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Caring for psychiatrically healthy individuals at the end of life is typically emotionally taxing and burdensome. Caring for individuals with psychiatric disorders at the end of life is often considerably [...]

Context: Health inequities exist across the healthcare continuum, significantly impacting 2SLGBTQIA + individuals. Palliative care presents unique challenges for sexual and gender minorities due to socio-cultural, psychological, and systemic barriers. The objective of this scoping review was to synthesize existing research on palliative care use among 2SLGBTQIA + individuals and identify common themes in the literature. Methods: A literature review was conducted, focusing on articles published between 2010 and 2023 from the PubMed and CINAHL databases. Arksey and O'Malley's methodological framework for scoping reviews was applied to guide the review process. Results: A total of 31 studies were identified. A significant portion of the research originated in North America, with little research from outside the USA. Palliative care and end-of-life care were most used to describe care, though these terms were often not clearly defined. All studies included a focus on sexual and gender minorities, but there was considerable variation in the terminology used and a noticeable paucity of literature specifically addressing the needs of transgender and gender non-conforming individuals, or use of an intersectional approach in analysis. Key themes identified in the literature include discrimination in palliative care settings, disenfranchised grief experienced by care partners, and a lack of training in palliative care settings concerning the unique needs of 2SLGBTQIA + people utilizing palliative care services. Conclusions: People identifying as 2SLGBTQIA + experience unique inequities in accessing and using palliative care services. To address these challenges, future initiatives should focus on developing identity-affirming palliative care settings, enhancing respect and support for care partners and found family, and ensuring healthcare providers are properly educated to provide care to this community. Future research is also needed that considers more diverse samples, as well as the impact of intersecting identities on the specific needs and challenges they face at end-of-life. [ABSTRACT FROM AUTHOR]

Aim Methods Results Conclusions The aim of this study was to compare patients referred to our retrieval service who were palliated before transfer, versus those transferred who were palliated within 7 days of birth.We conducted a retrospective chart review of infants referred to our neonatal retrieval service between 1 December 2015 and 31 March 2022 who died during retrieval or within 7 days of referral. Demographic and clinical data were collected from the service database and electronic medical records.Data on 60 infants were analysed; 25 (42%) infants were not transported and were palliated at the referring hospital, 35 (58%) infants were transported and later palliated at the accepting hospital. The most common primary diagnoses were prematurity (42%) and hypoxemic ischemic encephalopathy (HIE) (42%). Infants palliated at the referring hospital were more likely than those transported and later palliated to require resuscitation including chest compressions (52% vs. 23%, P = 0.02), management for hypotension (72% vs. 20%, P < 0.001) and management for pneumothorax (28% vs. 0%, P = 0.001) and less likely to require management for seizures (8% vs. 43%, P = 0.003).Palliation at the referring hospital should be considered as an option when escalating care is predicted to not affect outcome. In this cohort the infants least likely to be transported required significant management during stabilisation. Determining the infants for whom transport is non‐beneficial remains difficult. [ABSTRACT FROM AUTHOR]

Background: In-center hemodialysis (IHD) is the most common dialysis modality. Assisted peritoneal dialysis (assPD) is an option for frail and/or incapacitated patients. Both modalities can be used to alleviate uremic symptoms towards the end of life. There are few studies comparing these modalities. The primary aim is to compare hospital admissions between assPD and IHD. The secondary aim is to compare continuation of the dialysis modality and patient survival. Methods: Patients > 65 years, registered in the Swedish Renal Registry (SRR) and starting dialysis 2010–2017 were eligible for inclusion. Patients starting on assPD were matched with patients starting on IHD according to sex, Charlson Index, age and date for start of dialysis. Data were collected from SRR and other registries. Results: During the first year, patients on assPD and IHD had in median one (IQR 0–5.0; 0–4.0) hospitalization (p = 0.412). There was no significant difference after two years, in the annual number of days admitted to hospital, in hospitalizations with cardiovascular or infectious disease diagnoses or continuation of the dialysis modality, respectively. However, patients on assPD had a worse median survival (1.1 years IQR 0.6–2.1; IHD 3.1 years IQR 0.2–5.8; p < 0.001). Conclusion: In this study patients starting assPD, often as a palliative treatment, showed no difference compared to IHD concerning the number of hospitalizations, number of days in hospital/year or continuation of the dialysis modality. Patients on assPD had a worse survival, which is likely due to residual confounding. Without that, patients on assPD would probably have lower number of hospitalizations. Despite limitations due to the retrospective observational design of the study, the results indicate that assPD is a feasible alternative to IHD when self-care dialysis is not possible and/or IHD too arduous. [ABSTRACT FROM AUTHOR]

Background: At present, there are no specific guidelines for the treatment of diabetes in palliative care in Norway. The aim of this study was therefore to explore healthcare professionals' experiences of providing palliative care to individuals with diabetes in specialist as well as primary care settings. Methods: We interviewed 12 healthcare professionals from two palliative care units in specialist healthcare, one hospice unit in a nursing home, and one dietary care unit providing counselling in the municipality in the eastern part of Norway. Thematic analysis was used to analyze the data. Results: Our analysis generated three main themes: 1) "Quality of life is the main focus", which showed that the healthcare professionals' main focus was on comforting patients through engagement and communication; 2) "An individualized approach", emphasizing that the treatment was tailored to the unique circumstances of each individual and considered factors such as life expectancy, difficult blood glucose control, and multidisciplinary collaboration, and 3) "Diabetes in the background", which highlighted that they had a modest focus on diabetes. Diabetes was seen as another aspect of health that they had to be aware of, but their limited knowledge of diabetes guidelines, technical tools, and treatment choices underscored that attentiveness to the diabetes treatment was not prominent. Conclusion: The findings show that a lack of guidelines allowed for diverse approaches to the treatment of patients with diabetes in palliative care. Attentiveness to diabetes was based on the individual healthcare professionals' experience and expertise, professional views, and the circumstances of each individual. [ABSTRACT FROM AUTHOR]

Background and aims: Relief of cholestasis in hilar cholangiocarcinoma is commonly undertaken in both curative and palliative treatment plans. There are numerous open questions with regard to the ideal biliary drainage strategy – including what constitutes clinical success (CS). In the existing data, curative patients and patients from the Western world are underrepresented. Patients and methods: We performed a retrospective analysis of patients with complex malignant hilar obstruction (Bismuth-Corlette II and higher) due to cholangiocarcinoma who underwent biliary drainage at a German referral center between 2010 and 2020. We aimed to define CS and complication rates and directly compare outcomes in curative and palliative patients. Results: 56 curative and 72 palliative patients underwent biliary drainage. In patients with curative intent, CS was achieved significantly more often regardless of what definition of CS was applied (e.g., total serum bilirubin (TSB) < 2 mg/dl: 66.1% vs. 27.8%, p = < 0.001, > 75% reduction of TSB: 57.1% vs. 29.2%, p = 0.003). This observation held true only when subgroups with the same Bismuth-Corlette stage were compared. Moreover, palliative patients experienced a significantly greater percentage of adverse events (33.3% vs. 12.5%, p = 0.01). Curative intent treatment and TSB at presentation were predictive factors of CS regardless of what definition of CS was applied. The observed CS rates are comparable to published studies involving curative patients, but inferior to reported CS rates in palliative series mostly from Asia. Conclusions: Biliary drainage in complex malignant hilar obstruction due to cholangiocarcinoma is more likely to be successful and less likely to cause adverse events in curative patients compared to palliative patients. [ABSTRACT FROM AUTHOR]

Background: This paper aimed to explore the palliative care (PC) needs and barriers to access among cancer patients in a rural region of North India with a high cancer burden. Methods: A Participatory action research (PAR) approach was employed. Situational assessment, community sensitization workshops (CSWs) and door-to-door surveys were planned, conducted and developed over three PAR cycles. A parallel convergent mixed-methods approach was adopted wherein the quantitative data from door-to-door surveys and qualitative data from CSWs and investigator field notes were collected and analyzed to provide a comprehensive understanding of PC needs and barriers to access. Descriptive statistics and thematic analysis were used. Results: A total of 27 CSWs involving 526 stakeholders were conducted. A total of 256 cancer patients were assessed for PC needs and symptom burden using the Supportive and Palliative Care Indicators (SPICT-4ALL) and the Edmonton Symptom Assessment System (ESAS) tool, respectively. Based on the SPICT assessment, all patients (n = 256) satisfied general and/or cancer-specific indicators for PC. The majority (56.6%) had ≥ one moderate-severe symptom, with the most common symptoms being tiredness, pain and loss of appetite. Analysis of qualitative findings generated three themes: unmet needs, burden of caregiving, and barriers and challenges. Cancer affected all domains of patients' and their families' lives, contributing to biopsychosocial suffering. Social stigma, discrimination, sympathizing attitudes and lack of emotional and material support contributed to psychosocial suffering among cancer patients and their caregivers. Lack of awareness, nearby healthcare facilities, transportation, essential medicines, trained manpower and education in PC, collusion, fear of social discrimination, faulty perceptions and misconceptions about cancer made access to PC difficult. Conclusions: The study emphasize the need for and provide a roadmap for developing context-specific and culturally appropriate CBPC services to address the identified challenges and needs. The findings point towards education of CHWs in PC; improving community awareness about cancer, PC, government support schemes; ensuring an uninterrupted supply of essential medicines; and developing active linkages within the community and with NGOs to address the financial, transportation, educational, vocational and other social needs as some of the strategies to ensure holistic CBPC services. Trial registration: Clinical Trial Registry of India (CTRI/2023/04/051357). [ABSTRACT FROM AUTHOR]

Background: Experiential learning holds high potential for medical students' education in palliative care. At RWTH Aachen University in Germany, medical students can participate in the course "The Patient as Teacher" offering a one-to-one exchange with a terminally ill patient over a period of several weeks complemented with four supervision sessions and writing of a reflective essay. The course had run from 2005 to 2020 before it was paused due to the Covid-19 pandemic. This study aimed to assess the course's value as a palliative care teaching tool by investigating students' motivation and experiences over the years 2005–2020. Methods: A stratified sample of 24 essays was taken from all submitted essays (n = 78), eight essays from the years 2005–2009, 2010–2014, and 2015–2020. Subsequently, a thematic analysis of the selected essays was conducted. Results: The students felt motivated by the opportunity to gain more experience in palliative care, to improve their communication skills and to decrease insecurities in interaction with terminally ill patients. They learned about the patient's biography and medical history, and encountered physical, psychological, social, and spiritual dimensions of living with a life-limiting disease. Moreover, they experienced relationship building and communication with a terminally ill patient outside their role as future doctors. Ultimately, they considered their participation as a beneficial experience on both a personal and professional level. Conclusions: The course "The Patient as Teacher" presents a valuable tool for experiential learning in palliative care, which has elicited an unceasingly positive response among the students who participated over the years. It has facilitated medical students in overcoming insecurities in dealing with terminally ill patients and supported them in further developing their professional identity. [ABSTRACT FROM AUTHOR]

Abstract\nPoints of interestPrevious research demonstrates that living in residential aged care (RAC) has negative effects on the wellbeing of younger people (<65 years). This research reports on the barriers and enablers to avoiding or leaving RAC for younger people in Australia who do not have access to individualised disability funding packages. Interviews and focus groups were conducted with 18 staff who worked in an Australia-wide Program supporting younger people, and 24 stakeholders. Participants reported barriers to avoiding or leaving RAC that included a lack of funding, lack of appropriate housing, lack of transitional and rehabilitation services, and the preferences of family members. Enablers included having help to navigate alternative options, and effective collaboration across services. Participants reported that some younger people wanted to remain in RAC because they had no other option, were hesitant of change, or felt safe there. Funding and housing are required, as well as long-term, complex case management.Barriers for younger people who do not have access to individualised funding packages leaving or avoiding residential aged care include lack of funding for services (including palliative care), as well as lack of housing and assistance to help with the move to community living. The preferences of family members can also present a barrier.Enablers to leaving or avoiding residential aged care include having help to navigate alternative options, and effective collaboration across services.Without change to policy and practice in Australia, younger people who do not have access to individualised funding packages will continue to face a poorly funded and complicated service system, leaving them with little hope of living outside of residential aged care.Funding and housing are required, as well as long-term, complex case management to support younger people to avoid or move out of residential aged care.Barriers for younger people who do not have access to individualised funding packages leaving or avoiding residential aged care include lack of funding for services (including palliative care), as well as lack of housing and assistance to help with the move to community living. The preferences of family members can also present a barrier.Enablers to leaving or avoiding residential aged care include having help to navigate alternative options, and effective collaboration across services.Without change to policy and practice in Australia, younger people who do not have access to individualised funding packages will continue to face a poorly funded and complicated service system, leaving them with little hope of living outside of residential aged care.Funding and housing are required, as well as long-term, complex case management to support younger people to avoid or move out of residential aged care. [ABSTRACT FROM AUTHOR]

Key Points: Question: Does early palliative care delivered via secure video vs in person have an equivalent effect on quality of life in patients with advanced lung cancer? Findings: In this randomized comparative effectiveness trial of 1250 adults with advanced lung cancer receiving care across 22 institutions in the US, patients assigned to receive early palliative care via video visits reported quality-of-life scores at week 24 that were equivalent to those assigned to in-person palliative care. Meaning: Findings underscore the potential to increase access to evidence-based early palliative care through telehealth delivery. Importance: Numerous studies show that early palliative care improves quality of life and other key outcomes in patients with advanced cancer and their caregivers, although most lack access to this evidence-based model of care. Objective: To evaluate whether delivering early palliative care via secure video vs in-person visits has an equivalent effect on quality of life in patients with advanced non–small cell lung cancer (NSCLC). Design, Setting, and Participants: Randomized, multisite, comparative effectiveness trial from June 14, 2018, to May 4, 2023, at 22 US cancer centers among 1250 patients within 12 weeks of diagnosis of advanced NSCLC and 548 caregivers. Intervention: Participants were randomized to meet with a specialty-trained palliative care clinician every 4 weeks either via video visit or in person in the outpatient clinic from the time of enrollment and throughout the course of disease. The video visit group had an initial in-person visit to establish rapport, followed by subsequent virtual visits. Main Outcomes and Measures: Equivalence of the effect of video visit vs in-person early palliative care on quality of life at week 24 per the Functional Assessment of Cancer Therapy-Lung questionnaire (equivalence margin of ±4 points; score range: 0-136, with higher scores indicating better quality of life). Participants completed study questionnaires at enrollment and at weeks 12, 24, 36, and 48. Results: By 24 weeks, participants (mean age, 65.5 years; 54.0% women; 82.7% White) had a mean of 4.7 (video) and 4.9 (in-person) early palliative care encounters. Patient-reported quality-of-life scores were equivalent between groups (video mean, 99.7 vs in-person mean, 97.7; difference, 2.0 [90% CI, 0.1-3.9]; P =.04 for equivalence). Rate of caregiver participation in visits was lower for video vs in-person early palliative care (36.6% vs 49.7%; P <.001). Study groups did not differ in caregiver quality of life, patient coping, or patient and caregiver satisfaction with care, mood symptoms, or prognostic perceptions. Conclusions and Relevance: The delivery of early palliative care virtually vs in person demonstrated equivalent effects on quality of life in patients with advanced NSCLC, underscoring the considerable potential for improving access to this evidence-based care model through telehealth delivery. Trial Registration: ClinicalTrials.gov Identifier: NCT03375489 This randomized, multisite, comparative effectiveness trial investigates whether early palliative care delivered via video or in-person visits demonstrated equivalent effects on quality of life for patients with advanced non–small cell lung cancer and their caregivers. [ABSTRACT FROM AUTHOR]

Background: Sleep disturbance is prevalent among cancer patients. The quantification of this sleep disturbance is missing, especially in palliative care settings. Aim: The aim of this study was to study the sleep patterns of the patients undergoing palliative chemotherapy and radiotherapy for head and neck cancer (HNC) using a Fitbit Charge 4 sleep-tracking device. Design: Prospective observational study. Setting: A total of 110 HNC patients undergoing palliative chemotherapy and radiotherapy at a tertiary care teaching hospital in Central India. Results: Forty-four percent of patients had a poor sleep score (less than 60). Average sleep duration was 218.66 ± 139.05 min; non-rapid eye movement (NREM) sleep duration 197.7 ± 115.91 (light NREM 171.36 ± 104 and deep NREM 23.36 ± 16.73); REM sleep duration was 30.44 ± 34.14 min. The Pittsburgh Sleep Quality Index was 10.23 ± 3.45, which indicated sleep deprivation over the past 1 month. Moderate levels of anxiety, depression, confusion, and distress existed in the cohort. Statistically significant but weak correlation existed between sleep score, anxiety, and depression. Strong correlation existed between distress score and sleep score. Confusion score did not have a significant correlation with sleep score. Conclusion: HNC patients in palliative care settings were chronically sleep deprived. Sleep architecture was also disturbed. Moderate levels of anxiety, depression, confusion, and distress existed in the studied cohort; these psychosocial disturbances had a weak correlation with the sleep score and are likely to be multifactorial. Trial registration: Institutional Ethics Committee number: IHEC-LOP/2020/IM0349. The study has been registered with clinical trial registry of India with registration number CTRI/2021/03/032400 (http://www.ctri.in). [ABSTRACT FROM AUTHOR]

Background: As a result of the COVID-19 pandemic, we implemented a novel nurse-led symptom monitoring and virtual telehealth program for patients with advanced cancer on palliative care. Aims: To evaluate the reach, effectiveness, adoption, implementation, maintenance and acceptability of our program. Methods: This was a prospective study carried out in a cohort of patients with advanced cancer over the period of 3rd June 2020 to 22nd October 2021. Demographic characteristics, cancer diagnosis, and functional status of patients were collected upon recruitment. Patients were asked to complete a patient-reported outcome measure (the Integrated Palliative Care Outcome Scale, IPOS) prior to the first palliative care consult and subsequently every week for the duration of their participation in the program (12 weeks). The IPOS measures the severity of physical symptoms, emotional concerns, information, and financial needs. Participants' utilization of healthcare services by participants 3 months before, during and 3 months after the telemedicine program was reviewed. At the end of the program, a client satisfaction questionnaire (CSQ-4) to survey participants' experience with the telehealth program and their willingness to pay for this program was administered. Results: Reach: The recruitment to adoption ratio of the program was 0.71. Acceptability:: Participants expressed satisfactory experience. Effectiveness: We noted that the severity of patients' symptoms and number of emergency department visits decreased over time with nurse support. Adoption: we received referrals from 23 oncologists, yielding an adoption rate of 70%. Implementation: Of the 99 patients recruited for the program, 88.9% of them managed to complete their initial video consults as planned. 16% of them failed to complete the program due to factors such as patient demising. Maintenance: The declining rate of IPOS completion throughout the study period (98.9% at week 1 to 60.8% at week 12) demonstrated the difficulties in sustaining regular administration of self-reported patient outcome measures. Conclusion: The telemedicine program was effective and acceptable. We noted challenges in sustaining the administration of patient reported outcome measures over time. Further studies on how we can improve the sustainability of symptom monitoring in a telehealth program for patients with advanced illnesses, under palliative care, should be conducted. [ABSTRACT FROM AUTHOR]

Background: The World Health Organization Astana Declaration of 2018 sees primary healthcare as key to universal health coverage and gives further support to the goal of building sustainable models of community palliative care. Yet evaluating the benefits of such models continues to pose methodological and conceptual challenges. Objective: To explore evaluation issues associated with a community-based palliative care approach in Kerala, India. Design: An illuminative case study using a rapid evaluation methodology. Methodology: Qualitative interviews, documentary analysis and observations of home care and community organising. Results: We appraise a community palliative care programme in Kerala, India, using three linked 'canvases' of enquiry: (1) 'complex' multi-factorial community-based interventions and implications for evaluation; (2) 'axiological' orientations that foreground values in any evaluation process and (3) the status of evaluative evidence in postcolonial contexts. Three values underpinning the care process were significant: heterogeneity, voice and decentralisation. We identify 'objects of interest' related to first-, second- and third-order outcomes: (1) individuals and organisations; (2) unintended targets outside the core domain and (3) indirect, distal effects within and outside the domain. Conclusion: We show how evaluation of palliative care in complex community circumstances can be successfully accomplished when attending to the significance of community care values. Plain language summary: Where are the values in evaluating palliative care? Learning from community-based palliative care provision The evaluation of any intervention or service will inevitably involve a series of decisions on what we measure, what criteria we use to judge whether the intervention has been successful (or not), what type of data we actually collect and what methods we use to do this. When evaluating a range of palliative care interventions, we suggest that these decisions have often been taken in a concealed way and tend to favour relatively narrow quantitative measures linked to end outcomes. Our paper reports on the evaluation of a community-based palliative care intervention on Kerala, India. In it, we suggest that such complex work requires a broader approach to evaluation that: makes the values being used to assess success explicit; draws on a range of data types; is interested in delivery processes; and places the voices of participants at the heart of the assessment. The paper concludes with some broader observations on how these principles might be applied more widely within palliative care. [ABSTRACT FROM AUTHOR]

Background: Past studies have shown mixed results on how gender and living with a spouse or partner impact advance care planning (ACP). Few if any have tested for the interaction between these two variables. Objective: We examined how gender and couple status interact to impact the use of ACP practices including written instructions, designating a durable power of attorney for healthcare (DPOAHC), and discussing one's decisions with others. Design: We used cross-sectional data taken from the Health and Retirement Study, a longitudinal study of adults over the age of 50 in the United States. Methods: Data are from 632 respondents who died between the 2016 core survey and the 2018 exit survey. Participants had completed the 2016 survey and had a proxy informant complete the 2018 exit survey after their death. Generalized linear mixed models were used to test for main effects and interactions. Results: Women were more likely than men to designate a DPOAHC and to discuss their wishes with others. Women living without a partner were more likely than men living without a partner and coupled households to discuss their wishes with family or others. Conclusion: Both gender and couple status are important variables associated with ACP practices. Healthcare providers may want to reach out to women living within a coupled household and men living without a partner to ensure that they know the benefits of ACP. Plain language summary: Are men and women living with a partner less likely to make plans for the type of medical treatment they prefer at the end of life? Why was the study done? To see if men and women living alone or with a partner were more likely to make plans for the type of medical treatment they preferred at the end of life. We examined whether they had written plans, designated someone to make decisions for them, or discussed their wishes with other family members or healthcare providers before they died. What did the researchers do? The research team used survey data from the Health and Retirement Study in the United States on 632 people who had completed a survey in 2016 and died within two years. A family member or friend completed a survey after the person's death reporting on their preferences for end-of-life medical care. What did the researchers find? Women were more likely than men to designate another person to make medical decisions for them and to discuss their wishes with others. Single women were more likely than single men and people living with a partner to discuss their wishes with family or others. What do the findings mean? Women living alone may be more likely to see the benefits of making their end-of-life medical care wishes known to others. Men living alone were the least likely to make their wishes known. Healthcare providers may want to keep these differences in mind when reaching out to patients to explain the benefits of making plans for medical treatments in the future. [ABSTRACT FROM AUTHOR]

Recent years have witnessed an unprecedented increase in the search for the use of psychedelics in improving physical and mental health. Anaesthesia has evolved since very early times, born from the need to eliminate pain and reduce suffering and there are reports of the use of anaesthetics to achieve mystical states since the nineteenth century. Nowadays, the renaissance of psychedelics in anaesthesia has been inspired by their potential in the treatment of chronic pain syndromes, palliative care and in the emergency department and pre‐hospital care with the administration of psychedelics in cases of ischaemia, given their potential in neuroprotection. Although there are already some published protocols for the administration of psychedelics in patients with mental illness, little has been addressed concerning non‐mental medical applications. In this sense, in patients with multiple comorbidities, functional limitations and polymedicated, the anaesthetist may play a fundamental role, not only in clinical practice, but also in translational research.This article focuses on the description of psychedelics, with a particular focus on dimethyltryptamine (DMT) and ayahuasca pharmacology, effects, safety and toxicity. A detailed description of the role of the anaesthetist in clinical and experimental research is provided, from participant's screening to preparation and dosing session, expected adverse effects and how to manage them, based on the protocol and standard procedures of a current study with neuroimaging during the psychedelic experience. Specific considerations regarding the management of psychedelic toxicity are also provided as well as future directions for safe psychedelic use in clinical practice. [ABSTRACT FROM AUTHOR]

Background: To ensure high-quality pediatric palliative care (PPC) and enable healthcare professionals (HCPs) to provide person-centered care for the individual child with a life-limiting or life-threatening illness and their family, the Individual Care Plan (ICP) for PPC was developed. However, in practice, the ICP for PPC is not used for all children in need of PPC. Insight into why, for which problem and for which children HCPs wish to use an ICP in PPC is therefore necessary to assure that the ICP can be fully implemented in practice. Methods: Two semi-structured focus group interviews were held with 15 experienced healthcare professionals in PPC. Data were thematically analyzed. Results: Participants wish to use an ICP to collaboratively establish a plan with parents for the current and future care and treatment of the child. By doing so, they hope to achieve coordination and continuity of care, to achieve shared decision-making, and to support parents and other healthcare professionals in the care of the child. Participants think the ICP could also be used in the care for children with complex chronic conditions. Conclusion: The purposes for which healthcare professionals wish to use an ICP in PPC are broader than the purpose for which the ICP for PPC was developed. Future research should focus on whether the use of an ICP in PPC practice can achieve these purposes. [ABSTRACT FROM AUTHOR]

Introduction: Chronic Obstructive Pulmonary Disease (COPD) profoundly affects physical, psychological, and social aspects of life, yet these issues often remain unaddressed. Patient-Reported Outcomes Measures (PROM) have the potential to address these issues by promoting person-centered communication. However, their impact in COPD practice remains uncertain. This study aimed to investigate how patients with COPD perceive the usefulness of a new holistic PROM for general palliative care (PRO-Pall) before and during outpatient consultations. Methods: Semi-structured telephone interviews were conducted with patients diagnosed with moderate to very severe COPD, 2-5 days after consultation at a respiratory outpatient clinic in Denmark. Interviews were transcribed verbatim and analyzed inductively using qualitative content analysis. Results: Nine patients (five males; mean age: 66 years) participated in the study with four themes emerging: (1) Unlocking thoughts: Completing PRO-Pall stimulated patients' self-reflection, which revealed previously overlooked COPD-related issues, particularly psychosocial challenges. (2) Unmasking concerns: Patients felt encouraged to be honest, rather than concealing their concerns. (3) Breaking the ice: PRO-Pall responses enabled direct questioning by healthcare professionals during consultations, initiating discussions on patients' sensitive yet vital COPD-related matters. (4) Deepening the dialogue: Healthcare professionals' targeted and attentive approach fostered more holistic and meaningful discussions, providing most patients with a deeper understanding of psychosocial issues affecting their well-being. Conclusion: Completing PRO-Pall prior to outpatient consultations prompted most patients with COPD to unveil previously unacknowledged psychosocial challenges. During consultations, addressing these challenges initiated open discussions on individual concerns, enhancing most patients' understanding of the multifaceted burden of COPD. [ABSTRACT FROM AUTHOR]

Background: When it comes to women with malignant gynecological tumor diagnosis, ovarian cancer (OC) is the most prevalent cause of death. Generally, it ranks as the fifth most common cause of mortality for females. Objectives: The present study aimed to study the epidemiological characteristics and treatment outcomes of OC cases in the Clinical Oncology and Nuclear Medicine Department at Zagazig University Hospitals. Methods: This retrospective cohort study targeted seven years from January 2015 to December 2021 and was conducted on 160 medical files of patients with OC from the Clinical Oncology and Nuclear Medicine Department, Zagazig University hospitals. The data of pathological and epidemiological characters and their outcomes were studied. Results: 66.9% of the studied patients had surgery upfront. The most frequent surgery types were TAH + BSO + Surgical staging (38.3%), TAH+BSO (29.4%), and Fertility-sparing surgery was reported in 7.9% of the cases. Regarding primary chemotherapy (95.6%) of patients had Primary chemotherapy as follows (2.5%) Neoadjuvant treatment only, (45%) Adjuvant only, (23.7%) had neoadjuvant and adjuvant, (4.4%) Definitive, and (20%) Palliative treatment. Regarding Hormonal treatment; (6.9%) of patients had Hormonal treatment as follows (1.9%) Adjuvant, (1.3%) Definitive, and (3.7%) salvage for Recurrence. There was a highly significant decrease in all Survival parameters (Local recurrence Free Survival, Regional recurrence Free Survival, Distant metastasis Free Survival, Disease-Free Survival, Progression Free Survival, and Overall survival) as regards an increase in age, Advanced disease & stage and ECOG PS 3, increase in Stage, and Epithelial tumors (p < 0.01 respectively). The mean survival time (MST) was significantly reduced in the advanced disease group compared to other clinical presentation groups. MST was significantly reduced in the ECOG-3 group compared to other ECOG PS groups. MST was significantly reduced in the distant metastasis group compared to other extension of disease groups. MST was significantly reduced in the stage IV group compared to other histopathology stage groups. MST was significantly reduced in the serious adverse effects group compared to the no serious adverse effects group. Conclusion: This study demonstrates that age as an important epidemiological factor, histopathological finding assessment, surgical status, radiological, location, grading, tumor morphology, treatment, outcome, recurrence of tumor, disease-free survival, and overall survival that was collected from patient archives in Clinical Oncology and nuclear medicine department in Zagazig University Hospitals. Therefore, this data can provide preliminary information for upcoming research. [ABSTRACT FROM AUTHOR]

Although the focus in the last decades has been on the overdiagnosis of incidentally detected thyroid carcinomas in early stages, the other extreme of the disease is represented by locally advanced tumors with the invasion of neighboring structures. These are infrequent tumors, but they have a high complexity and a poor prognosis. In the absence of effective therapies allowing preoperative tumor reduction, in order to achieve a more restricted surgery, treatment was limited to aggressive surgery with resection of the aerodigestive tract and major vascular structures or palliative treatment. However, due to the increased knowledge of tumor biology and the results that tyrosine kinase inhibitors have achieved in the treatment of radioactive iodine-refractory tumors, neoadjuvant therapy with a curative intent has emerged as a reality to be taken into account when dealing with these patients. This paper presents a narrative review of the current scientific evidence regarding neoadjuvant treatment in locally advanced thyroid cancer. [ABSTRACT FROM AUTHOR]

Metastasis frequently targets bones, where cancer cells from the primary tumour migrate to the bone marrow, initiating new tumour growth. Not only is bone the most common site for metastasis, but it also often marks the first site of metastatic recurrence. Despite causing over 90% of cancer-related deaths, effective treatments for bone metastasis are lacking, with current approaches mainly focusing on palliative care. Circulating tumour cells (CTCs) are pivotal in metastasis, originating from primary tumours and circulating in the bloodstream. They facilitate metastasis through molecular interactions with the bone marrow environment, involving direct cell-to-cell contacts and signalling molecules. CTCs infiltrate the bone marrow, transforming into disseminated tumour cells (DTCs). While some DTCs remain dormant, others become activated, leading to metastatic growth. The presence of DTCs in the bone marrow strongly correlates with future bone and visceral metastases. Research on CTCs in peripheral blood has shed light on their release mechanisms, yet investigations into bone marrow DTCs have been limited. Challenges include the invasiveness of bone marrow aspiration and the rarity of DTCs, complicating their isolation. However, advancements in single-cell analysis have facilitated insights into these elusive cells. This review will summarize recent advancements in understanding bone marrow DTCs using single-cell analysis techniques. [ABSTRACT FROM AUTHOR]

Simple Summary: The aim of our retrospective study was to compare EUS-guided gastroenteroanastomosis (EUS-GE) and enteral stenting (ES) for the palliation of gastric outlet obstruction (GOO) in patients already treated with EUS-guided choledocoduodenostomy (EUS-CDS) for distal malignant biliary obstruction (DMBO). Our results on 77 patients demonstrated that both EUS-GE and ES are safe and effective for palliation of GOO, but EUS-GE is associated with less recurrence of symptoms. Background: EUS-guided gastroenterostomy (EUS-GE) is a novel and effective procedure for the management of malignant gastric outlet obstruction (GOO) with more durable results when compared to enteral stenting (ES). However, data comparing EUS-GE to ES in patients already treated with EUS-guided choledocoduodenostomy (EUS-CDS) for distal malignant biliary obstruction (DMBO) are lacking. We aimed to compare outcomes of EUS-GE and ES for the palliation of GOO in this specific population of patients. Methods: A multicenter, retrospective analysis of patients with DMBO treated by EUS-CDS and subsequent GOO treated by EUS-GE or ES from 2016 to 2021 was conducted. Primary outcomes were overall AEs rate and dysfunction of the EUS-CDS after GOO treatment. Secondary outcomes included clinical success, technical success, procedure duration, length of hospital stay and relapse of GOO symptoms. Results: A total of 77 consecutive patients were included in the study: 25 patients underwent EUS-GE and 52 underwent ES. AEs rate and patency outcomes of the EUS-CDS after GOO treatment were comparable between the two groups (12.5% vs. 17.3%; p = 0.74). No recurrence of GOO symptoms was registered in the EUS-GE group while 11.5% of ES patients had symptoms recurrence, even if not statistically significant (p = 0.16), after a mean follow-up period of 63.5 days. Conclusion: EUS-GE and ES are both effective and safe for the palliation of GOO in patients already treated by EUS-CDS for DMBO with no difference in the biliary stent dysfunction rate and overall AEs. EUS-GE is associated with less recurrence of GOO symptoms. [ABSTRACT FROM AUTHOR]

Simple Summary: Sarcopenia, a condition where muscle mass decreases, is linked to worse outcomes in pancreatic cancer patients. Computed tomography scans, which are routinely used to monitor these patients, offer a chance to assess sarcopenia without additional procedures. However, different studies report varying rates of sarcopenia due to the use of different measurement methods and thresholds. This variability can affect conclusions regarding patient outcomes, such as overall or progression-free survival. In this study, we found that sarcopenia affects nearly half of pancreatic cancer patients, with higher rates in those with advanced stages of the disease. The prevalence varied depending on the measurement methods used. These findings highlight the need to standardize how sarcopenia is assessed in future studies, which may improve clinical decision making and patient care. Introduction: Sarcopenia, a condition characterized by a loss of skeletal muscle mass, is increasingly recognized as a significant factor influencing patient outcomes in pancreatic cancer (PC). This systematic review and meta-analysis aimed to estimate the prevalence of sarcopenia in patients with PC using computed tomography and to explore how different measurement methods and cut-off values impact such prevalence. Materials and Methods: Following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines, a comprehensive search of PubMed, Web of Science, and EMBASE databases was performed, identifying 48 observational studies involving 9063 patients. Results: The overall pooled prevalence of sarcopenia was 45% (95% CI, 40–50%), but varied significantly by the method used: 47% when measured with the skeletal muscle index and 33% when assessed with the total psoas area. In addition, in studies using SMI, sarcopenia prevalence was 19%, 45%, and 57% for cutoff values <40 cm2/m2, 40–50 cm2/m2, and >50 cm2/m2, respectively. Moreover, the prevalence was higher in patients receiving palliative care (50%) compared to those treated with curative intent (41%). High heterogeneity was observed across all analyses, underscoring the need for standardized criteria in sarcopenia assessment. Conclusions: Our findings highlight the substantial variability in sarcopenia prevalence, which could influence patient outcomes, and stress the importance of consensus in measurement techniques to improve clinical decision making and research comparability. [ABSTRACT FROM AUTHOR]

Simple Summary: This study investigates the survival outcomes and palliative care needs of patients with muscle-invasive bladder cancer (MIBC) who are not eligible for curative treatment. Analyzing a cohort of 142 patients, this research reveals a median overall survival of 10.6 months and a median cancer-specific survival of 11.9 months. Worse outcomes were associated with advanced disease stage and hydronephrosis. Notably, patients excluded from curative treatment solely due to advanced age had a relatively better prognosis compared to those with severe comorbidities. This study underlines the significant burden on this patient population, highlighting frequent emergency department visits and the need for palliative interventions. These findings emphasize the critical unmet need for tailored therapeutic approaches in patients with MIBC who cannot undergo curative treatment. Objective: To assess the survival outcomes of patients diagnosed with muscle-invasive bladder cancer (MIBC) who are not candidates for curative treatment and to identify the factors influencing these outcomes. Methods: We conducted an analysis of patients diagnosed with MIBC who were either unable or unwilling to undergo curative therapy. We evaluated overall survival (OS) and cancer-specific survival (CSS) and examined their associations with various clinical variables. Additionally, we assessed emergency department visits and palliative procedures. Results: The study included 142 patients with a median age of 79.4 years and a Charlson Comorbidity Index of 9.8. At diagnosis, 59.2% of the patients had localized disease, 23.2% had metastatic disease, and 49.3% presented with hydronephrosis. Curative treatment was excluded due to comorbidities in 40.1% of cases and advanced disease stage in 36.6%. The 1-year and 2-year OS rates were 42.8% and 23.6%, respectively, with a median survival of 10.6 months. The 1-year and 2-year CSS rates were 49.6% and 30.2%, respectively, with a median survival of 11.9 months. Worse survival outcomes were associated with advanced disease stage and the presence of hydronephrosis. Patients excluded from curative treatment solely due to age had a relatively better prognosis. On average, patients visited the emergency department three times: 19% underwent palliative transurethral resection of the bladder tumor, 14.8% received radiotherapy to control hematuria, and nephrostomy tubes were placed in 26.1% of cases. Conclusions: Patients with MIBC who are unable or unwilling to undergo curative treatment have a median overall survival of less than one year, with worse outcomes observed in those with advanced disease stage and hydronephrosis. [ABSTRACT FROM AUTHOR]

Aim: To synthesize available evidence about core competencies for nurses engaged in palliative care. Design: A scoping review conducted according to the framework from Joanna Briggs Institute. Methods: The Preferred Reporting Items for Systematic Reviews and Meta‐Analyses extension for Scoping Reviews checklist was adopted to report this scoping review. The PubMed, Web of Science, Embase, ScienceDriect, CNKI, WangFang, VIP and Sinomed databases were used to systematically search for published studies from their inception to December 2023. Two researchers independently screened and selected relevant studies and performed the data charting. Results: Twenty‐six studies were included in this scoping review. Among these, 14 studies identified core competency assessment instruments among nurses engaged in palliative care, with the Palliative Care Core Competence Questionnaire was used most frequently; 13 studies investigated the status of core competencies of nurses engaged in palliative care, the majority of included studies indicated that nurse's core competencies were at moderate levels; 11 studies explored the factors influencing the core competencies of the nurses engaged in palliative care, which were classified as sociodemographic‐related factors, palliative care education‐related factors, death attitude, palliative care practice‐related experience and others. Conclusion: This scoping review offers a comprehensive overview of the current landscape of core competencies among nurses in palliative care. Findings suggested that the clinical nursing leaders need to develop tailored strategies and interventions to address specific factors and promote the continuous development of nurses' competencies in palliative care. Relevance to Clinical Practice: Core competency assessment instruments equip nurses and healthcare organizations with a range of validated tools for evaluating their proficiency in palliative care. Targeted core competency enhancement programmes need to be developed to foster a nursing workforce better equipped to improve the quality of life of end‐of‐life patients and their families. Patient or Public Contribution: No patient or public contribution. [ABSTRACT FROM AUTHOR]

Opponents of legalised assisted dying often assert that palliative care is worse in countries where assisted dying has been legalised, and imply that legalised assisted dying makes palliative care worse. This study considers five versions of this claim: that it is difficulty to access expert palliative care in countries where assisted dying has been legalised, that those countries rank low in their quality of end‐of‐life care; that legalising assisted dying doesn't expand patient choice in respect of palliative care; that growth in palliative care services has stalled in countries where assisted dying has been legalised; and that legalised assisted dying impedes the growth of palliative care or causes it to decline. In each case, it concludes that neither argumentation nor evidence supports these claims. [ABSTRACT FROM AUTHOR]

Purpose: To reveal the within-person trajectories in quality of life (QOL) in patients receiving early palliative care. Previous studies have mostly focused aggregated trajectories, based on all research participants combined, whereas this study focused on within-person trajectories in QOL and on whether the variability in QOL trajectories across patients is substantial enough to raise doubts about aggregated trajectories. Methods: Twenty-five older persons in early palliative care completed the McGill Quality of Life Questionnaire multiple times. Reliable change analyses provided estimates of the occurrence of statistically significant within-person change. Results: There was reliable, within-person variation in QOL scores across time, more so for physical than for psychological aspects of well-being. Changes in QOL scores occurred for most patients but the trajectories were not linear and there was no common trend in the nonlinear patterns. Conclusions: Reliable change across time can be identified in persons receiving early palliative care. However, the trajectories are notably variable and patient-specific. The high degrees of within-person variability across time suggests the importance of repeated QOL assessments and of dynamic tailoring of clinical treatments. Plain English Summary: This study describes the quality of life (QOL) trajectories of 25 persons in early palliative care for life-limiting chronic conditions. Previous studies have mostly focused on aggregated trajectories for all research participants combined. In contrast, this study focused on within-person trajectories in QOL and on whether the variability in QOL trajectories across patients is substantial enough to question the meaningfulness of aggregated trajectories. There was both between-patient and within-person variation in QOL scores across time and no common trend. For some patients, the change was for improving scores across time. For other patients the change was for worsening scores across time. And for still other patients, the changes were reliable but not linear. The trajectories are thus quite variable and patient-specific. The variability in QOL trajectories is substantial enough to raise concerns about aggregated trajectories. The high degrees of within-person variability across time suggests the importance of repeated QOL assessments and of dynamic tailoring of clinical treatments. [ABSTRACT FROM AUTHOR]

Palliative care chaplains conduct spiritual assessments for those within their care. This narrative review examined the literature concerning existing spiritual assessment models developed or designated for palliative care chaplain use. The literature review was performed using four databases, including a hand search of references due to the variability of keywords used within the spiritual care literature. Five spiritual assessment models were identified. The analysis of the models focused on three areas: (1) Foundational basis, (2) Spiritual needs, and (3) Structural frameworks. Published spiritual assessment models for palliative care chaplain use are variable in how each one was formed, how each tool describes and structures spiritual care needs, and how the models are implemented within their respective contexts. The PC-7 advances the field, especially through its mixed methods approach. Future validation and reliability research is needed as well as investigations concerning which models are taught by chaplain educators and used by palliative care chaplains. [ABSTRACT FROM AUTHOR]

As chaplaincy is increasingly practiced in outpatient settings, further understanding is needed of what it entails and is accomplishing within this unique context. This scoping review summarizes 42 articles that describe the types of spiritual care interventions and programs offered by chaplains in outpatient settings, and their outcomes. Findings support that chaplaincy is practiced in outpatient settings, especially in palliative care, oncology, and primary care. Interventions are delivered by chaplains as the sole interventionist, and by interdisciplinary teams with chaplain participants. Results show that outpatient chaplain interventions are feasible and acceptable, with positive psychological and spiritual outcomes. More studies with consistent outcome measurements, and structured chaplain interventions are needed to draw further conclusions about the effectiveness of outpatient chaplain interventions. [ABSTRACT FROM AUTHOR]

A substantial portion of patients with advanced cancer cannot be cured, regardless of the therapeutic methods employed. Hence, rational palliative causal treatment becomes crucial. Representative studies specifically addressing the exclusive palliative treatment of patients diagnosed with tracheal cancers have not been identified. In most studies, patients treated palliatively constituted a subset of the overall evaluated group. A thorough literature review was conducted, focusing on three types of palliative treatment: palliative radiotherapy, palliative surgical procedures, and systemic treatment for advanced disease. This review uniquely fills a significant gap in the existing literature by providing the first comprehensive and updated clinical practice guidelines specifically focused on the palliative treatment of tracheal tumors. The proposed guidelines emphasize the unique clinical challenges and treatment strategies pertinent to palliative care in tracheal tumors, which are not adequately covered in existing guidelines for other thoracic malignancies. [ABSTRACT FROM AUTHOR]

Background: Although older adults with heart failure (HF) and multiple chronic conditions (MCC) frequently rely on caregivers for health management, digital health systems, such as patient portals and mobile apps, are designed for individual patients and often exclude caregivers. There is a need to develop approaches that integrate caregivers into care. This study tested the feasibility of the Social Convoy Palliative Care intervention (Convoy-Pal), a 12-week digital self-management program that includes assessment tools and resources for clinical palliative care, designed for both patients and their caregivers. Methods: A randomized waitlist control feasibility trial involving patients over 65 years old with MCC who had been hospitalized two or more times for HF in the past 12 months and their caregivers. Descriptive statistics were used to evaluate recruitment, retention, missing data, self-reported social functioning, positive aspects of caregiving, and the acceptability of the intervention. Results: Of 126 potentially eligible patients, 11 were ineligible and 69 were deceased. Of the 46 eligible patients, 31 enrolled in the trial. Although 48 caregivers were identified, only 15 enrolled. The average age was 76.3 years for patients and 71.6 years for caregivers, with most participants being non-Hispanic White. Notably, 4% did not have access to a personal mobile device or computer. Retention rates were 79% for intervention patients, 57% for intervention caregivers, and 60% for control participants. Only 4.6% of survey subscales were missing, aided by robust technical support. Intervention patients reported improved social functioning (SF-36: 64.6 ± 25.8 to 73.2 ± 31.3) compared to controls (64.6 ± 27.1 to 67.5 ± 24.4). Intervention caregivers also reported increased positive perceptions of caregiving (29.5 ± 5.28 to 35.0 ± 5.35) versus control caregivers (29.4 ± 8.7 to 28.0 ± 4.4). Waitlist control participants who later joined the Convoy-Pal program showed similar improvements. The intervention was well-rated for acceptability, especially regarding the information provided (3.96 ±.57 out of 5). Conclusions: Recruiting informal caregivers proved challenging. Nonetheless, Convoy-Pal retained patients and collected meaningful self-reported outcomes, showing potential benefits for both patients and caregivers. Given the importance of a patient and caregiver approach in palliative care, further research is needed to design digital tools that cater to multiple simultaneous users. Trial registration: ClinicalTrials.gov Identifier NCT04779931. Date of registration: March 3, 2021. [ABSTRACT FROM AUTHOR]

Immunotherapy with anti-PD-1 antibodies significantly improved the prognosis in advanced melanoma patients, but most of them develop primary or secondary resistance to the treatment. In this study, we evaluated efficacy and safety of a chemotherapy regimen with weekly carboplatin plus paclitaxel (wCP) in patients previously treated with anti-PD-1 antibodies. We retrospectively identified 30 patients with advanced melanoma treated at our Institute over the last eight years with wCP. The co-primary endpoints of the study were overall survival (OS) and progression-free survival (PFS). In addition, we evaluated treatment tolerability. For this patient cohort, median PFS and OS were 3.25 and 7.69 months, respectively. All included patients had previously received anti-PD-1 immunotherapy, most of them had ECOG PS 0–1, and only 5 patients had a BRAF V600 mutation. In univariable analysis, we observed shorter OS in patients with > 2 involved metastatic sites, superficial spreading histology, and serum lactate dehydrogenase (LDH) values above the median. Liver metastases were associated with worse outcomes, while radiotherapy treatment of brain metastases was associated with improved OS. However, in a multivariable Cox regression model, only LDH above the median, superficial spreading histology, and female sex were significantly associated with worse OS. We reported grade 3 and 4 treatment-related toxicities in 4 and 0 patients, respectively. In conclusion, chemotherapy with wCP is a valid palliative treatment in advanced melanoma who progressed with anti-PD-1 antibodies. [ABSTRACT FROM AUTHOR]

In 2020 the UK Global Cancer Network (UKGCN) was formed to unite those in the UK interested in Global Oncology and to strengthen collaborative partnerships with stakeholders working across low- and middle-income countries (LMICs) in cancer health systems, governance, and care. The UKGCN undertook a mapping exercise to document collaborations to inform the UK's global oncology strategy. A semi-structured survey was developed and disseminated using a snowball method over ten weeks from February 2021 across the UK's cancer community, to identify individuals and institutions engaged in clinical practice, research, and/or education with partners in LMICs. The survey was sent to individuals in NHS hospitals, charities, universities, other organisations, UKGCN members, and to contacts identified by a literature and web search. A total of 639 invitations were sent, and 88 responses were received. Results demonstrate a range of collaborative efforts spanning many areas of cancer control: health promotion, prevention, diagnosis and treatment, survivorship, and palliative care. A wide range of countries were represented from Sub-Saharan Africa, South America, the MENA region, China, and South-East Asia. The projects included education and training (146), clinical practice/care (144), and research (226). This mapping exercise demonstrated considerable UK collaboration with stakeholders in LMICs across all three domains of education, clinical care, and research. The survey results provide an initial framework from which to promote in-depth strategic intelligence on the broad range of activities undertaken by the UK global oncology community. This information has been used as a catalyst to create new partnerships and connect colleagues working in similar geographical settings, encouraging bidirectional learning. The UKGCN will galvanise endeavours to improve equitable access to cancer services globally. • There is considerable UK collaboration with stakeholders in LMICs working in global oncology. • The survey acts as a baseline to build on and monitor output in UK global oncology community. • This paper advocates for global oncology partnerships and bidirectional learning. • The UKGCN aims to advocate for and co-ordinate endeavours to improve equitable access to cancer services globally. [ABSTRACT FROM AUTHOR]

Background: Family caregivers have a vital role to play in palliative care for chronically ill patients. In Taiwan, caregiver demographics are evolving, with the number of male caregivers increasing. Gender differences influence psychosocial behaviours, thought processes and communication styles. In healthcare, acknowledgement of gender differences facilitates effective delivery of high‐quality care. Aim: The aim of this study is to explore male caregivers' decision‐making process for palliative care for chronically ill family members. Methods: This study employed grounded theory to generate a substantive theory of male caregivers' decision‐making process for palliative care for chronically ill family members. We recruited 22 male participants from three inner‐city teaching hospitals in Taiwan. Findings: Regarding the decision‐making process of palliative care of chronic ill family, where male caregivers do not want their loved ones suffering anymore, the male caregivers' decision‐making process was impacted, first, by caregivers' views on the last stage of life; second, by their wish for good care during the end of life; and third, by their conviction that the patients' wishes should be respected. Furthermore, caregivers' philosophy of life and death is also a supportive ground for decision‐making. This philosophy was influenced by their education in palliative care, financial status and religious beliefs and practices. The core category emerging from this study is encapsulated by a participant's assertion, 'How difficult is it? There are no male and female differences'. Conclusion: We found that palliative care experiences of male caregivers are important for the decision‐making process for palliative care for their chronically ill family members. Caregivers want their loved ones to receive good care as the last step in life, to respect their wishes and no more suffering for the patient. Therefore, health professionals should be familiar with the palliative care process that caregivers go through to offer updated information when needed. Summary statement: What is already known about this topic? Taiwanese philosophy of end‐of‐life care focuses on family values and shares the power of making critical decisions between patients and their relatives.Due to cultural preferences, the dedicated family caregiver often becomes the only channel for honouring the patient's wishes.Male and female caregivers can have different coping mechanisms; males are less likely to seek support and are more stressed by financial burdens. What this paper adds? The patient and the whole family should be considered in the discussion of end‐of‐life care.Male caregivers indicated palliative care should be linked to comfort care, avoidance of suffering and respecting patients' wishes. The implication of this paper: Male caregivers should be well supported, good care for their loved ones and fulfil the patient's wishes and no more suffering.Education in palliative care and religious and financial support should be provided along with palliative care services to both male caregivers. [ABSTRACT FROM AUTHOR]

Aim: This systematic review aims to identify methodological and ethical challenges in designing and conducting research at the end of life from the perspective of researchers and provide a set of recommendations. Background: Conducting research with patients and family carers facing end‐of‐life issues is ethically and methodologically complex. Design: A systematic review was conducted. Data sources Four databases (MEDLINE, EMBASE, CINAHL, PsycInfo) were searched from inception until the end of 2021 in February 2022. Review methods: The Preferred Reporting Items for Systematic Reviews was followed, and the JBI Approach to qualitative synthesis was used for analysis. Results: Seventeen of 1983 studies met inclusion criteria. Data were distilled to six main themes. These included (1) the need for flexibility at all stages of the research process; (2) careful attention to timing; (3) sensitivity in approach; (4) the importance of stakeholder collaboration; (5) the need for unique researcher skills; and (6) the need to deal with the issue of missing data. Conclusion: The findings illuminate several considerations that can inform training programmes, ethical review processes and research designs when embarking on research in this field. Summary statement: What is already known about this topic? Conducting research with patients and their relatives at the end of life brings many ethical and methodological issues.Healthcare providers are often protective and can limit researchers' access to patients.Recruitment of participants is often very difficult as response rates are usually low. What this paper adds? Engaging in research about end‐of‐life care requires flexibility, sensitivity and attention to ethical challenges, as well as adjustment to the organizational and legislative‐juridical contexts.Gatekeeping processes may be improved by involving stakeholders in all parts of a research project, and this also helps to maximize a project's implementation and sustainability after the end of the research.End‐of‐life research can be emotionally challenging for researchers, and this should be reflected in adequate training and emotional support. The implications of this paper: The results show that the Chinese version of the Self‐Care in Chronic Obstructive Pulmonary Disease Inventory is simple and accessible, and nurses can use it to assess patients' capacity for self‐care regularly.There is a paucity of literature on the methodological issues that are faced when conducting research in this area.Future training, education and support of researchers in palliative and end‐of‐life care should seek to address the challenges that are identified in this review.End‐of‐life research may be emotionally challenging for researchers, and this will also require consideration. [ABSTRACT FROM AUTHOR]

Aim: To investigate the effects of dyadic intervention on anxiety, depression, care burden and quality of life in informal caregivers of palliative patients with lung cancer. Background: Informal caregivers of palliative lung cancer patients bear a large number of negative emotions during the process of caring for the patients. Dyadic intervention has the potential for improving them but the overall effect is unclear. Design: A systematic review and meta‐analysis. Data sources All randomized controlled trials were retrieved from the following databases until 4 May 2023: Web of Science, Embase Ovid, PubMed, Cochrane Central Register of Randomized Controlled Trials, Weipu, Wanfang and Chinese National Knowledge Infrastructure databases. Review methods: This review was performed by Stata 12.0 and Review Manager 5.3. Results: Thirteen randomized controlled trials were in accordance with the inclusion and exclusion criteria (n = 1807). The results revealed that dyadic intervention significantly improved family caregivers' anxiety, depression and caregiver burden of palliative patients with lung cancer. There was no significant difference in quality of life between the dyadic intervention group and family caregivers who did not receive the dyadic intervention. Conclusions: Dyadic intervention positively impacts the experience of family caregivers of palliative patients with lung cancer. Summary statement: What is already known about the topic? Informal caregivers of palliative lung cancer patients bear a large number of negative emotions during the process of caring for the patients.The overall effect of dyadic intervention for informal caregivers of palliative patients with lung cancer is unclear on account of different results reported in existing studies. What this paper adds? Dyadic intervention could improve family caregivers' anxiety, depression and caregiver burden of palliative patients with lung cancer, even though it did not improve quality of life.Dyadic intervention positively impacts the experience of family caregivers of palliative patients with lung cancer. The implications of this paper: Medical personnel can provide personalized dyadic interventions based on the assessment of the palliative patient and their informal caregivers, such as providing illness understanding, symptom management and addressing psychosocial.Findings can be applied as a reference to help informal caregivers prevent potential emotional disturbance. [ABSTRACT FROM AUTHOR]

Good palliative care requires thorough assessment of patient needs and addressing them appropriately. Cognitive behavioural therapy (CBT) has been a mainstay in the management of psychological symptoms of palliative care patients, however, systematic reviews in this subject remain limited. This scoping review aims to provide an overview of the available literature in the use of cognitive behavioural interventions (CBI) in the adult palliative care setting, specifically. Publications were obtained from PubMed, Scopus, and PsycINFO, screened, and data was collected following the Joana Briggs Institute framework of scoping reviews. Quantitative intervention studies make up most of the included studies (64/69), with most studies reporting improvements in depression (24/69), anxiety (17/69) and quality of life (17/69). Advanced cancer (38/69) and end-stage renal disease (21/69) were the most common palliative care settings in the included studies. Conventional CBT as an intervention was studied the most (32/69), and most conducted the intervention face to face (38/69). To address the knowledge gaps identified, it is recommended that future studies diversify the palliative care settings and further inquire into remote methods of delivering CBIs. [ABSTRACT FROM AUTHOR]

Patients receiving early palliative care experience improved quality of life, may live longer, and may have earlier referrals to hospice. Caregivers with loved ones receiving early palliative care experience improved communication, decreased risk of caregiver burnout, and improved bereavement adjustment. Studies have shown that patients who received palliative care at diagnosis lived 2.5 months longer than those who did not; patients who received aggressive resuscitation or intensive care admission near the end of life had worse quality of life; and caregivers were three times more likely to develop depression following patient death for those who did not receive early palliative care. [ABSTRACT FROM AUTHOR]

Purpose: Disability in activities of daily living (ADL) is a common unmet need among people with advanced respiratory disease. Rehabilitation could help prolong independence, but indicators for timely intervention in this population are lacking. This study aimed to identify trajectories of disability in ADLs over time, and predicting factors, in advanced respiratory disease. Method: Multi-site prospective cohort study in people with advanced non-small cell lung cancer (NSCLC), chronic obstructive pulmonary disease (COPD) or interstitial lung disease (ILD), recruited from hospital or community services, throughout England. Disability in basic (Barthel Index) and instrumental (Lawton–Brody IADL Scale) ADLs were assessed monthly over six months. Visual graphical analysis determined individual trajectories. Multivariate logistic regression examined predictors of increasing disability in basic and instrumental ADLs. Findings: Between March 2020 and January 2021, we recruited participants with a diagnosis of NSCLC (n = 110), COPD (n = 72), and ILD (n = 19). 151 participants completed ≥3 timepoints and were included in the longitudinal analysis. Mobility limitation was an independent predictor of increasing disability in instrumental ADLs (odds ratio, 1⋅41 [CI: 1⋅14–1⋅74], p = 0⋅002). Conclusion: Mobility limitation could be used as a simple referral criterion across people with advanced respiratory disease to ensure timely rehabilitation that targets independence in ADLs. IMPLICATION FOR REHABILITATION: To our knowledge this is the first prospective cohort study of trajectories of disability in activities of daily living (ADL) in advanced respiratory disease, including recruitment during the Covid-19 pandemic. It adds to existing evidence by identifying individual variability in trajectories of ADL disability which are undetected at group level. The identification of mobility limitation as a predictor of increasing ADL disability, while controlling for malignant or non-malignant respiratory disease, is novel and has practical utility. Our findings have implications for clinical care, as early identification of functional decline through use of mobility limitation tools could flag early referral to rehabilitation services, potentially preventing or delaying forthcoming functional decline and avoiding reactive crisis management. Mobility limitation is a predictor of increasing disability in activities of daily living in advanced disease, which could be used to flag early referral to rehabilitation services, to help prevent or delay forthcoming functional decline and avoid reactive crisis management [ABSTRACT FROM AUTHOR]

The article explores the collaboration between ethicists and pediatric palliative care providers to enhance patient care. Topics discussed include the reasons for ethics consult requests by palliative care clinicians, the overlapping skill sets between bioethics and palliative care, and the importance of clear communication and role definition in family meetings to address ethical dilemmas and treatment preferences.

Background: The benefits of palliative care in patients with advanced cancer are well established. However, the effect of the skills of the palliative care team (PCT) on patient outcomes remains unclear. Our aim was to evaluate the association between hospital PCT intervention volume and patient outcomes in patients with cancer. Methods: A retrospective cohort study was conducted using a nationwide inpatient database in Japan. Patients with cancer receiving chemotherapy and PCT intervention from 2015 to 2020 were included. The outcomes were incidence of hyperactive delirium within 30 days of admission, mortality within 30 days of admission, and decline in activities of daily living (ADL) at discharge. The exposure of interest was hospital PCT intervention volume (annual number of new PCT interventions in a hospital), which was categorized into low-, intermediate-, and high-volume groups according to tertiles. Multivariate logistic regression and restricted cubic-spline regression were conducted. Results: Of 29,076 patients, 1495 (5.1%), 562 (1.9%), and 3026 (10.4%) developed delirium, mortality, and decline in ADL, respectively. Compared with the low hospital PCT intervention volume group (1–103 cases/year, n = 9712), the intermediate (104–195, n = 9664) and high (196–679, n = 9700) volume groups showed significant association with lower odds ratios of 30-day delirium (odds ratio, 0.79 [95% confidence interval, 0.69–0.91] and 0.80 [0.69–0.93], respectively), 30-day mortality (0.73 [0.60–0.90] and 0.59 [0.46–0.75], respectively), and decline in ADL (0.77 [0.70–0.84] and 0.52 [0.47–0.58], respectively). Conclusion: Hospital PCT intervention volume is inversely associated with the odds ratios of delirium, mortality, and decline in ADL among hospitalized patients with cancer. [ABSTRACT FROM AUTHOR]

• IPF is a progressive disease but palliative care is not early available. • Ealy palliative care programs could reduce in-hospital death. • Implementing palliative cares favored at home or in hospice death (p = 0,02). • Early palliative care positively impact on end-of-life in IPF patients. Idiopathic Pulmonary Fibrosis (IPF) is a lethal disease; most patients die in hospitals because palliative care (PC) is not wildly and early available. We aimed to determine the impact of an early PC program in IPF patients on place of death, emergency department (ED) admission, unplanned medical visits and survival before and after its implementation at our clinic. IPF patients from our ILD clinic who died between January 1st, 2018 and December 31th, 2023 were included in the analysis. Primary outcomes were location of death, number of ED access and unplanned medical visits; secondary outcomes was survival from diagnosis. A total of 46 decedents between 2018 and 2023 were analysed: (median age 71,5 ± 5,5 years, 89 % male): 26 died before the implementation of the early PC program and 20 after. Through χ2 test, location of death resulted significantly different in the two groups, showing the capacity of early PC to favor at home or in hospice death (p = 0,02); similarly, the number of unplanned visits was significantly lower (p = 0,03). Finally, survival was significantly lower in patients not receiving the early PC program (p = 0,01). The availability of an early PC program since the diagnosis significantly reduced both the death rate in hospital settings, favoring dying in hospice or at home, and the number of unplanned medical visits. Furthermore, IPF patients receiving early PC showed a longer survival than those who did not. [ABSTRACT FROM AUTHOR]

The employment of migrant care workers provides a remedy to face the challenges of increased demand for care of older adults. A scoping review aimed to identify, categorize, and summarize the existing knowledge about migrant care workers' working experiences in long-term care facilities. Identifying gaps in the literature can inform future research. Five electronic databases were searched in April 2024 in addition to a manual search for articles published in English. Forty-five articles were reviewed. A few studies described migrant care assistants' main tasks as assisting physical care and care assistants' characteristics grouped into personal and acquired qualities to provide good quality care. Migrant care workers experienced work satisfaction, achievement, adaptability and adjustment, organizational support, work burden, sense of loneliness, low wages, low social status, and loss of profession. They faced challenges involving inadequate knowledge of palliative care, communication and language barriers, cultural and religious differences, and health concerns. Friendly and discriminatory relationships were found between migrant care workers and stakeholders. Existing evidence regarding the experiences of migrant care workers in delivering palliative care to dying residents or facilitating death preparation is limited. Additionally, there is a notable absence of data from the perspectives of employers and residents on discrimination issues. Further research is necessary to investigate these areas. [ABSTRACT FROM AUTHOR]

Background Primary malignant brain tumors (ie, brain cancer) impact the quality of life (QoL) for patients and care partners in disease-specific ways involving cognition and communication. Palliative care (PC) addresses patient/care partner QoL, but it is not known how PC may address the unique needs of brain cancer patients. The purpose of this project was to identify brain cancer PC research priorities using participatory co-design methods. Methods Participatory co-design included the formation of a longitudinal, collaborative advisory group, engagement frameworks, design-thinking processes, and social media-based engagement over a 1-year period. Community-identified brain cancer QoL needs and research priorities were mapped to proposed "essential elements" of brain cancer PC services. Results We engaged an estimated 500 patients, care partners, healthcare professionals, and others with an interest in QoL and PC services for people with malignant brain tumors. Research priorities included testing the early introduction of PC services designed to address the unique QoL needs of brain cancer patients and care partners. Essential elements of brain cancer PC include: (1) addressing brain cancer patients' unique range of QoL needs and concerns, which change over time, (2) tailoring existing services and approaches to patient needs and concerns, (3) enhancing the involvement of interprofessional care team members, and (4) optimizing timing for PC services. This was the first participatory research effort exploring brain cancer patient and care partner QoL needs and PC services. Conclusions The brain tumor community calls for research testing PC service models for patients that incorporate the "essential elements" of palliative care. [ABSTRACT FROM AUTHOR]

Background: PIPAC is a recent approach for intraperitoneal chemotherapy with promising results for patients with peritoneal carcinomatosis. A systematic review was conducted to assess current evidence on the efficacy and outcomes of PIPAC in patients affected by ovarian cancer. Methods: The study adhered to the PRISMA guidelines. PubMed, Google Scholar and ClinicalTrials.gov were searched up to December 2023. Studies reporting data on patients with OC treated with PIPAC were included in the qualitative analysis. Results: Twenty-one studies and six clinical trials with 932 patients who underwent PIPAC treatment were identified. The reported first access failure was 4.9%. 89.8% of patients underwent one, 60.7% two and 40% received three or more PIPAC cycles. Pathological tumour response was objectivated in 13 studies. Intra-operative complications were reported in 11% of women and post-operative events in 11.5% with a 0.82% of procedure-related mortality. Quality of life scores have been consistently stable or improved during the treatment time. The percentage of OC patients who became amenable for cytoreductive surgery due to the good response after PIPAC treatment for palliative purposes is reported to be 2.3%. Conclusion: The results showed that PIPAC is safe and effective for palliative purposes, with a good pathological tumour response and quality of life. Future prospective studies would be needed to explore the role of this treatment in different stages of the disease, investigating a paradigm shift towards the use of PIPAC with curative intent for women who are not eligible for primary cytoreductive surgery. [ABSTRACT FROM AUTHOR]