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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]

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: 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]

Idiopathic pulmonary fibrosis (IPF) is a fatal progressive lung disease occurring in adults. In the last decade, the results of a number of clinical trials based on the updated disease classification have been published. The registration of pirfenidone and nintedanib, the first two pharmacological treatment options approved for IPF, marks a new chapter in the management of patients with this disease. Other nonpharmacological treatments such as lung transplantation, rehabilitation and palliation have also been shown to be beneficial for these patients. In this review, past and present management is discussed based on a comprehensive literature search. A treatment algorithm is presented based on available evidence and our overall clinical experience. In addition, unmet needs with regard to treatment are highlighted and discussed. We describe the development of various treatment options for IPF from the first consensus to recent guidelines based on evidence from large-scale, multinational, randomized clinical trials, which have led to registration of the first drugs for IPF. [ABSTRACT FROM AUTHOR]

Background: Dignity‐conserved nursing has been widely studied by scholars all over the world; however, there is no clear direction in which this field is trending. Aim: To conduct a bibliometric analysis that systematically characterises publications on dignity research in the nursing field from 2011 to 2020. Design: Bibliometric and visual analysis of retrieved articles. Methods: The Web of Science Core Collection database was used to retrieve all articles which addressed dignity in nursing from 2011 to 2020. The WoSCC's own analysis tool, CiteSpace and VOSviewer, were used to obtain visual analysis results. Reporting follows the STROBE checklist. Results: A total of 1429 papers on dignity care are included in this study. We found that the number of papers on this topic increased steadily, and the United States topped the list with 366 articles in total. The institute with the most publications was King's College London, and the most widely published journal was Nursing Ethics. We were able to identify four major research topics, namely dignity in: (a) palliative care, (b) dementia and the elderly, (c) health care and (d) nursing ethics. Terminally ill patient, home, value, rehabilitation and psychological distress were the five keywords with the highest burst strength. Conclusions: The interest in dignity care research has been steadily increasing from 2011 and is reflected in the number of published papers. The United States and Western Europe are leading in this field, both having a high number of cutting‐edge researchers and high‐level scientific research institutions. In the domain of dignity care, several stable and high‐yield core author groups have been formed. While the existing research mainly focuses on four hot spots, psychological distress, advanced cancer, maternity care and content analysis may be the research frontiers. [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: Acute and late toxicities in patients treated with (chemo)radiotherapy for head and neck cancer (HNC) is common and can negatively impact quality of life and performance. Performance status instruments measure the functional ability to perform daily life activities and are important tools in the oncologic population. Aims: Since Dutch performance status scales for the HNC population are lacking, we conducted this study to translate the Performance Status Scale for Head and Neck Cancer Patients (PSS‐HN) into Dutch (D‐PSS‐HN) and to validate this version. Methods & Procedures: The D‐PSS‐HN was translated into Dutch according to the internationally described cross‐cultural adaptation process. It was administered to HNC patients and together with the Functional Oral Intake Scale completed by a speech and language pathologist at five different time points during the first 5 weeks of (chemo)radiotherapy. Patients were asked each time to complete the Functional Assessment of Cancer Therapy and the Swallowing Quality of Life Questionnaire. Pearson correlation coefficients were used to calculate convergent and discriminant validity and the evolution of D‐PSS‐HN scores was assessed by means of linear mixed models. Outcomes & Results: A total of 35 patients were recruited and > 98% of the clinician‐rated scales were completed. Convergent and discriminant validity were demonstrated, with all correlations rs between 0.467 and 0.819, and between 0.132 and 0.256, respectively. The subscales of the D‐PSS‐HN are sensitive to detect changes through time. Conclusion & Implications: The D‐PSS‐HN is a valid and reliable instrument to assess performance status in patients with HNC treated with (chemo)radiotherapy. It is a useful tool to measure HNC patients' current diet level and functional abilities to perform daily life activities. WHAT THIS PAPER ADDS: What is already known on the subject: Acute and late toxicities in patients treated with (chemo)radiotherapy for HNC are common and can negatively impact quality of life and performance. Performance status instruments measure the functional ability to perform daily life activities and are important tools in the oncologic population. However, Dutch performance status scales for the HNC population are lacking. Therefore, we translated the Performance Status Scale for Head and Neck Cancer Patients (PSS‐HN) into Dutch (D‐PSS‐HN) and validated this version. What this paper adds to existing knowledge: We translated the PSS‐HN and demonstrated its convergent and discriminant validity. The subscales of the D‐PSS‐HN are sensitive to detect changes through time. What are the potential or actual clinical implications of this work?: The D‐PSS‐HN is a useful tool to measure HNC patients' functional abilities to perform daily life activities. The tool can easily be used in clinical settings: since data collection duration is very short, this facilitates clinical (and research‐related) implementation of the scale. Patients' individual needs could be identified by using the D‐PSS‐HN, resulting in more appropriate approaches and (early) referrals if needed. Interdisciplinary communication could be facilitated. [ABSTRACT FROM AUTHOR]

In this paper we, twin sisters, present a joint autoethnographic account of providing end of life care for our mum who had terminal cancer. Using the theoretical framing of performance from Goffman's theory of Dramaturgy, we present the findings from a joint autoethnography, focusing on two key themes: performing emotion work and performing what we conceptualise as 'dignity work'. This paper's contributions are twofold. First, conceptually, this paper offers an important contribution to literature concerned with the sociology of illness, by critically engaging with Goffman's notion of frontstage and backstage performance, applied to the context of home care provided by family carers. The second contribution of this paper is methodological; we promote the under‐utilised approach of a joint autoethnography and argue for its usefulness in the context of end of life care. We contend that the process of writing this paper was emotionally challenging, yet arriving at the final paper, which serves as a legacy of our mum, was cathartic. We argue for the usefulness of written diaries as a backstage arena through which other informal carers can think through, and come to terms with, experiences of death and dying. [ABSTRACT FROM AUTHOR]

Objectives: To explore the experiences of caregivers of terminally ill patients with delirium, to determine the potential role of caregivers in the management of delirium at the end of life, to identify the support required to improve caregiver experience and to help the caregiver support the patient.Methods: Four electronic databases were searched-PsychInfo, Medline, Cinahl and Scopus from January 2000 to July 2015 using the terms 'delirium', 'terminal restlessness' or 'agitated restlessness' combined with 'carer' or 'caregiver' or 'family' or 'families'. Thirty-three papers met the inclusion criteria and remained in the final review.Results: Papers focused on (i) caregiver experience-distress, deteriorating relationships, balancing the need to relieve suffering with desire to communicate and helplessness versus control; (ii) the caregiver role-detection and prevention of delirium, symptom monitoring and acting as a patient advocate; and (iii) caregiver support-information needs, advice on how to respond to the patient, interventions to improve caregiver outcomes and interventions delivered by caregivers to improve patient outcomes.Conclusion: High levels of distress are experienced by caregivers of patients with delirium. Distress is heightened because of the potential irreversibility of delirium in palliative care settings and uncertainty around whether the caregiver-patient relationship can be re-established before death. Caregivers can contribute to the management of patient delirium. Additional intervention studies with informational, emotional and behavioural components are required to improve support for caregivers and to help the caregiver support the patient. Reducing caregiver distress should be a goal of any future intervention.© 2016 The Authors. Psycho-Oncology Published by John Wiley & Sons Ltd. [ABSTRACT FROM AUTHOR]

Advance care planning is considered an important issue in end‐of‐life care for older adults. The ongoing COVID‐19 pandemic has interrupted the healthcare system and end‐of‐life care tremendously. This review aimed to explore available articles on advance care planning amid the pandemic and analyze qualitatively. PubMed and Google Scholar were searched on February 2021 using the relevant keywords. Retrieved articles were screened applying inclusion criteria. Any article describing advance care planning during the COVID‐19 era was included. A qualitative content analysis was conducted. In total, 20 articles incorporating 5542 participants from five countries were included. Among the articles, eight were primary studies and the rest were perspective papers or secondary analysis. From the qualitative content analysis six major themes emerged namely palliative care, lack of coordination among acute care, hospital palliative care, and long‐term care, community‐based advance care planning, real‐time dissemination of scientific information on the regional pandemic situation, online system and legislation. The COVID‐19 pandemic had decreased the uptake of advance care planning. Findings of the review suggested simplification of the procedure regarding advance care planning, implementation of community‐based advance care planning and utilization of online resources to enhance the process. Geriatr Gerontol Int 2021; 21: 779–787. [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]

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]

Aim: The aim of this concept analysis is to seek clarity as to what end‐of‐life conversations involve by developing a clear working definition and using model cases to conceptualise the defining attributes of an end‐of‐life conversations with the older person. Design: Walker and Avant's eight step approach to Concept Analysis. Data Sources: Four databases were searched, including PubMed, CINAHL, PsycINFO, and Scopus. A total of 339 publications were identified with 30 papers meeting the inclusion criteria and put forward for the final conceptual analysis. Results: The defining attributes associated with end‐of life conversations included (1) an ongoing process of older person empowerment, (2) discussion's concerning values and preferences concerning end‐of‐life issues, and (3) maintaining an open dialogue between all concerned individuals. Antecedents were associated with the older person is their readiness to talk openly about death and dying. Consequences were identified as having a better understanding of what death and dying may mean to the older person in a more specific manner. Conclusions: End‐of‐life conversations are vital in understanding an individual's values and preferences at the end of life, and yet, the concept of the end‐of‐life conversation has not been well defined in the literature. End‐of‐life conversations with the older person encompass ongoing discussions and maintaining open dialogue around end‐of‐life care while developing strategies to promote individual empowerment in making informed choices. Using a conceptual model, aides in addressing aspects of end‐of‐life conversations and an acknowledgment of the dynamic process of end‐of‐life conversations. [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]

This paper addresses the stories of volunteers in hospice and palliative care (HPC) from eight European countries. The aims of the paper are to explore the experiences of volunteers in HPC from their insider perspective, to understand why volunteers choose to work in this field and to understand what it means to them to be involved in palliative care in this way. Stories were collected by the European Association for Palliative Care (EAPC) Task Force for Volunteering contacts in each of the eight countries. The majority of stories (n = 32) came from volunteers involved in different settings including adult patient's homes, hospices, hospitals and care homes. Twenty volunteers were female, six were male, and ten did not give their gender. Stories were translated into English, and a qualitative framework analysis was performed. Volunteers were asked two questions: 'What do you do as a volunteer?' 'What does volunteering mean to you?' Three themes were identified from the data: (i) What volunteers do (ii) How volunteers approach their work and (iii) What working in HPC means to volunteers. The analysis revealed that common approaches to addressing and describing HPC volunteering in terms of tasks and roles could be expanded. To volunteers, it is not about tasks, but about a part of their life, the impact upon which can be significant. The results of this paper, therefore, add to the understanding of volunteers, in the sense of giving attention, being with, and of compassion as a community resource to patients and families in difficult situations. Theories about presence and presencing might have value in further underpinning this contribution to palliative care. Understanding the extent and depth of the volunteers' experience will help to prevent the undervaluing of their contribution and increase the impact of their involvement. [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. [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]

Background and aim: Patient and public involvement (PPI) has potential to enhance health‐care research and is increasingly an expectation, particularly for many funding bodies. However, PPI can be tokenistic, which may limit this potential. Furthermore, few studies report PPI processes and impact, particularly in doctoral research studies, which are seldom reported in peer‐reviewed papers. The aim of this paper was to explore the impact of PPI on two health‐related doctoral research studies and identify how PPI could be used meaningfully at this level. Method: The PPI processes included (a) involvement of two 'Research Buddies' who informed the research design and ensured implementation of a booklet intervention was feasible for family carers, (b) data analysis workshops with 'Research Buddies' to identify emerging themes from practitioner interviews, (c) public and stakeholder involvement who informed data collection tool design, and the design of an intervention to help people with obesity who attend weight loss groups. Findings: The application of PPI enhanced both doctoral studies by assisting data analysis; problem solving and improving recruitment rates; improving the usability and appeal of data collection tools and interventions; and developing implementation strategies. Patient and public involvement was considered a rewarding experience for both researchers and PPI contributors. Conclusion: This paper demonstrates the value of PPI in doctoral research in relation to its impact on research processes, researchers and contributors. We also present recommendations on how PPI could be incorporated into future doctoral research, including resources required, planning PPI processes and involving PPI contributors in all stages of research. [ABSTRACT FROM AUTHOR]

Background: Residential care/assisted living (RC/AL) is an increasingly common place of end‐of‐life care for persons with Alzheimer's disease and related dementia (ADRD), who have unique care needs as their health declines. Approximately 22% of RC/ALs provide specialized memory care (memory‐care RC/AL). Understanding how end‐of‐life outcomes differ by memory care among residents with ADRD could facilitate aging/dying in place for this population. The objective of this paper is to examine if end‐of‐life outcomes (i.e., mortality, hospice use, and number of days receiving hospice in the last month of life) differ between residents with ADRD who moved to memory‐care RC/AL, compared with residents with ADRD who moved to RC/AL without memory care (general RC/AL). Methods: Prospective cohort of 15,152 fee‐for‐service Medicare beneficiaries with ADRD who moved to large RC/AL (> = 25 beds) between 2016 and 2018. We used inverse probability treatment weighting to account for observable differences between memory‐care and general RC/AL residents. Two‐part models estimated the difference by memory care in the number of days receiving hospice care in the last months of life among RC/AL decedents. Results: The unadjusted mortality rates were 13.4% in general RC/AL and 15.8% in memory‐care RC/AL with an adjusted difference of 1.3 percentage points higher mortality among memory‐care RC/AL residents (p = 0.04). Hospice use was 8% and 10.6% among general and memory‐care RC/AL residents, respectively, with an adjusted difference of 1.4 percentage points (p = 0.01) higher in memory care. Two‐part models showed that decedents in memory‐care RC/AL spent about 1.4 more days receiving hospice care in the last month of life (p = 0.02). Conclusion: We find a higher mortality rate and higher rate of hospice use among memory‐care RC/AL residents. These findings suggest that memory care may attract residents closer to the end of life and/or promote hospice use at the end of life. [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]

This paper is built upon an assumption: that social theory can be generated through a meaningful engagement with a co‐researcher group of disabled young people. Our co‐researchers are theoretical provocateurs and theorists in their own right who, through their activism and writing, are challenging us to reconsider the meaning of life, death and disability. Their work on our funded Economic and Social Research Council (ESRC) project has enabled us to consider the promise and potential of humanist and posthuman epistemologies, theories, methodologies, interventions and activisms. The paper introduces the research, the authors of this paper (academics and co‐researchers) and then explores three layers of analysis that work the edges of posthuman thinking; sovereign and assembled selves; affects and desires; mourning and affirmation. We conclude by asserting that as a research team we are engaging with a DisHuman approach to theory and activism: one that blends the pragmatics of humanism with posthuman possibilities. [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]

Aim: Given the multifaceted nature of paediatric palliative care (PPC), integrative medicine and mind–body therapies, in particular, are increasingly used in this setting. However, to our knowledge, their use in PPC has never been specifically reviewed. Therefore, this work aims to provide a comprehensive overview of the application and possible beneficial effects of mind–body therapies in the PPC setting. Methods: Papers about the use of meditation and mindfulness, biofeedback, hypnosis, yoga, tai chi and qi gong, imagery, creative outlets, and art therapy in PPC were identified by browsing PubMed and CINHAL. Results: We found that the harmless nature of mind–body therapies has been extensively described, and available studies consistently show some benefits on the anxiety, stress, and quality of life of parents/caregivers and healthcare providers. However, well‐grounded and robust evidence does not fully support the efficacy of mind–body therapies, especially in patients. Conclusion: Considering the peculiarity of the PPC setting, we suggest that mind–body therapies should be further considered and properly investigated through larger controlled studies and according to the different populations of PPC children, as well as for parents, caregivers, and healthcare professionals. [ABSTRACT FROM AUTHOR]

End of life care in dementia is important to avoid patients receiving unnecessary investigations and treatments. In this paper, the authors discuss the final stage of dementia, illustrating this with a case example reflecting what is frequently encountered in hospital practice. The distinction is drawn between 'terminal inanition' of dementia and the more protracted cachexia, sarcopenia and progressive frailty that accompanies advancing dementia, with best practice clinical care considerations for palliative care outlined. [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]

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: Speech–language therapists and audiologists (SLT&As) may encounter difficulties when confronted with patient death and dying, which may conflict with their moral beliefs and result in moral injury. Furthermore, South African SLT&As practice in a country with a high mortality rate, which may add to the complexity of their experience. Moreover, they may be influenced by African philosophies promoting care, which might conflict with their experiences of patient death and dying. Aims: To explore the moral injury experienced by South African SLT&As in patient death and dying, and how they overcame the injury. Methods & Procedures: This article forms part of a larger qualitative study that explored SLT&As' experiences of patient death and dying in South Africa. Thematic analysis was conducted on the transcripts of 25 episodic narrative interviews conducted with South African SLT&As on their experiences of patient death and dying. Outcomes & Results: Findings suggest that South African SLT&As experienced helplessness, guilt and anger in patient death and dying. However, with support from the allied team, engaging in self‐reflection and religious practices, they reported alleviation of moral injury. Conclusions & Implications: In order to mitigate moral injury in South African SLT&As, they require professional education, self‐care strategies, guidelines and support from the teams in which they work and their supervisors. Research is needed that explores how SLT&As' biographical characteristics and interactions with significant others of dying and deceased patients, may result in moral injury. What this paper adds?: What is already known on this subject?: Moral injury and measures used to overcome the injury have been explored in military personnel, doctors and nurses, but not in SLT&As. However, studies that explored the perceptions of SLTs and/or audiologists regarding providing palliative care and of death and dying, particularly that by Rivers et al. in 2009, suggested that these professionals may be at risk of experiencing emotional trauma due to patient death, particularly when not receiving undergraduate education on this subject. However, the extent of this trauma and the support needed to overcome it is unknown because the participants in these studies may have not experienced patient death, and were only students or just SLTs. What this article adds?: This article highlights the complexity of speech–language therapy and audiology practice when confronted with patient death and dying. South African SLT&As may have to make decisions that conflict with their morals and professional practice standards, especially as the helping nature of their profession is characterized by African philosophies that promote care, which may result in moral injury. Clinical implications of this article: This article indicates that in addition to undergraduate education on patient death and dying, SLTs and audiologists require continuous professional education on this topic, self‐care strategies, support from the teams in which they work, and their supervisors and guidelines for when they encounter patient death and dying. [ABSTRACT FROM AUTHOR]

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]

Background: Shared decision‐making (SDM) is the process in which healthcare professionals and patients jointly discuss and decide which care and treatment policy is to be followed. The importance of SDM is increasingly being recognised across health settings, including palliative care. Little is known about SDM with people with intellectual disabilities (IDs) in the last phase of life. This review aimed to explore to which extent and in which way people with ID in the last phase of life are involved in decision‐making about their care and treatment. Method: In this scoping review, we systematically searched in the Embase, Medline and PsycINFO databases for empirical studies on decision‐making with people with ID in the last phase of life. Results: Of a total of 281 identified titles and abstracts, 10 studies fulfilled the inclusion criteria. All focused on medical end‐of‐life decisions, such as foregoing life‐sustaining treatment, do‐not‐attempt‐resuscitation orders or palliative sedation. All studies emphasise the relevance of involving people with ID themselves, or at least their relatives, in making decisions at the end of life. Still, only two papers described processes of decision‐making in which persons with ID actively participated. Furthermore, in only one paper, best practices and guidelines for decision‐making in palliative care for people with ID were defined. Conclusion: Although the importance of involving people with ID in the decision‐making process is emphasised, best practices or guidelines about what this should look like are lacking. We recommend developing aids that specifically support SDM with people with ID in the last phase of life. [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]

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]

Objective: The purpose of this study was to explore clinician experiences with cancer symptom and quality of life (SQL) management from diagnosis throughout therapy in the ambulatory setting, plus identify preferences for a future SQL decision support system.Methods: Eligible clinicians worked in ambulatory cancer care with responsibility for direct patient care. Focus groups were conducted to discuss symptom management throughout the treatment experience and features desired in a future decision support system. Each group was audio-recorded, transcribed, de-identified, and entered into NVivo 9 for analysis. Open and axial coding was completed, grouping common concepts into nodes; large constructs among the nodes were identified and main messages were synthesized.Results: A total of 118 clinicians were contacted by email resulting in a final sample of 51 attending 1 of 9 focus groups. Clinicians described a standard face-to-face approach to assessment of SQL, before and throughout therapy. Preparing patients for expected symptoms and approaches to management included paper-based patient education materials and referrals. Communicating with patients between visits was covered in detail, notably use of telephone and email. Future system features desired by the clinicians included an electronic, Web-based system with real-time, trended data, reasonable alerts, and tailored information for patients.Conclusions: Cancer care specialists reported strategies to assess and manage cancer SQL in ambulatory care including patient-reported outcome measures, contact communication modes, face-to-face interviews, and paper-based patient education materials. Future system features desired by clinicians included an electronic, Web-based system with real-time, trended data, reasonable alerts, and tailored information for patients. [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. [ABSTRACT FROM AUTHOR]

Background: Dementia care staff working in long‐term care settings are often exposed to a variety of complex situations that can be emotionally challenging, and a lack of adequate support and limited training opportunities may contribute to high levels of staff turnover in this area. Good‐quality training may be beneficial for improving the quality of care provided, and in improving staff confidence and morale. This systematic review aimed to establish how dementia care home staff perceived their own competence and confidence in relation to the care they deliver, whether there are any specific interventions that improve these feelings, and whether feeling more competent and confident impacts on care delivery. Method: A search of the literature focusing on staff perceptions of competence and confidence identified 14 873 studies. Following the removal of duplicates and papers that did not meet the inclusion criteria, 19 studies were included in the review and subject to quality assessment. Results: Studies varied in terms of quality and design, and were categorised as either intervention or non‐intervention studies. Four studies found a significant increase in feelings of competence and confidence following intervention, although many studies did not statistically analyze their data. The most successful interventions seemed to be those that involved practical support alongside education, and non‐intervention studies highlighted the importance of specific dementia and palliative care training with regard to feelings of competence and confidence. Conclusion: Teaching alone may not be an adequate method of training dementia care staff, and the most successful interventions were those where practical support was also provided. Most studies suggested that improvements in competence and confidence also had benefits for care delivery and staff wellbeing. More research needs to be done using validated outcome measures and with competence and confidence as the primary aim. [ABSTRACT FROM AUTHOR]

This document is a symposium from the International Journal of Psychology that explores the theme of caring for individuals in psychology beyond the scope of individuality. The symposium includes five papers that discuss various aspects of caring, such as home-based palliative care, the sacrifice of the family of body donors, hometown experiences in rural areas, rural education, and transgenerational trauma in Taiwan. The papers highlight the cultural and social perspectives on caring and emphasize the importance of ethicality, relational understanding, and holistic development. The symposium aims to provide a diverse and inclusive perspective on caring practices in psychology. [Extracted from the article]

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]

An introduction is presented in which the editor discusses articles in the issue on topics including the health risk of children with Down syndrome, the benefits of regular physical activity, and foot care.

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]

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]

Bereavement is associated with many negative behavioural, psychological and physiological consequences and leads to an increased risk of mortality and morbidity. However, studies specifically examining neuroendocrine mechanisms of grief and bereavement have yet to be reviewed. This systematic review is a synthesis of the latest evidence in this field and aims to draw conclusions about the implications of neurobiological findings on the development of new interventions. PRISMA guidelines for systematic reviews were used to search for articles assessing neuroendocrine correlates of grief. Findings were qualitatively summarised. The National Heart, Lung, and Blood Institute Study Assessment Tool was used to assess the quality of the included studies. Out of 460 papers, 20 met the inclusion criteria. However, most were of fair quality only. As a neuroendocrine marker, the majority of the studies reported cortisol as the outcome measure and found elevated mean cortisol levels, flattened diurnal cortisol slopes and higher morning cortisol in bereaved subjects. Cortisol alterations were moderated by individual differences such as emotional reaction to grief, depressive symptoms, grief severity, closeness to the deceased and age or gender. Research on neuroendocrine mechanisms of grief is still in its early stages regarding grief measures and the use and timing of neuroendocrine assessments. Most of the studies focus on cortisol as outcome, and only limited data exist on other biomarkers such as oxytocin. Future research might consider assessing a broader range of neuroendocrine markers and use longitudinal designs with a focus on the psychobiological reactions to loss. Based on this, individually tailored psychosocial interventions, possibly in the palliative care context, might be developed to prevent prolonged grief disorder. [ABSTRACT FROM AUTHOR]

Objectives: Patients with cancer who are at a transition to Phase I investigational treatments have been identified as an underserved population with regard to palliative care. This disease transition is often accompanied by spiritual and existential concerns. The study objective was to conduct a secondary analysis of data from a larger study testing a palliative care intervention. This paper reports the findings of this secondary focus on the spiritual needs of this population.Methods: Patients (n = 479) were accrued to this study prior to initiating a Phase I clinical trial with data collected at baseline, and 4, 12, and 24 week follow-up.Results: Qualitative data revealed that the transition to Phase 1 trial participation is a time of balancing hope for extended life with the reality of advancing disease. Quantitative results demonstrated increased spirituality over time in both religious- and non-religious-affiliated patients.Conclusions: Patients entering Phase I trials have important spiritual needs as they face treatment decisions, advancing disease, and often mortality. Spiritual care should be provided to seriously ill patients as a component of quality care. [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]

Objective: Corpus callosotomy is a palliative neurosurgical treatment for patients with either generalized or multifocal refractory epilepsy and injurious drop attacks. This report aims to systematically review the pediatric literature. Methods: Medline, Embase, Web of Knowledge, and Scopus were searched systematically for published articles on treatment outcomes of corpus callosotomy for refractory epilepsy. Studies were included if the patient population was younger than 18 at the time of surgery and median follow-up was >1 year. Studies were excluded if resective surgery was also performed. Results: A total of 12 articles met inclusion criteria. All articles were retrospective case series, with the exception of one being a prospectively designed retrospective case series. There was very little agreement among authors on the definition of a good seizure outcome. Articles that used the Engel classification found that 88.2% of total corpus callosotomy patients had a worthwhile reduction in seizures compared with 58.6% of patients who underwent anterior corpus callosotomy (p < 0.05). Drop attacks improved from corpus callosotomy more than other generalized seizure types. Reported complications were minor in all but one patient, and one death was reported. Transient disconnection syndrome was significantly more likely in total corpus callosotomy than in anterior corpus callosotomy (12.5% vs. 0%; p < 0.05). Improvements in quality of life, behavior, and intelligence/development quotient, as well as parental satisfaction, were generally correlated with seizure outcome. There was no postcallosotomy change in the number of antiepileptic drugs. Significance: Total corpus callosotomy was significantly more likely to result in a reduction in seizures. Anterior corpus callosotomy was unlikely to result in disconnection syndrome. Although all of the papers drew a similar conclusion, the quality of evidence was low. At best, the evidence raises the hypothesis that corpus callosotomy is a safe and effective treatment for refractory generalized epilepsy. It is clear that a case–control or randomized trial is warranted. [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]

Radiopharmaceutical therapy (RPT) is a precision medicine approach that involves the targeted delivery of radioactive atoms to tumor cells, representing a breakthrough strategy for cancer treatment. Radiopharmaceuticals typically consist of a small amount of radioactive material, a radionuclide, paired with a chemical that specifically targets the cell. Some radionuclides naturally target specific cells or biological processes without the need for modification. RPT is a novel cancer treatment method that offers various advantages over current traditional treatment approaches. One of the primary advantages of RPT is its ability to target cancer cells, including those in metastatic areas. Another key advantage of RPT is that radiation can be delivered systemically, locally, or physiologically to specific cells internally rather than being applied externally. Moreover, radiotracer imaging can be utilized to determine radiopharmaceutical absorption in target tissues before providing a therapeutic dose. Compared to all other cancer treatment approaches, RPT has demonstrated high efficacy with minimal toxicity. The recent approval of multiple RPT medicines by the US Food and Drug Administration highlights the tremendous potential of this treatment. This article provides a detailed review of RPT, including insights into manufacturing procedures, safety measures, and its applications in cancer therapy. [ABSTRACT FROM AUTHOR]