End-of-life Care Research Articles

Surgical Treatment Intensity at the End of Life in Patients With Cancer: A Systematic Review

Objective: To synthesize evidence of surgical treatment intensity, defined as a measure of the quantity of invasive procedures, received by patients in patients with cancer within a defined time period around the ‘end of life’ (EoL). Background: Concern regarding overly ‘aggressive’ care or high health care utilization at the EoL, particularly in cancer, is growing. The contribution surgery makes to the quality and cost of EoL care in cancer has not yet been quantified. Methods: This PROSPERO registered systematic review used PRIMSA guidelines to search electronic databases for observational studies detailing surgical intensity at the EoL in adult cancer patients. Intensity was compared by disease, individual characteristics, geographical region, and palliative care involvement. A risk of bias tool assessed quality and a narrative synthesis of findings was completed. Results: In total, 39 papers were identified in this search. Up to 79% of patients underwent invasive procedures in the last month of life. Heterogeneity in patient groups, inclusion criteria, and EoL time periods lead to huge variation in results, with treatment intention often not identified. Patient, geographical, and pathological factors, alongside involvement of palliative/hospice care, were all identified as contributors to treatment intensity variation. Conclusions: A significant proportion of patients with cancer undergo invasive and costly invasive procedures at the EoL. There is significant reporting heterogeneity, with variation in patient inclusion criteria and EoL timeframes, demonstrating uncertainty within the literature. Identification of the context where surgical treatment intensity at the EoL is potentially inappropriate is not currently possible.

End-of-Life Health Care Service Use and Cost Among Medicare Decedents With Neurodegenerative Diseases.

Although neurodegenerative diseases are a leading cause of death, little is known about health care utilization and cost during the end-of-life (EoL) period or how it compares with that of other life-limiting conditions. We aimed to describe and compare resource utilization among US Medicare decedents with neurodegenerative diseases with decedents with cancer. We conducted a retrospective study of Medicare Part A and B beneficiaries with Alzheimer disease (AD), Parkinson disease (PD), or amyotrophic lateral sclerosis (ALS) who died in 2018. Decedents diagnosed with malignant brain tumors or pancreatic cancer served as non-neurodegenerative comparators. Descriptive analyses examined demographic and clinical characteristics in the last year of life. The probabilities and associated costs of emergency department (ED), inpatient, skilled nursing facility (SNF), and hospice utilization during the last 12 and 6 months of life were also compared between persons with neurodegenerative diseases and cancer, adjusting for sociodemographic factors and comorbidity burden. A total of 1,126,799 Medicare beneficiaries died in 2018, of which 357,926 had a qualifying diagnosis. Persons with neurodegenerative diseases were older and more frequently received Medicaid assistance than persons with brain or pancreatic cancer. In all groups, health care service utilization increased over the last year of life, and total costs were predominantly attributable to inpatient care. In the last 6 months of life, neurologist care was infrequent among patients with neurodegenerative disease (AD: 1.5%; PD: 8.6%; ALS: 32.0%). Persons with neurodegenerative diseases as compared to persons with malignant brain tumors also had greater odds of ED use (AD: adjusted odds ratio [aOR] 1.17, 95% CI 1.11-1.23; PD: aOR 1.18, 95% CI 1.11-1.25; ALS: aOR 1.11, 95% CI 1.01-1.23), lower odds of hospitalization (AD: aOR 0.64, 95% CI 0.60-0.68; PD: aOR 0.65, 95% CI 0.61-0.69; ALS: aOR 0.33, 95% CI 0.30-0.37), and lower odds of hospice enrollment (AD: aOR 0.33, 95% CI 0.31-0.36; PD: aOR 0.33, 95% CI 0.31-0.36; ALS: aOR 0.41, 95% CI 0.36-0.46). The findings were similar in pancreatic cancer. Persons with neurodegenerative diseases in the United States are more likely to visit the ED and less likely to use inpatient and hospice services at EoL than persons with brain or pancreatic cancer. These group differences may stem from prognostic uncertainty and reflect inadequate EoL care practices, requiring further investigation to ensure more timely palliative care and hospice referrals.

QLTI-19. PEDIATRIC NEURO-ONCOLOGISTS NAVIGATING AN ADULT WORLD: A TALE OF TWO CENTERS

Abstract BACKGROUND Adolescent and Young Adult Neuro-Oncology(AYA-NO) patients are a distinct cohort with an overlap of tumors found in childhood and adulthood. For adult patients with pediatric-type Central Nervous System tumors, optimal work-flow to manage these patients is unclear. METHODS We examine the work-flow of pediatric neuro-oncologists starting AYA-NO clinics within two high volume adult institutions: the University of Miami(Florida, USA) and the Princess Margaret Cancer Centre(Toronto, Canada). RESULTS Over 18 months, the AYA-NO clinics managed 167 patients total with several key differences emerging in both institutions between the pediatric and adult work-flows. Adult providers commonly have neurology backgrounds, while pediatric providers mostly have hematology/oncology backgrounds. In pediatrics, providers typically meet the patient inpatient before pathology results, adult providers meet their patients in outpatient settings once histopathology results are available. Outpatient management in pediatric oncology centers typically includes labs, infusion centers, provider rooms, and social workers in one area while adults, due to the larger volume, have these services on separate units. Chemotherapy related differences included the primary provider for inpatient admissions and the emphasis of adult institutions on outpatient administration when feasible. Psychosocial factors such as the variety of caregivers, increased opportunity for patient autonomy in decision-making, and the increased fragmentation in care magnifies the importance of providers forming a strong rapport with AYA-NO patients. End of life care is vastly different including the inability for adult patients to receive palliative treatment in hospice care and the availability medically-assisted death. CONCLUSION Pediatric neuro-oncologists building AYA-NO workflows within adult settings can provide unique expertise for AYA-NO patients with pediatric-type tumors. Growing AYA-NO clinics can benefit from allocating AYA CNS specific resources such as chemotherapy/targeted therapy provider education, a dedicated hospital/clinic space, chemotherapy nursing, a care coordinator, and a social worker with experience treating this patient population.

Enhancing medical students’ understanding of end-of-life care ethics and law through video-triggered expert-led debriefing: a two-stage study

BackgroundTaiwan enacted the Hospice Palliative Care Act in 2000 and the Patient Autonomy Act in 2016. However, medical education has emphasized palliative care skills over ethical and legal integration. This study developed a curriculum for pre-clinical students, focusing on applying these issues in end of life care.MethodsThe participants were fourth-year medical students enrolled in a 1-credit medical ethics and law course at a medical school in Taiwan. The study employed a two-stage design, combining quantitative pretests and posttests with qualitative data obtained through the Know-Want-Learn strategy. The curriculum, called the video-triggered expert-led debrief module, included a video scenario on end of life care, insights shared by three interprofessional experts, and students debrief. In 2021, 168 students participated, and a quantitative questionnaire using a pretest-posttest design was applied to assess the curriculum’s impact on students’ knowledge and attitudes toward end of life care. In 2022, 157 students participated, and the survey used open-ended questionnaires (the Know-Want-Learn strategy) to evaluate what students already knew and what they wanted to know before the module, as well as what they had learned afterward.ResultsIn 2021, we collected 166 (98.8%) valid responses in the quantitative questionnaire. Seven of the eight knowledge-based questions and four of the seven learning motivation items showed significant improvement in the posttest (P < 0.05). In 2022, 81 (51.6%) valid responses were obtained from the qualitative questionnaire. Before the module, students’ understanding was superficial and focused on literal meanings. Three themes emerged in what they wanted to know: medical decision-making, ethics and laws, and empathetic communication, with eight subthemes. After the module, three themes and six subthemes were identified in the “what I learned” section. Students reported gaining knowledge related to ethics and laws, and empathetic communication.ConclusionsThe video-triggered expert-led debrief module can effectively teach the application of medical ethics and laws in end of life care. This approach has shown positive results among young medical students. It enhances students’ learning motivation, deepens their understanding of ethics and laws, and empathetic communication. It further encourages them to reflect deeply on the meaning of healthcare.

Use of Hospice and End-of-Life Care Quality Among Medical Centers with High Versus Lower Specialist Palliative Care Reach Among People with Heart Failure: An Observational Study.

Background: Rates of specialist palliative care (SPC) vary among Veterans Affairs Medical Centers (VAMCs) for people with advanced heart failure (aHF). We evaluated the associations between facility rates of SPC reach and the quality of end of life (EOL) care received among this population. Methods: We conducted a retrospective cohort study among 3681 people with aHF who died in 83 VAMCs from 2018 to 2020. We used multilevel logistic regression to derive SPC reach (i.e., the predicted probability or rate of SPC) for each VAMC adjusting for demographic and clinical characteristics. We examined the associations between high (top 20%) versus lower (bottom 80%) SPC reach and receipt of inpatient hospice and family-reported EOL care quality and the interactions between receiving SPC and VAMC reach on study outcomes. Results: The sample included 97.9% male, 61.6% White, and 32.2% Black adults (mean age = 72.9 ± 10.9 years). Rates of "Excellent" EOL care quality, but not inpatient hospice care, were significantly higher in VAMCs in the top 20% of reach (predicted probability: inpatient hospice = 0.56 vs. 0.51, p = 0.32; "Excellent" EOL care quality 0.69 vs. 0.60, p = 0.04). There was a significant interaction between VAMC reach, receipt of SPC, and inpatient hospice (p < 0.001) but no interaction between VAMC reach, receipt of SPC, and EOL care quality (p = 0.049). Conclusion: Families of patients with aHF who die in VAMCs with higher SPC reach report better EOL care quality regardless of whether or not they receive SPC. Research is needed to investigate factors beyond receiving SPC associated with these EOL outcomes.

Lived experiences of palliative care physicians on the impacts of language and cultural discordance on end-of-life care across Ontario, Canada: a qualitative study using the intersectionality-based policy framework

BackgroundLanguage and cultural discordance refer to when a physician and patient do not share the same language or culture. This can create barriers to providing high-quality care at the end-of-life (EoL). This study explores the intersections of language, culture, geography, and care model in EoL care from the perspectives of palliative care physicians.MethodsIn this exploratory-descriptive qualitative study, semi-structured interviews (1-h) were conducted virtually between July and November 2023. We interviewed 16 family physicians with experience providing linguistic and/or culturally discordant palliative/EoL care in various urban, suburban, and rural regions of Ontario, who practiced at community and hospital outpatient clinics, home-based care, or long-term care homes. We used reflexive thematic analysis to identify themes across the interviews guided by the intersectionality theoretical framework.ResultsWe identified three themes 1) Visible barriers to care access due to the inability to communicate accurate information and insufficient time spent during appointments with patients; 2) Invisible barriers to care access, shaped by the Eurocentric approach to palliative care and physicians’ lack of awareness on cultural discordance; 3) Workplace supports that currently exist and interventions that physicians would like to see. Community physicians following fee-for-service models were less likely to have access to professional interpreter services. Physicians in long-term care emphasized resource limitations to providing culturally-appropriate care environments.ConclusionCultural discordance required awareness of personal biases, while language discordance hindered basic communication. These findings will be useful in informing clinical practice guidelines and mobilizing policy-level change to improve palliative/EoL care for patients from linguistic and cultural minority groups.

Good quality end-of life care for people with an intellectual disability: A critical interpretive synthesis protocol.

People with an intellectual disability face inequality accessing healthcare that extends to end-of-life care. Furthermore, end-of-life care for people with an intellectual disability is more complex than that for the general population. This protocol sets out how our review will explore the available evidence and identify the key characteristics of care that are required for people with an intellectual disability to have a good end-of-life experience. A critical interpretive synthesis approach will be adopted, combining some elements of a systematic review with interpretive synthesis. This approach has been selected as it allows a diverse body of literature to be considered. Furthermore, it is compatible with theory generation allowing new insights to emerge in an iterative process. Electronic databases and grey literature sources will be searched using pre-defined search terms. Following initial title and abstract screening, eligible papers will undergo full text screening. Papers that are deemed to be 'fatally flawed' will be excluded and remaining papers appraised for relevance. Resultant papers will be included in the sampling frame from which data extraction will occur. An existing framework outlining key factors in the provision of excellent end-of-life care to people with an intellectual disability will be used to support data extraction and synthesis. Data extracted will be integrated into a synthesising argument in the form of a theoretical framework. This will identify the key characteristics in the provision of care that are required for people with an intellectual disability to have a good end-of-life experience. The developing theoretical framework will guide further selection of relevant literature to fill any conceptual gaps until saturation is reached. Our review will add to the existing body of evidence, shedding light on the key factors necessary in the provision of care to ensure that people with an intellectual disability have a good end-of-life experience.

The impact of in-house education on staff confidence in delivering palliative and end-of-life care: a service evaluation.

Palliative and end-of-life care (EoLC) education is available to all community and hospital healthcare staff in one NHS trust in the north-east of England. It is also available to care home and domiciliary care staff within the geographical area of the trust. This service evaluation assessed the effect of current in-house education on staff confidence levels in delivering palliative and EoLC. It also examined staff perceptions of how attendance at these courses impacted on the palliative and EoLC patients receive across the locality. A mixed-methods approach was undertaken. Anonymous data were collected via surveys (n=238) sent out in March 2023 covering educational courses that were delivered from 1 January to 31 December 2022 with a 13% response rate. Quantitative data were analysed using descriptive statistics. Qualitative data were explored using Braun and Clarke's (2012) six-stage approach to thematic analysis. A second staff member was asked to review the data to increase the trustworthiness of the study. Staff confidence levels in delivering palliative and EoLC increased by 19% (somewhat confident) and 23% (extremely confident) following attendance at trust education. Staff perceived that those patients received better palliative and EoLC as a result their attendance at these courses. The qualitative data identified five main themes: symptom control, psychological support, holistic care, patient advocacy, and advance care planning. Limitations of the study included the low survey response rate and lack of exploration of patient/carer perceptions directly. Palliative and EoLC education can increase staff confidence levels in care delivery and, as perceived by staff, results in better care for patients receiving palliative and EoLC. These findings provide evidence for the trust to consider making palliative and EoLC training mandatory, which could also be considered more widely regionally and nationally.

Understanding European patterns of deprescribing antithrombotic medication during end-of-life care in patients with cancer

BackgroundEven though antithrombotic therapy (ATT) probably has little or even negative effect on the well-being of patients with cancer near the end of life, it is often continued until death, possibly leading to excess bleeding complications, increased disease burden, reduced quality of life and higher healthcare costs. AimTo explore and describe European practice patterns and perspectives of healthcare professionals from different disciplines and specialties on ATT in the end-of-life care (EOLC) of patients with cancer. MethodsWe performed a two-week international cross-sectional survey study using flash-mob research methodology. Eligible were healthcare professionals from different institutions across Europe, who prescribed ATT and/or dealt with EOLC of patients with cancer. The survey comprised three parts, including a series of choice sets (hypothetical scenarios involving a set of characteristics changing in level [e.g., high vs. low thrombotic risk]) on ATT management in EOLC. The discrete choice experiment analysis was conducted using multinomial logistic regression. ResultsOut of 467 pre-registrants, 208 participated in the survey from 4 to 18 July 2023. The majority (53 %) considered a patient with cancer as in EOLC when life expectancy is below 3 months. Respondents reported seeing or treating 20 patients with cancer on ATT in EOLC per year (IQR 10–50). The median estimated frequency of considering ATT deprescription per healthcare professional was 10 times per year (IQR 4–10), while the frequency of actual deprescription was 5 times per year (IQR 2–10). Twenty percent of respondents had never deprescribed ATT in the context of EOLC. Across the eight choice sets, five respondents (2.7 %) found deprescribing inappropriate in any scenario. Deprescribing was more often considered in patients with poor ECOG-performance status, high bleeding risk and low-molecular-weight heparin use as opposed to oral ATT. Haemato-oncology and cardiovascular medicine specialists were more inclined to deprescribe antiplatelet therapy than other specialties. ConclusionOur study describes medical decision-making regarding ATT in EOLC of patients with cancer. Healthcare professionals' perspectives and practice patterns vary, and some preferences appear associated with the therapists' professional focus and region of practice.

Terminal care of villages

Japan’s population is declining and experts believe that the loss of some declining villages will have a nationwide impact. To tackle this, new planning theories are crucial. At the Department of Architecture, National Institute of Technology, Oyama College, Associate Professor Heewon Choi has been exploring the concept of ‘terminal care of villages’. He believes it is important for planners from government agencies to work with the local community to make decisions about the future of such villages and that this will also help other countries experiencing population-related challenges. Choi believes that end of life care is something that urban entities should receive and that related decisions should be made by the local community from the region in question rather than by experts, based on data. Choi is seeking to define the need for terminal care of villages and will achieve this by analysing objective data and the structure of the decision-makers in village planning. The data collected by Choi and the team includes geographic information system (GIS) data, population data and spatial-data acquired through questionnaires, interviews and workshops. Once the large bank of data was collated across numerous locations, the researchers were able to perform statistical analyses. Choi has encountered challenges in the form of disseminating the idea of ‘terminal care of villages’ among Government officials and fellow researchers who have questioned the ways in which Choi’s policy is novel. But where existing policies aim to provide livelihood support for residents and boost newcomer numbers, Choi’s concept focuses on supporting struggling villages with a view to eventual closure of the settlement.

The effect of end-of-life care awareness education on the knowledge, attitudes and behaviours of intensive care nurses: A randomized controlled trial.

Education in end-of-life care (EoLC) is essential for improving the knowledge, attitudes and behaviours of intensive care nurses. This study aimed to evaluate the effect of online awareness education, based on the End-of-Life Nursing Education Consortium, on the knowledge levels, attitudes and behaviours of intensive care nurses. This single-centre randomized controlled study. This study was performed in a tertiary intensive care unit in a university-affiliated hospital. Seventy-six intensive care nurses were selected and equally randomized. In the education, the group was given an EoLC awareness education programme on an online platform as 40-60-min sessions once a week for 4 weeks. The descriptive Information Form, EoLC Knowledge Test and the Nurses' Attitudes and Behaviours towards the EoLC Scale were used. In the study, intensive care nurses' knowledge, attitude and behaviour levels towards EoLC were evaluated before and after 4 weeks (±3 days) following the education. When the mean post-education scores of the nurses in the education group were compared with the control group, it was found that their mean scores on the EoLC Knowledge Test (p = .001, Cohen's d = 1.354, 95% CI = 3.240-6.549), the attitude sub-dimension (p = .001, Cohen's d = 1.520, 95% CI = 4.510-7.858), the behaviour sub-dimension (p = .001, Cohen's d = 1.425, 95% CI = 3.206-6.214) and the total attitude and behaviour (p = .001, Cohen's d = 1.927, 95% CI = 8.408-13.643) were statistically significantly higher than those of the control group. This study showed that EoLC awareness education positively affected nurses' knowledge, attitudes and behaviours. Accordingly, planning EoLC awareness education online at regular intervals may be recommended for intensive care nurses. Intensive care nurses may be given online EoLC awareness education to positively affect their knowledge, attitudes and behaviours about EoLC. Online EoLC education can be effective in terms of reaching a large number of nurses, time and cost.

Facilitators and Barriers in Palliative and End-of-Life Care in Prisons.

With an aging prison population facing various chronic diseases, the importance of palliative and end-of-life care (EOLC) in correctional facilities is heightened. This systematic review aimed to identify facilitators and barriers to palliative and EOLC in prisons. PubMed, Web of Science, Scopus, and Cochrane databases were searched for primary qualitative studies (January 2014 to December 2022) in English. Eligible studies focused on people in prison, health care professionals, administrators, and governors regarding palliative or EOLC provision within prison settings. Five studies were included, from Australia, France, the United Kingdom, and the United States, whose overall quality was moderate to high. Key facilitators included access to family, support from prison staff, specialized care availability, and cultural/spiritual support. Barriers encompassed discomfort, patient-clinician relationship constraints, time limitations, protocol uncertainty, restricted patient agency, negative attitudes, inequality, conflicting priorities, and lack of grief support. Addressing these barriers and leveraging facilitators will be crucial in ensuring equitable access to compassionate EOLC for individuals experiencing incarceration. Policymakers, health care providers, and correctional authorities must prioritize the enhancement of palliative care services within prisons, supported by further research and targeted interventions to address disparities and optimize care provision.

Adding Life to Years: Comprehensive end-of-life care for all

This study builds upon our 2019 End-of-Life Care (EoLC) research, focusing on enhancing the quality and accessibility of EoLC in Hong Kong. With the introduction of the Advance Decision on Life-sustaining Treatment Bill, we identified the need for a more comprehensive approach to address the full spectrum of care needs beyond medical decisions. Our methodology leveraged insights from diverse stakeholders across various sectors and disciplines. The study revealed critical gaps in the system, service provision, and education related to EoLC. We propose six key recommendations: (1) develop a territory-wide standardised advance care planning (ACP) framework, (2) formulate an EoLC service strategy, (3) establish clear communication pathways to connect EoLC services, (4) promote public life and death education, (5) equip community professionals with ACP training, and (6) enhance university curriculum and on-the-job training in health and social care. These recommendations aim to create a cohesive EoLC ecosystem that respects individual preferences, optimises resource allocation, and addresses the challenges of an aging population. By implementing changes at system, service, and education levels, we envision EoLC in Hong Kong to be delivered in a person-centred, dignified, and coordinated manner, ensuring compassionate care at the final stage of life.

A cross-sectional study on advance care planning documentation attitudes during national advance care planning week in a South-East Asian country

BackgroundThrough advocacy initiatives such as roadshows during “National ACP Week”, the Agency for Integrated Care (AIC) had increased advance care planning (ACP) engagement since 2011. Project Happy Apples (PHA), a community initiative project led by medical students from the National University of Singapore, also conducted a public exhibition to raise ACP awareness during this period. This study aimed to investigate and identify predictors of attitudes towards ACP documentation among ‘ACP Week’ respondents which may be used to formulate strategies to increase ACP documentation in Singapore.MethodsA cross-sectional study on ACP documentation attitudes of 262 respondents during local roadshows were conducted. Multiple logistic regression models were built to investigate the associations between demographic variables and attitudes toward ACP documentation.ResultsThe mean age was 43.5 years (SD = 17.4), 79 (30.15%) were males and 49 (18.7%) were healthcare professionals (HCP). 117 (44.66%) respondents had prior experience with serious illness and 116 (44.27%) had heard of ACP. Age was a significant predictor of readiness to sign official papers naming nominated healthcare spokesperson (NHS) (OR = 1.04, 95%CI: 1.02–1.07). Experience with serious illness was a significant predictor of readiness to discuss end-of-life (EOL) care with healthcare professionals (HCP) (OR = 3.65, 95%CI: 1.36–11.61). Being female was a significant predictor for readiness to speak to their nominated healthcare spokesperson about EOL care (OR = 7.33, 95%CI: 2.06–46.73). Subgroup analyses revealed that those aged 20–39 were less likely to speak to their healthcare professional about or sign official papers regarding EOL care. We also found that being a healthcare professional does not necessitate better or worse attitudes.ConclusionAdvocacy programs tailored to targeting respondents of different age groups and prior experience with serious illness may improve the efficacy of advocacy efforts.

End-of-life doulas: A systematic integrative review and redirection.

End-of-life doulas (EOLD) are an emerging role providing non-medical support and advocacy for the dying and their families. Research about EOLD is new and currently highlights a need for more clarity in role definition and application. This review aims to comprehensively analyze existing knowledge regarding EOLD and their role in end-of-life care. A systematic and comprehensive search of nine bibliographic databases identified all published academic articles related to EOLD (as named, self-identified, and/or trained) research from inception to June 2023. This review utilized an integrative approach and textual narrative synthesis to summarize the existing body of research findings related to EOLD. Twenty-five articles were identified, representing multiple disciplines including health and medicine, public health, social/behavioral sciences, and humanities. Research on EOLD has rapidly increased in recent years and is showing signs of maturation. The review focuses specifically on summarizing the breadth and depth of identified research on EOLD and critically analyzes emergent themes from the review: Application, Perception, Identity, and Future Research Directions. This review provides the most comprehensive review of the research literature on EOLD to date. Thematic findings for future research directions have provided the basis of a redirected research agenda to guide the field going forward. There is still a need to clarify who EOLD are and how they are being conceptualized by multiple stakeholders. Future research must address these missing voices to fully grasp the value and unique role that EOLD contribute to EOL care.

Organisation and management of multi-professional care for cancer patients at end-of-life: state-of-the-art from a survey to community and hospital-based professionals.

Providing timely and satisficing End-of-Life care (EOLC) is a priority for healthcare systems since aging population and chronic diseases are boosting the global demand for care at end-of-life (EOL). In OECD countries the access to EOLC is insufficient. In Italy, the average rate of cancer patients assisted by the palliative care (PC) network at EOL was 28% in 2021, with high variability in the country. Among theItalian regions offering the best coverages, Tuscany has a rate of about 40%, but intraregional variation is marked as well. The study aims to explore the delivery of EOLC to adult cancer patients in public facilities in the Tuscany region through survey data collection among professionals. Two online surveys were delivered to Directors of community-based PC Functional-Units (FUs) and Directors of hospital-based medical-oncology units. All FU Directors responded to the survey (n = 14), and a response rate of 96% was achieved from hospital-unit Directors (n = 27). The results highlight the availability of numerous dedicated services, but reveal heterogeneity among and within organisations, including variations in the professionals involved, pathways, and tools adopted. Care continuity is supported by institutionalized collaboration between hospital and community settings, but hindered by fragmented care processes and heterogeneous transition pathways. Late referral to PC is perceived as a major constraint to EOLC. Developing structured pathways for patient transition to end-stage PC is crucial, and practices/processes should be uniformly implemented to ensure equity. Multi-professional care should be facilitated through tailored supporting tools. Both hospital-unit and FU Directors suggest developing shared pathways between organisations/professionals (82% and 80% respectively) and digital information sharing (61% and 80% respectively). Hospital and community-based professionals have similar perceptions about the concerns and challenges to EOLC provision in the region, but community-based professionals are more sensitive to the importance of improving communication on PC to the public and early discussing EOLC with caregivers. This finding suggests the need of enhancing hospital personnel's awareness about these issues. Professional training and the capacity to assess patients' needs and preferences should be improved. The identified needs can inform future research and interventions to improve the quality and outcomes of EOLC for cancer patients.

Updates in palliative care of gynecologic oncology patients

Purpose of review This review assesses the impact of early integration of palliative care and the disparities that exist among patients with gynecologic malignancies. It also highlights the recent advances in symptom management, goals of care communication, and end of life care. Recent findings Although palliative care has been utilized earlier, there are still barriers to its integration both nationally and worldwide, manifesting as predominantly late hospice referrals and aggressive care at the end of life. However, there are increasing efforts to promote earlier integration and discussion around goals of care through multidisciplinary approaches. Apart from symptom burdens, patients with gynecologic malignancies experience financial toxicity that impact various aspects of their lives, leading to potentially harmful choices to mitigate costs. A growing area of interest in palliative care is the realm of psychedelic-assisted therapy, which has shown benefits in treating advanced cancer patients with depression. Summary While significant strides have been made in incorporating palliative care earlier, continued research in palliative care is needed to address symptomatic and psychosocial suffering worldwide.

Role of caregivers being trained in assisting in end of life care - Latin American perspective.

Palliative care in Latin America is evolving, but training for informal caregivers remains underexplored. This review summarizes recent interventions to educate or train caregivers in end-of-life care. The literature search identified three interventions published by 2023, two with reception evaluations, all with small sample sizes and no control groups. Needs of caregivers have been more frequently described and include training on aspects of the disease, nursing skills, how to handle patients´ and own emotions; help in navigating the complex healthcare systems in Latin America; help in conversations about the end of life and dying, still taboos in the region; help in finding additional caregivers or other types of support to make the caregiving role sustainable over time for the caregiver. Interventions mainly focused on emotional support and identifying additional caregivers without guilt; two included nursing skills training. There are very few formal interventions described and evaluated to assist caregivers in end-of-life care in Latin America described in the literature. This illustrates the rather invisible but very important role of these important stakeholders in the care for patients. Multidimensional interventions should be developed and evaluated to support caregivers.

European Society of Intensive Care Medicine guidelines on end of life and palliative care in the intensive care unit.

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.

Caring for Hindu patients at the end-of-life: A narrative review.

This paper reviews the existing literature to identify specific challenges that may arise in the context of providing palliative and end-of-life (EOL) care for Hindu patients in the physical, psychological, and spiritual domains. We offer practical strategies where appropriate to mitigate some of these challenges. We review how the Hindu faith impacts EOL decision-making, including the role of the family in decision-making, completion of advance directives, pain management, and decisions around artificial nutrition and hydration (ANH) and cardiopulmonary resuscitation (CPR). The PubMed, MEDLINE Complete, Cochrane, and Embase databases were searched for articles using the search strings combinations of keywords such as Palliative care, Hindu, Hinduism, End of Life Care, India, Spirituality, and South Asian. Once inclusion criteria were applied, 40 manuscripts were eligible for review. Our results are organized into the following 4 sections - how Hindu religious or spiritual beliefs intersect with the physical, psychological, and spiritual domains: and decision-making at the EOL. Hindu beliefs, in particular the role of karma, were shown to impact decision-making regarding pain management, ANH and CPR, and advance directive completion. The complexity of Hindu thought leaves a significant role for interpretation and flexibility for individual factors in decision-making at the EOL.