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BackgroundLarge, international cohort studies generate high-level evidence, but are resource intense. In end-of-life care such studies are scarce. Hence, planning for future studies in terms of data on screening, recruitment, retention and survival remains a challenge.ObjectivesThe aim was to describe recruitment, follow-up and survival in a multinational study of patients' and relatives' expectations, concerns and preferences at the end of life.MethodsIn this 11-country cohort study with six months follow-up patients, >18 years old, were included on the basis of an adapted "surprise question" to assess patients´ end of life status. Patients were required to be aware of their limited life expectancy. We collected patient questionnaires (baseline and 1 month), and searched medical records for the date of death. One relative per patient was invited to participate.Results26735 patients were screened for inclusion, 3065 (11%) were found eligible and were invited to participate, 1509 chose to participate, i.e. 6% of those initially screened. A total of 699 patients (49%) participated in the 1-month follow-up, with proportions varying according to survival time, from 20% if the patient died at month 2, to 75% if the patient died at month 6. Survival time was not associated with patient gender or age, but with diagnosis, country of residence and healthcare setting.ConclusionApproximately 20 times the desired cohort size had to be screened for eligibility. Prognostication was difficult, we noted a wide distribution of survival after inclusion. Patients' ability to complete follow-up questionnaires declined well before death.

Worldwide 56·8 million people need palliative care (PC), and Africa shows the highest demand. This study updates the 2017 review of African PC development, using a scoping review methodology based on Arksey and O'Malley's framework and the PRISMA-ScR checklist. The review was conducted across PUBMED, CINAHL, Embase, government websites, and the African PC Association Atlas, from 2017 to 2023, charting its progress using the new WHO framework for PC Development, which, in addition to Services, Education, Medicines, and Policies, two new dimensions were incorporated: Research and Empowerment of people and Communities. Of the 4.420 records, 118 met the inclusion criteria. Findings showed increased adult specialised services (n = 675), and 15 of 54 countries have paediatric services. Nonetheless, the ratio of services per population mostly remains under 0,10 per 100.000 inhabitants. PC education was included in undergraduate curricula in 29 countries; despite the rise in morphine availability (28 countries), median consumption remains under 3 mg/per capita/year, and 14 countries presented stand-alone policies. Publications on PC development increased, and 26 countries have National PC Associations. Notwithstanding progress since 2017, significant hurdles remain, highlighting the need for ongoing research and policy development to ensure equitable access to palliative care in Africa.

Abstract Context Palliative care (PC) in most African countries remains under-assessed. Benin has piloted the implementation of a set of indicators proposed by the WHO to measure PC development. Objectives To examine the current status of PC in Benin. Methods A workshop with stakeholders was organized to assess the WHO indicators in the Beninese context. Indicators were rated based on relevance and feasibility, data sources were agreed upon, and a survey was adapted. Data were collected between March and May 2023. Results There is emerging community involvement in PC through the presence of patients’ rights promoters, as well as a political commitment expressed in the National PC strategy, the inclusion of PC services in the list of basic health services, and an assigned national authority –within the Ministry of Health–responsible for PC. Although no PC-oriented research has been documented, the celebration of the National PC Conference represents the first step to ground PC delivery in evidence. The reported annual consumption of opioids is 0.18 (ME) milligrams per capita, 34% of healthcare establishments have essential medicines for pain and PC, and 16.5% of patients with palliative needs have access to oral morphine. To date, no medical or paramedical schools offer PC training, and there is no official specialization in palliative medicine for doctors. PC is provided by 11 specialist teams (0.08/100,000 inhabitants), none of which provides pediatric care. Conclusion Despite growing political, professional, and community commitments to palliative care, there are challenges in education, research, essential medicines, and access to PC services.

Abstract Palliative care is essential to global health services as it improves the quality of life of patients, their families and caregivers. The ATLANTES Global Observatory of Palliative Care (University of Navarra) was created a decade ago to promote a positive attitude towards patients with advanced illness in society and medicine. To do so, and over the past 15 years, ATLANTES has mapped palliative care data worldwide using public health, macro and comparative perspectives in different atlases. These have enabled data to be contextualised and good examples to be identified concisely and graphically. Atlases have been widely employed as advocacy tools within international institutions and ministries of health. While the aim and the perspective have remained unalterable over time, the methods and design have evolved throughout the publications from sober cartography and static infographics to big interactive data visualisation web tools. By embracing technology, ATLANTES has developed an open-access web mapping tool reuniting information from regional atlases, favouring global access to data. In 2022, matching the increasingly recognised need for robust monitoring of palliative care worldwide, ATLANTES became a WHO Collaborating Centre for the Global Monitoring of Palliative Care Development. This attempt to bridge the gap and ensure equitable care information in countries with limited palliative care access has resulted today in more accessible, self-explanatory, and visually appealing palliative care data.

Background: Family is a crucial social institution in end-of-life care. Family caregivers are encouraged to take on more responsibility at different times during the illness, providing personal and medical care. Unpaid work can be overburdening, with women often spending more time in care work than men. Objectives: This study explored multiple views on the family’s role in end-of-life care from a critical perspective and a relational autonomy lens, considering gender in a socio-cultural context and applying a relational autonomy framework. It explored patients, relatives and healthcare providers’ points of view. Design: This qualitative study was part of the iLIVE project, involving patients with incurable diseases, their relatives and health carers from hospital and non-hospital sites. Methods: Individual interviews of at least five patients, five relatives and five healthcare providers in each of the 10 participating countries using a semi-structured interview guide based on Giger–Davidhizar–Haff’s model for cultural assessment in end-of-life care. Thematic analysis was performed initially within each country and across the complete dataset. Data sources, including researchers’ field notes, were translated into English for international collaborative analysis. Results: We conducted 158 interviews (57 patients, 48 relatives and 53 healthcare providers). After collaborative analysis, five themes were identified across the countries: family as a finite care resource, families’ active role in decision-making, open communication with the family, care burden and socio-cultural mandates. Families were crucial for providing informal care during severe illness, often acting as the only resource. Patients acknowledged the strain on carers, leading to a conceptual model highlighting socio-cultural influences, relational autonomy, care burden and feminisation of care. Conclusion: Society, health teams and family systems still need to better support the role of family caregivers described across countries. The model implies that family roles in end-of-life care balance relational autonomy with socio-cultural values. Real-world end-of-life scenarios do not occur in a wholly individualistic, closed-off atmosphere but in an interpersonal setting. Gender is often prominent, but normative ideas influence the decisions and actions of all involved.

Resumen: Los cuidados paliativos son «responsabilidad ética de los sistemas de salud». La OMS propone la educación médica de grado y posgrado como una dimensión para evaluar su desarrollo en un país. En Latinoamérica, solo el 15% de las facultades de medicina tienen una asignatura de Cuidados Paliativos. En Argentina no existe aún consenso sobre contenidos básicos en los currículos de grado en Medicina. Método: este estudio buscó consensuar cómo debe ser un currículo de grado en Medicina Paliativa en Argentina utilizando la metodología Delphi. Se recogieron datos sociodemográficos (2019–2020), profesión, años de experiencia, educación universitaria, contenidos temáticos, modalidad pedagógica, plan de estudios y carga horaria. El análisis cuantitativo se realizó utilizando porcentajes y valores medios para indicar el nivel de acuerdo en las escalas de 5 puntos. Los rangos intercuartílicos se calcularon para proporcionar indicadores de acuerdo y consenso. Se realizó el análisis temático de contenidos. Resultados: se convocaron 250 expertos, de los cuales 85 respondieron a 2 rondas de consulta. Se alcanzó un alto grado de acuerdo para proponer 10 recomendaciones generales, dinámicas, flexibles, adaptadas a diferentes contextos. El 98% consideró necesaria la enseñanza de los cuidados paliativos de manera transversal y sugirieron una asignatura específica contextualizada a situaciones de pacientes crónicos y en fin de vida. Sin embargo, se observó una tensión entre el modelo de formación tradicional y la educación basada en competencias. El aprendizaje experiencial es apropiado, pero se recomendó la unión de la teoría con la práctica. Conclusión: por primera vez en Argentina se convocó un consenso de expertos que definió un conjunto de recomendaciones sobre contenidos, metodología de enseñanza, ciclo académico y competencias en cuidados paliativos. Abstract: Palliative care is an “ethical responsibility of healthcare systems”. The WHO proposes undergraduate and postgraduate medical education as one dimension to assess its development in a country. In Latin America, 15% of medical schools have an undergraduate palliative care course. In Argentina, there is still no consensus on the essential content of undergraduate medical curricula. Method: This study sought to reach a consensus on what an undergraduate curriculum in palliative medicine should look like in Argentina using the Delphi methodology (2019–2020). Sociodemographic data, profession, years of experience, university education, thematic content, pedagogical modality, study plan and hourly load were collected. Quantitative analysis was performed using percentages and mean values to indicate the level of agreement on 5-point scales. Interquartile ranges were calculated to provide indicators of agreement and consensus. Thematic content analysis was carried out. Results: Two hundred fifty experts were convened, of whom 85 responded to two rounds of consultation. A high degree of agreement was reached on ten general, dynamic, and flexible recommendations adapted to different contexts. 98% considered it necessary to teach palliative care transversally and suggested a specific course contextualised to chronic patients and end-of-life situations. However, there was a tension between the traditional training model and competency-based education. Experiential learning is appropriate, but linking theory and practice was recommended. Conclusion: For the first time in Argentina, a consensus of experts was reached, which defined a set of recommendations on content, teaching methodology, academic cycle and competencies in palliative care.

Objective. This paper assesses the availability and quality of death certificate data in Latin America and the feasibility of using these data to study place of death and associated factors. Methods. In this comparative study, we collected examples of current official death certificates and digital data files containing information about all deaths that occurred during 1 year in 19 Latin American countries. Data were collected from June 2019 to May 2020. The records for place of death and associated variables were studied. The criteria for data quality were completeness, number of ill-defined causes of death and timeliness. Results. All 19 countries provided copies of current official death certificates and 18 of these registered the place of death. Distinguishing among hospital or other health care institution, home and other was possible for all countries. Digital data files with death certificate data were available from 12 countries and 1 region. Three countries had data considered to be of high quality and seven had data considered to be of medium quality. Categories for place of death and most of the predetermined factors possibly associated with place of death were included in the data files. Conclusions. The quality of data sets was rated medium to high in 10 countries. Hence, death certificate data make it feasible to conduct an international comparative study on place of death and the associated factors in Latin America.

Abstract Background In contrast to typical measures employed to assess outcomes in healthcare such as mortality or recovery rates, it is difficult to define which specific outcomes of care are the most important in caring for dying individuals. Despite a variety of tools employed to assess different dimensions of palliative care, there is no consensus on a set of core outcomes to be measured in the last days of life. In order to optimise decision making in clinical practice and comparability of interventional studies, we aim to identify and propose a set of core outcomes for the care of the dying person. Methods Following the COMET initiative approach, the proposed study will proceed through four stages to develop a set of core outcomes: In stage 1, a systematic review of the literature will identify outcomes measured in existing peer reviewed literature, as well as outcomes derived through qualitative studies. Grey literature, will also be included. Stage 2 will allow for the identification and determination of patient and proxy defined outcomes of care at the end of life via quantitative and qualitative methods at an international level. In stage 3, from a list of salient outcomes identified through stages 1 and 2, international experts, family members, patients, and patient advocates will be asked to score the importance of the preselected outcomes through a Delphi process. Stage 4 consists of a face-to-face consensus meeting of international experts and patient/family representatives in order to define, endorse, and propose the final Core Outcomes Set. Discussion Core Outcome Sets aim at promoting uniform assessment of care outcomes in clinical practice as well as research. If consistently employed, a robust set of core outcomes for the end of life, and specifically for the dying phase, defined by relevant stakeholders, can ultimately be translated into best care for the dying person. Patient care will be improved by allowing clinicians to choose effective and meaningful treatments, and research impact will be improved by employing internationally agreed clinically relevant endpoints and enabling accurate comparison between studies in systematic reviews and/or in meta-analyses.

Los cuidados paliativos (CP) se incorporaron en la salud pública de muchos países con gran variabilidad e inequidad. Argentina posee una incidencia de cáncer media-alta y el Programa Nacional de Cuidados Paliativos no identifica la población diana. El instrumento NECPAL CCOMS-ICO© identifica enfermos con necesidades paliativas. Combina una pregunta (¿Le sorprendería que su paciente falleciera en el próximo año?) con indicadores específicos. El objetivo fue identificar precozmente y mejorar la asistencia integral de pacientes con cáncer y necesidades paliativas. Se reporta la implementación de una intervención sanitaria (Programa Modelo de Atención Paliativa). MÉTODOS: Se incluyó a todos los pacientes oncológicos del hospital universitario (julio de 2014- julio de 2016). Se entrevistó a sus 10 médicos en 69 sesiones individuales con el NECPAL. Se diseñó un programa demostrativo en 4 etapas. RESULTADOS: Hubo 317 pacientes, 57% con necesidades paliativas (NECPAL+). Como resultado de la implementación, el 94% (n=172) de 183 pacientes NECPAL+ fueron derivados a CP (frente a 28% antes del programa); media de seguimiento de 7,4 meses y 183 fallecieron (28 en domicilio). Se superaron estándares de calidad de estructura, proceso y resultado. DISCUSIÓN: Por primera vez en Argentina, esta intervención sanitaria incluyó a casi la totalidad de pacientes con cáncer y necesidades paliativas tempranas en un programa de asistencia continua hasta su fallecimiento en el hospital o domicilio

Poor communication contributes to morbidity and mortality, not only in general medical care but also at the end oflife. This leads to issues relating to symptom control and quality of care. As part of an international project focused on bereaved relatives’ perceptions about quality of end-of-life care, we undertook a quality improvement (QI) project in a general hospital in Córdoba city, Argentina.By using two iterative QI cycles, we launched an educational process and introduced a clinical mnemonic tool, I-PASS, during ward handovers. The introduction of the handover tool was intended to improve out-of-hours care.Our clinical outcome measure was ensuring comfort in at least 60% of dying patients, as perceived by family carers, during night shifts in an oncology ward during the project period (March–May 2019). As process-based measures, we selected the proportion of staff completing the I-PASS course (target 60%) and using I-PASS in at least 60% of handovers. Participatory action research was the chosen method.During the study period, 13/16 dying patients were included. We received 23 reports from family carers about the level of patient comfort during the previous night.Sixty-five per cent of healthcare professionals completed the I-PASS training. The percentage of completed handovers increased from 60% in the first Plan-Do-Study-Act (PDSA) cycle to 68% in the second one.The proportion of positive reports about patient comfort increased from 63% (end of the first PDSA cycle) to 87% (last iterative analysis after 3 months). Moreover, positive responses to ‘Did doctors and nurses do enough for the patient to be comfortable during the night?’ increased from 75% to 100% between the first and the second QI cycle.In conclusion, we achieved the successful introduction and staff training for use of the I-PASS tool. This led to improved perceptions by family carers, about comfort for dying patients.