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Purpose: Health and social care professionals (professionals) often lack knowledge, skills and confidence to support adults at end of life with significant caregiving responsibilities for children, < 18. A recent systematic review highlighted a dearth of educational interventions (n = 2) to equip professionals to provide supportive care to families when a parent has cancer. Addressing an evident gap in education, this paper details the adaption and optimisation of a face-to-face educational intervention to an accessible eLearning resource., Methods: Guided by the 'Person-based Approach', a theory-driven and evidence-based face-to-face educational intervention was adapted and optimised as an eLearning resource. This incorporated current evidence, alongside insights from an expert group, learning technologists and research team, leading to the design of an eLearning prototype. This was optimised for acceptability and usability using think-aloud interviews with end-users (n = 13) and patient and public involvement (n = 4)., Results: An iterative adaption and optimisation process enabled implementation of navigational improvements, changes to enhance clarity on language and appropriateness of images and interactive components. During optimisation, positive feedback was reported; especially regarding the 'look and feel' and on the educational videos and reflective exercises embedded throughout the eLearning resource., Conclusion: The systematic adaption and optimisation of this novel eLearning resource has aimed to promote relevance, appropriateness, and applicability of an accessible evidence-based and theory-driven training resource for professionals. It has the potential to promote family-centred supportive end of life cancer care, which ultimately can promote better bereavement outcomes. An evaluation of the intervention is required to explore impact on practice., Competing Interests: Declarations. Ethics approval and consent to participate: Ethical approval was obtained from Ulster University [Ref: FCNUR-23-002] and University College Dublin [Ref: LS-22-65]. Informed consent was obtained from participants prior to their participation in the evaluation. Consent for publication: Not applicable. Competing interests: The authors declare no competing interests., (© 2024. The Author(s).)

Purpose: End-of-life decision-making, particularly relating to withholding life-sustaining treatment (LST), is a complex and emotionally charged process involving healthcare professionals, patients, and caregivers., Methods: This qualitative study explored the decision-making process in South Korea, where cultural norms and ethical considerations influence the dynamics of shared decision-making (SDM). In-depth interviews were conducted with healthcare professionals, patients, and caregivers using a grounded theory approach to elucidate the themes and processes underlying SDM for LST. This study used the "6C" framework, which could reflect the intricacies of the SDM process., Results: The results suggest that healthcare professionals face emotional challenges and an ethical dilemma in disclosing prognoses and discussing LST withholding, often deferring such discussions until the condition of patients worsens. Cultural factors, such as collectivist values and societal taboos surrounding death, influence decision-making dynamics, highlighting the need for tailored interventions and cultural competence in healthcare settings., Conclusion: The proposed "6C" framework provides insights into addressing current challenges in SDM and emphasizes the importance of cultural norms and ethical obligations in end-of-life decision-making. Further research is warranted to examine the SDM process in diverse cultural contexts and develop interventions to enhance patient and family involvement in the decision-making process for LST., Competing Interests: Declarations Institutional review board statement This qualitative study’s ethical approval was obtained from Institutional Review Boards: National Evidence-based Health Care Collaborating Agency (No.19–005-7) and Dongguk University Ilsan Hospital (IRB# DUIH 2019–03-004). Competing interests The authors declare no competing interests., (© 2024. The Author(s).)

Background: When there is limited access to primary care or end-of-life services for patients with chronic diseases, caregivers often need to bring their loved ones to emergency departments (EDs) to solve or control distressing physical and psychosocial-spiritual problems. There is limited literature about the experiences of primary caregivers of patients with nononcologic chronic diseases who are at the end of life and are evaluated in EDs in Latin America., Methods: We conducted in-depth interviews with primary caregivers of adult patients with advanced and terminal chronic nononcologic diseases who were evaluated in the ED of a hospital in Lima, Peru. This qualitative study employed a phenomenological approach. Themes, categories, codes, and quotes were analyzed using ATLAS.ti 9.1.4., Results: Twelve primary caregivers, aged 38 to 76 years old, mostly female immediate family members (daughter or wife), participated. They described their experiences in the ED, including feelings of despair and anguish due to prolonged waiting times, insufficient resources, incomplete information regarding the patient's problems, and "insensitive" treatment by the staff. Some also expressed gratitude for "saving patient's lives." They also experienced deficiencies in home care follow-up and patient transfers, which worsened during the COVID-19 pandemic; many times they felt that "they were ignored." When caring for patients at home, caregivers felt sad, helpless, and frustrated as they observed patients' progressive deterioration. As patients approached death, caregivers expressed that they tried to "give them all the love" and to have them present for as long as possible, although at the same time caregivers did not want patients to continue to suffer and hoped for "a better place" after this life. Caregivers found their faith to be a source of strength as they continued to care for and be with their loved one until the end., Conclusion: Caregivers reported "traumatic" and "shocking" experiences during ED care, as well as conflict between wanting the patient's suffering to end and wanting to prolong their lives. They also expressed feelings of gratitude, resignation, love, faith, and hope., Competing Interests: Declarations Ethics approval and consent to participate The research was conducted with the approval of the Ethics Committee of Rebagliati Hospital (Note 206-CE-GHNERM-GRPR-ESSALUD-2020). All Participants signed an informed consent document, in this study there was not any participant below the age of 16. All methods were performed in accordance with the relevant guidelines and regulations (Declaration of Helsinki). Consent to publish Not applicable. Competing interests The authors declare no competing interests., (© 2024. The Author(s).)

Background: Providing high-quality end-of-life care is currently a paramount health priority. Given that the standard of care is intrinsically linked to nurses' motivations, it is becoming too imperative to explore the contributing factors Consequently, this study was undertaken to elucidate the experiences of Iranian nurses regarding their motivation for delivering end-of-life care., Methods: This research is a qualitative, descriptive inquiry employing conventional content analysis, carried out at two governmental hospitals in Gorgan, northern Iran, from February to July 2023. 12 nurses were purposefully selected to participate in the study, ensuring maximal diversity. The data were collected through semi structured interviews and analyzed using Graneheim and Lundman's five-step method. The coding process was facilitated by the useof MAXQDA version 10 software. To establish rigor, the four criteria outlined by Guba and Lincoln were applied., Results: the participants included eight women and four men with an average age of 39.6 ± 6.31 years. The data analysis yielded five main categories and fifteen subcategories. The main categories were: "The Foundations of professional care in nursing", "Core Drivers in Optimal End-of-Life Care", "Family Involvement in End-of-Life Care", "Incorporating Spiritualism in Care" and "Dominant motivational Issues Within the Caregiving Atmosphere"., Conclusions: This study delineates the experiences that influence the provision of end-of-life care from the perspective of Iranian nurses. Innate traits such as empathy and a passion for nursing, in addition to nurses' moral compass and spiritual beliefs, serve as pivotal motivational stimuli. Leveraging these findings can be instrumental in shaping healthcare practices and policies to enhance the quality of end-of-life care., Competing Interests: Declarations Ethical approval This study honored the ethical framework of the Declaration of Helsinki and received approval from the Ethics Committee of Golestan University of Medical Sciences, Gorgan, Iran (IR.GOUMS.REC.1401.458). Potential participants were thoroughly briefed on the objectives of the study, their rights, consent, confidentiality, and voluntary participation guarantees before consenting and agreeing to the recording of their interviews. Informed consent was obtained from all participants. All procedures were designed to uphold privacy and utilize data solely for research purposes. Consent for publication Not applicable. Competing interests The authors declare no competing interests., (© 2024. The Author(s).)

Background: Advance care planning (ACP) is a well-recognized quality indicator for palliative care. Despite two decades of effort, previous studies showed that ACP-related documentation and end-of-life discussion rates remain low for palliative care patients. Although ACP is about self-determination and autonomy, studies consistently show the importance of family involvement in adult patient's medical decision-making. Yet, research on ACP interventions with structured components targeting family member remained limited. The current study aims to evaluate the effectiveness of a structured, family-supported, patient-centred ACP programme for adult palliative care patients and their families., Methods: This is a 2-arm parallel group randomized controlled trial with follow-ups at 6 and 12 months. One hundred and seventy eligible palliative care patients and their families are planned to be recruited from three hospitals, and randomized to either a structured, family-supported, patient-centred ACP programme (ACP-Family) or usual ACP care (ACP-UC) arm. The ACP-Family intervention consists of 2 sessions. The primary outcome is family's prediction accuracy of patient's treatment preferences at 6 months. Secondary outcomes include proportions of new ACP documentations and family-reported perception of whether the patient's end-of-life (EOL) care preference was respected; patient's decisional conflict; quality of communication; family's decision-making confidence; family's anxiety and depression; and patients' and family members' satisfaction of the intervention. Outcomes of the two groups will be compared using regressions and linear mixed-effects models., Discussion: This study will provide rigorous scientific evidence on the effectiveness of a structured and well-design family-supported, patient-centred ACP programme for adult palliative care patients and their family members in the hospital setting. If the ACP-Family proves to be effective, it will provide a structured and systematic approach to facilitate ACP discussions involving family members. This will respond to local needs and inform international ACP practice., Trial Registration: ClinicalTrials.gov Identifier: NCT05935540., (© 2024. The Author(s).)

Introduction: Since World War 1, physicians have noted the calming effects of music for military personnel experiencing "shell shock," Post Traumatic Stress Disorder (PTSD), or stress. Researchers have documented that stress or PTSD-like symptoms re-emerge for veterans at the end of life, triggered by hospital-like settings, co-occurring conditions, and debilitation. Dying veterans also face integration of their service and combat experiences into summations of their lives. In response, there has been a national movement for bedside ceremonies, often with music, to honor veterans., Materials and Methods: The project elicited veterans' musical preferences for calming and for music for honor services, using non-hospitalized veterans as surrogates for veterans in hospice. Respondent-driven sampling protected confidentiality and likely resulted in participants being representative of US veterans in terms of ethnicity, gender, and military branch. Recruitment materials contained all elements of informed consent, with consent collected in the introduction to the online survey. The survey had embedded links to musical performances, as well as write-in musical choices, and allowed US veterans from the Army, Air Force, Marines, and Navy to note their preferences both for music that was calming and music to be used in honor ceremonies. Online queries also asked about stress during service, usual coping strategies for stress, and current or past symptoms of PTSD. Links to hot lines were provided. The study was approved by the University of Arizona Institutional Review Board., Results: Listening to music was the most prevalent of the 20 coping mechanisms for stress in this sample of 30 veterans. Musical preferences were stable across age groups. For calming, music at resting heartbeat rhythms was chosen. Music from early adulthood or from the timelessness of the classics was selected most often. Modern music with lyrics has themes of duty, affirmation, gratitude, and relief. The nearly universal soothing effects of lullabies were recognized. For music for honor ceremonies, desires were often independent of the military branch. Patriotic songs, or songs recognizing multiple service branches, or with themes of peace and affirmation were more often chosen than music from a particular service branch., Conclusion: Listening to music is a frequent coping strategy for veterans. While themes representing classical music choices are readily available in anthologies, other music chosen by this sample is not; the veterans' preferred music is rarely found in compilations of popular, movie, and TV music. Hospice and hospital intakes that document and communicate veterans' musical preferences to music therapists and therapeutic musicians may better support service men and women. Further research may examine veterans' preference for live or recorded music at end of life given the importance of meaning-making and the presence of others documented in the literature., (© The Association of Military Surgeons of the United States 2024. All rights reserved. For commercial re-use, please contact reprints@oup.com for reprints and translation rights for reprints. All other permissions can be obtained through our RightsLink service via the Permissions link on the article page on our site–for further information please contact journals.permissions@oup.com.)

Background: Given the typical trajectory of glioblastoma, many patients lose decision-making capacity over time, which can lead to inadequate advance care planning (ACP) and end-of-life (EOL) care. We aimed to evaluate patients' current ACP and EOL care status., Patients and Methods: We conducted a cohort study on 205 patients referred to oncologists at a Korean tertiary hospital between 2017 and 2022. We collected information on sociodemographic factors, cancer treatment, palliative care consultation, ACP, legal documents on life-sustaining treatment (LST) decisions, and aggressiveness of EOL care., Results: With a median follow-up time of 18.3 months: 159 patients died; median overall survival: 20.3 months. Of the 159 patients, 11 (6.9%) and 63 (39.6%) had advance directive (AD) and LST plans, respectively, whereas 85 (53.5%) had neither. Among the 63 with LST plans, 10 (15.9%) and 53 (84.1%) completed their forms through self-determination and family determination, respectively. Of the 159 patients who died, 102 (64.2%) received palliative care consultation (median time: 44 days from the first consultation to death) and 78 (49.1%) received aggressive EOL care. Those receiving palliative care consultations were less likely to receive aggressive EOL care (83.3% vs 32.4%, P < .001), and more likely to use more than 3 days of hospice care at EOL (19.6% vs 68.0%, P < .001)., Conclusions: The right to self-determination remains poorly protected among patients with glioblastoma, with nearly 90% not self-completing AD or LST plan. As palliative care consultation is associated with less aggressive EOL care and longer use of hospice care, physicians should promptly introduce patients to ACP conversations and palliative care consultations., (© The Author(s) 2024. Published by Oxford University Press.)

Background: An advance care plan outlines a patient's wishes regarding medical treatment or goals of care in the case that they become unable to communicate or to make decisions. An advance care directive (ACD) is an advance care plan that has been formally recorded and has legal status. Despite ACDs playing an important role in person-centred end-of-life care, an earlier retrospective medical records audit demonstrated that only 11% (58/531) of people who died due to a terminal illness had an ACD.The aim of this project was to increase the proportion of patients with a terminal illness completing an ACD. A secondary outcome was to measure the impact of ACDs on hospital and intensive care unit (ICU) admissions in the last 6 months of life.This multifaceted project comprised (1) education for health professionals and the public; (2) individual support for patients on request; (3) development of online resources for health professionals and the general public; and (4) monthly team meetings., Method: The proportion of ACDs completed and hospital and ICU admissions during the last 6 months of life, were extracted via medical record audits.Written consent was required for patients to participate, including being contacted by the project team and accessing their medical records., Results: 112 patients consented to participate in the project and 109 (97%) completed an ACD. There was no reduction in the average number of hospital admissions, while ICU admissions reduced from 14% (n=74) to 0%., Conclusion: The targeted, multifaceted approach to education and support for completion of ACDs, resulted in a significant increase in ACD completion and a major reduction in ICU admissions., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2024. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

This analysis aims to describe the care pathways of patients with central nervous system (Cns) tumors during the last 30 days of life, using relevant indicators retrieved from regional healthcare information system data, compare these indicators with those of patients who died from other solid tumors, and assess the role of socioeconomic position (Sep) in accessing end-of-life care among Cns patients. The study included 2,795 patients who died from Cns tumors between 2015 and 2019. In the last 30 days of life, compared to the solid tumor cohort, Cns patients had less access to emergency services and hospitalizations. Regarding treatments, the percentage of opioid users was significantly lower than that of solid tumor patients. Concerning the role of Sep, Cns patients with a higher Sep were less likely to access the Emergency Room and more likely to receive antitumor. In conclusion, the analysis of administrative databases in epidemiology is essential in order to monitor care pathways targeted at highly vulnerable populations.

Implantable cardioverter defibrillators (ICDs) are implanted in increasing numbers of patients with the aim of treating ventricular arrhythmias in high-risk patients and reducing their risk of dying. Individuals are also living longer with these devices. As a result, a greater number of patients with an ICD will deteriorate either with worsening cardiac failure, another non-cardiac condition or general frailty and will have a limited prognosis. Frequently, they will be cared for by non-cardiac teams who may be less familiar with ICDs. Therefore, to ensure the person receives high-quality end-of-life care, they should have the opportunity to consider and discuss the option to deactivate the shock function of their ICD. If the ICD shock therapy is not discontinued, there is an increased risk that, as a person reaches the last days of life, the ICD may deliver multiple, painful shocks that are distressing. There is also a risk that the device may delay the person's natural death, which the person would not have chosen if they had been given the opportunity to discuss discontinuation. The British Heart Rhythm Society has developed a practical guideline to support all healthcare professionals who are caring for patients who have an ICD. This includes descriptions of different device types, ethical and legal aspects, timing and nature of ICD discussions and practical advice regarding how the devices may be deactivated. It aims to promote awareness and timely discussion between professionals and patients and to encourage best practice., (© The Author(s) 2024. Published by Oxford University Press on behalf of the British Geriatrics Society. All rights reserved. For permissions, please email: journals.permissions@oup.com.)

Palliative medicine represents the holistic multiprofessional treatment of severely and incurably ill people and their relatives, addressing their complex physical, psychological, social and spiritual needs. The central therapeutic goals are the quality of life and alleviation of suffering. In the course of many neurological diseases, high symptom burden, long and variable trajectories and unfavorable prognosis at times create a need for palliative care even at an early stage, which is currently still inadequately met. This can be countered by qualified neuropalliative care. In addition to intensifying interdisciplinary collaboration, this requires neurologists to have core competencies in palliative care. These include a team-oriented attitude, communication skills, expertise in symptom control and knowledge of biomedical ethics including palliative options at the end of life., (© 2024. The Author(s), under exclusive licence to Springer Medizin Verlag GmbH, ein Teil von Springer Nature.)

The European Society of Intensive Care Medicine (ESICM) has developed evidence-based recommendations and expert opinions about end-of-life (EoL) and palliative care for critically ill adults to optimize patient-centered care, improving outcomes of relatives, and supporting intensive care unit (ICU) staff in delivering compassionate and effective EoL and palliative care. An international multi-disciplinary panel of clinical experts, a methodologist, and representatives of patients and families examined key domains, including variability across countries, decision-making, palliative-care integration, communication, family-centered care, and conflict management. Eight evidence-based recommendations (6 of low level of evidence and 2 of high level of evidence) and 19 expert opinions were presented. EoL legislation and the importance of respecting the autonomy and preferences of patients were given close attention. Differences in EoL care depending on country income and healthcare provision were considered. Structured EoL decision-making strategies are recommended to improve outcomes of patients and relatives, as well as staff satisfaction and mental health. Early integration of palliative care and the use of standardized tools for symptom assessment are suggested for patients at high risk of dying. Communication training for ICU staff and printed communication aids for families are advocated to improve outcomes and satisfaction. Methods for enhancing family-centeredness of care include structured family conferences and culturally sensitive interventions. Conflict-management protocols and strategies to prevent burnout among healthcare professionals are also considered. The work done to develop these guidelines highlights many areas requiring further research., (© 2024. The Author(s).)

Motor neurone disease (MND) is a progressive neurodegenerative disorder which is ultimately terminal. It causes muscle weakness which can lead to the need for assistance in breathing, for some with the disease. This paper draws on qualitative research using semi-structured interviews with 32 people bereaved by the death of a family member with MND who was dependent on home mechanical ventilation, from across the United Kingdom. Interviews explored how the end-of-life of a person who had used non-invasive ventilation to assist their breathing was experienced by participants, who had cared about, and for them. Four themes are used to examine the impact of dependent ventilation technology on the experience of dying on the part of bereaved family members. Themes are: accompanied dying, planned withdrawal of ventilation, blurred time of death, time post-death. The perception and experience of time was a key component across all four themes. Ventilator technology played a critical role in sustaining life, but it could also contribute to a complex dynamic where the realities of death were mediated or obscured. This raises ethical, emotional, and existential considerations, both for the individuals receiving ventilator support and their families, as well as for healthcare professionals involved in end-of-life care., Competing Interests: Declaration of competing interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2024 The Authors. Published by Elsevier Ltd.. All rights reserved.)

Introduction: Clinical guidelines and quality improvement initiatives have identified reducing the use of end-of-life cancer therapies as an opportunity to improve care. We examined the extent to which oncologists differed in prescribing systemic therapies in the last 30 days of life., Methods: Using Surveillance, Epidemiology, and End Results-Medicare data, we identified patients who died of cancer from 2012 to 2017 (N = 17,609), their treating oncologists (N = 960), and the corresponding physician practice (N = 388). We used multilevel models to estimate oncologists' rates of providing cancer therapy for patients in their last 30 days of life, adjusted for patient characteristics and practice variation., Results: Patients' median age at the time of death was 74 years (interquartile range, 69-79); patients had lung (62%), colorectal (17%), breast (13%), and prostate (8%) cancers. We observed substantial variation across oncologists in their adjusted rate of treating patients in the last 30 days of life: oncologists in the 95th percentile exhibited a 45% adjusted rate of treatment, versus 17% among the 5th percentile. A patient treated by an oncologist with a high end-of-life prescribing behavior (top quartile), compared to an oncologist with a low prescribing behavior (bottom quartile), had more than four times greater odds of receiving end-of-life cancer therapy (OR, 4.42; 95% CI, 4.00-4.89)., Conclusions: Oncologists show substantial variation in end-of-life prescribing behavior. Future research should examine why some oncologists more often continue systemic therapy at the end of life than others, the consequences of this for patient and care outcomes, and whether interventions shaping oncologist decision-making can reduce overuse of end-of-life cancer therapies., (© 2024 The Author(s). Cancer published by Wiley Periodicals LLC on behalf of American Cancer Society.)

Context: Medications may become inappropriate for patients in the last phase of life and may even compromise their quality of life., Objective: To find consensus on recommendations regarding deprescribing of medications for adult patients with a life expectancy of six months or less., Methods: Experts working in palliative care or other relevant disciplines were asked to participate in this international Delphi study. Existing tools for deprescribing of medication in the last phase of life were integrated in a list of 42 recommendations regarding potential deprescription of various medication types. In two Delphi rounds, experts were asked to rate their agreement with each recommendation on a 5-point Likert-scale (strongly agree-strongly disagree). Recommendations were accepted, if at least 70% of the experts (strongly) agreed, the interquartile range (IQR) was one or less, and less than 10% strongly disagreed., Results: About 47 experts from 10 countries participated (response rate 53%). In most cases (76%), consensus was reached on deprescribing recommendations for patients with a life expectancy of six months or less. The highest level of consensus was reached for recommendations on the deprescription of diuretics in case of decreasing fluid intake or increasing fluid loss, lipid modifying agents if prescribed for primary prevention, and vitamin K antagonists and direct oral anticoagulants in case of high bleeding risk., Conclusion: A high level of consensus was reached on recommendations on potential deprescription of several medications for patients with a life expectancy of six months or less., (Copyright © 2024 The Authors. Published by Elsevier Inc. All rights reserved.)

Context: Home-Based Palliative Care (HPC) interventions have emerged as a promising approach to deliver patient-centered care in familiar surroundings, aligning with patients' preferences and improving quality of life (QOL)., Objectives: This review aimed to systematically assess the impact of HPC interventions on symptom management, QOL, healthcare resource utilization and place of death among patients with severe, progressive illnesses requiring end-of-life care., Methods: A comprehensive search was conducted across PubMed, Cochrane, and Scopus databases to identify relevant studies published between January 1, 2013, and December 31, 2023. Eligible studies included randomized controlled trials and clinical studies evaluating the effectiveness of HPC interventions compared to usual care. Risk of bias assessment was performed using Cochrane tools., Results: Nine publications meeting inclusion criteria were identified. Findings indicate that HPC interventions, delivered by specialized teams or integrated care approaches, significantly improve QOL and increase the likelihood of patients dying at home. Moreover, HPC is associated with reduced healthcare utilization, including fewer hospital admissions, emergency department visits, and shorter hospital stays. No significant differences were observed in symptom management., Conclusion: HPC interventions demonstrate significant benefits in addressing the complex needs of patients with advanced illnesses. These findings underscore the importance of integrating HPC into healthcare systems to optimize outcomes and promote quality end-of-life care. Future research should focus on expanding access to HPC services, enhancing interdisciplinary collaboration, and incorporating patient preferences to further improve care delivery in this vulnerable population., (Copyright © 2024 The Authors. Published by Elsevier Inc. All rights reserved.)

Background: As the global aging population expands, understanding older adults' preferences for place of death becomes pivotal in ensuring person-centered end-of-life care., Objective: This study aimed to investigate the influence of sociodemographic, health, and lifestyle-related factors on end-of-life care preferences of older adults in South Tyrol, Italy., Methods: Employing a cross-sectional design, a population-based survey was conducted with a stratified probabilistic sample of adults aged ≥ 75 years in South Tyrol (Autonomous Province of Bolzano/Bozen, Italy). From a randomly selected sample of 3,600 older adults, participants were invited to respond to a questionnaire that included items on older adults' preferences for place of death and socio-demographic and health- and lifestyle-related factors, including frailty (e.g., PRISMA-7). Descriptive and multinomial logistic regression analyses were performed., Results: The majority (55.3%) of the 1,695 older adults (participation rate: 47%) expressed a preference for dying at home and 12.7% indicated a desire for specialized end-of-life care in a healthcare facility. However, 27.9% refrained from disclosing their end-of-life care preferences. The factors influencing these preferences concerning the place of death included age, native language, educational level, living situation, and community. Compared to the preference of dying at own home or home of family or friends, older adults aged ≥ 85 years (OR = 0.57, P = 0.002) and living in an urban area (OR = 0.40, P < 0.001) were less likely to prefer dying at a hospital, palliative care unit, or hospice. Older adults living alone (OR = 1.90, P < 0.001), Italian-speaking (OR = 1.46, P = 0.03), and those with an educational level above high school (OR = 1.69, P = 0.002) were more likely to prefer dying at a hospital, palliative care unit, or hospice., Conclusions: End-of-life care preferences among older adults in South Tyrol were associated with socio-demographic, yet not health- and lifestyle-related factors. Recognizing and integrating these preferences is essential for developing, implementing, and evaluating interventions to promote advance care planning and provide effective, patient-centered end-of-life care., (© 2024. The Author(s).)

Background: Knowledge of health care utilization at the end of life in Parkinson's disease (PD) is sparse. This study aims to investigate end of life health care utilization, characterized by emergency room (ER) visits, receipt of specialized palliative care (SPC), and acute hospital deaths in a Swedish population-based PD cohort., Methods: We conducted a retrospective cohort study on deceased patients (≥ 18 years) with a PD diagnosis during their last year of life (n = 922), based on health care-provider data from Region Stockholm´s data warehouse, for the study period 2015-2021. Univariable and multivariable logistic regression analyses tested associations and adjusted Odds ratios (aORs) were calculated., Results: During the last month of life, approx. half of the cohort had emergency room (ER) visits and risk of frailty (measured by Hospital Frailty Risk Score) significantly predicted these visits (aOR, 3.90 (2.75-5.55)). In total, 120 people (13%) received SPC during their last three months of life, which positively associated with risk for frailty, (aOR, 2.65 (1.43-4.94, p = 0.002). In total, 284 people (31%) died in acute hospital settings. Among community-dwellers, male gender and frailty were strongly associated with acute hospital deaths (aOR, 1.90 (1.15-3.13, p = 0.01) and 3.70 (1.96-6.98, p < 0.0001))., Conclusions: Rates of ER visits at end of life and hospital deaths were relatively high in this population-based cohort. Considering a high disease burden, referral to SPC at end of life was relatively low. Sex-specific disparities in health care utilization are apparent. Identifying people with high risk for frailty could assist the planning of optimal end-of-life care for people with PD., (© 2024. The Author(s).)

Purpose: Adolescents and young adults (AYA) with cancer require highly individualized, age-specific end-of-life care. This study identified the characteristics of AYA patients with cancer receiving home-based palliative care and explored their unique needs and challenges compared with other age groups., Methods: This retrospective cohort study analyzed the medical records of AYA patients with cancer to compare home-based palliative care characteristics with those of older age groups. The study included 81 AYA patients with cancer aged 16-39 years who had received home palliative care at a single institution from 2013 to 2023. They were compared with 5,017 patients with cancer aged 40 years and older. Patient background, duration of home end-of-life care, sedation, and association with social factors were examined retrospectively from medical records., Results: The median age of AYA patients with cancer was 34 years; 65.4% were female. The primary cancer sites were gastrointestinal (34.6%) and thoracic (23.5%), with 80.0% at Stage IV. The median home care duration was 28.5 days, shorter than that for older patients (40 days) (p < 0.0001). Home care rates were similar between AYA and older patients (82.4% vs. 79.9%, p = 0.16). Sedation was more common in the 30-39 age group than in the 16-29 group (33.3% vs. 6.3%, p = 0.049)., Conclusion: AYA patients with cancer achieved a high rate of end-of-life care at home, although their duration of home care was shorter. The characteristics of home care varied depending on the primary site and age, highlighting the importance of creating highly individualized care plans., (© 2024. The Author(s), under exclusive licence to Springer-Verlag GmbH Germany, part of Springer Nature.)

Background: Cultural, religious and spiritual (CRS) needs become increasingly important to individuals as they approach the end of life. CRS needs often remain unmet for patients dying in an acute hospital setting. The 'Just Ask' quality improvement project was designed to explore barriers to routine assessment of CRS needs, and to design resources and intervention to support staff to increase assessment of these needs., Aims: The primary aim of the project was to increase the number of patients receiving end-of-life care in hospital with a documented CRS needs assessment from 43% (based on audit data) to greater than 50% over the 9-month project., Design: The study occurred in two phases.The scoping phase evaluated the current service, enablers, barriers and confidence in assessing CRS needs using an online staff survey and four staff focus groups. Results were analysed using qualitative content analysis, descriptive statistics and thematic analysis and informed the intervention phase.The intervention phase consisted of two Plan-Do-Study-Act (PDSA) cycles focusing on resource visibility/accessibility, organisational value placed on CRS needs assessment and staff education.Outcomes (documented CRS needs assessment) were measured by case notes review over 3 month periods - 1 year prior to and after the PDSA cycles. The impact of education interventions on staff confidence relating to CRS needs assessment were measured via an anonymous questionnaire., Outcome: Documented assessment of CRS needs increased from 43% to 57% in patients receiving end-of-life care in our hospital. Staff confidence scores in CRS needs assessment increased by 46-87%., Conclusions: The factors that influence the addressing of CRS needs in a busy hospital are multifactorial. Organisational culture, appropriate resource provision and visibility, and education are essential factors in supporting staff to recognise, understand and engage with CRS needs assessment in patients receiving end-of-life care in hospital., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2024. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Background: Effective medication management is crucial for ensuring timely pain and symptom control at the end of life. Dying in pain is a major concern for patients, yet some find less effective pain control at home. Family caregivers (FCGs) play a vital role in managing pain and symptom control for dying patients. However, the experience of administering medications at home for terminal-stage patients has not been widely recognized or understood. Our study aimed to explore the experiences of FCGs in administering medications to adult dying patients., Methods: We conducted a directed content analysis of data from 73 semi-structured interviews with FCGs across 19 Chinese provinces from 2021 to 2023. FCGs were recruited through the Voluntary Cooperative Network Research. We asked, "Could you recall the end-of-life care process for the patients?" We aligned the themes with the five issues identified by Wilson et al. (2018): administration, organizational skills, empowerment, relationships, and support., Results: FCGs in China exhibit concerns about over-engagement and empowerment in medication administration, concealing medication information from the patient, and medication accessibility. FCGs faced significant challenges in accurately identifying and addressing pain and symptoms, determining appropriate dosages, accessing effective medications, and managing the emotional stress associated with potential medication errors. Financial burden, medication regulatory restrictions, geographical inequality, and travel restrictions during COVID impeded patients and FCGs from accessing medication. A culturally specific finding is the use of alternative medicine at the end of life., Conclusion: Our findings build upon Wilson et al.'s framework and extend their insights on empowerment, highlighting the need for policies to support home-based palliative care professionals in training FCGs for effective medication administration., (© 2024. The Author(s).)

Background: The prevalence of dementia is increasing worldwide and many people with the condition require some level of palliative care. However, the trajectories of function and symptom burden in palliative care services at the end of life remain unclear. This study aimed to describe and compare the longitudinal trajectories of function and symptom burden among patients with dementia between hospital versus palliative community care services in the last two weeks of life., Methods: A retrospective cohort study used data from the Australian Palliative Care Outcomes Collaboration. Patients with dementia who died between 1 January 2013 and 31 December 2020 from the Australian Palliative Care Outcomes Collaboration. Four validated clinical instruments were used to collect outcomes on each individual's function and symptom distress and severity. Multilevel models were used to estimate the differences in clinical trajectories between hospital and community-based palliative care in the last two weeks of life., Results: Patients with dementia tended to have low levels of distress for most symptoms but increasing levels of functional impairment. There were no or only marginally significant differences in the symptom trajectories between the community and hospital groups (OR ranged from 0.57 to 1.97). Although clinical trajectories of function were relatively similar between two groups, statistically higher functional indicators were observed for people when admitted to community palliative care services (OR = 0.42 and 2.27, respectively)., Conclusions: Our findings suggest that community-based palliative care services can be as effective as hospital-based care for many patients with dementia nearing the end of life. With appropriate support for families, community-based care could serve as a viable alternative to hospital-based care for some patients in the final stages of dementia., (© 2024. The Author(s).)

The COVID-19 pandemic has brought to the forefront profound questions surrounding dying and the concept of a "good death". This qualitative case study, conducted in a health center in Quebec, Canada, severely affected by outbreaks during the pandemic's first wave, explores end-of-life care for older adults in retirement homes. Through thirty interviews with healthcare practitioners, researchers, and managers, we investigate the critical role of a pharmacological device referred to as the "baby bottle" in providing end-of-life care to older adults infected with COVID-19 in their homes. Drawing upon the boundary object framework, we examine the ambiguities surrounding the use of this device and explores its agency. In this unprecedented context, we argue that the device facilitated a form of death that could be described as "better than nothing", embodying practitioners' efforts to provide some dignity to the dying person, by minimally controlling the distress and ensuring a connection between the dying person and the care team. Additionally, it served as a means of coping with the pandemic's intolerable aspects, such as the exclusion of frail older adults for the supposed common good. This study raises questions about the legitimacy and normalization of such compensatory measure within under-resourced healthcare systems for older people experiencing a loss of autonomy., (Copyright © 2024. Published by Elsevier Ltd.)

Purpose: This review article is the first comprehensive evaluation of the available literature surrounding the education of death and dying in pharmacy schools. The purpose of this review was to describe the available literature and methods utilized regarding the emotional preparation for patient death in pharmacy education., Procedures: Searches were performed in three pharmacy databases to identify articles that contained descriptions of activities related to death and dying education in pharmacy curriculums., Findings: Eleven journal articles were reviewed, detailing activities in pharmacy education including simulations, didactic sessions, and an innovative "death over dessert" model. Evaluation methods varied, with surveys being most common, followed by reflection. Didactic courses demonstrated increased empathy and knowledge, while simulations compared to case-based activities improved skills, knowledge, and comfort levels with providing end-of-life care. Simulations often involved interprofessional groups, with third-year pharmacy students most evaluated., Conclusion: Pharmacy students were mainly exposed to death and dying scenarios through didactic courses or simulations, with limited longitudinal exposure. Research suggests that students may lack preparation for handling death-related situations, leading to trauma and dysfunction. While existing studies focus on outward effects like empathy, internal factors such as coping methods receive less attention. Unlike nursing and medicine literature, pharmacy education lacks comprehensive coverage of coping and emotional support strategies for death and dying scenarios. Additional focus should be placed on intentional incorporation of these topics into pharmacy curriculums., Competing Interests: Declaration of competing interest None., (Copyright © 2023. Published by Elsevier Inc.)

The care of a patient with neurologic disease at end-of-life requires expertise in addressing advance care planning, hospice, symptom management, and caregiver support. Neurologists caring for patients with advanced neurologic disease often identify changes in disease trajectory, functional status, or goals of care that prompt discussions of advance care planning and hospice. Patients nearing end-of-life may develop symptoms such as dyspnea, secretions, delirium, pain, and seizures. Neurologists may be the primary clinicians managing these symptoms, particularly in the hospitalized patient, though they may also lend their expertise to non-neurologists about expected disease trajectories and symptoms in advanced neurologic disease. This article aims to help neurologists guide patients and caregivers through the end-of-life process by focusing on general knowledge that can be applied across diseases as well as specific considerations in severe stroke and traumatic brain injury, amyotrophic lateral sclerosis, Parkinson's disease, and dementia., Competing Interests: None declared., (Thieme. All rights reserved.)

Objective: Pediatric deaths often occur within hospitals and involve balancing aggressive treatment with minimization of suffering. This study first investigated associations between clinical/demographic features and the level of intensity of various therapies these patients undergo at the end of life (EOL). Second, the work used these data to develop a new, broader spectrum for classifying pediatric EOL trajectories., Design: Retrospective, single-center study, 2013-2021., Setting: Four hundred sixty-one bed tertiary, stand-alone children's hospital with 112 ICU beds., Patients: Patients of age 0-26 years old at the time of death., Interventions: None., Measurements and Main Results: Of 1111 included patients, 85.7% died in-hospital. Patients who died outside the hospital were older. Among the 952 in-hospital deaths, most occurred in ICUs (89.5%). Clustering analysis was used to distinguish EOL trajectories based on the presence of intensive therapies and/or an active resuscitation attempt at the EOL. We identified five simplified categories: 1) death during active resuscitation, 2) controlled withdrawal of life-sustaining technology, 3) natural progression to death despite maximal therapy, 4) discontinuation of nonsustaining therapies, and 5) withholding/noninitiation of future therapies. Patients with recent surgical procedures, a history of organ transplantation, or admission to the Cardiovascular ICU had more intense therapies at EOL than those who received palliative care consultations, had known genetic conditions, or were of older age., Conclusions: In this retrospective study of pediatric EOL trajectories based on the intensity of technology and/or resuscitation discontinued at the EOL, we have identified associations between these trajectories and patient characteristics. Further research is needed to investigate the impact of these trajectories on families, patients, and healthcare providers., Competing Interests: Dr. Hollander received funding from Birth Justice. The remaining authors have disclosed that they do not have any potential conflicts of interest., (Copyright © 2024 by the Society of Critical Care Medicine and the World Federation of Pediatric Intensive and Critical Care Societies.)

Objectives: Androgen receptor targeted therapies (ARTs) are widely preferred over taxane chemotherapy due to their good tolerability and similar efficacy. However, there is a paucity of data that support the use of ART therapy or describe end-of-life (EOL) outcomes in patients with metastatic castration-resistant prostate cancer (mCRPC) with reduced performance status (PS) (European Cooperative Oncology Group [ECOG] ≥2)., Methods: We performed a retrospective, single-institution study of 142 patients with mCRPC who received ART therapy between 2010 and 2021. We assessed each record for baseline demographic and clinical information, ART treatment course, and survival and EOL outcomes. Our primary aim was to compare overall survival (OS) between the two groups (ECOG ≥2 vs 0 to 1), and our secondary aim was to describe EOL outcomes. Fisher exact tests and Wilcoxon signed-rank tests were used to compare baseline characteristics. Cox regression was used to compare OS for patients with ECOG ≥2 at the start of treatment with those who had an ECOG of 0 or 1. Descriptive analyses were performed to assess EOL outcomes between the groups., Results: Patients with mCRPC and decreased PS experienced shorter OS on ART compared with those with higher PS. Moreover, when examining EOL outcomes, a near majority of these patients died in the hospital, with a greater percentage among those with an ECOG ≥2., Conclusion: These findings highlight the need for continual assessment of PS, improved shared decision-making in ART treatment, and additional research exploring the association between PS and EOL outcomes., Competing Interests: V.G.P. is a full-time employee at Arvinas. He has received consulting fees from Seagen and Astellas. The other authors declare no conflicts of interest., (Copyright © 2024 Wolters Kluwer Health, Inc. All rights reserved.)

Flourishing is an increasingly common construct employed in the study of human wellbeing. But its appropriateness as a framework of wellbeing at certain stages of life is contested. In this paper, we consider to what extent it is possible for someone to flourish at the end of life. People with terminal illness often experience significant and protracted pain and suffering especially when they opt for treatments that prolong life. Certain aspects of human goods, however, that are plausibly constitutive of flourishing-such as meaning and purpose, deep personal relationships, and character and virtue-can be uniquely realised when life is ending. We argue that there is a qualified sense in which one can flourish at the end of life but that one must make important modifications to the criteria implicit in conventional conceptions of flourishing. We close with a discussion of the empirical assessment of wellbeing at the end of life and explore the possibility of introducing a flourishing measure in palliative care practice., (© 2024. The Author(s).)

Persons hospitalized for neurologic illness face multidimensional care needs. They can benefit from a palliative care approach that focuses on quality of life for persons with serious illness. We describe neurology provider "skills" to help meet these palliative needs: assessing the patient as a whole; facilitating conversations with patients to connect prognosis to care preferences; navigating neurologic illness to prepare patients and care partners for the future; providing high-quality end-of-life care to promote peace in death; and addressing disparities in care delivery., Competing Interests: None declared., (Thieme. All rights reserved.)

Objectives: The objective of this review was to explore the effectiveness of virtual reality (VR) technology in symptom management of patients at the end of life., Design: This is a systematic review and meta-analysis, which has been registered on PROSPERO (CRD42022344679)., Setting and Participants: Patients at the end of life., Methods: PubMed, Embase, Web of Science, the Cochrane Library, JBI, EBSCO, CNKI, Wanfang, and SinoMed were searched from inception to July 31, 2023. Search terms included "virtual reality" and "end-of-life." Articles were screened according to the inclusion and exclusion criteria. The random effects model was used to calculate the standardized mean difference (SMD), and the fixed effects model was used to calculate the mean difference (MD). The Cochrane Risk of Bias Tool 2.0 and JBI Evaluation tool were used to assess the risk of bias. The I 2 statistic was used to measure heterogeneity between studies. Forest plots were used for analysis., Results: A total of 234 patients at the end of life from 3 randomized controlled trials and 6 quasi-experimental studies were included. Compared with pre-VR intervention, the pain [standardized mean difference (SMD) -0.89, 95% CI -1.29 to -0.48, P < .05], shortness of breath [mean difference (MD) -0.98, 95% CI -0.98-0.51, P < .05], depression (MD -0.62, 95% CI -0.85 to -0.40, P < .05), and anxiety (SMD -0.93, 95% CI -1.50 to 0.36, P < .05) of patients at the end of life was significantly improved after VR intervention. However, there were no significant differences observed in tiredness, drowsiness, nausea, and lack of appetite., Conclusions and Implications: VR technology can be effective in improving pain, shortness of breath, depression, and anxiety in patients at the end of life. For tiredness, drowsiness, nausea, and lack of appetite, further research is required., Competing Interests: Disclosure The authors declare no conflicts of interest., (Copyright © 2024. Published by Elsevier Inc.)

Objectives: 1) Describe sexual and gender minority (SGM) older adults' current practices and concerns for communicating end-of-life (EOL) and daily care preferences in long-term care (LTC); 2) Elicit ideas about adapting a video-based intervention to facilitate communication., Methods: After consulting a community advisory board, we conducted two focus groups with SGM older adults ≥55 years of age recruited from a community-based service organization ( n  = 4) and a continuing care retirement community ( n  = 9). We audio-recorded, transcribed, and coded data using directed content analysis methods and summarized results descriptively., Results: Most participants were cisgender ( n  = 12), female ( n  = 11), lesbian ( n  = 10), White and non-Hispanic ( n  = 13); mean age was 70.62. Participants' concerns included discrimination, autonomy, chosen family, and community; they linked daily care preferences with personhood and quality of life. They advocated for building intentional community-based support networks to help peers discuss preferences and produce videos before LTC transition and ensure compliance after., Conclusions: For SGM older adults, asserting and protecting their full personhood, through daily care preferences, is essential to quality of life in LTC., Clinical Implications: Video-recorded statements of daily preferences, facilitated and supported by a peer network, could promote culturally competent, person- and community-centered care for SGM older adults in LTC settings.

Background: The transition of family caregivers of patients with end-of-Life cancer receiving palliative care from hospital to home is a complex and challenging process. This phase of care involves not only the physical and psychological health of the patient but also the role adaptation and emotional support of the family caregivers. To gain a deeper understanding of the various experiences and feelings during this process, we conducted a qualitative study., Methods: This study employed a descriptive phenomenological research method. The interviews focused on the specific experiences, challenges faced, support received, and coping strategies of family caregivers of patients with end-of-life cancer during the transition from hospital to home palliative care. All data were treated with strict confidentiality, and recordings and transcriptions were made with the participants' consent., Results: A total of 15 family caregivers participated. Four main themes and nine sub-themes were identified: complex transition process (anxiety about uncertainty, resistance to transition), discontinuity in care (insufficient discharge guidance, lack of continuous communication mechanisms), post-discharge continuous care needs (need for home care knowledge and skills, social and emotional support, grief counselling and death education), and personal growth and gains (enhanced coping ability, increased psychological resilience)., Conclusion: Family caregivers face numerous emotional, cognitive, practical, and social support challenges during the transition from hospital to home care. To improve the caregiving experience and quality of life, appropriate training and support should be provided to better meet the caregivers' needs., (© 2024. The Author(s).)

Purpose: To determine quality of life (QoL) domains in the months leading up to death associated with the receipt of aggressive care in the last month of life among patients with advanced cancer., Methods: A multisite, prospective cohort study conducted from January 2010 to May 2015 of 59 patients with advanced cancer (distant metastases and/or progression of disease following at least first-line chemotherapy) and poor prognosis (≤ 6 months) followed through death. At baseline, a median of 4 months from death, the McGill Quality of Life Questionnaire measured overall QoL and four QoL domains (i.e., interpersonal support, physical well-being, psychological, and existential). Postmortem data were collected via medical chart review and nurse/caregiver report and combined to capture the aggressiveness of end-of-life (EoL) care in patients' last month of life. Aggressive EoL care was defined as any receipt of care in an intensive care unit, being on a ventilator, or chemotherapy in the last month of life., Results: Patients with higher interpersonal support domain scores (i.e., rating the world as more "caring and responsive" to their needs and their felt support as more complete) received significantly less aggressive care in their last month of life (odds ratio = 0.39, 95% confidence interval 0.20 to 0.75, p = 0.004)., Conclusion: Perceived interpersonal support is the only QoL domain assessed that was associated with aggressiveness of care in the last month of life for patients with advanced cancer. Prioritizing caring and responsive relationships for patients may decrease receipt of aggressive EoL care., (© 2024. The Author(s), under exclusive licence to Springer-Verlag GmbH Germany, part of Springer Nature.)

Background: Many older people from minority ethnic groups experience inequalities towards the end of life, including barriers to accessing palliative care. With levels of international migration increasing, there is a need to understand these differences and consider the needs of minority ethnic groups in healthcare policies. This review aimed to map evidence on how older people from minority ethnic groups access and utilise palliative and end of life care, preferences for palliative and end of life care, experiences of palliative and end of life care, and how this varies between minority ethnic groups in different countries, and with different health conditions., Methods: Scoping review, following Joanna Briggs Institute (JBI) guidance. Searches of eight online databases (MEDLINE, Embase, Web of Science, CINAHL, PsycInfo, Assia, Scopus, and the Cochrane Library) and grey literature were undertaken in 2024. Qualitative sources that focused on older people from minority ethnic groups' and carers' access to and use of palliative and end of life care were included, as well as those focusing on healthcare professionals' experiences., Results: Twenty-three sources were included in the review, the majority of which were interview studies from the USA. Findings reflect a range of preferences, inequalities, facilitators and barriers to accessing palliative and end of life care, with themes relating to: (1) Knowledge of hospice and palliative care, (2) societal and structural issues, (3) language and health literacy, (4) migratory experiences, (5) trust in healthcare services and professionals, (6) religion and hope, and (7) cultural values., Conclusions: This review identified areas for healthcare providers to consider developing more culturally appropriate palliative and end of life care practice, including building trust and improving communication, sharing information, reducing language barriers, addressing stigma, and, if relevant, acknowledging the importance of culture and religion. Further qualitative research from an intersectional perspective, such as geographical location or socio-economic status, rather than race, ethnicity, and culture alone, is needed in more diverse geographical settings and on specific health conditions., (© 2024. The Author(s).)

Background: The term end-stage renal disease (ESRD) refers to the final stage of chronic kidney disease. Not all ESRD patients are suitable for dialysis treatment, which despite its advantages, is not without risks. Shared nephrologist-patient decision-making could be beneficial at this stage, yet little is known about such practices in Israel. This study aimed at examining the practice of shared decision-making (SDM) between nephrologists and ESRD patients in Israel, while exploring related conflicts, ethical dilemmas, and considerations., Methods: The descriptive-quantitative approach applied in this study included a validated questionnaire for nephrologists, based on Emanual and Emanual (1992). The survey, which was distributed via social-media platforms and snowball sampling, was completed by 169 nephrologists. Data analysis included t-tests for independent samples, f-tests for analysis of variance, and t-tests and f-tests for independence. Descriptive analysis examined attitudes towards SDM in end-of-life care for ESRD patients., Results: The findings show that the research sample did not include nephrologists who typically act according to the paternalistic decision-making style. Rather, 53% of the respondents were found to act in line with the informative decision-making style, while 47% act according to the interpretive decision-making style. Almost 70% of all respondents reported their discussing quality-of-life with patients; 63.4% provide prognostic assessments; 61.5% inquire about the patient's desired place of death; 58.6% ask about advance directives or power-of-attorney; and 57.4% inquire about cultural and religious beliefs in end-of-life treatment. Additionally, informative nephrologists tend to promote the patients' autonomy over their health (P < 0.001); they are also in favor of conservative treatment, compared to paternalistic and interpretive nephrologists, and use less invasive methods than other nephrologists (P = 0.02)., Conclusions: Nephrologists in Israel only partially pursue an SDM model, which has the potential to improve quality-of-care for ESRD patients and their families. SDM programs should be developed and implemented for increasing such practices among nephrologists, thereby expanding the possibilities for providing conservative care at end-of-life., (© 2024. The Author(s).)

Background: French laws governing end-of-life medical practices forbid euthanasia and affirm patients' right to deep and continuous sedation until death. Cultural traditions and disparities in health care provision, as in overseas France, could limit the enforcement of such laws and modify end-of-life medical practices., Aim: This research aims to describe end-of-life medical decisions in overseas France and to compare with those described in mainland France., Methods: A retrospective study of a random sample of adult patients who died between March 2020 and February 2021 was conducted in four overseas French departments. Physicians who certified the deaths were asked to describe end-of-life care and medical decisions in a questionnaire., Results: A total of 1815 deaths were analysed over 8730 questionnaires sent. Withholding treatments was the most frequent decision (41%), treatment for pain or symptoms was intensified for a third of patients, Deep and continuous sedation until death was implemented in 13.3% cases. The use of drugs to deliberately end life was mentioned in 1.3% deaths. At least one decision was made in 61.6% deaths. More decisions that may hasten death were made before predictable deaths. Intensification of pain and symptoms treatment was more frequent in 2022 than in 2010. Deep and continuous sedation was introduced by law in 2016 without prejudice to other decisions., Conclusion: Physicians in overseas France have implemented recent changes in end-of-life laws, including deep and continuous sedation. Comparisons with 2010 mainland France survey show a better implementation of palliative medicine in 2022, with higher proportions of treatment withholding., (© 2024. The Author(s).)

Background: While home is frequently expressed as the favorite place of death (PoD) among terminally ill cancer patients, various factors affect the fulfillment of this wish. The determinants of the PoD of cancer patients in countries without healthcare system-integrated palliative and supportive care have not been studied before. This study aimed at identifying the predictors of the PoD of patients who suffer from advanced cancer by developing a reliable predictive model among who received home-based palliative care in Iran as a representative of the countries with isolated provision of palliative care services., Methods: In a cross-sectional study, electronic records of 4083 advanced cancer patients enrolled in the Iranian Cancer Control Center (MACSA) palliative homecare program, who died between February 2018 and February 2020 were retrieved. Multivariable binary logistic regression analysis as well as subgroup analyses (location, sex, marital status, and tumor topography) was performed to identify the predictors of PoD., Results: Of the 2398 cases included (mean age (SD) = 64.17 (14.45) year, 1269 (%52.9) male), 1216 (50.7%) patients died at home. Older age, presence and intensity of medical homecare in the last two weeks and registration in the Tehran site of the program were associated with dying at home (P < 0.05). Gynecological or hematological cancers, presence and intensity of the calls received from the remote palliative care unit in the last two weeks were predictors of death at the hospital (p < 0.05). The model was internally and externally validated (AUC = 0.723 (95% CI = 0.702-0.745; P < 0.001) and AUC = 0.697 (95% CI = 0.631-0.763; P < 0.001) respectively)., Conclusion: Our model highlights the demographic, illness-related and environmental determinants of the PoD in communities with patchy provision of palliative care. It also urges policymakers and service providers to identify and take the local determinant of the place of death into account to match the goals of palliative and supportive services with the patient preferences., (© 2024. The Author(s).)

Background: Sedation at the end of life is used to relieve distressing symptoms including agitation and delirium. Standard care may include infused benzodiazepines or antipsychotics. These agents often result in deep sedation with loss of interaction with loved ones, which may be distressing., Objective: The DREAMS (Dexmedetomidine for the Reduction of End-of-life Agitation and for optiMised Sedation) trial aimed to compare the sedative and antidelirium effects of the alpha-2 agonist dexmedetomidine, a novel palliative care sedative, compared with midazolam, a benzodiazepine when administered by subcutaneous infusion at the end of life, with doses of both agents targeting lighter, or potentially interactive sedation., Methods: Participants were recruited from adult inpatients admitted for end-of-life care under a palliative care team in regional New South Wales, Australia. Inclusion criteria included patients older than 18 years, with a preference for lighter sedation at the end of life. Exclusion criteria included severe cardiac dysfunction (contraindication to dexmedetomidine). Participants consented and were placed on a treatment-pending list. Upon experiencing terminal deterioration, patients were randomized to either arm 1 (dexmedetomidine) or arm 2 (midazolam) as their treatment arm. These treatments were administered by continuous subcutaneous infusion. The level of consciousness and agitation of the patients were measured by the Richmond Agitation-Sedation Scale-Palliative version and the Memorial Delirium Assessment Score. Richmond Agitation-Sedation Scale-Palliative version assessments were performed by both nursing and medical staff, while Memorial Delirium Assessment Score assessments were carried out by medical staff only. Families and patients were asked to complete, as able, a patient comfort assessment form, to gauge perceptions of distress. Data were collected and matched with the breakthrough medication doses administered, along with qualitative comments in the medical record. In addition, the study tracked symptoms and patient functional status that were recorded as part of the Palliative Care Outcomes Collaborative, a national tracking project for monitoring symptom outcomes in palliative care., Results: The DREAMS trial was funded in May 2020, approved by the ethics committee in November 2020, and started recruiting participants in May 2021. Data collection commenced in May 2021 and is anticipated to continue until December 2024. Publication of results is anticipated from 2024 to 2026., Conclusions: The evidence base for sedative dosing in palliative care for distress and agitation is not robust, with standard care based primarily on clinical experience and not robust scientific evidence. This study is important because it will compare a standard and a novel sedative used in end-of-life treatment. By assessing the potential efficacy and benefits of both, it seeks to optimize the quality of dying by providing targeted sedation that can improve the communication between dying patients and their loved ones., Trial Registration: Australia New Zealand Clinical Trials Register ACTRN12621000052831; https://uat.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=380889., International Registered Report Identifier (irrid): DERR1-10.2196/55129., (©Benjamin Thomas, Greg Barclay, Wing-Shan Angela Lo, Judy Mullan, Kylie Mansfield. Originally published in JMIR Research Protocols (https://www.researchprotocols.org), 04.09.2024.)

Pediatric palliative care focuses on improving the quality-of-life in children with severe illnesses and their families, addressing relief of pain and other physical symptoms, as well as emotional, social and spiritual support. Its approach is comprehensive and multidisciplinary. Severe neurological diseases are life-limiting and threatening, significantly affecting the well-being of the child. The families of these children face significant stress and need support to make complex decisions about them. This includes advance care planning, setting therapeutic goals, and end-of-life decisions. Early intervention can improve quality-of-life, reduce unnecessary hospitalizations, and provide emotional support for the family. Coordination between different health services is essential to ensure patient-centered care. Education and training of health professionals in this field are essential to improve the care of these children.

Purpose: Data on end-of-life care (EOLC) quality, assessed through evidence-based quality measures (QMs), are difficult to obtain. Natural language processing (NLP) enables efficient quality measurement and is not yet used for children with serious illness. We sought to validate a pediatric-specific EOLC-QM keyword library and evaluate EOLC-QM attainment among childhood cancer decedents., Methods: In a single-center cohort of children with cancer who died between 2014 and 2022, we piloted a rule-based NLP approach to examine the content of clinical notes in the last 6 months of life. We identified documented discussions of five EOLC-QMs: goals of care, limitations to life-sustaining treatments (LLST), hospice, palliative care consultation, and preferred location of death. We assessed performance of NLP methods, compared with gold standard manual chart review. We then used NLP to characterize proportions of decedents with documented EOLC-QM discussions and timing of first documentation relative to death., Results: Among 101 decedents, nearly half were minorities (Hispanic/Latinx [24%], non-Hispanic Black/African American [20%]), female (48%), or diagnosed with solid tumors (43%). Through iterative refinement, our keyword library achieved robust performance statistics (for all EOLC-QMs, F1 score = 1.0). Most decedents had documented discussions regarding goals of care (83%), LLST (83%), and hospice (74%). Fewer decedents had documented discussions regarding palliative care consultation (49%) or preferred location of death (36%). For all five EOLC-QMs, first documentation occurred, on average, >30 days before death., Conclusion: A high proportion of decedents attained specified EOLC-QMs more than 30 days before death. Our findings indicate that NLP is a feasible approach to measuring quality of care for children with cancer at the end of life and is ripe for multi-center research and quality improvement.

Background: Systemic anticancer treatment (SACT) for advanced cancer patients with limited prognosis before death is associated with high toxicity and reduced quality of life. Guidelines discourage this approach as low-value care. However, a significant number of patients continue to receive SACT in the last 30 days of life., Materials and Methods: A retrospective study was carried out at the University Hospital Krems, encompassing the analysis of patients who were diagnosed with a solid tumor and died between 2017 and 2021, with a particular focus on the use of end-of-life (EOL) SACT., Results: A total of 685 patients were included in the study. SACT was applied in 342 (49.9%) patients, of whom 143 (41.8%, total population: 20.9%) patients received SACT within the last 30 days of life. Median time from last SACT to death was 44.5 days. The analysis of potential factors impacting the administration of EOL SACT revealed the following significant findings: type of SACT [P < 0.001, targeted therapy odds ratio (OR) 5.09, 95% confidence interval (CI) 2.26-11.48; chemotherapy/targeted therapy OR 3.60, 95% CI 1.47-8.82; immune checkpoint inhibitor OR 2.32, 95% CI 1.37-3.92], no referral to palliative care (PC) (P = 0.009, OR 1.86, 95% CI 1.16-2.96), no admission to PC ward (P < 0.001, OR 2.70, 95% CI 1.67-4.35), and poor Eastern Cooperative Oncology Group (ECOG) performance status (≥2, P < 0.001, OR 3.35, 95% CI 1.93-5.83)., Conclusion: The timing of SACT near the EOL is significantly influenced by several factors, including the type of SACT, referral to PC services, admission to PC unit, and ECOG performance status. These findings underscore the complexity of treatment decisions in advanced cancer care and highlight the need for personalized, patient-centered approaches that consider both clinical and patient-related factors to optimize care at the EOL., (Copyright © 2024 The Authors. Published by Elsevier Ltd.. All rights reserved.)

Purpose: Intensive care units (ICUs) have significant palliative care needs but lack a reliable care framework. This umbrella review addresses them by synthesising palliative care practices provided at end-of-life to critically ill patients and their families before, during, and after ICU admission., Methods: Seven databases were systematically searched for systematic reviews, and the umbrella review was conducted according to the guidelines laid out by the Joanna Briggs Institute (JBI)., Results: Out of 3122 initial records identified, 40 systematic reviews were included in the synthesis. Six key themes were generated that reflect the palliative and end-of-life care practices in the ICUs and their outcomes. Effective communication and accurate prognostications enabled families to make informed decisions, cope with uncertainty, ease distress, and shorten ICU stays. Inter-team discussions and agreement on a plan are essential before discussing care goals. Recording care preferences prevents unnecessary end-of-life treatments. Exceptional end-of-life care should include symptom management, family support, hydration and nutrition optimisation, avoidance of unhelpful treatments, and bereavement support. Evaluating end-of-life care quality is critical and can be accomplished by seeking family feedback or conducting a survey., Conclusion: This umbrella review encapsulates current palliative care practices in ICUs, influencing patient and family outcomes and providing insights into developing an appropriate care framework for critically ill patients needing end-of-life care and their families., (© 2024. The Author(s).)

Objectives: Malignant large bowel obstruction (LBO) is a frequent complication affecting women with gynecologic cancers and is an indication for emergent surgery. However, the life expectancy and subsequent medical care utilization are unknown. We sought to estimate overall survival (OS) following colostomy and describe subsequent healthcare utilization among patients with advanced gynecologic malignancies., Methods: We conducted a retrospective analysis of patients with advanced gynecologic cancers who underwent colostomy with palliative intent due to LBO at our institution between March 2014 and January 2023. Summary statistics were used to describe the clinical and demographic characteristics of the study population. OS was estimated using the Kaplan-Meier method, and we defined healthcare utilization at the end-of-life using criteria published by the National Quality Forum., Results: A total of 78 patients were included. The median age at the time of surgery was 61 (range: 34-83), and most patients had recurrent ovarian, fallopian tube, or primary peritoneal cancer (n = 51, 65.4%), followed by cervical cancer (n = 16, 20.5%), and uterine cancer (n = 10, 12.8%). The median Charlson comorbidity index was 3 and median postoperative length of stay was five days (range: 1-26). The median follow-up for all patients was 4.5 months (range: 0.07-46.2), and the median OS was 4.5 months (95% CI: 2.9-6.0), including 12 patients (15.4%) with <30-day OS and 21 (26.9%) with <60-day OS. In the last 30 days of life, 62.7% of patients were re-admitted to the hospital, 53.0% were seen in the emergency department, and 18.5% were admitted to an intensive care unit., Conclusions: A significant proportion of patients died within 60 days of surgery, and many had high healthcare utilization at the end of life., (Copyright © 2024 Elsevier Inc. All rights reserved.)

Background: Training in palliative and end-of-life (EOL) care provision represents a critical topic in health professional curricula for ensuring a workforce prepared to provide safe and person-center care at the end of one's life. This manuscript describes the incorporation of a simulation-based learning experience (SBLE) and the evolution of a professional elective course for student pharmacists related to palliative and EOL care., Educational Activity: A SBLE was incorporated into a long-standing professional pharmacy elective course in palliative and EOL care. The decision to incorporate and utilize SBLE to introduce topics of deprescribing, communication, prioritization of quality of life, and establishing goals of care was utilized in recognition of a need to establish a psychologically safer environment to allow students to explore these topics prior to the advanced pharmacy practice experiences., Discussion: Incorporation of SBLE in this professional elective course resulted in a favorable effect on course enrollment. Observations from structured debriefing and anecdotal student feedback suggest that students had trouble tailoring care plans to the circumstances, particularly in focusing on de-escalating medication treatments, emphasizing the need for training in the care for this patient population which incorporate considerations for goals of care. Lessons related to the influence of environmental distractions, expressions of discomfort conveyed by body language, and challenges in prioritizing and focusing on tailoring care plans given evolving information at hand were identified., Implications: We describe the effective implementation and utilization of SBLE in a professional elective focused on palliative and EOL care for student pharmacists. Future directions include research initiatives designed to evaluate the impact of simulation on key competencies and areas developed through participation in such exercises. Systematic evaluation of outcomes and competencies related to team dynamics, sympathetic communication, professional identity formation and resiliency and preparation for dealing with death and dying in experiential learning are planned., (Copyright © 2024 Elsevier Inc. All rights reserved.)

Background: Registered nurses report the experience of delivering end of life care in emergency departments as challenging. The study aim was to understand what it is like to be a registered nurse providing end of life care to an older person in the emergency department., Methods: A hermeneutic phenomenological study was conducted in 2021, using semi-structured interviews with seven registered nurses across two hospital emergency departments in Queensland, Australia. Thematic analysis of participants' narratives was undertaken., Findings: Seven registered nurses were interviewed; six of whom were women. Participant's experience working in the emergency department setting ranged from 2.5-20 years. Two themes were developed through analysis: (i) Presenting the patient as a dying person; and (ii) Mentalising death in the context of the emergency department., Conclusions: Nurses providing end of life care in the emergency department draw upon their personal and aesthetic knowing to present the dying patient as a person. The way death is mentalised suggests the need to develop empirical knowing about ageing and supportive medical care and ethical knowing to assist with the transition from resuscitation to end of life care. Shared clinical reflection on death in the emergency department, facilitated by experts in ageing and end of life care is recommended., Competing Interests: Declaration of Competing Interest Prof Julia Crilly is a reviewer for AUEC., (Copyright © 2024 The Authors. Published by Elsevier Ltd.. All rights reserved.)

This pilot study explored the feasibility of a Forever Heart Program and the impact it has on oncology nurses' perception of the dying experience and their own compassion competence. Guided by Kubler-Ross's framework, the Forever Heart Program consists of a gemstone keepsake offered to patients and families during end-of-life care to support the grieving process. A mixed-methods approach utilized pretest/posttest design in a convenience sample of oncology nurses in an academic medical center over a 3-month period. The study collected demographics, Compassion Competence Scale scores, and qualitative responses via survey and an optional focus group. Twenty-five nurses participated in the presurvey, and 14 participated in the postsurvey. Seven nurses attended the focus groups. Overall, compassion competence scores were high, both pre and post. Qualitative themes included appreciation, connection, positive nursing, patient and family experience/relationships, grieving guidance, program benefits, and process opportunities. Although the study did not show statistically significant differences in compassion, it did show program feasibility and the potential positive impact that keepsakes like the Forever Heart Program can have on nurses and their role in the dying experience., Competing Interests: The authors have no conflicts of interest to disclose., (Copyright © 2024 by The Hospice and Palliative Nurses Association. All rights reserved.)

Metastatic breast cancer (MBC) is a complex disease with variability in disease subtype, length of survival, treatment selection, symptom burden, and, ultimately, end-of-life (EOL) care. Influencing factors that contribute to the complexity of this disease are socioeconomic factors, provider differences, and patient and family preferences. Because of this variability, it is challenging for health care providers to know when treatments are no longer helpful but contribute to a poor quality of end-of-life care and a poor death experience for both patients and their families. Determining the unique point, based on their own values and goals, at which patients and their family members feel that MBC treatment becomes unhelpful and unwanted, is difficult to ascertain. Of the 25 individuals who participated in the Quality of Death and Dying survey, 16 individuals participated in an interview to provide a reflection of the patient's EOL experience and its congruence with their wishes. Four major categories emerged as primary priorities essential to high quality end-of-life care, that is, resilience, communication, support, and knowledge. Without tailored and precise care, patients with MBC will continue to receive prolonged, inappropriate, and costly treatment, resulting in a potentially unacceptable poor-quality EOL and death experience., Competing Interests: The authors have no conflicts of interest to disclose., (Copyright © 2024 by The Hospice and Palliative Nurses Association. All rights reserved.)

Neuropalliative care as a clinical speciality aims to address the unique end-of-life needs and concerns of patients with neurologic disease. Although literature has outlined clinical hurdles, a more nuanced understanding of how neuropalliative care was experienced, conceptualized, and enacted could provide context and depth to better outline practice and research priorities. This article presents findings from an ethnographic study of neuropalliative care conducted in a university-affiliated, tertiary care neurological hospital in Canada with a dedicated neuropalliative consultation service. Specifically, this article examines how clinical hurdles outlined in the neuropalliative literature were experienced and addressed by multiple stakeholders, including patients, families, and clinicians. These clinical hurdles include locating the scope of neuropalliative care, ascertaining the impact of prognostic uncertainty and poor recognition of the dying patient, and navigating the tensions between curative and palliative philosophies. In the discussion, the implications of these clinical hurdles are addressed, concluding with reflections on the role of ethnography, palliative care in the context of functional changes, and broadening approaches to uncertainty., Competing Interests: The authors have no conflicts of interest to disclose., (Copyright © 2024 by The Hospice and Palliative Nurses Association. All rights reserved.)