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Background: Parents of babies diagnosed with life limiting conditions in the perinatal period face numerous challenges. Considerations include the remainder of the pregnancy, delivery of the baby and decisions around care in the neonatal period. Aim: To increase understanding of how parents experience the diagnosis of a life-limiting or life-threatening condition, during pregnancy and following the birth of their baby, by answering the question: 'what is known about the perinatal experiences of parents of babies with a life-limiting or life-threatening diagnosis?' Design: A meta-ethnography was conducted to synthesise findings from existing qualitative evidence. Data sources: British Nursing Database, CINAHL, Medline, PsycINFO and Embase databases were searched in January 2023. Findings: Relationships between parents and their families and friends, and with professionals influence the needs and experiences of parents, which oscillate between positive and negative experiences, throughout parents' perinatal palliative care journey. Parents highlighted the need for control and a sense of normality relating to their parenting experience. Validation was central to the experience of parents at all stages of parenthood. Relationships between the parent and the baby were unwavering, underpinned with unconditional love. Conclusion: Professionals, family members and friendship groups influence the experience, validating parents and their baby's identity and supporting parents in having a sense of control and normality by demonstrating empathy, and providing time and clear communication. [ABSTRACT FROM AUTHOR]

Palliative care involvement is common among patients with gynecologic cancers related to delayed diagnosis and symptom burden. Physical symptoms such as pain, nausea, and weakness can be managed with analgesics, antiemetics, nutrition, and physical therapy. Psychiatric side effects like anxiety disorders, however, are harder to capture. Associations among palliative care, anxiety assessment, and intervention in this population are not well studied. This could be related to lack of psychiatric-specific education in medical, nursing, and continuing palliative education programs. Palliative guidelines suggest systematically addressing psychiatric aspects of care in each patient encounter. Prior to intervention, providers must first properly assess anxiety. In this paper, development and validity of three instruments designed to measure clinical anxiety will be reviewed, including National Comprehensive Cancer Network Distress Thermometer, State-Trait Anxiety Inventory Form Y1, and Beck Anxiety Inventory. Conclusions will be drawn regarding reliability and validity of each tool, and recommendations will be made based on respective psychometric properties. [ABSTRACT FROM AUTHOR]

The incidence of dementia is increasing rapidly with nearly 7 million currently and projected to triple by 2050. As of 2020, there are 53 million informal caregivers. Twenty-four percent of these informal caregivers are caring for persons living with dementia. Informal caregivers experience an exorbitant amount of stress and strain causing decreased quality of life and less energy to provide the care needed as well as personal health issues. Predictions of increased incidence of dementia, as well as concerns for shortages of informal caregiver availability make the concern for caregiver burden a critical issue. Decreasing caregiver burden is a goal of intervention. The palliative care doula (PCD) provides one possible intervention. This paper examines the psychometric measures of five different instruments intended to quantify the level of caregiver burden experienced with and without the intervention of a relationship with a PCD. The most appropriate tool to utilize is the Zarit Burden Interview-12 for this population. Further research is needed to provide pragmatic, patient centered outcomes that will address this public health caregiving crisis. [ABSTRACT FROM AUTHOR]

Background: One of the most important and ethically challenging decisions made for children with life-limiting conditions is withholding/withdrawing life-sustaining treatments (LST). As important (co-)decision-makers in this process, physicians are expected to have deeply and broadly developed views. However, their attitudes and experiences in this area remain difficult to understand because of the diversity of the studies. Hence, the aim of this paper is to describe physicians' attitudes and experiences about withholding/withdrawing LST in pediatrics and to identify the influencing factors. Methods: We systematically searched Pubmed, Cinahl®, Embase®, Scopus®, and Web of Science™ in early 2021 and updated the search results in late 2021. Eligible articles were published in English, reported on investigations of physicians' attitudes and experiences about withholding/withdrawing LST for children, and were quantitative. Results: In 23 included articles, overall, physicians stated that withholding/withdrawing LST can be ethically legitimate for children with life-limiting conditions. Physicians tended to follow parents' and parents-patient's wishes about withholding/withdrawing or continuing LST when they specified treatment preferences. Although most physicians agreed to share decision-making with parents and/or children, they nonetheless reported experiencing both negative and positive feelings during the decision-making process. Moderating factors were identified, including barriers to and facilitators of withholding/withdrawing LST. In general, there was only a limited number of quantitative studies to support the hypothesis that some factors can influence physicians' attitudes and experiences toward LST. Conclusion: Overall, physicians agreed to withhold/withdraw LST in dying patients, followed parent-patients' wishes, and involved them in decision-making. Barriers and facilitators relevant to the decision-making regarding withholding/withdrawing LST were identified. Future studies should explore children's involvement in decision-making and consider barriers that hinder implementation of decisions about withholding/withdrawing LST. [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: Forty-five percent of the world's population lives in rural areas, yet their access to palliative care is quite limited. Identifying the care elements rural populations with palliative care needs require is critical to improving care outcomes. Aim: To identify the key care elements that optimise palliative care for people in rural communities. Design and data sources: A systematic review of articles studying the impact of novel rural model of care interventions was undertaken in May 2022. This study is reported using the PRISMA Statement and was registered with Prospero (CRD42020154273). Three databases were searched, and the data analysed according to Popay's narrative synthesis, and elements classified using the WHO Innovative Care for Chronic Conditions (ICCC) Framework. Results: Of the 9508 identified papers, 15 met the inclusion criteria, reporting on 14 studies involving 1820 rural patients. Care received spanned 12/18 of the WHO ICCC Framework elements, with wide variability in how these elements were operationalised. The five elements that signal improved outcomes were: (1) Promote continuity and coordination; (2) Prepared, informed and motivated health care teams; (3) Prepared, informed and motivated patients and families; (4) Organise and equip health care teams and (5) Promote consistent financing. Conclusions: A well-coordinated multidisciplinary team approach, led by clinicians with specialist palliative care expertise, integrated across local health care settings, using information systems and care planning, is critical to optimising rural palliative care patient outcomes. Rural patients and their families require timely input from specialist palliative care clinicians and information to address their needs. Prospero registration ID: CRD42020154273 https://www.crd.york.ac.uk/PROSPERO/display_record.php?RecordID=154273 [ABSTRACT FROM AUTHOR]

Background: Residential aged care facilities is one of the most common places to deliver of end of life care. A lack of evidence regarding preferred place for end of life care for residents of aged care facilities impacts on delivery of care and prevents assessment of quality of care. This paper reports the preferences, current status of end of life care and enablers and barriers of care being delivered in line with the wishes of residents of participating aged care facilities. Methods: We collaborated with six equally sized aged care facilities from the Greater Newcastle area, New South Wales, Australia. An audit of the quality of end of life care for residents was conducted by retrospective medical record review (n = 234 deceased patients). A retrospective review of emergency department transfers was conducted to determine the rate of transfer and assign avoidable or not. Qualitative focus group and individual interviews were conducted and analysed for barriers and enablers to end of life care being delivered in accordance with residents' wishes. Results: Most residents (96.7%) wished to remain in their residential aged care facility if their health deteriorated in an expected way. Residents of facilities whose model of care integrated nurse practitioners had the lowest rates of emergency department transfers and timelier symptom management at end of life. Family decision making influenced location of death (either supporting or preventing care in place of patient preference). Conclusion(s): To better provide care in accordance with a person's wishes, aged care facilities need to be supported to enable end of life care insitu through integrated care with relevant palliative care providers, education and communication strategies. Family and community health and death literacy interventions should accompany clinical innovation to ensure delivery of care in accordance with residents' preferences. [ABSTRACT FROM AUTHOR]

Providing home care to children with complex physical health needs is an emotionally challenging role. Extant literature and documents such as the Cavendish Review (2013) have reported that a large proportion of care for this population is carried out by non-registered staff (support workers). Provision of clinical supervision for nurses working in palliative care is increasing, however, supervision needs of support workers are commonly neglected. This paper sought to synthesise what is known about clinical supervision practices for support workers in paediatric palliative care (PPC). A literature review was conducted in accordance with integrative review guidelines. 315 papers were identified initially, 15 studies were included in this review. Four commonalities were identified: importance of team cohesion, varying degrees of formality, self-awareness and practicalities. Support workers received varying forms of supervision and some facilitators faced organisational difficulties involving staff in supervision. Support workers who received staff support generally appreciated it in recognition that their work is complex and emotionally difficult. This paper highlighted that further research should investigate the efficacy of clinical supervision as a method of reducing stress and burnout for support workers. Any implementation of supervision should involve a considered approach to training and supervision to ensure fidelity. [ABSTRACT FROM AUTHOR]

Aims: This study aimed to investigate the usefulness of nonwearable actigraphy to assess changes in motor activity before and after rescue analgesic administration in terminally ill cancer patients. Background: Evaluating pain in terminally ill cancer patients is difficult; pain assessment tools are needed. Methods: This was an exploratory descriptive study conducted within a palliative care unit. A nonwearable actigraph was used to measure the activity score and movement index of terminally ill patients with weeks‐long prognosis and pain. The actigraph and medical data were integrated, and data were compared 6 h before and after rescue analgesic administration. Results: Among 10 patients (age: 75.8 ± 12.3 years; six men), we evaluated 28 pain episodes (mean activity score: 130.9 ± 180.5 counts per minute; movement index: 68.8%). When pain was relieved at night following rescue analgesic administration, activity score and movement index decreased significantly (6 h before vs. 6 h after analgesics, respectively: 113.1 to 69.7 counts per minute; 64.3% to 41.8%; both p < 0.0001). With no relief after rescue analgesic administration, activity score did not differ significantly 6 h before and after analgesics: 147.3 to 137.7 counts per minute. Conclusion: Pain in terminally ill cancer patients could be assessed using a nonwearable actigraph to capture motor activity and improve pain assessment. Summary statement: What is already known about this topic? Pain assessment in terminally ill patients with cancer relies on a subjective patient complaint as well as observations by caregivers, such as nurses and physicians. However, pain assessment can be challenging because some patients do not complain of pain, which contributes to poor pain control.Evaluating pain in terminally ill patients with cancer is difficult; therefore, developing pain assessment tools is required. What this paper adds? This is the first report to show that pain in patients who are in bed changes motor activity. Therefore, measuring motor activity could be used as an indication of pain. The implications of this paper: This study suggests that motor activity measurement with a sensing device could be used to indicate patient pain and improve pain assessment. [ABSTRACT FROM AUTHOR]

Aim: To explore the significance of culture, professional support in the community, social interactions and intrapersonal determinants of adults' preferences for life‐sustaining treatments and palliative care. Methods: A cross‐sectional design with a Social Ecological Model was used. Between 1 October 2012 and 31 December 2012, 474 adults aged ≥20 years living in a city of Southern Taiwan completed the survey. Data were analysed using hierarchical multiple regression. Results: The life‐sustaining measures model was significant with 15.3% (p < 0.0001) of the variance in the Modified Emmanuel Medical Directives being explained by variables of death of self and healthcare services' support. The palliative care model was significant with 18% (p < 0.0001) of the variance in the Modified Hospice Attitude Scale being explained by variables of palliative care knowledge, death of self and social interactions. However, cultural value adherence did not predict adults' preferences for life‐sustaining measures and community resources support did not predict palliative care preference. Conclusions: Findings enhance our understanding of the significance of different societal levels on adults' preferences for end‐of‐life care. Palliative care knowledge, fear of death, healthcare services' support and social interactions are essential factors that need to be taken into consideration when it comes to discussion about life‐sustaining treatments and palliative care. Summary statement: What is already known about this topic? End‐of‐life (EOL) preferences can be shaped not just by knowledge, values and individuals' attitudes but rather a host of social influences.Few studies with theoretical frameworks or models in the literature are available to provide a comprehensive understanding of factors contributing to responses at the EOL. What this paper adds? The findings advance the knowledge of the influence of social interactions, healthcare services' support, palliative care understanding and fear of death on adults' preferences for life‐sustaining treatments and palliative care.The identified relationships in the context of life‐sustaining treatments and palliative care provide practical guidelines, which can help to inform appropriate supportive interventions for EOL care planning. The implications of this paper: Healthcare services that provide a mediating structure where a person belongs should focus on enhancing community resources regarding EOL healthcare planning, knowledge about palliative care and reinforcing life and death education.The social support network and emotional ties with a person's significant others should also be taken into consideration to facilitate EOL healthcare planning and to promote good quality of life at EOL. [ABSTRACT FROM AUTHOR]

Background: The impact of Australia's diverse population on the aged care sector has been acknowledged, with the Royal Commission into Aged Care Quality and Safety findings providing evidence of the importance of population diversity for consumer-directed and person-centred care. Similarly, the Aged Care Quality Standards and Aged Care Diversity Framework acknowledge the diversity of Australia's ageing population and potential implications for equitable access to care and the ensuing importance of culturally appropriate and culturally safe care. This paper reports on the development of informational web pages and utilisation findings for use by the aged care workforce supporting diverse populations. Methods: Content was created for the End of Life Directions for Aged Care website, based on rapid review findings relating to barriers and limitations for people accessing equitable care in the aged care and palliative care sectors. Results: Website pages containing embedded links to useful content and resources for health professionals and care workers who work with older diverse adults are shown to be well received among users. Conclusions: As Australia's future population will age with increasing diversity markers, with implications for aged care and palliative care service provision, workforce access to up-to-date, relevant and evidence-informed information on best practice non-clinical support for individuals from diverse backgrounds towards the end of life promotes a person-centred care approach. Access data shows that the website content is being utilised increasingly over time and suggests that it is filling a gap in comprehensive and accessible end of life resources that have been missing from the Australian aged care and palliative care workforce. Consumer-directed and person-centred care is crucial in appropriately servicing all older adults, given each older adult has a diverse background, which impacts their aged care experiences. This paper reports on the development of web pages designed to support the knowledge and information needs of the aged care workforce. There is a need for such resources within this sector to inform culturally appropriate and safe care. [ABSTRACT FROM AUTHOR]

Aims and objectives: To conduct an integrative review of the literature to understand how the incorporation of traditional therapies affect First Nations people's utilisation of palliative care services. Background: First Nations peoples face many barriers related to accessing and utilising specialised health services such as palliative care. Whilst culturally appropriate care has been shown to improve these outcomes, there is little evidence regarding how this may be achieved. Design: Integrative review. Methods: A systematic search was conducted using electronic databases CINAHL, Joanna Briggs, Medline, Scopus, ScienceDirect InformitHealth and ProQuest between the years of 2005‐2021 databases were searched for papers with full text available and published in English. Papers were included if they were primary‐based research and focused on the topics of the use of traditional therapies in a palliative care context by First Nations persons. The Critical Appraisal Skills Programme principles were used to assess the methodological quality of the selected articles. Results: Seven studies met the inclusion criteria and were included in the review. The review included six qualitative studies and one quantitative study. From these studies, five themes were identified in the literature: supporting a holistic approach, developing culturally appropriate care, conflict within a Western medical model, regulatory issues, and geographical barriers. Conclusion: There is a dearth of current literature available discussing the utilization of traditional therapies in palliative care. From the literature analysed, the benefits of including traditional therapies are overall positive, however, there are barriers including conflict with the Western model of medicine and regulation. More research is required in the provision of traditional therapies in palliative care. Relevance to Clinical Practice: The incorporation of traditional medicines within a palliative care setting could help nurses provide holistic and culturally appropriate care, especially in rural and remote areas where they make up the majority of the healthcare force. [ABSTRACT FROM AUTHOR]

Aims and objectives: To map existing evidence about educational interventions or strategies in nursing and allied healthcare concerning students' and staffs' spiritual care provision. Background: Spiritual care is an important part of whole person care, but healthcare staff lack competence and awareness of spiritual issues in practice. To rectify this, it is important to identify what educational approaches are most helpful in supporting them to provide spiritual care. Design: A scoping review using the PRISMA‐ScR checklist. Method: Searches in the databases CINAHL, MEDLINE, ATLA and ERIC were conducted for papers spanning January 2009–May 2020. Search terms were related to spirituality, spiritual care, education and clinical teaching. Appraisal tools were used. Results: From the 2128 potentially relevant papers, 36 were included. The studies were from 15 different countries and involved nurses, physicians and other health‐related professions, and both quantitative, qualitative and mixed methods were used. The results are presented in three themes: Understanding of spirituality, Strategies in educational settings, and Strategies in practice settings. The review points to great diversity in the content, lengths and setting of the educational interventions or strategies. Conclusions: Courses in spiritual care should be implemented in curricula in both undergraduate and postgraduate education, and several studies suggest it should be mandatory. Courses should also be available for healthcare staff to raise awareness and to encourage the integration of spiritual care into their everyday practice. There is a need for greater consensus about how spirituality and spiritual care are described in healthcare settings. Relevance to clinical practice: Spiritual care must be included both in monodisciplinary and multidisciplinary educational settings. The main result of spiritual care courses is in building awareness of spiritual issues and self‐awareness. To ensure the provision of spiritual care for patients in healthcare practices, continuing and multidisciplinary education is recommended. [ABSTRACT FROM AUTHOR]

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

Objectives: Despite known benefits, advance care planning (ACP) is rarely a component of usual practice in long-term care (LTC). A series of tools and workbooks have been developed to support ACP uptake amongst the generable population. Yet, their potential for improving ACP uptake in LTC has yet to be examined. This study explored if available ACP tools are acceptable for use in LTC by (a) eliciting staff views on the content and format that would support ACP tool usability in LTC (b) examining if publicly available ACP tools include content identified as relevant by LTC home staff. Ultimately this study aimed to identify the potential for existing ACP tools to improve ACP engagement in LTC. Methods: A combination of focus group deliberations with LTC home staff (N = 32) and content analysis of publicly available ACP tools (N = 32) were used to meet the study aims. Results: Focus group deliberations suggested that publicly available ACP tools may be acceptable for use in LTC if the tools include psychosocial elements and paper-based versions exist. Content analysis of available paper-based tools revealed that only a handful of ACP tools (32/611, 5%) include psychosocial content, with most encouraging psychosocially-oriented reflections (30/32, 84%), and far fewer providing direction around other elements of ACP such as communicating psychosocial preferences (14/32, 44%) or transforming preferences into a documented plan (7/32, 22%). Conclusions: ACP tools that include psychosocial content may improve ACP uptake in LTC because they elicit future care issues considered pertinent and can be supported by a range of clinical and non-clinical staff. To increase usability and engagement ACP tools may require infusion of scenarios pertinent to frail older persons, and a better balance between psychosocial content that elicits reflections and psychosocial content that supports communication. [ABSTRACT FROM AUTHOR]

Purpose: Many individual and family hardships are associated with poorly understood palliative care needs arising from advanced dementia within India. The purpose of this paper is to explore the experiences of people in India affected by advanced dementia and to shape educational approaches for practitioners and the local community. Design/methodology/approach: Three focus groups with family carers of people (n = 27) with advanced dementia were undertaken with local communities in South India. One focus group was carried out in English and two in the local language (Kannada) and translated to English. Findings: The findings of the focus groups are presented in four themes, conditions of caring, intersecting vulnerabilities, desperate acts of care and awareness of education and training needs. These themes highlight the challenges faced by family carers of people with advanced dementia and describe the potential harm, abuse and poor mental well-being facing both the person with dementia and the family carer as a result of their situation. Research limitations/implications: There is a need to explore ways to ensure inclusivity and sensitivity in the research process and enable equal participation from all participants. Practical implications: The findings highlight a lack of support for family carers of people with advanced dementia and demonstrate the need for dementia-specific integrated and palliative care approaches in India. Originality/value: This paper provides insight into the experiences and challenges facing family caregivers of people living with advanced dementia in India to shape practitioner education in a way that will underpin effective dementia-specific palliation and integrated services. [ABSTRACT FROM AUTHOR]

Background: Use of electronic patient-reported outcomes (ePROs) in routine cancer care can help identify troublesome symptoms and facilitate discussions between patients and clinicians and has been shown to improve patient satisfaction, quality of life, and survival.Methods: Eighty patients with stage IV non-hematologic malignancies on chemotherapy participated. Patient-Reported Symptom Monitoring (PRSM) surveys were sent every 14 days via the Epic MyChart system over a 12-week period. Surveys were offered via phone or paper if patients failed to complete the automated MyChart survey by day 16. Severe symptoms or concerning symptom trends were automatically highlighted in reports for clinic staff. Patients reporting severe symptoms were routed to oncology nursing triage for standard symptom care management.Results: Two hundred seventy-one surveys were sent during the 12-week study period. One hundred eighty-three surveys (66%) were completed, with 68% completed electronically via MyChart, 25% by paper, and 7% by phone call from a research coordinator. At least one severe symptom was reported on 36% of all surveys. However, most severe symptoms did not result in urgent triage follow-up because they were already being addressed and/or patients felt they were manageable. Patients and clinicians generally said the ePRO was efficient and helpful for addressing distressing symptoms and would use it in routine oncology care.Conclusion: ePROs can be integrated into the electronic health record using the Epic MyChart system. Patients and clinicians gave positive feedback on the system. Monitoring symptoms in real time may soon become part of standard oncology practice and requires seamless methods for collection. [ABSTRACT FROM AUTHOR]

Background: Despite being a terminal neurodegenerative disease, the role of palliative care is less recognised for motor neurone disease than for other life-limiting conditions. Understanding the experiences of, and need for, palliative care for patients and carers is key to configuring optimal policy and healthcare services. Aim: To explore the experiences of, and need for, palliative care of people with motor neurone disease and their informal carers across the disease trajectory. Design: A systematic review of qualitative research conducted using Thematic Synthesis – PROSPERO registration CRD42017075311. Data Sources: Four electronic databases were searched (MEDLINE, CINAHL, PsycINFO, Social Science Citation Index) using terms for motor neurone disease, amyotrophic lateral sclerosis, palliative care, and qualitative research, from inception to November 2018. Included papers were data extracted and assessed for quality. Results: A total of 41 papers were included, representing the experiences of 358 people with motor neurone disease and 369 caregivers. Analytical themes were developed detailing patients' and carers' experiences of living with motor neurone disease and of palliative care through its trajectory including response to diagnosis, maintaining control, decision-making during deterioration, engaging with professionals, planning for end-of-life care, bereavement. Conclusion: The review identified a considerable literature exploring the care needs of people with motor neurone disease and their carers; however, descriptions of palliative care were associated with the last days of life. Across the disease trajectory, clear points were identified where palliative care input could enhance patient and carer experience of the disease, particularly at times of significant physical change. [ABSTRACT FROM AUTHOR]

Background: Informal caregivers represent the foundation of the palliative care workforce and are the main providers of end of life care. Financial pressures are among the most serious concerns for many carers and the financial burden of end of life caregiving can be substantial. Methods: The aim of this critical debate paper was to review and critique some of the key evidence on the financial costs of informal caregiving and describe how these costs represent an equity issue in palliative care. Results: The financial costs of informal caregiving at the end of life can be significant and include carer time costs, out of pocket costs and employment related costs. Financial burden is associated with a range of negative outcomes for both patient and carer. Evidence suggests that the financial costs of caring are not distributed equitably. Sources of inequity are reflective of those influencing access to specialist palliative care and include diagnosis (cancer vs non-cancer), socio-economic status, gender, cultural and ethnic identity, and employment status. Effects of intersectionality and the cumulative effect of multiple risk factors are also a consideration. Conclusions: Various groups of informal end of life carers are systematically disadvantaged financially. Addressing these, and other, determinants of end of life care is central to a public health approach to palliative care that fully recognises the value of carers. Further research exploring these areas of inequity in more depth and gaining a more detailed understanding of what influences financial burden is required to take the next steps towards meeting this aspiration. We will address the conclusions and recommendations we have made in this paper through the work of our recently established European Association of Palliative Care (EAPC) Taskforce on the financial costs of family caregiving. [ABSTRACT FROM AUTHOR]

Background: Volunteers make a major contribution to palliative care but little is known specifically about hospital palliative care volunteers. Aim: The aim of this study was to understand the role and experience of hospital palliative care volunteers. Design: Systematic review and narrative synthesis. Data sources: CINAHL, Embase, Medline, PsycINFO, PubMed and three dissertation databases were searched from inception to June 2019. A forward and backward search of included papers in key journals was also undertaken. Records were independently assessed against inclusion criteria by authors. Included papers were assessed for quality, but none were excluded. Results: In total, 14 papers were included. Hospital palliative care volunteers were mostly female, aged above 40 years, and training varied considerably. Volunteers faced unique challenges in supporting dying patients due to the nature of hospital care, rapid patient turnover and the once-off nature of support. Volunteer roles were diverse, with some providing hands-on care, but most focused on 'being with' the dying patient. Volunteers were appreciated for providing psychosocial support, seen as complementary to, rather than replacing the work of health professionals. Given volunteers were often required to work across multiple wards, establishing positive work relationships with health professionals was challenging. Divergent views about whether the volunteer was part of or external to the team impacted volunteers' experience and perceptions of the value of their contribution. Conclusion: Hospital palliative care volunteers face unique challenges in supporting terminally ill patients. Volunteer support in hospital settings is possible and appropriate, if sufficient support is available to mitigate the challenges associated with complex, high-acuity 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]

This paper explores one aspect of the operationalisation of a patient-centred ideology of care by examining an oncologist's answers to questions asked by her patient and his companion during a palliative oncology consultation and comparing her answers to the markedly different answers of another oncologist. Halliday's concept of register and Hasan's semantic networks are used to examine the oncologists' answers. Patients' questions create the semiotic environment for clinicians to provide the information patients need for informed decision-making -- an important aspect of patientcentredness. The answers clinicians provide construe their position towards this ideology of care. Findings suggest that one way patient-centredness can be operationalised, at the level of semantics, is through providing elaborated answers that explicitly display the reasoning employed by the oncologist. [ABSTRACT FROM AUTHOR]

Background: We have undertaken a systematically searched literature review using a realist logic of analysis to help synthesise the diverse range of literature available on hospice at home services. Aim: To find out in the existing literature what features of hospice at home models work best, for whom and under what circumstances. Design: A realist logic of analysis was applied to synthesise the evidence focusing on mechanisms by which an intervention worked (or did not work). An initial programme theory was developed using the National Association for Hospice at Home standards, Normalisation Process Theory and through refinement using stakeholder engagement. Data sources: PubMed, Science Direct, AMED, BNI, CINAHL, EMBASE, Health Business Elite, HMIC, Medline, PsychINFO, SCOPUS, Web of Science, DARE, Google Scholar, NHS Evidence, NIHR CRN portfolio database, NIHR journal library of funded studies, including searches on websites of relevant professional bodies (August 2014, June 2017, June 2019). Results: Forty-nine papers were reviewed, of which 34 contributed evidence to at least one of the eight theory areas: marketing and referral, sustainable funding model, service responsiveness and availability, criteria for service admission, knowledge and skills of care providers, integration and coordination, anticipatory care, support directed at carers. Conclusions: Our literature review showed how it was possible to develop a coherent framework and test it against 34 published papers and abstracts. Central to this review was theory building, and as further evidence emerges, our programme theories can be refined and tested against any new empirical evidence. [ABSTRACT FROM AUTHOR]

Background: Palliative care provision is expanding in low and middle income countries. Services are developing in the Caribbean in response to the region's ageing population, the significant burden of cancer, non-communicable diseases and HIV/AIDS. Appraisal of the existing evidence on palliative care needs, models of care, interventions and outcomes in the Caribbean is essential to inform emerging practice and future research. Methods: Systematic review and narrative synthesis. Following implementation of a search strategy, titles, abstracts and full texts were screened. Data from nine studies were synthesized. The Qualsyst tools were used to assess the quality of quantitative and qualitative studies. Data were extracted into a common table, and themes were generated from the available peer review evidence using narrative synthesis. Results: Nine papers were retained for appraisal. Eight papers described palliative care needs in the Caribbean. The needs for analgesia, support for patients, education and training of staff in palliative care and palliative care services were identified in the literature. Models of care for palliative care in the Caribbean were not described in great depth (n = 2 papers) and no intervention studies were found. Outcomes of palliative care such as quality of life, quality of care, and patient's preferred place of care and death were identified from six papers. Quantitative methodology was used in seven of the nine papers in this review. One paper used a mixed methodology design, and one a qualitative approach. Conclusions: Research from the Caribbean highlights the need for health care policy, training of staff, education, and access to analgesia and palliative care support services in this region. This sparse evidence must be taken into consideration with cultural beliefs and preferences of the Caribbean population in order to achieve improved outcomes for patients, their caregivers and health care professionals. This underscores the importance for more research in the field of palliative care in the Caribbean. [ABSTRACT FROM AUTHOR]

Aims and objectives To present the findings of an integrative literature review of the evidence for the clinical management of delirium in patients with advanced cancer. Background Patients with advanced cancer frequently experience delirium which can be distressing for both patients and their families. Current guidelines recommend that underlying causes of the delirium be addressed and a course of antipsychotics considered. However, the research into the effectiveness of treatments for delirium in people with advanced cancer is limited. Design Integrative literature review. Data sources Systematic searches of the MEDLINE, CINAHL, ProQuest Nursing and Allied Health and PsychInfo databases were conducted in April 2016 to include papers published in 2000 and later. The returns were screened using inclusion and exclusion criteria, and the seven studies found to be suitable were subject to review. Review methods Findings of the seven papers were extracted, appraised critically and reviewed using a narrative approach. Results A number of interventions, including the use of atypical antipsychotics, opioid rotation, methylphenidate hydrochloride and coeliac plexus block, were reported; however, there was limited evidence of their effectiveness. One study reported the use of exercise therapy as a nonpharmacological intervention. Conclusion A variety of interventions to treat delirium in patients with advanced cancer have been tested through nonblinded, nonrandomised trials which have not produced a clear evidence base for practice. Relevance to clinical practice The clinical management of delirium in patients with advanced cancer is poorly understood and remains a clinical issue which requires further research (particularity randomized control trials) in order to determine more effective treatments and management strategies. [ABSTRACT FROM AUTHOR]

Summary: Calciphylaxis is associated with significant morbidity and mortality. Palliative care (PC) is a subspecialty that treats the pain and stress of serious illness. To assess whether the role of quality of life (QoL) indices, patient‐reported outcome measures and PC have been studied in patients with calciphylaxis, we performed a systematic literature review. Several databases were searched from inception to October 2016 according to modified Preferred Reporting Items for Systematic Reviews and Meta‐Analyses criteria. We searched for papers on calciphylaxis that mentioned the symptoms and supportive needs of patients, QoL or outcome measures to report symptom severity, and the involvement of PC. Twelve papers met the inclusion criteria. Reported patient symptoms included pain, skin lesion resolution and pruritus, with the first being the most frequently reported. Four papers measured pain using a previously verified patient‐reported outcome measure, including the Visual Analogue Scale. One paper used a verified QoL measure, the Dermatology Quality of Life Index. No tool was used consistently. Eight papers reported the use of hospice care or PC in the treatment of calciphylaxis. No outcome measure was used to prompt PC involvement. Overall, QoL indices, patient‐reported outcome measures and PC are underreported in the treatment of calciphylaxis. PC may be a resource to assist in symptom management and adaptive coping strategies for patients from the onset of disease. [ABSTRACT FROM AUTHOR]

Background: There is an increasing demand for mental health support in primary care, especially for young people. To improve mental health support for young people in general practice, the needs of young people must be considered.Aim: To explore the experiences of young people (aged 12-25 years) on receiving mental health care in primary care and identify the needs of young people who present with mental health concerns.Design and Setting: A systematic review and narrative synthesis.Method: This was a systematic review and narrative synthesis. Six databases were searched for literature relating to young people's experiences of receiving mental health care in primary care. Additional handsearching and manual internet searching were conducted. Narrative synthesis was employed.Results: Five papers and a further two reports from manual internet searching were found, resulting in the inclusion of 1823 young people from four different countries (UK, US, Ireland, and Canada) for synthesis. The synthesis generated four themes: the centrality of a trusting relationship; showing empathy and taking concerns seriously; being given time to talk; and barriers to accessing mental health support in primary care.Conclusion: Young people need a trusting relationship to discuss sensitive issues. To enable high-quality and effective mental health consultations with young people and the development of trust, GPs require unhurried consultations and the ability to maintain continuity of care. [ABSTRACT FROM AUTHOR]

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

Background: Innovative small-scale facilities for dementia focus on providing quality of life and maintaining the functional abilities of residents while offering residents a home for life. To fulfill the home-for-life principle, palliative care approaches are necessary to maintain quality of life in these facilities. Few studies have reported on how palliative care is provided to residents in small-scale facilities. The aim of our review is to determine the extent to which palliative care approaches are reported in small-scale facilities. Methods: A scoping review of the literature using recommended methods from the Joanna Briggs Institute. Four databases, CINAHL, PubMed, PsycINFO, and Web of Science, were searched for studies published from 1995 to 2023. One reviewer completed the title, abstract and full-text screening and data extraction; two additional team members piloted the screening and extraction process and met with the main reviewer to make decisions about article inclusion and ensure consistency and accuracy in the review process. The extracted data was open-coded and analyzed using thematic analysis. The data was then synthesized into themes using palliative care domains for dementia. Results: Of the 800 articles obtained in the search, only ten met the inclusion criteria: six from Japan, two from the Netherlands, and one each from Austria and the United States. In most small-scale facilities, palliative care is important, with facilities prioritizing family involvement and person-centred care, minimizing resident discomfort and enhancing residents' remaining abilities until the end of life. The included studies did not discuss palliative care policies or professional staff training in depth. Conclusions: This study provides an overview of the literature on palliative care in small-scale facilities for individuals with dementia. Most facilities focus on residents' wishes at the end of life to enhance comfort and provide a home-like environment. However, more research is needed to further understand the quality of palliative care approaches in these homes. [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]

Inequities and gaps in palliative care access are a serious impediment to health systems especially in low- and middle-income countries and the accurate measurement of need across health conditions is a critical step to understanding and addressing the issue. Serious Health-related Suffering (SHS) is a novel methodology to measure the palliative care need and was originally developed by The Lancet Commission on Global Access to Palliative Care and Pain Relief. In 2015, the first iteration – SHS 1.0 – was estimated at over 61 million people worldwide experiencing at least 6 billion days of SHS annually as a result of life-limiting and life-threatening conditions. In this paper, an updated methodology - SHS 2.0 - is presented building on the work of the Lancet Commission and detailing calculations, data requirements, limitations, and assumptions. The updates to the original methodology focus on measuring the number of people who die with (decedents) or live with (non-decedents) SHS in a given year to assess the number of people in need of palliative care across health conditions and populations. Detail on the methodology for measuring the number of days of SHS that was pioneered by the Lancet Commission, is also shared, as this second measure is essential for determining the health system responses that are necessary to address palliative care need and must be a priority for future methodological work on SHS. The methodology encompasses opportunities for applying SHS to future policy making assessment of future research priorities particularly in light of the dearth of data from low- and middle-income countries, and sharing of directions for future work to develop SHS 3.0. [ABSTRACT FROM AUTHOR]

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

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

Background: This integrative review explores the use of digital health technologies in palliative care within Southeast Asia. Despite extensive documentation of digital health in palliative care in Western nations, its application in Southeast Asia remains underdeveloped. Method: The review includes a total of four papers meeting the eligibility criteria. Findings: The findings reveal limited studies of digital health adoption in palliative care. Key technologies include mobile health applications, electronic health records and telemedicine platforms. Challenges, such as health inequities, data security and the need for technology validation were identified. The review underscores the necessity for region-specific research to address these challenges and improve the integration of digital health in palliative care. Conclusion: This study highlights the potential of digital health to enhance palliative care delivery and patient outcomes in Southeast Asia, advocating for increased adoption and tailored implementation strategies. [ABSTRACT FROM AUTHOR]

Palliative care in the field of urology has largely been limited to adult oncologic conditions. Although there is a plethora of established literature suggesting the advantageous impact of palliative care, there is limited integration of palliative care in adult urology. This underutilization is further exacerbated in pediatric urology, and palliative care in pediatric urology remains an underexplored area despite the prevalence of several life-limiting conditions in this patient population. This paper highlights the potential need for palliative care intervention in a variety of urologic conditions in the pediatric population, including congenital lower urinary tract obstruction, neurogenic bladder dysfunction, exstrophy-epispadias complex, and congenital bilateral renal agenesis. Each condition poses unique challenges that can be addressed with the inclusion of a palliative care team, including decision-making spanning prenatal-neonatal-pediatric periods, acute and chronic symptom management, family relations, body image issues, risk of recurrent hospitalizations and surgeries, and potentially fatal complications. Alongside standard urologic interventions, palliative care can serve as an additional means of addressing physical and psychosocial symptoms experienced by pediatric urology patients to enhance the quality of life of patients and their families. [ABSTRACT FROM AUTHOR]

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

Pediatric psychologists possess unique expertise to positively impact the care provided to children with serious illness and their families. Despite increasing recognition regarding the value of psychology in palliative care, psychologists are not yet routinely integrated into pediatric palliative care (PPC) teams. This special paper seeks to demonstrate distinctive contributions psychologists can offer to PPC teams, patients, and families, as well as highlight how psychologists enhance the work of their interdisciplinary PPC colleagues. Existing literature, consensus and policy statements, and recently developed competencies inform and provide evidence for the value of incorporating psychologists into PPC. As children with serious illness are at risk for mental and physical health symptoms, psychologists' specialized training in evidence-based assessment and intervention allows them to assess areas of concern, create treatment plans, and implement nonpharmacological therapies targeting symptom management and promotion of quality of life. By improving patient and family outcomes, psychology involvement saves money. In addition to clinical care, psychologists are skilled researchers, which can help to advance PPC interdisciplinary research. Lastly, psychologists can play a valuable role in contributing to PPC team education, dynamics, and well-being. With strong skills in research, clinical care, education, and advocacy, pediatric psychologists are exceptionally equipped to provide care to children with serious illness and their families. Given their unique contributions, it is critical future efforts are directed towards advocating for the inclusion of psychologists into PPC, with the ultimate goal of improving care for children with serious illness and their families. [ABSTRACT FROM AUTHOR]

The authors comment on the increase in eligibility criteria for physician-assisted suicide (PAS) or euthanasia under jurisdiction in the U.S. Topics discussed include the controversy surrounding PAS, arguments by proponents about PAS, the expansion of this eligibility criteria in other countries, the introduction of California Senate Bill 1196, and example of cases of PAS in Colorado.

Background: Ureteral metastasis from gastric cancers are rare and can be a cause of ureteral obstruction. There have been few published case reports in the literature. In this paper, we report an additional case and a review of the literature of all the previous reported cases. Case presentation: A 67 years old North African women who was treated four years before for a gastric adenocarcinoma, presented with abdominal pain. Imaging and endoscopy showed a mural stenosis of the left ureter, without any other abnormality. Histopathology confirmed the gastric origin of the metastasis. A palliative chemotherapy was foreseen, but due to the deterioration of the general condition of the patient, she received palliative care. We have also reviewed the literature and reported the previously published cases of ureteral metastasis from gastric cancer. Conclusions: It is worth recalling that in a context of neoplasia and with the presence of signs of ureteral obstruction, it is important to keep in mind the possibility of a ureteral metastasis. [ABSTRACT FROM AUTHOR]

Background: In 2016 a French law created a new right for end-of-life patients: deep and continuous sedation maintained until death, with discontinuation of all treatments sustaining life such as artificial nutrition and hydration. It was totally unprecedented that nutrition and hydration were explicitly defined in France as sustaining life treatments, and remains a specificity of this law. End- of-life practices raise ethical and practical issues, especially in Europe actually. We aimed to know how oncology professionals deal with the law, their opinion and experience and their perception. Methods: Online mono-centric survey with closed-ended and open-ended questions in a Cancer Comprehensive Centre was elaborated. It was built during workshops of the ethics committee of the Institute, whose president is an oncologist with a doctoral degree in medical ethics. 58 oncologists and 121 nurses—all professionals of oncological departments -, received it, three times, as mail, with an information letter. Results: 63/ 179 professionals answered the questionnaire (35%). Conducting end-of-life discussions and advanced care planning were reported by 46/63 professionals. In the last three months, 18 doctors and 7 nurses faced a request for a deep and continuous sedation maintained until death, in response to physical or existential refractory suffering. Artificial nutrition and even more hydration were not uniformly considered as treatment. Evaluation of the prognosis, crucial to decide a deep and continuous sedation maintained until death, appears to be very difficult and various, between hours and few weeks. Half of respondents were concerned that this practice could lead to or hide euthanasia practices, whereas for the other half, this new law formalised practices necessary for the quality of palliative care at the end-of-life. Conclusion: Most respondents support the implementation of deep and continuous sedation maintained until death in routine end-of-life care. Nevertheless, difficulty to stop hydration, confusion with euthanasia practices, ethical debates it provokes and the risk of misunderstanding within teams and with families are significant. This is certainly shared by other teams. This could lead to a multi-centric survey and if confirmed might be reported to the legislator. Key messages: What is already known about the topic? Studies have explored the ethics of choices, such as withholding or withdrawing treatments, moral positions to euthanasia, sedation practices or evaluation of end-of-life prognosis, but none have explored, in real life, health care professionals' opinion and experience of all these aspects combined, in palliative cancer care. What this paper adds: This study highlights the discrepancy between some elements of the law and opinions of carers, along with the risk of conflict within teams and with families. It also highlights the risk of drifting towards euthanasia. Implications for practice, theory or policy: this study could lead to a multi-centric national study and could, if confirmed, add the voice of professionals to the ethical debate on end-of-life practices in France, which could be reported to the legislator. It could also lead colleagues of abroad to analyse practices in regard of their national laws on end-of-life. [ABSTRACT FROM AUTHOR]

This serves as a white paper by the North American Neuroendocrine Tumor Society (NANETS) on the practical considerations when providing palliative care to patients with neuroendocrine tumors in the context of routine disease management or hospice care. The authors involved in the development of this manuscript represent a multidisciplinary team of patient advocacy, palliative care, and hospice care practitioners, endocrinologist, and oncologists who performed a literature review and provided expert opinion on a series of questions often asked by our patients and patient car egivers affected by this disease. We hope this document serves as a starting point for oncologists, palliative care teams, hospice medical teams, insurers, drug manufacturers, caregivers, and patients to have a frank, well-informed discussion of what a patient needs to maximize the quality of life during a routine, disease-directed care as well as 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]

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Despite its scarcity, malignant tumor extending to the heart is a lethal condition. Cardiac metastases are considered to occur rarely. In the present paper, we represented a single-center experience in cardiac metastases diagnosis in addition to different treatment modalities for improving the patients' quality of life and survival. We could claim that this is the largest report of this kind to date. We retrospectively reviewed the patients' files in our hospital, from 2009 to 2022. These patients presented with radiological/ intraoperative evidence of intracardiac extension of malignant tumor. Seven patients with transvenous intracardiac tumor extension were referred to our center. There was primary tumor in the lung in four cases (57.14%), two with synovial sarcoma (14.3%), one with renal cell carcinoma with inferior vena cava extension to the right atrium, and one with osteosarcoma. Moreover, there was one case of thymic origin (14.3%). Four patients underwent urgent surgery upon diagnosis, in order to have higher quality of life, and R0 resection which was not possible in any of them (two patients had R1 and two had R2). Among them, one received palliative chemotherapy followed by chemoradiation after debulking surgery, one received concurrent chemoradiotherapy, one received palliative chemotherapy only, and one refused to get any treatment. Survival was better in the patients who received concurrent chemoradiotherapy. According to our results, urgent/unplanned surgery could not be a good candidate for intracardiac extension of malignant tumors and does not improve survival. Combined multidisciplinary approach, on the other hand, was found to be a better option for disease control. [ABSTRACT FROM AUTHOR]

Frontotemporal disorders are a group of rare young-onset dementias for which there is no cure, nor is there any way to slow the underlying progressive brain degeneration. To date those affected have typically received very little, if any, follow-up care after diagnosis, particularly in the early stages of their disease. I have received a clinical diagnosis, supported by imaging, of primary progressive aphasia, a form of frontotemporal degeneration characterized in the initial phase by progressive impairment of language ability. From the onset, I have been fortunate to receive excellent ongoing palliative care from a multidisciplinary team, some of whom had never previously seen anyone with this disorder. My quality of life has been enhanced by an evolving range of creative strategies and adaptations targeted to my deficits as they have arisen. In this paper, I discuss my experience of the process underlying this personalized plan, which serves as a paradigm for the development of novel palliative care approaches for people living with rare disorders, both neurodegenerative diseases and other conditions. [ABSTRACT FROM AUTHOR]

Although the progressive clinical trajectory of motor neurone disease (MND) is widely understood, multiple challenges remain preventing optimal end-of-life care for this population with unique needs from the patient, carer and service provider perspectives. This paper reports on the experiences, gaps in service and unmet needs of MND patients and family carers and explores public health palliative care approaches that would facilitate coordinated and integrated care to respond to their changing needs. This is a qualitative study of responses to questions in an online consumer survey (353 respondents) in Western Australia (2020), focusing on a subset of 29 current and bereaved carers of people with MND who have used health services in the last five years. The analysis identified themes, highlighting the insufficient integration of services across health and social care; poor and unequal access to coordinated palliative care; significant gaps in the knowledge base of the workforce and a failure to meet the consumer expectations of person-centred care. For palliative care to be accessible to those living with MND and other under-served conditions, there needs to be a shift to more comprehensive, inclusive and sustainable options, such as the public health approach to palliative/end-of-life care that engages the assets of local communities in partnership with health services, one example being the "Compassionate Communities Connectors" model of care. Further considerations include advocacy for policy changes, fostering partnerships and developing indicators for evaluating the impact of the proposed models of care. The end result is not only better care but substantial savings for the health system. [ABSTRACT FROM AUTHOR]

There are access, treatment and morbidity inequities for Māori (Indigenous people of New Zealand) with cancer in Aotearoa (New Zealand). This includes inequities in quality of life and experiences of the palliative care setting for Māori. This review included 20 papers that were identified through a combination of our literature review and key informant surveys. In this review, we consider the context of palliative care and cancer quality of care for Māori, draw on evidence regarding access and challenges for Māori with cancer in the palliative setting and discuss how to achieve palliative care equity for Māori with cancer. In Aotearoa, palliative care has fundamental underpinnings based on westernised understandings of health with a focus on addressing physical health aspects. Our findings highlight the misalignment of this approach with regard to Māori with cancer in the palliative care setting and to being able to fulfil their right to good health. [ABSTRACT FROM AUTHOR]

Background: The SARS-Cov-2 (COVID-19) pandemic affected the delivery of health and social care services globally. However, little is known about how palliative care social work services were impacted. Aim: The aim of this study was to capture and analyse data from palliative care social workers who provided professional support in a range of settings across 21 countries during the COVID-19 pandemic. Design: A cross-sectional survey-based design was used for this empirical study and this paper primarily focuses on the quantitative responses. Setting/participants: Participants, palliative care social workers, were drawn internationally via members of the EAPC Social Work Task Force and the World Hospice Palliative Care Social Work network. Results: We received 362 survey responses from 21 countries. Most (79%) respondents worked with adults in in-patient units or hospitals. The number of referrals during COVID-19 increased more in non-European countries, compared to European countries. The full range of social work services could no longer be delivered, existing services changed and 65.3% of participants reported higher levels of pressure during the pandemic, which was linked to higher levels of staff absence and additional duties. For many respondents (40.8%), this included facilitating online communication between patients and their families. Conclusions: Our findings indicate that restrictions to limit the spread of COVID-19 resulted in adaptations to service delivery, increased pressure on staff and moral distress, like other health and social care professions. All members of the palliative team need support and supervision to ensure effective interdisciplinary working and team cohesion. [ABSTRACT FROM AUTHOR]