms (resources and reasoning) which impact patient outcomes. Stakeholders including academics, palliative healthcare professionals (HCPs) and people with lived experience of supporting people with advanced incurable cancer contributed to identifying explanatory accounts. These accounts were documented, analysed and consolidated to contribute to the development of a programme theory. Results: From the 33 included papers, we consolidated findings into 20 explanatory accounts to develop a programme theory that explains key contexts and mechanisms that influence patient and SDM. Contexts include underlying patients' and HCPs' attitudes and approaches. These need to be understood in relation to key mechanisms, including presenting information in multiple formats and providing adequate time and opportunities to prepare for and revisit decisions. Contexts influenced mechanisms which then influence the levels of patient decisional satisfaction, conflict and regret. Conclusions: Our programme theory highlights mechanisms that are important in supporting shared treatment decisions for advanced noncurative cancer. The findings are informative for developing and evaluating interventions to improve understanding and involvement in SDM for patients with advanced incurable cancer. Patient and Public Contribution: We included patient and public involvement (PPI) representatives in four stakeholder meetings. PPI helped to define the scope of the review, identify their unique experiences and perspectives, synthesise their perspectives with our review findings, make decisions about which theories we included in our programme theory and develop recommendations for policy and practice and future research. [ABSTRACT FROM AUTHOR]

Background. Qualitative research plays an important part in providing evidence for practice in nursing, and is gaining greater acceptance within medicine. However, questions remain about what criteria are most appropriate for evaluating qualitative research. To date, little systematic evaluation of qualitative research in palliative care has been conducted. Aims. This paper is based on a larger study in which we conducted a critical review of qualitative research in palliative care from nursing, medicine, specialist palliative care, sociology, death studies, medical anthropology, and gerontology journals published between 1990 and 1999. The aim of this paper is to present an account of the strengths and weaknesses of qualitative palliative care research in nursing, using data from this review. Methods. In the larger study, 138 papers from 50 journals were reviewed critically using a tool developed to assess both content and quality; in one part of this tool reviewers recorded open-ended comments on the strengths and weaknesses of each paper. In this paper, we present a thematic analysis of reviewers' comments on a subgroup of 67 nursing papers from the main review, together with an analysis of comments on 29 papers from a comparison group of death studies, medical anthropology, and sociology journals. Patterns of positive and negative evaluation are identified and used to generate an account of strengths and weaknesses in qualitative palliative care research in nursing. Findings. Over 40% of the subgroup of papers from nursing journals received positive comments on topic and quality of writing; around 30% received positive comments on contribution to understanding, practical value, and conceptual or theoretical issues. Less than 20% received positive comments on other critical dimensions. Over 40% of nursing papers received negative comments on the link between data, analysis, and findings, other aspects of method and theoretical and conceptual issues. A higher... [ABSTRACT FROM AUTHOR]

The study discusses a new approach to parental agency in pediatric palliative care based on an active form of caregiving. It also explores the possibility of a positive conceptualization of parental agency in its relational context. The paper begins with an illustrative case study based on a clinical situation. This is followed by an analysis of various aspects of parental agency based on empirical studies that disclose the insufficiencies of the traditional approach to parental agency. In the next step, parental agency is analyzed from a reality‐based perspective as an activity focused on relationships and the cognitive capacity of parents vis‐a‐vis their seriously ill children. The paper also considers the importance of the cultural and social contexts in which parental agency and decision‐making take place. This agency is addressed not as individualistic in form, and nor is it exercised in terms of fixed choices. Rather, the focus is on its dynamic and future‐oriented aspects. Consequently, parental agency should be comprehended not only as a form of proxy agency representing the child's best interests but also as a complex decision‐making process in which the parents learn from their child how to become good, compassionate caregivers and at the same time good parents. [ABSTRACT FROM AUTHOR]

This paper proposes that resources from philosophy as a way of life (PWL), in particular the prescription of targeted 'spiritual exercises' (Hadot) can be used in palliative counselling, addressing Alexandrova's critique that philosophy as 'big picture' theories alone are insufficient. Part I shows how the disciplines of philosophy and medicine for a long time intersected, in particular in competing prescriptive notions of 'regimen' or 'way of life' (diaitês) in the ancient world, in which philosophy was considered widely as PWL. Part II applies PWL work on the ancient philosophical spiritual exercises to contemporary clinical settings. We show how six ancient spiritual exercises respond to patients' needs as persons, whose quality of life is importantly shaped by their beliefs and sense-making, as they face profound existential or spiritual challenges, as well as forms of physical disability and diminished capabilities which they may never have previously countenanced., (© 2023 The Authors. Journal of Evaluation in Clinical Practice published by John Wiley & Sons Ltd.)

Aim: The aim of this research is to identify the main approaches and domains of palliative care quality assessment through three questionnaires used for this purpose. Design: Systematic review. Methods: The proposed analysis process consists of three stages from 2000 to 2020: (i) massive literature search, (ii) text mining and (iii) systematic reviews carried out on the QLQ C30, Zarit Burden Interview and FAMCARE questionnaires. The Preferred Reporting Items for Systematic Reviews (PRISMA‐P) have guided our research. Results: Sixteen papers were included in our study. The main findings have been summarised using a descriptive narrative synthesis approach. Systematic reviews evidenced that such tools present variable factor structures or latent domains. The results obtained are generally representative of the evidence supporting the factor structure of the QLQ‐C30 in the general cancer population. The factor structure of the Zarit Burden Interview remains ambiguous, although the idea of a unifactorial structure predominates. In the case of FAMCARE, most of the factor structures differ from the initial proposal of Kristjanson. The categorisation of the main subjective assessment approaches could be useful for the construction of a coherent system of indicators to be used in nursing practice. For its part, the variability in the latent dimensionality of the questionnaires analysed could be due to: (i) the characteristics of the sample, (ii) the population studied, (iii) cross‐cultural variability, (iv) the design of the questionnaire and (v) the analysis techniques employed. [ABSTRACT FROM AUTHOR]

Some have questioned the extent of medical intervention at the end of people's lives, arguing that we often intervene in the dying process in ways which are harmful, inappropriate, or undignified. In this paper, I argue that over‐treatment of dying is a function of the way in which clinicians manage epistemic risk—the risk of being wrong. When making any scientific decision—whether making inferences from empirical data, or determining a plan for medical treatment—there is always a degree of uncertainty: in other words, there is always a possibility we make the wrong decision. As philosophers of science such as Justin Biddle have argued, there is no way to resolve epistemic risk without weighing up the consequences of being wrong. This requires us to draw upon other, non‐epistemic considerations, like social and ideological values; as such, questions of epistemic risk cannot be answered solely with reference to epistemic considerations such as evidence. In this paper, I explore how epistemic risk arises in end‐of‐life care, highlighting how clinicians face epistemic risk when diagnosing patients as dying and when determining whether a particular treatment is futile. I argue that there is no clear cut‐off between reversible and irreversible illness, nor between useful and futile treatment. Clinicians who diagnose a patient as dying thus risk failing to provide treatment which could be beneficial; conversely, clinicians who determine that a patient has a potentially reversible illness risk subjecting them to futile treatment that may be painful or distressing. Having outlined where and how epistemic risk arises in end‐of‐life care, I turn my attention to the values and norms which shape clinicians' management of epistemic risk. I highlight how societal attitudes towards death, the medicalisation of dying, and the practice of defensive medicine all contribute to clinicians erring on one side of epistemic caution, minimising the risk that they miss or fail to treat illness. By applying the concept of epistemic risk to end‐of‐life care, I offer a novel lens through which to view medical decision‐making in dying patients. [ABSTRACT FROM AUTHOR]

The delivery of effective healthcare entails the configuration and resourcing of health economies to address the burden of disease, including acute and chronic heart failure, that affects local populations. Increasing migration is leading to more multicultural and ethnically diverse societies worldwide, with migration research suggesting that minority populations are often subject to discrimination, socio‐economic disadvantage, and inequity of access to optimal clinical support. Within these contexts, the provision of person‐centred care requires medical and nursing staff to be aware of and become adept in navigating the nuances of cultural diversity, and how that can impact some individuals and families entrusted to their care. This paper will examine current evidence, provide practical guidance, and signpost professionals on developing cultural competence within the setting of patients with advanced heart failure who may benefit from palliative care. [ABSTRACT FROM AUTHOR]

Objective: To review the recent literature on the proposed entity of "terminal anorexia nervosa." Method: Review of recent literature on the concept of "terminal AN" as well as past and supporting work. Results: The cases and proposed definitions are reviewed, as is the growing literature on this topic. Problems exist with predicting outcomes and thus, determining futility, as well as about capacity for decision‐making. Discussion: To make decisions about treatment futility, the existing database for predicting AN course and treatment response must expand greatly. In addition, while decisional capacity is central to the debate, its determination may be unusually complex in this situation. The gaps identified point to extensive needs for future research, but they also indicate that the concept of "terminal AN" cannot be defined at present and should not be used. Public Significance: Anorexia nervosa is challenging to treat, and it often lasts for years. There is debate about whether palliative care or medical aid in dying should be considered. Identifying who has a terminal case of AN is important for this question, but we have limited ability to predict a given individual's outcome at present, and there are concerns about the ability of those with AN to make treatment decisions. This means the concept of "terminal AN" should not currently be used. [ABSTRACT FROM AUTHOR]

Objective: This paper describes the initiation of distress screening in oral cancer clinics, among patients with oral cancer in Sri Lanka, addressing the service gap of lack of psychosocial oncology services. This involved validation of the Sinhala version of the Distress Thermometer (DT) and Problem List (PL) as an adjustment disorder (AD) screening tool. Methods: The DT and PL were translated into the Sinhala language and cross‐culturally adopted by the "modified Delphi" technique. The judgment validity was obtained through face, content, and consensual validation. The criterion validation of DT was performed among 95 oral cancer patients from two oro‐maxillofacial‐oncological hospitals in Sri Lanka, against the AD diagnosis of two consultant psychiatrists. Results: The DT and the PL revealed good judgment validity. The optimal cut‐off point of DT was 4 with a sensitivity of 91.8% (95% CI = 80.8%–96.8%), specificity of 78.3% (95% CI = 64.4%–87.7%), positive predictive value of 0.81 (95% CI = 0.53%–1.1%) and negative predictive value of 0.90 (95% CI = 0.2%–1.7%). The test re‐test reliability of DT was excellent (Kappa coefficient 0.894). The area under the curve was 0.843. The PL demonstrated poor internal consistency in practical problems (KD‐20 = 0.4), social problems (KD‐20 = 0.3) and spiritual problems (KD‐20 = 0.6). Conclusions: The Sinhala version of DT and PL were deemed a valid AD screening tool for patients with oral cancer in Sri Lanka to initiate distress screening in busy oral cancer clinics. However, further validation for the full spectrum of distress is needed, preferably with improvements to PL. [ABSTRACT FROM AUTHOR]

While many of the maladies of the 20th century are steadily coming under control, the march of neurodegenerative disorders continues largely unchecked. Dementias are an exemplar of such disorders; their incidence and prevalence continue to rise, in large part due to a steadily ageing population worldwide. They represent a group of chronic, progressive and, ultimately, fatal neurodegenerative diseases. Dementia has remained therapeutically recalcitrant. It is not a single disease, and because of that, we cannot expect a single panacea. While primary prevention rightly gains prominence, those with established disease currently require a shift in focus from curative intent towards improved quality of life. Enter palliative care. The sheer number and complexity of needs of patients with dementia, from the physical to the psychosocial and spiritual, necessitates the engagement of a wide range of medical disciplines, nursing and allied health professionals. One of those disciplines, as highlighted in the recent Australian Royal Commission into Aged Care Quality and Safety, is palliative care. This paper shall expand upon that role in the overall context of care for those with dementia. [ABSTRACT FROM AUTHOR]

Aims: Pulmonary arterial hypertension (PAH) is common amongst patients with congenital heart disease (CHD). It is a severe and complex condition that adversely affects quality of life and prognosis. While quality of life questionnaires are routinely used in clinical pulmonary hypertension practice, little is known on how to interpret their results and manage PAH‐CHD patients with evidence of impaired health‐related quality of life, especially those with advanced disease and palliative care needs. Methods and results: We performed a systematic review of studies concerning palliative care for people with PAH‐CHD, also reviewing the health‐related quality of life literature pertaining to these patients. Of 330 papers identified through initial screening, 17 were selected for inclusion. Underutilization of advance care planning and palliative care resources was common. Where palliative care input was sought, this was frequently late in the course of the disease. No studies provided evidence‐based clinical criteria for triggering referral to palliative care, a framework for providing tailored care in this patient group, or how to manage the risk of sudden cardiac death and implantable cardioverter defibrillators in advanced PAH‐CHD. We synthesize this information into eight important areas, including the impact of PAH‐CHD on quality of life, barriers to and benefits of palliative care involvement, advance care planning discussions, and end‐of‐life care issues in this complex patient group, and provide expert consensus on best practice in this field. Conclusions: This paper presents the results of a systematic review and expert statements on the preferred palliative care strategy for patients with PAH‐CHD. [ABSTRACT FROM AUTHOR]

Introduction: People living with advanced cancer want to continue participating in their valued occupations amid cancer progression. However, increasing dependence and bodily deterioration challenge a person's ability to do so, thus requiring adaptation to how they engage in their occupations. Theoretical frameworks on the process of occupational adaptation often do not address the implications of progressive functional decline. Methods: A longitudinal phenomenological design was used to understand the lived experience of occupational engagement for working‐aged adults living with advanced cancer. A semi‐structured interview series explored participants' experience of occupational engagement and how this changed over time. Data were analysed thematically and mapped against the Model of Human Occupation (MOHO). Findings: Eight adults (40–64 years old) participated in 33 interviews over 19 months. Three themes were constructed from the data: ongoing adaptation through doing, the significance of volition in adaptation, and everyday life is contingent on my environment. Study findings demonstrate that the process of adaptation occurs through occupational engagement, is motivated by volition, and is affected by the environment. Volition and the environment play a more central role in occupational adaptation than occupational competency for the advanced cancer cohort. Conclusion: Study findings further MOHO's theoretical conceptualisation of occupational adaptation by identifying the centrality of volition and the environment in the process of adaptation. For people living with advanced cancer, disease progression results in unremitting functional decline, thus rendering competency an unstable and untenable construct. Rather, this paper argues that occupational adaptation is facilitated by volition (i.e., the motivation behind the doing) and the environment, thus fostering a sense of identity and meaning at the end of life. Occupational therapists' awareness of the significance of volition and the environment can thus foster continued occupational engagement and meaning at the end of life for people living with advanced cancer. [ABSTRACT FROM AUTHOR]

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

Background: The palliative care phenomenon is increasingly invested in all medicine and nursing fields, as care for people with kidney disease who do not wish to embark on dialysis: it encompasses a palliative approach to shared decision-making. To deliver patient-centred optimal care, nephrology healthcare staff should be knowledgeable about palliative care and the appropriate conservative management approach., Objective: This paper aimed to explore, using a Delphi survey, the barriers and facilitators to palliative care in patients with kidney disease., Design: An e-Delphi technique with three questionnaire rounds was performed; statements were generated using Likert scales., Participants and Measurements: A list of 80 statements related to palliative care in patients with kidney disease was divided into facilitators and barriers. Questionnaires were administered to 13 nephrology nurse experts in some European countries., Results: Seven items were removed from the list of 80 statements after the first round of the Delphi study; eight items achieved a significant change of the mean between round two and three, whereas internal stability emerged in all the remaining items., Conclusions: Specific training and education in palliative care emerged as a facilitator, as well as the role of spiritual and beliefs and the role of family and caregiver. The main barriers were represented by the differences in cultures, beliefs, and practices and by the lack of experience in the role of the staff in palliative care. These statements provide a platform for future research to improve palliative care practice in patients with kidney disease., (© 2021 European Dialysis and Transplant Nurses Association/European Renal Care Association.)

Background: Given the increase in the number of deaths within long‐term care facilities (LTCFs), the need for palliative and end‐of‐life (EOL) care education among such facilities has been increasing. As such, a systematic synthesis of global palliative and EOL care educational approaches and evaluation can aid further educational development. Objective: To synthesise the current literature on palliative and EOL care educational interventions for staff working in LTCFs and identify barriers to, and facilitators of, intervention implementation. Methods: The study used an integrative review framework wherein indexed databases, namely, CINAHL, EMBASE, MEDLINE, PsycINFO, Web of Science, Cochrane Library and Japan Medical Abstract Society, were systematically searched for studies published in English and Japanese between 2007 and 2019. Search terms that are related to palliative care, LTCF, and education were combined to increase search sensitivity. The quality of the papers was assessed using Joanna Briggs Institute Critical Appraisal Tools and the Mixed‐Methods Appraisal Tool. Results: A total of 52 studies were included in the review. Our results suggested that although studies in this area and setting have been evolving, suboptimal developmental research and educational practices, global variability and unstandardised approaches to education and lacking viewpoints from service users have remained. Barriers to intervention implementation were also reported due to the specific characteristics of LTCFs, which include high staff turnover and considerable variation in professional skills and experience. Conclusions: Given the different LTCF types, systems and policies across each country or region, further research on standardised educational interventions with contextual considerations using large‐scale studies with robust methodology is needed to meet the increasing demand for palliative and EOL care among the global ageing population. Implications for practice: Palliative and EOL care educational intervention for LTCF staff need to include more consideration of context, organisational culture and the user involvement throughout the process of education and research to enhance the quality of care in this complex setting. [ABSTRACT FROM AUTHOR]

Background: Access to palliative care services is essential for attaining universal health coverage for patients with a terminal cancer. Despite this, many patients with advanced cancer in low‐income countries, such as Myanmar, suffer at the end of life (EOL) due to little or no access to palliative care. However, actual evidence on EOL experiences of cancer patients in Myanmar is lacking. This paper aims to describe various dimensions of EOL experiences among patients with an advanced cancer from the largest public hospital in Myanmar. Methods: We surveyed 195 patients with stage IV cancer seeking care from outpatient oncology clinics to assess their quality of life, pain severity, pain medications taken, quality of communication with doctors, nursing care and health care coordination, and desire to end life sooner. We assessed socioeconomic status (SES) differences in each patient outcome using separate multivariate linear/logistic regressions. Results: Forty‐one percent of the patients in our sample reported that they wish their life would end sooner. Low SES cancer patients had significantly worse quality of life, reported poor health care coordination and were more likely to report severe pain compared to high SES cancer patients visiting the same hospital. Conclusion: To improve quality of life and pain management and to reduce EOL distress among patients with advanced cancer, there is a pressing need to develop and invest in hospital and community‐level palliative care services in Myanmar. [ABSTRACT FROM AUTHOR]

The integration of the child or young person (CYP) in conversations around advance care planning (ACP) is an important area of paediatric practice. These discussions provide CYP with the opportunity to voice their values, goals and preferences, enabling health‐care professionals to ensure they are aligned with their planned course of treatment. This process, often undertaken within the context of the child's family, empowers children to participate in decisions and experience the dignity of self‐determination. It also facilitates an increased understanding between the CYP and those involved in their care. The objectives of this paper are to highlight the importance of these conversations for paediatricians and identify barriers, both real and perceived, that may prevent them from engaging with a CYP about their preferences for future care including focusing more on discussion with the parents, and concern about or not having the skills to engage the child in such sensitive conversations. Triggers that can prompt clinicians to undertake ACP are also discussed. A further complexity is that after seeking their perspective, it may become apparent that the CYP may hold different views and perspectives to their parents and/or clinician. This review article will especially examine elements of end‐of‐life conversations that are critical to support the important goal of listening to the voice of the CYP. This includes considerations around timing, legal aspects, ethical tensions that arise when amplifying a child's voice, clinician/team‐member roles, clinical process considerations, and the use of specific interventions and ACP tools to facilitate these conversations with CYP. [ABSTRACT FROM AUTHOR]

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

In this paper, we strongly advocate for universal palliative care access during the COVID‐19 pandemic. The delivery of universal palliative care services has been called for by leading global health organizations and experts. Nurses are critical to realizing this goal. COVID‐19 diagnoses and fatalities continue to rise, underscoring the importance of palliative care, particularly in the context of scant resources. To inform the writing of this paper, we undertook a review of the COVID‐19 and palliative care literature and drew on our experiences. It is very clear that investment in nurses is needed to ensure appropriate palliative care services now and into the future. Avoiding futile interventions and alleviating suffering is an ethical imperative for nurses regardless of the setting. Multi‐level practices and policies to foster the delivery of safe, high‐quality palliative care for all are urgently needed. [ABSTRACT FROM AUTHOR]

Objective: Among patients living with advanced, life‐limiting illness, reconciling the prospect of disease progression with future goals and expectations is a key psychological task, integral to treatment decision‐making and emotional well‐being. To date, this psychological process remains poorly understood with no available measurement tools. The present paper develops and validates a measurement model for operationalizing this psychological process. Methods: In Phase 1, concept elicitation interviews were conducted among Stage IV lung, gastrointestinal, and gynecologic cancer patients, their caregivers, and experts (N = 19), to further develop our conceptual framework centered on assimilation and accommodation coping. In Phase 2, draft self‐report items of common assimilation and accommodation coping strategies were evaluated via patient cognitive interviews (N = 11). Results: Phase 1 interviews identified several coping strategies, some of which aimed to reduce the perceived likelihood of disease progression (assimilation), and others aimed to integrate the likelihood into new goals and expectations (accommodation). The coping strategies appeared to manifest in patients' daily lives, and integrally related to their emotional well‐being and how they think about treatments. Phase 2 cognitive interviews identified items to remove and modify, resulting in a 31‐item measure assessing 10 assimilation and accommodation coping strategies. Conclusions: The present work derived a content‐valid measure of the psychological process by which patients reconcile the prospect of disease progression with their goals and expectations. Further psychometric validation and use of the scale could identify intervention targets for enhancing patient decision‐making and well‐being. [ABSTRACT FROM AUTHOR]

The focus on patient autonomy in American and increasingly British medicine highlights the importance of choice. However, to truly honour patient autonomy, there must be both understanding and non‐control. Fifty‐eight semi‐structured in‐depth interviews were conducted with internal medicine physicians at three hospitals in the US and one in the UK. At hospitals where autonomy was prioritised, trainees equated autonomy with giving a menu of choices and felt uncomfortable giving a recommendation based on clinical knowledge as they worried that that would infringe upon patient autonomy. Employing Habermas's Theory of Communicative Action, this paper explores how physician trainees' communication practices of using purposefully graphic descriptions of resuscitation to discourage that choice prevent greater understanding and compromise non‐control. Central to this problem are also issues of colonisation of the life‐world by the system. Physicians are fully inculcated in their respect for autonomy but unintentionally resort to strategic forms of communication that prevent patients from adequately understanding their situation because trainees feel constrained against making recommendations. However, if the ideal of autonomy is to be realised, physicians might have to move towards practices that embrace a more authentic autonomy that fosters open communication that allows for co‐creation of consensus between doctors and patients. [ABSTRACT FROM AUTHOR]

Aim. The aim of this literature review was to advance understanding of dialysis refusal and withdrawal in relation to the experiences of patients and carers and to explore the trajectory to death of those abating dialysis. Method. Databases searched included CINAHL, Medline, PsycINFO, British Nursing Index, International Bibliography of the Social Sciences, ASSIA and Cancerlit. Forty-four quantitative papers and two qualitative papers were identified. Findings. The patient and carer experience is rarely explored in the literature but issues related to ‘Making decisions to withhold/forego or withdraw treatment’, ‘Length of survival without dialysis’, Prevalence of symptoms in end-stage renal disease’, ‘The utilisation of Advance Directives’ and ‘The impact on families’ throw some light on the phenomena of dialysis refusal and withdrawal. Conclusions. Little is known about those patients who withdraw from or decide not to commence dialysis. Empirical studies related to those who opt not to embark on dialysis are limited to four worldwide. There is an urgent need for further research to determine the experiences and needs of this population and a more patient-centred approach is required, consistent with modern palliative medicine. [ABSTRACT FROM AUTHOR]

Background As patterns of morbidity and mortality are changing, more people with intellectual disabilities develop cancer or other life-limiting illness. This paper reviews the literature around the need of people with intellectual disabilities for palliative care. Methods A range of databases and the World Wide Web were searched for relevant papers, book chapters, training and information materials, unpublished materials and policy guidelines. Publications from 1995 to 2005 are included. Findings Although there has been a steady increase in published materials in recent years, research data around the palliative care needs of people with intellectual disabilities remain scarce. Case reports are the most prevalent method of exploring pertinent issues. The paper presents an overview of issues identified in the literature, with a particular focus on pain and symptom assessment, ethical issues, service planning and training needs. Conclusion There are significant gaps in current knowledge. The authors make recommendations for future areas of research and development. [ABSTRACT FROM AUTHOR]

Although nursing terminologies and classifications represent nursing knowledge across diverse clinical areas, end‐of‐life care seems under represented in many aspects of these instruments. NANDA‐ I is an international nursing diagnostic classification widely used in nursing education and research. This taxonomy is based on seven axes, including the axis of time. In this commentary we bring discussion to the need to update nursing terminology by including the term end‐of‐life in the time axis of NANDA‐I. After describing the epidemiologic aspects of end‐of‐life care and discussing the relevant nursing role, we discuss patients' and family's human responses towards the end‐of‐life time and circumstance, which are central to defining nursing diagnoses. End‐of‐life care is one priority in health care, and nursing diagnoses should represent that situation as well. This paper focuses on a specific and international nursing diagnosis classification, NANDA‐I, which lacks an end‐of‐life component to its time axis for defining labels of nursing diagnoses. Attending to the importance of classifications in clinical reasoning, nursing diagnoses could better represent responses towards this health condition, opening new opportunities for increasing nursing roles in clinical practice, and also for new studies aiming to validate nursing diagnoses, and promoting an evidence‐based practice by including end‐of‐life in the axis time. [ABSTRACT FROM AUTHOR]

Abstract: Purpose: The purpose of this integrative review was to identify, review, synthesize, and analyze the current literature related to pain management in the pediatric palliative care population from infancy through adolescence. Methods: The literature was searched for the terms palliative, pediatric, and pain in PubMed, PsycINFO, Cumulative Index to Nursing and Allied HeALTH LITERATUre (CINAHL) Complete, and Google Scholar. The search was limited to papers in English that had been published from January 1, 2005, to December 31, 2016. Results: These searches resulted in 918 articles, of which 29 met inclusion criteria. These 29 articles were reviewed and reported. Four broad themes emerged: patient and family experience, pain assessment, pharmacological pain management, and nonpharmaceutical interventions. Conclusions: Gaps in current research have been identified, such as investigating pediatric pain scales for the palliative care population and new complementary and alternative medical therapy and other interventions. More research is needed to bring innovative pain management interventions to the attention of pediatric caregivers. Clinical Relevance: A better understanding of current research on pain in the pediatric palliative care population can improve patient care and lead to better research in this specialty field. [ABSTRACT FROM AUTHOR]

Delirium, a common syndrome in terminally ill people, presents specific challenges to a good death in end‐of‐life care. This paper examines the relational engagement between hospice nurses and their patients in a context of end‐of‐life delirium. Ethnographic fieldwork spanning 15 months was conducted at a freestanding residential hospice in eastern Canada. A shared value system was apparent within the nursing community of hospice; patients’ comfort and dignity were deemed most at stake and therefore commanded nurses’ primary attention. This overarching commitment to comfort and dignity shaped all of nursing practice in this hospice, including practices related to end‐of‐life delirium. The findings of this study elaborate the ways in which hospice nurses interpreted and responded to the discomfort of their patients in delirium, as well as the efforts they made to understand their patients’ subjective experiences and to connect with them in supportive ways. In addition to what is already known about clinical assessment and treatment of delirium in palliative care settings, the findings of this study offer points of reflection for nurses anywhere who are contending with the relational challenges that delirium presents in end‐of‐life care. [ABSTRACT FROM AUTHOR]

Aim: Family surrogate decision‐making during the later stage of a patient's life may sometimes result in conflict and emotional distress among the parties involved. The present article aims to promote ethical end‐of‐life decision‐making among healthcare professionals in a view to eliminating any misunderstanding that may arise while meeting the care needs of the patient. Design: A case study involving a request for treatment withdrawal by the family of a patient on end of life. Methods: This paper draws upon a scenario encountered during practice to analyse the moral commitments in delivering high‐quality end‐of‐life care with much emphasis on pre‐existing palliative care guidelines for adults. Results: Healthcare professionals are bound by the principle of beneficence, non‐maleficence, autonomy and justice. Although the use of guidelines may be tenable, decisions often take into consideration the patient's choice and then weighed against the moral values of healthcare specialists and those required in the profession. [ABSTRACT FROM AUTHOR]

Background/aim The role played by Australian occupational therapists with clients living with terminal illness has recently been highlighted in the Occupational Therapy Australia () position paper on palliative care. To date, little evidence exists about the work profile of these therapists, the type of clients seen, their practice settings and how long therapists are planning to remain in this clinical role. This paper presents results from a national survey of Australian occupational therapists working with people who are terminally ill. Methods The largest ever sample ( n = 171) of Australian occupational therapists working with clients who are terminally ill were purposively surveyed in this national mixed-method study, which was analysed using descriptive statistics and grounded theory. Results Results revealed a predominantly full-time, publicly employed (81%), female (93%) workforce, with an average six years of experience in this setting. Most therapists treated clients in the community (49%), with slightly fewer working in inpatient settings (40%). Many had dual caseloads, employed in palliative care clinical roles, aged care or oncology settings. Neoplasms of varying kinds represented the dominant clinical diagnostic category. The majority of respondents planned to remain in their current role on average seven more years, citing job satisfaction as the main reason for doing so. Conclusions Results from this study reveal important data for future workforce planning in this clinical area. The information gathered about client diagnoses and practice contexts will enable more targeted preparation of students for graduation. [ABSTRACT FROM AUTHOR]

The purpose of this study is to analyze the experience of hope that appears in a parent's blog presenting everyday life while caring for a child with Trisomy 18 (Edwards syndrome). The author, Rebekah Peterson, began her blog on 17 March 2011 and continues to post information on her son Aaron's care. The analysis of hope in the blog is carried out using a mixed methodology: initial and focused coding using Charmaz's constructed grounded theory and elements of Colaizzi's method. Each aspect of hope is coded through the blog author's statements, from which three main aspects of hope emerge: hope for the longest possible presence of Aaron with his family, hope for control over situations, pain, and symptoms, and existential facets of hope. These various aspects reveal to what extent the experience of hope is unique. Additionally, analyzing the experience of parental hope uncovers the additional problem of inappropriate communication by health care professionals (HCPs) in intensive care units, particularly when discussing the termination of causal treatment. The problem may be solved through proper education for HCPs and serious consideration of parental involvement in order to properly elaborate guidelines on this issue. The three main aspects of parental hope discussed in this paper might expand knowledge on the issue, helping HCPs to better understand the parents' experience of care and to help sustain parental hope in pediatric palliative care. [ABSTRACT FROM AUTHOR]

Background and purpose: The European Association of Palliative Care Taskforce, in collaboration with the Scientific Panel on Palliative Care in Neurology of the European Federation of Neurological Societies (now the European Academy of Neurology), aimed to undertake a review of the literature to establish an evidence-based consensus for palliative and end of life care for patients with progressive neurological disease, and their families. Methods: A search of the literature yielded 942 articles on this area. These were reviewed by two investigators to determine the main areas and the subsections. A draft list of papers supporting the evidence for each area was circulated to the other authors in an iterative process leading to the agreed recommendations. Results: Overall there is limited evidence to support the recommendations but there is increasing evidence that palliative care and a multidisciplinary approach to care do lead to improved symptoms (Level B) and quality of life of patients and their families (Level C). The main areas in which consensus was found and recommendations could be made are in the early integration of palliative care (Level C), involvement of the wider multidisciplinary team (Level B), communication with patients and families including advance care planning (Level C), symptom management (Level B), end of life care (Level C), carer support and training (Level C), and education for all professionals involved in the care of these patients and families (Good Practice Point). Conclusions: The care of patients with progressive neurological disease and their families continues to improve and develop. There is a pressing need for increased collaboration between neurology and palliative care. [ABSTRACT FROM AUTHOR]

Key Clinical Message: This case study describes the feasibility and safety of psychedelic‐assisted therapy (PAT) as a home‐based intervention for a patient with throat cancer experiencing significant existential distress. The patient tolerated the intervention well. This case supports the feasibility and safety of PAT for patients with life‐threatening conditions in a home setting. Psychedelic‐assisted therapy (PAT), as it is practiced today, merges traditional psychotherapeutic techniques with the use of psychedelics such as LSD, psilocybin, or MDMA with the aim of unlocking deeper insights in patients and treating mental conditions that are resistant to other forms of therapy. The present case study describes the safety of PAT as a home‐based intervention for a patient with throat cancer experiencing significant existential distress. The patient tolerated the intervention well and was asked to report on measures of anxiety, depression, and distress related to his somatic condition. The observations provided by this clinical case report align with previous findings, suggesting that PAT can be safely applied to potentially provide relief from existential distress in patients with life‐threatening conditions. As this is a single‐case study, generalizations should be made cautiously. Moreover, placebo effects, expectancy effects, and the natural course of the disease may influence outcomes. Future research should consider controlled trials to ascertain the efficacy and safety of such interventions in diverse settings. [ABSTRACT FROM AUTHOR]

Background: Quality improvement (QI) programs based on person‐centred outcome measures (PCOMs) play an important role in promoting optimal palliative care. However, routine use of PCOMs has been slow and difficult to implement, including within QI programs. Objective: This study aimed to identify implementation strategies that support the implementation of PCOMs as routine practice in hospital‐based palliative care, as well as the implementation theories, models and frameworks (TMFs) guiding the design of these implementation strategies. Methods: A scoping review was conducted in accordance with the Joanna Briggs Institute (JBI) Scoping Review framework. Four databases (Medline, CINAHL, Scopus and PubMed) were systematically searched for literature published between 1 January 1990 and 8 March 2024. Results: One hundred and fifteen unique implementation strategies, identified from 11 included studies, were mapped onto the 73 Expert Recommendations for Implementing Change (ERIC) discrete implementation strategies, covering 52% of the ERIC strategies. The most commonly used categories were train and educate stakeholders, and support clinicians, followed by develop stakeholder interrelationships and use evaluation and iterative strategies. Three key themes emerged: what to do; how to do it; and who to do it with. Only four studies employed TMFs to guide the design of the implementation strategies in this review. Conclusions: To promote the implementation of PCOM‐based QI programs, strategies should be developed based on identified/potential barriers and facilitators by using rigorous TMFs. The components of the implementation strategies must be reported transparently and consistently to enable replication and measurement in future research and practice. Patient and Public Contribution: This scoping review does not directly involve patients or the general public in its design or execution. However, it is part of an implementation study aimed at integrating the Palliative Care Outcome Collaboration (PCOC) model into routine clinical practice at a cancer hospital in China. Before the formal implementation, palliative care professionals from this hospital highlighted the need for a comprehensive analysis of existing evidence to support the effective adoption of the PCOC model in their specific clinical setting. [ABSTRACT FROM AUTHOR]

Paediatric palliative care is no longer restricted to patients with cancer and has been extended to patients with other chronic conditions, such as cystic fibrosis or neuromuscular disorders. This review focused on the current state of palliative care for children and adolescents with chronic kidney disease (CKD). We assessed the literature on CKD published up to August 2017. All the papers, except one from 1996, were published this century. This review discusses the role that palliative care plays in the process of decision-making and explores the possibilities of implementing palliative care into the routine therapy of affected patients and providing support for their families. Offering early palliative care as an integral part of the kidney, supportive care provided by the nephrology care team is both necessary and feasible for patients with CKD. As a minimum, a specialised palliative care team should be involved in patients with multiple comorbidities, in conservative treatment scenarios and in acute life-threatening complications. Further studies and guidelines are required to improve the care of patients with CKD and their families., Conclusion: Supportive palliative care should be implemented into the routine care of patients with life-limiting kidney disease., (©2017 Foundation Acta Paediatrica. Published by John Wiley & Sons Ltd.)

Whether institutions and not just individual doctors have a right to not participate in medical assistance in dying (MAID) is controversial, but there is a tendency to frame the issue of institutional non‐participation in a particular way. Conscience is central to this framing. Non‐participating health centres are assumed to be religious and full participation is expected unless a centre objects on conscience grounds. In this paper we seek to reframe the issue. Institutional non‐participation is plausibly not primarily, let alone exclusively, about conscience. We seek to reframe the issue by making two main points. First, institutional non‐participation is primarily a matter of institutional self‐governance. We suggest that institutions have a natural right of self‐governance which, in the case of health centres such as hospitals or hospices, includes the right to choose whether or not to offer MAID. Second, there are various legitimate reasons unrelated to conscience for which a health centre might not offer MAID. These range from considerations such as institutional capacity and expertise to a potential contradiction with palliative care and a concern to not conflate palliative care and MAID in public consciousness. It is a mistake to frame the conversation simply in terms of conscience‐based opposition to MAID or full participation. Our goal is to open up new space in the conversation, for reasons unrelated to conscience as well as for non‐religious health centres who might nonetheless have legitimate grounds for not participating in MAID. [ABSTRACT FROM AUTHOR]

Background: Although narratives—including an ill person's life story, life situation and future perspectives—seem to lie at the core of rehabilitation and palliative care in Scandinavian countries, we lack a scope of how, when and where narrative methods are used. Such a scope could provide knowledge and inspiration on a practical as well as a policy level. The objective of this study is to explore the literature on the use of systematic, narrative methods in rehabilitative and palliative care for people with life‐threatening illness in Scandinavian countries. Method: We conducted a scoping review in accordance with Preferred Reporting Items for Systematic Reviews and Meta‐Analyses Extension for Scoping Reviews (PRISMA‐ScR) where applicable. We performed a systematic search in CINAHL, Medline, PsychInfo, SOCIndex and SveMed+using the search terms 'life threatening illness', 'narratives', 'rehabilitation', 'palliative care' and 'Scandinavia', followed by a search for grey literature. We found 42 records to be eligible for this scope and extracted the data via piloted extraction tables. Results: We identified 17 narrative methods and present findings concerning four themes: (1) a record of the narrative methods used; (2) an objective and theoretical framework for the narrative methods; (3) the content and form of the narrative methods; and (4) the significance of the narrative methods used. Conclusion: Narrative methods are used in systematic ways in rehabilitation and palliative care in Scandinavian countries and cover a wide variety of objectives, theoretical frames, forms and outcomes. Further development may benefit from more elaboration on definitions and the relationships between objectives, theoretical frameworks and outcomes. [ABSTRACT FROM AUTHOR]

Objectives: To explore the experiences, acceptability and utility of a decision aid for family carers of people with dementia towards the end of life. Methods: We conducted semi‐structured interviews with a sample of family carers enroled into a 6‐month feasibility study in England, sampling to gain a range of experiences and views, based on relationship to person they cared for (e.g., spouse, adult child), age, gender, and self‐reported use of the decision aid during the feasibility study. Interviews were conducted in March 2021–July 2021 and analysed using reflexive thematic analysis. We used COREQ checklist to report our methods and results. Results: Family carers found the decision aid acceptable, describing it as comprehensive, accessible with relevant information and its presentation enabled good engagement. Experiences of the decision aid covered four main themes which demonstrated the perceived acceptability and utility: 1. A source of support and reassurance; 2. Empowering conversations and confidence; 3. Including the person living with dementia; and 4. Breaking down complexity. Conclusions: An aid focussing on decisions about dementia end of life care supported family carers break down complex and emotive decisions, not only with making decisions in the moment but also in future planning. Patient or Public Contribution: Our three Patient and Public Involvement (PPI) members (all former family carers) were crucial throughout the wider study. PPI supported development of the topic guides, supported trialling the topic guide and interview procedures and finally supported the development of themes as part of the analysis. [ABSTRACT FROM AUTHOR]

There has been much discussion regarding the acceptable use of sedation for palliation. A particularly contentious practice concerns deep, continuous sedation given to patients who are not imminently dying and given without provision of hydration or nutrition, with the end result that death is hastened. This has been called 'early terminal sedation'. Early terminal sedation is a practice composed of two legally and ethically accepted treatment options. Under certain conditions, patients have the right to reject hydration and nutrition, even if these are life-sustaining. Patients are also entitled to sedation as palliation for intolerable, intractable suffering. Though early terminal sedation is thought to be rare at present, the changing nature of palliative medicine suggests its use will increase. Arguments regarding early terminal sedation have failed to recognize early terminal sedation as a distinct legal and ethical entity. It can be seen as both the simple sum of treatment refusal and sedation for palliation, analogous to terminal sedation. It can also be seen as an indivisible palliative treatment, more analogous to assisted suicide or euthanasia. But ultimately, it is wholly analogous neither to terminal sedation given when death is imminent, nor to assisted suicide or euthanasia. This paper contends that early terminal sedation should be considered as a distinct entity. Such a reconception promises to provide a way forward in the debate, practice and policy regarding this contentious area of palliative medicine. [ABSTRACT FROM AUTHOR]

The Aristotelian-Thomist philosopher holds that human intellectual knowledge is possible because of the order in the world and natural human capacities. It is the position of this paper that there is a shared human form or nature that unites all humanity as members of the same kind. Moral treatment is due to every human being because they are human, and is not based upon expression of abilities. Humans have substantial dynamic existence in the world, an existence which overflows in expressive relationships. As both patient and health professional are human, human nature forms the natural foundation of health care. This paper looks towards human nature for moral guidance. The therapeutic relationship is seen as a part of the interpersonal moral space formed by human relationality, which tends towards community – in this case, the healthcare system. The therapeutic relationship is also a source of moral responsibility, as illness makes the patient vulnerable, while knowledge and nursing capacities generate in the nurse a duty to care. Nursing theory serves to connect philosophical reflection and nursing practice. Imogene King's conceptual system and theory of Goal Attainment is the theory that follows from the perspective of human person being presented. This synthesis of philosophy and theory is developed with the goal of shedding light on healthcare decisions in palliative care. The article concludes with the acknowledgement that the complexity of contextualized individual decisions requires the insight and discipline of the moral practitioner, and provides some thoughts on how education, development, and refinement transform an individual into a nurse. [ABSTRACT FROM AUTHOR]

Aim. This paper describes a study identifying the impact of key aspects of Chinese culture on the responses of mid-aged Chinese-Australians to their advanced cancer in order to make recommendations about their care within the health system. Background. Studies conducted in the 1960s and 1970s focused on understanding people's psychological responses to their experiences of terminal illness, but the issue of culture was not addressed. In recent years, a few studies have been conducted with Chinese-Australians, but were limited to issues related to their information needs and the disclosure of a cancer diagnosis. There is a lack of understanding of the impact of Chinese culture on the experiences of these patients. Method. A grounded theory approach was used to generate a substantive theory to explain how mid-aged Chinese-Australians respond to advancing cancer. Eleven participants were recruited and data were collected from face-to-face interviews, telephone contacts, observation and researcher fieldnotes. Data generation occurred between 1997 and 1999. Findings. Four modes of response to advanced cancer were identified: acute crisis, combat, despondency and waiting for death. This paper deals particularly with the combat mode which incorporated five culturally specific strategies used by participants in their struggle against advanced cancer. These were traditional Chinese medicine, traditional Chinese beliefs on the use of food for health maintenance, qi gong (a form of exercise), feng shui (which involves paying attention to spatial organization) and the worship of ancestors and gods. Deeply entrenched within these responses is the influence of Chinese culture, rooted in the beliefs and practices of traditional Chinese medicine and the philosophy of harmony and balance of yin and yang and qi. Conclusion. Healthcare professionals need to be aware of the cultural practices and beliefs of the different ethnic groups for whom they care, and of the importance of accommodation to and negotiation about these cultural practices. [ABSTRACT FROM AUTHOR]

Background. Nursing research generally, and palliative care research in particular, has been criticized for generating numerous small scale, often qualitative and/or evaluative studies, from which it is difficult to draw generalizations. Aims. Our aim in this study was to conduct a synthesis of three evaluative studies of palliative care services in the United Kingdom (UK), to ascertain patients’ reported expectations and experiences of specialist care. We also demonstrate how secondary data analysis and synthesis can identify commonalities and differences between services. Methods. Secondary qualitative data analysis was conducted on interview data gathered from 37 patients during three evaluation studies of specialist palliative care services. All studies used formative evaluation methodology. Findings. Four themes were identified: (1) knowledge and information about services, (2) meeting practical and psychosocial needs, (3) lack of control, and (4) family atmosphere. Data are presented to illustrate the presence or absence of these themes in patients’ accounts of their expectations and experiences of each service. Study limitations. Data were collected at different times between 1998 and 2000, and interviews were conducted by different researchers. Conclusions. Synthesizing findings from small scale qualitative studies offers the possibility of demonstrating their applicability beyond local and specific contexts. It is imperative to listen to the experiences of patients and carers as a basis for developing interventions and guidelines for services. The methods proposed in this paper offer the potential for these voices of experience to be heard more widely. [ABSTRACT FROM AUTHOR]

Background. Clinical Nurse Specialists (CNS) play a major role in the delivery of specialist palliative care services to patients with advanced cancer, in hospital, hospice and community settings across the United Kingdom. A major component of their work focuses on the delivery of emotional care and support to patients and their families. Aim. This paper critically examines the literature on emotional care and support for patients with advanced cancer requiring palliative care. The aim is to increase understanding of how CNSs and patients interact and work together to produce emotionally supportive relationships. Methods. A literature search was performed using the CINAHL, MEDLINE and ASSIA CD-ROM databases and combinations of the key words: ‘emotional support’, ‘emotional care’, ‘end of life’, ‘palliative’, ‘terminal illness’, ‘advanced cancer’, ‘Clinical Nurse Specialist’, ‘emotional labour’. Additional relevant articles were identified from the reference lists of papers identified by the literature search. Findings. The literature revealed a lack of clarity about the terms used to describe emotional care and support. However, at the same time, there is a taken for granted assumption that a shared understanding of these terms exists. Developing supportive nurse–patient relationships involves a complex process, one that consists of getting to ‘know the patient’ through the effective use of communication skills, in a variety of health care contexts. The costs of engaging in ‘emotion work’ are highlighted. Conclusions. Existing research fails to recognize that emotional care and support as a concept is not a fixed, stable entity learnt through experience and socialization, but is moulded by the process of social interaction and by specific contexts and theoretical perspectives. Further methodologically sound research is needed to explore what happens when emotional care and support are delivered in different care settings, obtaining the views of both parties involved. Implications for the practice of CNSs are discussed. [ABSTRACT FROM AUTHOR]

Rationale, Aims and Objectives: Continuous sedation at the end of life is an end-of-life practice that has gained considerable attention in the international literature. Nevertheless, significant confusion persists, even on how to label or define the practice. Several different terms and definitions exist, and these are often non-neutral and indicative of one's normative position on sedation at the end of life. This is problematic for two reasons. First, the use of such value-laden terms or definitions of continuous sedation may make it difficult, if not impossible, to agree on the facts surrounding continuous sedation. Second, including normative criteria in a definition can lead one to make disguised circular or tautological statements., Methods: This paper identifies commonly used terms and definitions and demonstrates how particular elements present in these are value-laden and can influence the ethical evaluation of continuous sedation at the end of life., Results: Two commonly used terms, 'palliative sedation' and 'terminal sedation', have been strongly criticized. We propose to use another, more descriptive term, namely 'continuous sedation at the end of life'. As regards the different definitions of sedation, some are general, but most contain very specific elements, thereby clearly limiting the number of cases that are covered by the definition. Some definitions of sedation include the intention one should (not) have, the possible indications for the practice, and the type of patients the practice should be reserved for., Conclusion: Including value-laden elements in the very definition of a clinical practice runs the risk of pre-empting a proper normative debate about the practice. We explain why this is the case and why it is problematic, and we propose an alternative, descriptive, definition that seeks to avoid these problems., (© 2015 John Wiley & Sons, Ltd.)

Although a widely used concept in health care, person-centred care remains somewhat ambiguous. In the field of palliative care, person-centred care is considered a historically distinct ideal and yet there continues to be a dearth of conceptual clarity. Person-centred care is also challenged by the pull of standardization that characterizes much of health service delivery. The conceptual ambiguity becomes especially problematic in contemporary pluralistic societies, particularly in the light of continued inequities in healthcare access and disparities in health outcomes. Our aim was to explicate premises and underlying assumptions regarding person-centred care in the context of palliative care with an attempt to bridge the apparently competing agendas of individualization versus standardization, and individuals versus populations. By positioning person-centredness in relation to the hermeneutics of the self according to Paul Ricœur, dialectics between individualization and standardization, and between individuals and populations were constructed. The competing agendas were related in a dialectic manner in the way that population health is of importance for the individual, and standardization is of importance for the population. The analysis suggests that person-centred care is an ethical stance, which gives prominence to both suffering and capability of the individual as a person. The dialectic analysis points towards the importance of extending person-centred care to encompass population and societal perspectives and thereby avoiding a problematic tendency of affiliating person-centred care with exclusively individualistic perspectives. Considerations for person-centred palliative care on micro-, meso- and macrolevels conclude the paper. [ABSTRACT FROM AUTHOR]

Significant developments have occurred in the discipline of palliative care in the modern era. This paper shall explore those developments, challenge some widely held misconceptions about the role and daily practice of the discipline, highlight the growing recognition of the role of palliative care in non-malignant diseases, briefly discuss innovations in symptom management and reflect on the underlying principles, maturation and challenges faced by the discipline. [ABSTRACT FROM AUTHOR]

Palliative care aims at improving the patient's quality of life. Clinical trials, therefore, often include the patient's subjective evaluation of symptoms and psychosocial problems, so-called health-related quality of life (HRQL), as end-points. Unfortunately, there are frequently methodological weaknesses in the assessment of HRQL. This paper discusses four criteria which can be used in the evaluation of the quality of such studies: I. The authors should document that they have included the relevant HRQL issues in the questionnaire. If a trial misses important issues, its results may be misleading. II. The sample size should be sufficient to detect meaningful differences. Many trials are too small. III. The assessment of HRQL should have the appropriate timing, reflecting the research questions. The symptoms and the benefit resulting from treatments are not constant over time and often have cyclic patterns. The results may therefore be dependent on the timing of the administration of questionnaires to patients and on the time frames specified in the instructions. IV. The data must be reasonably complete. Incomplete data cannot be avoided in palliative care research, but missing data due to administrative failures or unrealistic schedules must be avoided. A pilot study may show whether a study is feasible. Missing data are likely to bias results. Many published palliative care studies are suboptimal with regard to one or more of these four criteria. This should be considered when reading published studies and when new trials are planned. [ABSTRACT FROM AUTHOR]

In response to the General Medical Council's initiative to reform UK medical undergraduate education only a minority of medical schools have developed entirely novel curricula. Although the experiences gained by these schools in curriculum design and planning have not been recorded in the literature they are likely to be of interest to other medical schools still contemplating course revision. The medical school at the University of Liverpool recently launched an integrated problem-based course differing radically from its predecessor. The General Medical Council considered integration of contributing disciplines one of the most important aims of reform, yet courses that integrate independent component disciplines may be perceived by staff as threatening due to the loss of structure and disciplinary autonomy. Strategies for early course development must take account of these concerns as well as dealing with the identification of course content. A multidisciplinary consensus group process, designed to combat some of these problems, was employed to identify the learning objectives and core content for the new course. The purpose of this paper is to describe, first, the processes employed to identify the core palliative care component for a new PBL curriculum and secondly, how these objectives were integrated horizontally and vertically throughout all course elements. [ABSTRACT FROM AUTHOR]