"Compassionate City" in Patients with Advanced Illnesses and at the End of Life: A Pilot Study.

OBJECTIVES: To evaluate, in a Compassionate City pilot experience (Sevilla), the impact results on health in a population of people with advanced illness and at the end of life. METHODS: The project was undertaken in Sevilla, Spain, between January 2019 and June 2020. A longitudinal, descriptive study was conducted using a longitudinal cohort design with two cross-sectional measurements, pre and post intervention. All patients who entered the program on the start date were included. The networks of care around people with advanced illness and at the end of life, palliative care needs, quality of life, loneliness, anxiety, depression, caregivers' burden and family satisfaction were evaluated. The interventions were conducted by community promoters assigned to the "Sevilla Contigo, Compassionate City" program. RESULTS: A total of 83 people were included in the program. The average number of people involved in care at the beginning of the evaluations was 3.6, increasing to 6.1 at the end of the interventions. The average number of needs detected at the beginning was 15.58, and at the end of interventions, it was 16.56 out of 25. The unmet needs were those related to last wishes (40.7%), emotional relief (18.5%), entertainment (16%), help to walk up and down stairs (8.6%) and help to walk (6.2%). A total of 54.2% showed improved loneliness in the final evaluation. Out of 26 people evaluated for pre and post quality of life, 7 (26.9%) improved their quality of life in the general evaluation and 5 (19.2%) displayed improved anxiety/depression. A total of 6 people (28.6%) improved their quality-of-life thermometer scores. A total of 57.7% of caregivers improved their burden with a mean score of 17.8.

Impacto en el consumo de recursos de un programa integrado de cuidados paliativos en Colombia / Impact of resources consumption of an integrated palliative care program in Colombia

Introducción: El desarrollo de Programas de Cuidados Paliativos ha demostrado ser costo-eficiente, generando ahorros en los sistemas de salud. En Colombia, en los últimos años se ha producidoun importante desarrollo de programas y recursos de cuidados paliativos, por lo que se hace necesario medir el impacto de la implementación de estos programas en el país.Objetivo: Analizar el consumo de recursos y costes al final de la vida tras la implementación de un Programa Integrado de Cuidados Paliativos en una aseguradora privada en Colombia (2016-2019).Método: Estudio descriptivo, longitudinal, retrospectivo, sobre una población de fallecidos susceptibles de cuidados paliativos. Estudio en 3 periodos: 1) antes de la implementación del Programa Integrado de Cuidados Paliativos, 2) primer periodo de Programa Integrado de CuidadosPaliativos, 3) segundo periodo de Programa Integrado de Cuidados Paliativos. Se analizaron, en último trimestre y último mes de vida: estancias en Programa Integrado de Cuidados Paliativos,hospitalizaciones, estancias hospitalarias, costes y ahorros. Las poblaciones fueron consideradas independientes.Resultados: 108 personas previo a implementación del Programa Integrado de Cuidados Paliativos, 139 personas en periodo 1, 186 en periodo 2. Promedio de personas en programa/mes: 35en el periodo 1, 52 en periodo 2, (aumento del 49 %). Permanencia mediana de fallecidos enprograma: 31 días en periodo 1, 40 días en periodo 2 (aumento del 29 %). Promedio de hospitalizaciones (último trimestre de vida) 1,91 en periodo de inicio, 1,42 primer periodo, 1,04 segundoperiodo (reducción del 45 %). Promedio de días de estancias hospitalarias (último trimestre de vida): periodo de inicio 15,5 días, primer periodo 10,4 días, segundo periodo 4,9 días (reducción del 68,4 %). ... (AU)

Introduction: The development of palliative care programs has proven to be cost-efficient,generating savings in health systems. In Colombia, in recent years, there has been an important development of palliative care programs and resources, and it is necessary to measure theimpact of these programs’ implementation in the country.Objective: To analyze the use of healthcare resources and costs at the end of life after implementation of an Integrated palliative care program in a private insurance company in Colombia(2016-2019).Method: In a retrospective, longitudinal study we describe the impact of the first two years ofpalliative care program implementation on permanence in a program and hospital costs due tothe complexity level of care distribution.Healthcare costs and savings in the last trimester and last month of life, stays in the integratedpalliative care program, hospitalizations, and length of stay were analyzed. Data collected during the year before implementation was taken to represent the study baseline.Results: 108 patients were identified with palliative care needs at baseline, 139 patients during the first time frame, and 186 during the second time frame of program implementation.The average number of patients in the program/month was 35 in time frame 1, and 52 in timeframe 2 (increase by 49 %). Median permanence of deceased subjects in the program: 31 daysin time frame 1, 40 days in time frame 2 (increase by 29 %). Average number of hospitalizations(last trimester of life): 1.91 at baseline, 1.42 in the first time frame, 1.04 in the second timeframe (45 % reduction). Average length of stay in the last trimester of life: baseline 15.5 days,first time frame 10.4 days, second time frame 4.9 days (68.4 % reduction). ... (AU)

A Survey of Attitudes and Beliefs about Care, Compassion and Communities Networks in Palliative Care. A Preliminary Study for the Development of a Compassionate University.

The aim of this study was to know the level of knowledge, sensitivities and training needs regarding care of people at the end of life in medicine, nursing and psychology students/academic and administration university personnel; and to identify skills to perceive and expressed values related to compassion it in their living environment. METHOD: a descriptive observational study was conducted among undergraduate medical, nursing and psychologist students, academic and administration personnel of the University of Bogotá in Colombia the survey was based on a web-based questionnaire (November 2019-April 2020). Levels of knowledge and sensitivities about care of people at the end of life, educational needs and compassion were assessed. Descriptive and comparative measures and statistical significance tests used, Student's t and ANOVA (α = 0.05). RESULTS: 465 people answered the survey; students (82.4%), academic (13.1%) and administration personnel (4.5%). 81.6% knew about palliative care concepts. 64.7% had not cared for other people with advanced or terminal illness. 44.7% talked about death without problems. The most evaluated training competences were humanity, dignity and compassion. Mean levels for compassion by Gilbert's scale were 70.55 for self-compassion, 72.61 for compassion for others and 60.47 for compassion from others. Significant differences were found by age and gender in self-compassion values. CONCLUSIONS: the level of knowledge, sensitivities and training needs regarding care of people at the end of life in the University and the values related to compassion enables the development of Compassionate Universities.

Implementation Models of Compassionate Communities and Compassionate Cities at the End of Life: A Systematic Review.

In the last decade, we have seen a growth of Compassionate Communities and Cities (CCC) at the end of life. There has been an evolution of organizations that help construct Community-Based Palliative Care programs. The objective is to analyze the implementation, methodology and effectiveness of the CCC models at the end of life. We conducted a systematic review following PRISMA ScR Guideline. The protocol was registered on PROSPERO (CRD42017068501). Five databases (MEDLINE, EMBASE, Web of Science, CINAHL and Google Scholar) were searched for studies (from 2000 to 2018) using set eligibility criteria. Three reviewers screened full-texts articles and extracted study data. Outcomes were filled in a registration form which included a narrative synthesis of each article. We screened 1975 records. We retrieved 112 articles and included 31 articles for the final analysis: 17 descriptive studies, 4 interventions studies, 4 reviews and 6 qualitative studies. A total of 11 studies regard the development models of CCC at the end of life, 15 studies were about evaluation of compassionate communities' programs and 5 studies were about protocols for the development of CCC programs. There is poor evidence of the implementation and evaluation models of CCC at the end of life. There is little and low-/very low-quality evidence about CCC development and assessment models. We found no data published on care intervention in advance disease and end of life. A global model for the development and evaluation of CCC at the end of life seems to be necessary.

Comunidades compasivas en Colombia para el apoyo a personas con enfermedad avanzada y al final de la vida: uniendo esfuerzos / Compassionate communities in colombia to support people facing advanced illness and the end of life: joining efforts

Diversos países de medianos ingresos se encuentran en un proceso de transición demográfica avanzado hacia el envejecimiento. Atender esta población heterogénea implica un reto a los sistemas de salud y demanda una mayor participación de la comunidad, dada la alta prevalencia de enfermedades crónicas en adultos mayores y su frecuente dependencia funcional y fragilidad, que impactan en la calidad de vida e incrementan los costos asistenciales. En los años 90, la Organización Mundial de la Salud adoptó un modelo comunitario de salud pública que busca empoderar a las comunidades respecto al cuidado de la salud. Ello ha permitido el surgimiento de las comunidades compasivas, un movimiento social que parte de una filosofía en la cual la prioridad es el bienestar común. Algunos ejemplos de ello son las iniciativas que buscan promover e integrar socialmente los cuidados paliativos en la vida cotidiana de las personas creando "comunidades que cuidan" y que enseñan a cuidar a las personas al final de la vida. El presente artículo presenta los antecedentes del movimiento de ciudades compasivas en el mundo, su importancia para los cuidados paliativos y describe el desarrollo de este movimiento en Colombia, detallando acciones individuales y conjuntas de las ciudades que buscan aunar esfuerzos en pro del bienestar de las personas que enfrentan enfermedades avanzadas y el final de vida. Colombia ha logrado, en un periodo relativamente corto, promover acciones compasivas en siete de sus ciudades y comenzar a tejer redes no solo a nivel local sino también nacional. Se espera que muchos más se unan en este esfuerzo y que esto permita complementar la atención que se brinda por cuidados paliativos y potenciarla

Many middle-income countries are facing an advanced demographic change towards ageing. Caring for this heterogeneous population represents a challenge for health systems and requires a growing participation of the community, considering the high prevalence of chronic diseases in the elderly, and their frequent functional dependence and fragility, which altogether impacts their quality of life and increases health costs. The World Health Organization adopted in the 1990s a community public health approach seeking to empower the society in the care of their health. Since then, a social movement known as "Compassionate communities" has emerged, based on a principle that prioritizes the community's wellbeing. The initiatives that promote the social inclusion of palliative care in everyday life are an example of these "communities that care" and that teach others how to care for a person facing the end of life. This article presents the background of compassionate communities and their importance to palliative care. It also describes the development of this movement in Colombia and details the individual and collective actions of the cities interested in joining efforts toward the wellbeing of people facing advanced illness and the end of life. In a relatively short period, Colombia has successfully promoted compassionate actions in seven cities and has begun to develop networks not only locally but also nationally. It is hoped that many more will join this effort to complement and strengthen palliative care

Compassion in palliative care: a review.

PURPOSE OF REVIEW: Compassion has been recognized as a key aspect of high-quality healthcare, particularly in palliative care. This article provides a general review of the current understanding of compassion in palliative care and summarizes emergent compassionate initiatives in palliative care at three interdependent levels: compassion for patients, compassion in healthcare professionals, and compassionate communities at the end of life. RECENT FINDINGS: Compassion is a constructive response to suffering that enhances treatment outcomes, fosters the dignity of the recipient, and provides self-care for the giver. Patients and healthcare professionals value compassion and perceive a general lack of compassion in healthcare systems. Compassion for patients and for professionals' self-care can be trained and implemented top-down (institutional policies) and bottom-up (compassion training). 'Compassionate communities' is an important emerging movement that complements regular healthcare and social services with a community-level approach to offer compassionate care for people at the end of life. SUMMARY: Compassion can be enhanced through diverse methodologies at the organizational, professional, and community levels. This enhancement of compassion has the potential to improve quality of palliative care treatments, enhance healthcare providers' satisfaction, and reduce healthcare costs.

Development and Management of Networks of Care at the End of Life (the REDCUIDA Intervention): Protocol for a Nonrandomized Controlled Trial.

BACKGROUND: End-of-life needs can be only partly met by formalized health and palliative care resources. This creates the opportunity for the social support network of family and community to play a crucial role in this stage of life. Compassionate communities can be the missing piece to a complete care model at the end of life. OBJECTIVE: The main objective of this study is to evaluate the REDCUIDA (Redes de Cuidados or Network of Care) intervention for the development and management of networks of care around people with advanced disease or at the end of life. METHODS: The study is a 2-year nonrandomized controlled trial using 2 parallel groups. For the intervention group, we will combine palliative care treatment with a community promoter intervention, compared with a control group without intervention. Participants will be patients under a community palliative care team's supervision with and without intervention. The community promotor will deliver the intervention in 7 sessions at 2 levels: the patient and family level will identify unmet needs, and the community level will activate resources to develop social networks to satisfy patient and family needs. A sample size of 320 patients per group per 100,000 inhabitants will offer adequate information and will give the study 80% power to detect a 20% increase in unmet needs, decrease families' burden, improve families' satisfaction, and decrease the use of health system resources, the primary end point. Results will be based on patients' baseline and final analysis (after 7 weeks of the intervention). We will carry out descriptive analyses of variables related to patients' needs and of people involved in the social network. We will analyze pre- and postintervention data for each group, including measures of central tendency, confidence intervals for the 95% average, contingency tables, and a linear regression. For continuous variables, we will use Student t test to compare independent samples with normal distribution and Mann-Whitney U test for nonnormal distributions. For discrete variables, we will use Mann-Whitney U test. For dichotomous variables we will use Pearson chi-square test. All tests will be carried out with a significance level alpha=.05. RESULTS: Ethical approval for this study was given by the Clinical Research Committee of Andalusian Health Service, Spain (CI 1020-N-17), in June 2018. The community promoter has been identified, received an expert community-based palliative care course, and will start making contacts in the community and the palliative care teams involved in the research project. CONCLUSIONS: The results of this study will provide evidence of the benefit of the REDCUIDA protocol on the development and assessment of networks of compassionate communities at the end of life. It will provide information about clinical and emotional improvements, satisfaction, proxy burden, and health care resource consumption regarding patients in palliative care. REGISTERED REPORT IDENTIFIER: RR1-10.2196/10515.

All with You: a new method for developing compassionate communities-experiences in Spain and Latin-America.

BACKGROUND: In recent years, compassion has motivated the development of programs oriented to create communities and societies involved in the relief of suffering. The development of compassionate communities and cities begins in each one of us, though it relies on organizations, providers and societies as a whole who need tools and methodologies as a part of a set of actions to help compassionate communities and cities to become a reality rooted widely in social values. In order to describe the "All with You®" methodology and its components: a method designed to develop compassionate communities and cities at the end of life that can be extended to organizations, communities, municipalities, cities or countries. In addition, this article tries to describe several experiences from applying the method in different cities and contexts. METHODS: A search of models for the development of compassionate communities was carried out initially to guide the elements and phases that could help to create a systematized method that will help organizations to create compassionate communities. After analysing the results, alliances were established with some of the main promoters at the time in the development of compassionate communities to validate the designed method. The city of Seville (Spain) was selected to validate the phases of the method and analyse the results based on a series of indicators. Finally, the methodology is being spread throughout cities in various countries, and the experiences are being evaluated with common indicators. RESULTS: The "All with You®" method (Todos Contigo® in Spanish) has been developed as a systematic approach that enables anyone interested in building compassionate communities or cities to include all of the elements outlined in the Compassionate City Charter. All with You® is a method that includes eight phases that allows organizations to be guided in the development of compassionate communities and cities towards a certification process that is evaluated through a series of structures, process and results indicators. The main actions of this method are based on social awareness, training, and the implementation of networks of care using innovative elements like Community Promoters and the RedCuida protocol to provide support, backing and care for those who face advanced chronic disease and end of life situations. Several cities in Spain and Latin America have already joined the movement of compassionate cities using this method, including four in Spain (Seville, Badajoz, Getxo and Pamplona), four in Colombia (Cali, Medellin, Fusagasugá and Bogotá) and one in Argentina (Buenos Aires). CONCLUSIONS: The All with You® method has made the development of compassionate communities and cities possible, aligning organizations and cities to promote compassionate acts, and to start creating networks involved in a global community united by a vocation for caring.

A new method for developing compassionate communities and cities movement-"Todos Contigo" Programme (We are All With You): experience in Spain and Latin America countries.

Todos Contigo (We are All With You) is a programme for social awareness, training, and implementation of care networks for citizens to support, accompany and care for those who face advanced chronic disease and end of life situations. From New Health Foundation this programme collaborates with the Public Health and Palliative Care International Charter of Compassionate Communities. It seeks to promote a new integrated palliative care model in the daily lives of individuals, to make families and health/social professionals the main promoters of compassionate communities and compassionate cities movement. This workshop aims to: (I) describe the methodology of the programme: required tools and steps for building and developing a compassionate city or community; (II) identify stakeholders and organizations to join the compassionate community as networking agents; (III) sharing experiences from the implementation of this project in various contexts while providing specific examples and lessons learned from the perspective of various roles; (IV) explain the process of becoming a part of the project and of getting the official recognition for being a compassionate city. This workshop aims to share a new methodology "Todos Contigo" (We are all with you) Programme for the development of compassionate communities and cities movement. We describe our experiences in Spain and Latin American countries. The method is based on creating community networks, carrying out social awareness and training programmes related to end of life care.

Actividad asistencial y costes en los últimos 3 meses de vida de pacientes fallecidos con cáncer en Euskadi / Care costs and activity in the last three months of life of cancer patients who died in the Basque Country (Spain)

Objetivo: Analizar el consumo de recursos sanitarios y su coste en los últimos meses de vida de la población fallecida por neoplasia maligna en la Comunidad Autónoma del País Vasco. Método: Estudio retrospectivo observacional sobre una población con diagnóstico de neoplasia maligna fallecida en el País Vasco (2010 y 2011). Fuente de datos: Conjunto Mínimo Básico de Datos y Registro de Mortalidad. Variables: sexo, edad, lugar de defunción, localización del tumor, actividad asistencial y costes en los últimos 3 meses de vida. Análisis descriptivo de la actividad asistencial y costes. Regresiones lineales multivariadas para obtener los costes medios ajustados según sexo, edad y lugar de defunción. Resultados: Se identificaron 9333 fallecidos/as por neoplasia maligna durante 2010 y 2011. El 65,4% eran hombres, el 61,5% tenían 70 o más años de edad, la edad media era de 72,9 años y el 71,1% falleció en el hospital. Las personas fallecidas en el hospital tuvieron un coste medio de casi el doble con respecto a las fallecidas en el domicilio (14.794 euros y 7.491 euros, respectivamente; p <0,001), y un 31,3% superior al de la residencia (11.269 euros; p <0,001). Conclusiones: Es necesaria una mayor capacidad de intervención al final de la vida en el nivel comunitario, reforzando la capacidad de atención desde la atención primaria, tanto desde su capacitación como desde el soporte de equipos expertos con el fin de cambiar el perfil actual de atención hacia una mayor atención extrahospitalaria que permita un menor consumo de recursos y una mayor atención en el domicilio (AU)

Objective: To analyse the use of health resources and its budget in the last months of life of the population who died from malignant neoplasm in the Basque Autonomous Country (Spain). Method: Retrospective observational study of a population with a diagnosis of malignancy deceased in the Basque Country (2010 and 2011). Data source: MDS and Mortality Register. Variables: gender, age, place of death, tumour location, clinical activity data and costs in the last three months of life. We performed a descriptive analysis of clinical activity and costs, and lineal multivariate regressions to obtain the adjusted mean costs by gender, age and place of death. Results: 9,333 deaths from malignancy were identified in 2010 and 2011. 65.4% were men, 61.5% aged 70 or over, mean age 72.9 years, 71.1% died in hospital. People who died in the hospital had an average cost of about double that of the people who died at home (euros14,794 and euros7,491, respectively; p <0.001) and 31.3% higher than in the nursing home (euros11,269; p <0.001). Conclusions: Greater interventions at the end of life at the community level are necessary, strengthening the care capacity of primary health care, both from training and support from expert teams in order to change the current care profile to a more outpatient care that allows a lower consumption of resources and greater care at home (AU)

Grupo de Trabajo de la SECPAL de Comunidades Compasivas al final de la vida / SECPAL Working Group of Compassionate Communities at the End of Life

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[Care costs and activity in the last three months of life of cancer patients who died in the Basque Country (Spain)]. / Actividad asistencial y costes en los últimos 3 meses de vida de pacientes fallecidos con cáncer en Euskadi.

OBJECTIVE: To analyse the use of health resources and its budget in the last months of life of the population who died from malignant neoplasm in the Basque Autonomous Country (Spain). METHOD: Retrospective observational study of a population with a diagnosis of malignancy deceased in the Basque Country (2010 and 2011). DATA SOURCE: MDS and Mortality Register. VARIABLES: gender, age, place of death, tumour location, clinical activity data and costs in the last three months of life. We performed a descriptive analysis of clinical activity and costs, and lineal multivariate regressions to obtain the adjusted mean costs by gender, age and place of death. RESULTS: 9,333 deaths from malignancy were identified in 2010 and 2011. 65.4% were men, 61.5% aged 70 or over, mean age 72.9 years, 71.1% died in hospital. People who died in the hospital had an average cost of about double that of the people who died at home (€14,794 and €7,491, respectively; p <0.001) and 31.3% higher than in the nursing home (€11,269; p <0.001). CONCLUSIONS: Greater interventions at the end of life at the community level are necessary, strengthening the care capacity of primary health care, both from training and support from expert teams in order to change the current care profile to a more outpatient care that allows a lower consumption of resources and greater care at home.