Palliative care progress in Benin: a situation analysis using the WHO development indicators.

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.

How to Advance Palliative Care Research in South America? Findings From a Delphi Study.

CONTEXT: Progress in palliative care (PC) necessarily involves scientific development. However, research conducted in South America (SA) needs to be improved. OBJECTIVES: To develop a set of recommendations to advance PC research in SA. METHODS: Eighteen international PC experts participated in a Delphi study. In round one, items were developed (open-ended questions); in round two, each expert scored the importance of each item (from 0 to 10); in round three, they selected the 20 most relevant items. Throughout the rounds, the five main priority themes for research in SA were defined. In Round three, consensus was defined as an agreement of ≥75%. RESULTS: 60 potential suggestions for overcoming research barriers in PC were developed in round one. Also in Round one, 88.2% (15 of 17) of the experts agreed to define a priority research agenda. In Round two, the 36 most relevant suggestions were defined and a new one added. Potential research priorities were investigated (open-ended). In Round three, from the 37 items, 10 were considered the most important. Regarding research priorities, symptom control, PC in primary care, public policies, education and prognosis were defined as the most relevant. CONCLUSION: Potential strategies to improve scientific research on PC in SA were defined, including stimulating the formation of collaborative research networks, offering courses and workshops on research, structuring centers with infrastructure resources and trained researchers, and lobbying governmental organizations to convince about the importance of palliative care. In addition, priority research topics were identified in the region.

Redarquía de la atención paliativa: una propuesta de trabajo dual / Palliative care networking hierarchy: a two-pronged approach

Los cuidados paliativos (CP) evolucionaron a partir de un movimiento contracultural en consonancia con otros movimientossociales de los años 60. Cicley Saunders puso en marcha una revolución silenciosa: un modelo científico, compasivo y eficientede “Cuidado total”1. En el siglo xxi el acceso a los CP es un derecho aún no tan accesible, ni antes ni durante la pandemiapor COVID-19. Se espera que aumente la necesidad de CP aproximadamente un 87 % en las próximas 4 décadas, afectandode forma desproporcionada a las personas que viven en la pobreza y a los mayores de 70 años, entre otros grupos2. En elmundo, cerca del 85 % de las personas no tienen garantizado ese derecho3. Cada uno/a de nosotro/as es parte interesada en este problema. (AU)

Hospital care for the dying patient with cancer: does an advance care planning invitation influence bereaved relatives' experiences? A two country survey.

OBJECTIVES: Advance care planning (ACP) is not systematically performed in Argentina or Norway. We used the post-bereavement survey of the ERANet-LAC International Care Of the Dying Evaluation (CODE) project (2017-2020) to examine the proportion of relatives who were offered an ACP conversation, the proportion of those not offered it who would have wanted it and whether the outcomes differed between those offered a conversation and those not. METHODS: Relatives after cancer deaths in hospitals answered the CODE questionnaire 6-8 weeks post bereavement, by post (Norway) or interview (Argentina). Two additional questions asked if the relative and patient had been invited to a conversation about wishes for the patient's remaining lifetime, and, if not invited, whether they would have wanted such a conversation. The data were analysed using mixed-effects ordinal regression models. RESULTS: 276 participants (Argentina 98 and Norway 178) responded (56% spouses, 31% children, 68% women, age 18-80+). Fifty-six per cent had been invited, and they had significantly more positive perceptions about care and support than those not invited. Sixty-eight per cent of the participants not invited would have wanted an invitation, and they had less favourable perceptions about the care, especially concerning emotional and spiritual support. CONCLUSIONS: Relatives who had been invited to a conversation about wishes for the patient's remaining lifetime had more positive perceptions about patient care and support for the relatives in the patient's final days of life. A majority of the relatives who had not been invited to an ACP conversation would have wanted it.

One chance to get it right: improving clinical handovers for better symptom control at the end of life.

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.

Good Quality Care for Cancer Patients Dying in Hospitals, but Information Needs Unmet: Bereaved Relatives' Survey within Seven Countries.

BACKGROUND: Recognized disparities in quality of end-of-life care exist. Our aim was to assess the quality of care for patients dying from cancer, as perceived by bereaved relatives, within hospitals in seven European and South American countries. MATERIALS AND METHODS: A postbereavement survey was conducted by post, interview, or via tablet in Argentina, Brazil, Uruguay, U.K., Germany, Norway, and Poland. Next of kin to cancer patients were asked to complete the international version of the Care Of the Dying Evaluation (i-CODE) questionnaire 6-8 weeks postbereavement. Primary outcomes were (a) how frequently the deceased patient was treated with dignity and respect, and (b) how well the family member was supported in the patient's last days of life. RESULTS: Of 1,683 potential participants, 914 i-CODE questionnaires were completed (response rate, 54%). Approximately 94% reported the doctors treated their family member with dignity and respect "always" or "most of the time"; similar responses were given about nursing staff (94%). Additionally, 89% of participants reported they were adequately supported; this was more likely if the patient died on a specialist palliative care unit (odds ratio, 6.3; 95% confidence interval, 2.3-17.8). Although 87% of participants were told their relative was likely to die, only 63% were informed about what to expect during the dying phase. CONCLUSION: This is the first study assessing quality of care for dying cancer patients from the bereaved relatives' perspective across several countries on two continents. Our findings suggest many elements of good care were practiced but improvement in communication with relatives of imminently dying patients is needed. (ClinicalTrials.gov Identifier: NCT03566732). IMPLICATIONS FOR PRACTICE: Previous studies have shown that bereaved relatives' views represent a valid way to assess care for dying patients in the last days of their life. The Care Of the Dying Evaluation questionnaire is a suitable tool for quality improvement work to help determine areas where care is perceived well and areas where care is perceived as lacking. Health care professionals need to sustain high quality communication into the last phase of the cancer trajectory. In particular, discussions about what to expect when someone is dying and the provision of hydration in the last days of life represent key areas for improvement.

Palliative and prognostic approach in cancer patients identified in the multicentre NECesidades PALiativas 2 study in Argentina.

BACKGROUND: Early identification of palliative needs has proven benefits in quality of life, survival and decision-making. The NECesidades PALiativas (NECPAL) Centro Coordinador Organización Mundial de la Salud - Instituto Catalán de Oncología (CCOMS-ICO©) tool combines the physician's insight with objective disease progression parameters and advanced chronic conditions. Some parameters have been independently associated with mortality risk in different populations. According to the concept of the 'prognostic approach' as a companion of the 'palliative approach', predictive models that identify individuals at high mortality risk are needed. OBJECTIVE: We aimed to identify prognostic factors of mortality in cancer in our cultural context. METHOD: We assessed cancer patients with palliative needs until death using this validated predictive tool at three hospitals in Buenos Aires City. This multifactorial, quantitative and qualitative non-dichotomous assessment process combines subjective perception (the surprise question: Would you be surprised if this patient dies in the next year?) with other parameters, including the request (and need) for palliative care (PC), the assessment of disease severity, geriatric syndromes, psychosocial factors and comorbidities, as well as the use of healthcare resources. RESULTS: 2,104 cancer patients were identified, 681 were NECPAL+ (32.3%). During a 2-year follow-up period, 422 NECPAL+ patients died (61.9%). The mean overall survival was 8 months. A multivariate model was constructed with significant indicators in univariate analysis. The best predictors of mortality were: nutritional decline (p < 0.000), functional decline (p < 0.000), palliative performance scale (PPS) ≤ 50 (p < 0.000), persistent symptoms (p < 0.002), functional dependence (p < 0.000), poor treatment response (p < 0.000), primary cancer diagnosis (p = 0.024) and condition (in/outpatients) (p < 0.000). Only three variables remained as survival predictors: low response to treatment (p < 0.001), PPS ≤ 50 (p < 0.000) and condition (in/outpatients) (p < 0.000). CONCLUSION: This prospective model aimed to improve cancer survival prediction and timely PC referral in Argentinian hospitals.

Desarrollo y aplicación de un panel de indicadores de calidad para evaluar servicios de cuidados paliativos / Development and application of a quality indicator panel to evaluate palliative care services

INTRODUCCIÓN: Existe una necesidad creciente de cuidados paliativos a nivel mundial en parte debido a la mayor prevalencia de enfermedades no transmisibles y al envejecimiento poblacional. La OMS instó a las naciones a trabajar en el desarrollo, fortalecimiento y monitorización de los cuidados paliativos aún insuficientes. En Argentina, en 2014 se desarrolló un panel de 23 indicadores de calidad (10 de Estructura, 12 de Proceso, 1 de Resultado) para evaluar recursos (etapa 1). El objetivo actual fue la aplicación de dicho panel (etapa 2) en las 5 regiones del país, probando su factibilidad para identificar áreas de mejora. MÉTODO: Estudio exploratorio, prospectivo, observacional, de identificación y auditoría, transversal en 6 fases (julio 2016-julio 2018) utilizando el panel desarrollado con estándares preestablecidos. Se realizó el análisis descriptivo por indicador y recurso. RESULTADOS: Fase 1, Censo de 128 recursos; Fase 2, Cartografía y categorización de los recursos en niveles de organización (38 % de respuestas); Fase 3, Capacitación del grupo investigador; Fase 4, Auditoría en terreno. Participaron 22 recursos. Se auditaron 30 historias clínicas de pacientes oncológicos fallecidos y actividades programadas, gestión, docencia, investigación; Fase 5, Análisis: los equipos de nivel 3 alcanzaron y superaron el estándar deseable para 3 indicadores de proceso (identificación del cuidador principal, plan farmacoterapéutico y emergencias); Fase 6, Interpretación y comunicación de las áreas de mejora. CONCLUSIONES: La aplicación del panel de indicadores fue factible y se lograron identificar áreas de mejora. Un sistema de monitorización de la calidad promovería estándares asistenciales y facilitaría la planificación de acciones de capacitación y fortalecimiento institucional en Argentina

INTRODUCTION: There is a growing need for palliative care worldwide, due to a higher prevalence of non-communicable diseases and the aging of the population. The WHO urged nations to work on palliative care development, strengthening, and monitoring, which remain inadequate as of today. In 2014 a 23-quality indicator panel (10 for structure, 12 for process, 1 for outcome) was developed in Argentina to evaluate resources (stage 1). Our objective was to use this panel (stage 2) in 5 country regions to test its viability and to identify areas for improvement. METHOD: An exploratory, prospective, cross-sectional, observational study for identification and audit purposes along 6 phases (July 2016-July 2018) using the developed panel with preset standards. A descriptive analysis by indicator and resource was carried out. RESULTS: Phase 1: Census of 128 palliative care resources; Phase 2: Mapping and categorization of resources in levels of organization (38 % of answers); Phase 3: Group training; Phase 4: On-site audit. 22 resources participated. The medical records of 30 deceased patients, as well as scheduled management, teaching, and research activities were audited; Phase 5: Analysis: level-3 teams reached and even surpassed the desired standards for 3 process indicators (pharmacological plan, main caregiver identification, emergency instructions); Phase 6: Interpretation and communication of areas for improvement. CONCLUSIONS: The implementation of the indicator panel was found to be feasible and areas for improvement were identified. A quality monitoring system would boost up healthcare standards and ease planning for training and institutional strengthening actions in Argentina

Modelo demostrativo de identificación precoz y atención continua de pacientes con cáncer y necesidad paliativas / Demonstrative model for early identification and continuous care of cancer patients with palliative needs

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.

Caregivers burden in palliative care patients: a problem to tackle.

PURPOSE OF REVIEW: To revise the family caregiver's burden concept and to understand the implications for the patient, family and healthcare system. We analyzed recent literature in three main areas: the role of family caregiver at the end of life, the family caregiver's burden and the involvement of social care networks. RECENT FINDINGS: The family caregiver often accepts the caring as a natural action, presumably imposed by the society. A recent review described seven main roles of care which, according to family system and society, consist of different tasks and activities. To assume this role is not stress free. It is likely to develop a 'burden' by the assumed task. SUMMARY: Family members who are close to the patient may play the role of caregiver, well-being enhancer, diversity of tasks fulfiller, minimizer and managing suffering, palliative care facilitator and responsible for the continuity of care, apprentice and participant of health teams. The family caregiver often gives priority to the problems of his dependent family member, becoming almost 'invisible' to the health system. It should also be consider the relevance of this issue into future bereavement process. Considering all these aspects, the family caregiver is often considered by the healthcare teams as 'overall tasks' performers'.

What does end stage in neuromuscular diseases mean? Key approach-based transitions.

PURPOSE OF REVIEW: To revise the definition of end stage in the setting of neuromuscular disease (NMD), to understand the implications for the patient, family and healthcare team, and to address the obstacles involved in the lack of definition. RECENT FINDINGS: Unlike several conditions such as cancer, kidney or liver disease, the literature reveals no clear definition or categorization for NMD. Many articles mention end stage without defining it. Many years ago an expert consensus panel defined it based on functional criteria (forced vital capacity values and hypercapnic events). Only for amyotrophic lateral sclerosis/motoneurone disease has a wider criteria been proposed. As a consequence, the management of this heterogeneous group of disorders is often fragmented compared with the well organized palliative care program for cancer patients. SUMMARY: Better end-stage NMD definitions should help to identify the goals of care, but a broad range in time and intensity of deterioration make a valid definition difficult for end-stage NMD. Respiratory care, life-prolonging therapies, and structured care planning should be seen as complementary rather than dichotomous. This article emphasized the relevance of an integrated approach through the whole trajectories of NMD patients considering key transitions.

Implementación del Liverpool Care Pathway en español en Argentina y en España: exploración de las percepciones de los profesionales ante el final de la vida / The Liverpool Care Pathway implementation in Spanish in Argentina and Spain: A study of health professional perceptions on end of life

Las percepciones de los profesionales de la salud ante el final de la vida pueden influir en la comunicación con pacientes y familias. Si bien en cuidados paliativos (CP) la muerte es algo esperable y natural, genera emociones de distinta intensidad y pone en evidencia la propia finitud y/o la de seres amados y pérdidas previas no elaboradas. El Liverpool Care Pathway (LCP) propone un programa de calidad de atención para personas en situación de últimos días (SUD). En Argentina y España se está implementando el LCP (en español) desde las ONG Pallium (programa PAMPA) y Cudeca respectivamente. Nuestro objetivo es explorar las condiciones subjetivas (percepciones) que enfrentan los profesionales de la salud en relación con la atención en el final de la vida, en el contexto previo y posterior a la implementación de una secuencia de cuidado integral LCP/PAMPA en un contexto binacional latino (Argentina-España). Proponemos identificar y describir los significados que los profesionales le asignan a: los cuidados del muriente, la comunicación, el trabajo en equipo, la documentación y las actitudes en SUD. METODOLOGÍA: Es un estudio de casos múltiples, conformado por 2 módulos independientes articulados en un análisis integrador. El primer módulo realizó un tipo de etnografía utilizada en instituciones sanitarias (EF) en el equipo hospitalario de CP que iniciaban la capacitación con el LCP/PAMPA en Argentina. El segundo módulo consistió en la aplicación de un cuestionario estructurado y pregunta abierta sobre las percepciones de los profesionales sobre las necesidades y condiciones de implementación del LCP (en ambos países). RESULTADOS: Módulo 1. Ejes de indagación: a) acercamiento a la intervención en SUD; b) expectativas sobre la capacitación con LCP; c) dudas y temores en la aplicabilidad del LCP y d) lugar de la intuición en las INTERVENCIONES: Los datos muestran la variabilidad en los motivos de elección a los CP como formación profesional (personales versus necesidades del sistema sanitario) y las expectativas favorables con respecto a la utilidad del LCP. Módulo 2. Se exploraron las categorías específicas para ambos países (España n: 23, Argentina n: 112), siendo lo más relevante el acuerdo pleno del 73,7% de los encuestados argentinos respecto a los indicadores que reflejan los objetivos de calidad del instrumento. En España el acuerdo pleno alcanza el 91,4% teniendo en cuenta la capacitación específica en CP de los profesionales del Plan Nacional de CP. En Argentina aparece como evidente la falta de formación específica en CP antes de la implementación del LCP/PAMPA (91%) CONCLUSIÓN: Este estudio pretendió explorar por primera vez en un contexto de habla hispana, tanto en España como en América latina, las condiciones subjetivas de profesionales de la salud que pueden implementar una secuencia de cuidado integral sistemática muy utilizada en el contexto cultural anglosajón

Health professionals' perceptions on the end of life (EoL) can influence communication with patients and families. Although death is expected in palliative care (PC), emotions of varying intensity are generated. The fears and difficulties encountered in facing this subject will be different according to previous personal experiences. The Liverpool Care Pathway (LCP) proposes a quality programme of care for people at the EoL. Both in Argentina, Pallium and in Spain, Cudeca, are implementing a Spanish version of LCP. Our goal is to explore the subjective conditions (perceptions) faced by health professionals concerning EoL, and the influence before and after the implementation of the LCPin a Latin-American cultural context (Argentina-Spain). We propose to: identify and describe the meanings that professionals assigned to the care of the dying, communication, teamwork, documentation, and attitudes to EoL. METHODOLOGY: A multiple case study, consisting of 2 independent modules articulated in integrative analysis. The first module performed a type of ethnography used in health institutions (focused ethnography) in a PC hospital team who started training with the LCP/PAMPA in Argentina. The second module was the implementation of a structured questionnaire and open questions about the professional's perceptions and conditions of the implementation of the LCP (in both countries). RESULTS: Module 1. Axes of inquiry: a) approach to intervention in EoL, b) expectations about training with LCP, c) doubts and fears in the applicability of LCP, and d) place of intuition in INTERVENTIONS: The data show the variability for choosing the PC as training and the favorable expectations regarding the use of the LCP. Module 2. Specific categories were explored for both countries (Spain n: 23, Argentina n: 112) the most relevant of the full agreement of 73.7% of Argentines respondents on indicators that reflect the quality goals of the instrument. In Spain the full agreement reached 91.4%, keeping in mind the specific training of professionals of the PC National Plan. Argentina showed evidence of the lack of specific training in PC before the implementation of the LCP/PAMPA (91%). CONCLUSIONS: This study aimed to explore, for the first time in a Spanish-speaking context, both in Spain and in Latin America, the subjective conditions of health professionals who can implement a systematic pathway widely used in the Anglo-Saxon cultural context

Management of dyspnea in advanced motor neuron diseases.

PURPOSE OF REVIEW: Patients with amyotrophic lateral sclerosis or motor neuron disease (ALS/MND) invariably develop respiratory muscle weakness and most die from pulmonary complications. Little evidence is available that identifies optimal management approaches for caring for the dying patient. This review discusses the state of the art on dyspnea in advanced ALS/MND and its treatment. RECENT FINDINGS: Multiple observational studies have demonstrated that noninvasive positive pressure ventilation is beneficial in ALS/MND. It is a relatively safe intervention in the late stages of disease with additional survival benefits when it is started relatively early and it can improve survival. Despite guidelines related to pulmonary function testing about the use of noninvasive positive pressure ventilation, the factors, which are most closely associated with noninvasive positive pressure ventilation utilization, are dyspnea and orthopnea. SUMMARY: In ALS/MND, loss of function relentlessly progresses, and subsequent death occurs mostly in a predictable manner. Therefore, the end of life care is heavily influenced by the type and quality of care provided from the earliest stages. Most patients with ALS/MND develop dyspnea, agitation, anxiety and air hunger in the final phase. Noninvasive positive pressure ventilation has become the standard of care for patients with ALS/MND and advanced respiratory insufficiency. A multidisciplinary approach is strongly recommended.