Implementing the WHO Indicators for assessing palliative care development in three countries: a Do-It-Yourself approach.

CONTEXT: Palliative care is an essential health service, with over 56.8 million people needing it yearly, particularly in low- and middle-income countries. The World Health Assembly has recognised palliative care as an ethical responsibility and called for comprehensive primary health care. The World Health Organization has published a technical report titled "Assessing the Development of Palliative Care Worldwide," as a crucial first step in addressing palliative care. The report includes 14 indicators to help decision-makers identify service provision gaps and inform health priorities, piloted by WHO's ATLANTES in Benin, Morocco, and Uruguay as part of a global assessment. OBJECTIVES: To describe, for the three countries, the primary outcomes and lessons learned to enable replication in further countries. METHODS: A step-by-step description of the assessment project, a summary of the main results obtained through evaluations, and a description of how the selected countries effectively implemented the WHO indicators through a six-step process, including a phase of action plan design. We advocated a 'Do-it-yourself' approach. RESULTS: The summary data from three country reports reveals national development at a national level. A SWOT analysis involving consultants and program managers was conducted. A stakeholder guide was developed, providing trigger questions and practical recommendations for assessing development using specific indicators. Full information can be found in the specific published reports. CONCLUSION: The WHO approach has proven effective in identifying health system deficiencies and disseminating information about palliative care evaluation processes. The report provides a 'Do-it-yourself' approach, encouraging self-management without expert guidance.

'Someone must do it': multiple views on family's role in end-of-life care - an international qualitative study.

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.

[Perceived self-efficacy scale on shared care planning (ACP-SEs) Argentina]. / Escala autoeficacia percibida sobre planificación compartida de la atención (ACP-SEs) Argentina.

INTRODUCTION: Shared care planning (ACP) is a reflective, deliberative and structured process involving the sick person and his or her caring environment. Health professionals recognize barriers to initiating ACP.Perceived self-efficacy is one of the main predictors of success in learning processes. OBJECTIVES: 1) To crossculturally adapt the ACP self-efficacy scale in Spanish for Argentina (ACP-SEs); 2) To explore the reliability and validity of the scale; and 3) To explore self-efficacy in ACP in Argentinean professionals. METHOD: Exploratory instrumental study carried out on health professionals who assist patients with advanced chronic diseases, interdisciplinary through a comprehension test of the ACP-SEs instrument and psychometric validation in a purposive sample of professionals. Sociodemographic variables and previous experience were analyzed. RESULTS: After the comprehension test and linguistic adaptation of the scale through cognitive testing with eight professionals with experience with advanced chronic patients, the ACP-SEs Ar version of the scale was achieved. 236 professionals participated in the exploration, 83% attended patients with advanced chronic disease, 52.9 % were physicians, 52% received informal training in ACP, and 11% had a personal advance directive document. The scale's internal consistency was high (Cronbach's alpha = 0.89). Questions about prognosis, treatment options, goals, treatment preferences, and reassessment of goals of care showed significant differences between physicians and nonphysicians. CONCLUSION: We explored PCA self-efficacy in health professionals with the ACP-SEs Ar scale validated for the first time in Argentina.

Introducción: La planificación compartida de la atención (PCA) es un proceso reflexivo, deliberativo y estructurado. Involucra a la persona enferma y su entorno afectivo. Los profesionales sanitarios reconocen barreras para iniciar la PCA. La autoeficacia percibida es un principal predictor del éxito en los procesos de aprendizaje. Objetivos: 1) Adaptar transculturalmente la escala de autoeficacia percibida en PCA en español para Argentina (ACP-SEs); 2) Explorar la confiabilidad y la validez de la escala y 3) Explorar la autoeficacia en PCA en profesionales argentinos. Métodos: Estudio instrumental exploratorio realizado a profesionales de la salud que asisten pacientes con enfermedades crónicas avanzadas, interdisciplinarios, a través de una prueba de comprensión del instrumento ACP-SEs y la validación psicométrica en una muestra intencional de profesionales. Se analizaron variables sociodemográficas y la experiencia previa. Resultados: Luego de la prueba de comprensión y adaptación lingüística de la escala a través de un test cognitivo con 8 profesionales con experiencia con pacientes crónicos avanzados se logró la versión de la escala ACP-SEs Ar. Participaron en la exploración 236 profesionales, el 83% asistía pacientes con enfermedad crónica avanzada; el 52.9% médicos; 52% recibió formación informal en PCA y 11% tenía un documento de directivas anticipadas personal. La consistencia interna de la escala fue alta (alfa de Cronbach = 0.89). Las preguntas sobre pronóstico, objetivos y preferencias de tratamiento, y reevaluación de los objetivos de cuidados mostraron diferencias significativas entre médicos y no médicos. Conclusión: La escala ACP-SEs Ar demostró propiedades psicométricas adecuadas.

Dealing With Temporality in Patients With Life-Limiting Disease: An International Qualitative Study.

The prospect of death influences people's thoughts about and how they deal with their remaining time. We aimed to understand whether patients with progressive, life-limiting diseases are oriented in the past, present, or future and how they deal with temporality. We conducted 57 in-depth interviews with end-of-life patients in 10 countries using thematic analysis at three levels (i.e., locally in three countries, with codes shared in the three-country subgroup, and in all 10 countries with a codebook that we developed). We found that the patients' thoughts were oriented toward all three time levels (i.e., past, present, and future). Complementing these levels, we identified another, namely, the future after death. Each time level included patients actively and passively dealing with their thoughts. Past themes were remorse and regret, nostalgia, and coming to terms with past choices; present themes were feeling grateful for being alive, a time for farewells, and living for the day; future themes were worries about the future, to miss out, hope, ideas about death and dying, and planning the near future; and future after death themes were not being there, worries about loved ones, and preparations for a future after death. A changed view on lifetime and avoidance of thinking about a certain time level related to several time levels, while desire to die fluctuated between levels and between acting on and feeling about it. Living for the day, worries about the future, and worries about the well-being of loved ones were common themes in all countries.

From static snapshots to dynamic panoramas: the evolution and future vision of palliative care atlas in cross-national perspectives.

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.

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.

Economic impact of informal care of cancer patients at the end of life.

BACKGROUND: Economic analysis of the incorporation of palliative care (PC) programs allows for assessment of the potential financial impact of shifting activity from secondary care to primary, community and social care sectors. Only 14% of patients in need of PC in Argentina have access to PC services, similar to the world average, as estimated by World Health Organization (WHO). The economic impact of family care, which falls mainly on women, needs to be assessed at the public policy and research levels. We aimed to estimate and make visible the economic impact of unpaid care tasks developing a cost-effectiveness analytic model of a home-based PC program for cancer patients at the end of life from a social perspective (SP) in the province of Río Negro, Argentina. METHODS: A Markov model was developed from a SP to assess the cost-effectiveness of palliative home care compared to the usual care (UC) of cancer patients. The model compares the provision of PC through a home-based program with the UC that patients receive at the end of life. The average cost per patient, percentage of home deaths, days at home in the last year of life and the economic impact of formal and informal care were estimated using the human capital approach for 2019. RESULTS: palliative home care was cost-saving, leading to a 10.32% increase in home deaths, a decrease of 9 days of hospitalisation and an annual saving for society of USD 750 per patient. From a societal perspective, the largest cost-driver corresponds to informal care provided mainly by families, which accounted for 82% and 88% of the total daily cost of PC and UC strategy, respectively. CONCLUSIONS: The incorporation of PC can improve the allocation of resources between the different levels of care. The visualisation of care tasks becomes particularly relevant when considering public policies and outcomes. Incorporating palliative home care strategies could alleviate the enormous costs faced by patients' families, especially women, in this stage of care.

Series en Disnea. Parte 5. Experiencia subjetiva de la dificultad para respirar: Disnea total, disnea refractaria, síndrome de disnea crónica, disnea terminal / Series on Dyspnea. Part 5. Subjective Experience of Breathlessness: total dyspnea, refractory dyspnea, chronic dyspnea syndrome, terminal dyspnea

RESUMEN El concepto de "dificultad para respirar" enfatiza la naturaleza subjetiva multidimensional de la disnea con componentes físicos, psicológicos, sociales, espirituales y existencia les. La "disnea total" aboga por un enfoque integral y centrado en el paciente más allá de la enfermedad. La noción de "disnea refractaria" debería ser evitada; implica cierto nihilismo terapéutico. Por tal motivo, se acuñó el concepto de "síndrome de disnea crónica" para reconocer las posibilidades de tratamiento y concientizar a los pacientes, los médicos, el equipo de salud y los investigadores. Las personas que viven con enfer medades respiratorias avanzadas y disnea crónica grave (y sus allegados) tienen una mala calidad de vida. El modelo clínico-conceptual "respirando-pensando-funcionando" incluye las tres reacciones cognitivas y conductuales predominantes que, al provocar círculos viciosos, empeoran y mantienen el síntoma. Para la evaluación exhaustiva de la disnea se dispone de diversos instrumentos que consideran la experiencia sensorial-perceptiva, la angustia afectiva (distress) y el impacto o carga de los síntomas. La dificultad para respirar durante las últimas semanas o días de vida puede denominarse "disnea terminal". Es un síntoma frecuente y uno de los más angustiantes en la última fase de la vida de pacientes con cáncer. En estas circunstancias el autorreporte puede subestimar la dificultad respiratoria. La Escala de Observación de Dificultad Respiratoria es el primer y único instrumento de evaluación de la disnea destinado a evaluar su presencia e intensidad en pacientes que no pueden comunicarse.

ABSTRACT The concept of shortness of breath emphasizes the multidimensional subjective nature of dyspnea with physical, psychological, social, spiritual, and existential components. "Total dyspnea" advocates a comprehensive, patient-centred approach beyond the disease. The term "refractory dyspnea" should be avoided; it implies a certain therapeutic nihil ism. For this reason, the term "chronic dyspnea syndrome" was coined to recognize the possibilities of treatment and raise awareness among patients, physicians, the health team, and researchers. People with advanced respiratory disease and severe chronic breathlessness (and those close to them) have a poor quality of life. The Breathing- Thinking-Functioning clinical-conceptual model includes the three predominant cognitive and behavioral reactions that, by causing vicious circles, worsen and maintain the symp tom. Various instruments are available for the comprehensive assessment of dyspnea. That considers the sensory-perceptual experience, the affective anguish (distress) and the impact or burden of the symptoms. Difficulty breathing during the last weeks or days of life may be called "terminal dyspnea." It is a frequent symptom and one of the most distressing in the latest phase of the life of cancer patients. In these circumstances, self-report may underestimate respiratory distress. The Respiratory Distress Observa tion Scale is the first and only dyspnea assessment instrument to assess its presence and intensity in patients unable to communicate.

Enhancing Global Development of Palliative Care: Insights from Country Experts on ATLANTES Observatory's Role.

Background: Despite a steady increase in palliative care (PC)-oriented research, authentic engagement of stakeholders with findings needs to be more used. Objective: This study aimed to explore how ATLANTES Observatory can effectively promote the global development of PC by engaging with stakeholders and addressing their specific needs and priorities. Design: An international e-survey among Observatory collaborators explored key audiences, best ways to reach them, and priority activities. Answers were evaluated according to respondents' roles (Academics, Policymakers, and clinicians) and toward impact on diverse key stakeholders. Correlation between respondents' roles with select products was studied. Results: One hundred fifty-five collaborators participated. The collaborators suggested addressing ATLANTES Global Observatory's activities to policymakers (5,6/7), professional associations (5,2/7), and health care practitioners (4,4/7). Preferred activity to reach all stakeholders is the use of websites and social networks, while particularly for policymakers, academics, and general practitioners, the conduction of atlases and articles stand out. Conclusions: Our study emphasizes prioritizing policymakers and all health care practitioners as key stakeholders in promoting PC and driving global development and integration into health care systems. By leveraging innovative web tools and social networks for dissemination, our aim is to extend the reach of our efforts beyond the PC community.