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.

How should Argentina raise Advance Care Planning awareness? Introduction of the Shared Care Planning Group.

The WHO Concept Model of Palliative Care emphasises empowering people and communities with Advance Care Planning (ACP). In Latin America, a more relational approach involving family members is suited to ACP. Improvements in doctor-patient-family relationships are needed. Policy efforts have been made to foster ACP in Argentina's healthcare system, but implementation barriers include a need for more communication skills and coordination between healthcare providers. The Shared Care Planning Group Argentina aims to promote ACP through research and training programs. It has sensitised and trained 236 healthcare providers in short courses to introduce basic information and skills. However, there needs to be specific documentation for ACP in Argentina. Research found obstacles to ACP implementation, such as the inability to converse with patients and the lack of coordination between healthcare teams. A new project will assess the self-efficacy of healthcare professionals who assist patients with Sclerosis Lateral Amyotrophic in ACP and evaluate a specific training program. Patient and public involvement in ACP remains limited in Argentina, with paternalistic medical culture and a need for more awareness and training among healthcare professionals as significant barriers. Collaborative research projects with Spain and Ecuador aim to train healthcare professionals and evaluate ACP implementation in other Latin American countries.

New embracing approach for better advanced cancer patient comprehensive care / Nuevo enfoque para mejorar el cuidado integral del paciente con cáncer avanzado

Abstract Introduction: Cancer patients have multiple and complex needs. Argentina has a medium-high cancer in cidence. Only 14% of patients with palliative care needs have access to specialized services. This study aimed to develop and implement an integrated cancer care model in three hospitals and at home based care level. Methods: The NECPAL2 was a prospective longitudi nal observational study. We report a two-year health care intervention and its implementation process. The NECPAL tool was used as a screening instrument. Adult cancer patients were recruited and assessed. NECPAL+ patients are those with a positive surprise question - Would you be surprised if this patient dies in the next year? (no)- and, at least one indicator of advanced disease. Patients were reassessed periodically with validated scales. Feedback was given for clinical case management. The project was developed in three consecutive stages and six phases. Data were collected for statistical analysis with a prognosis and palliative approach. Results: 2104 cancer patients screened. 681 were NECPAL+. 21% of them presented more than six pa rameters of severity or progression. The mean general survival was 8 months. 61.9% died within the follow-up period. Survival predictors were identified. Over 65% of patients were referred to palliative care; 10% received home-care. Areas for improvement were recognized. An implementation document was created. Discussion: This study showed that a predictive model is feasible, improving chances for timely referral and needs approach. It provided the basis for further implementation research and should encourage policy makers for embracing palliative model development for better cancer patient care.

Resumen Introducción: Los pacientes con cáncer tienen necesi dades múltiples y complejas que se deben atender opor tunamente en los distintos niveles del sistema sanitario. Argentina tiene una incidencia de cáncer media-alta pero solo el 14% de los pacientes acceden a cuidados paliativos. El objetivo de este estudio fue desarrollar e implementar un modelo multicéntrico de atención integral del paciente con cáncer avanzado. Métodos: El NECPAL2 fue un estudio observacional longitudinal prospectivo de dos años. Se evaluaron pacientes adultos con cáncer avanzado. Se utilizó la herramienta NECPAL como instrumento de cribado. Los pacientes NECPAL+ son aquellos con la pregunta sorpre sa positiva -¿Le sorprendería que este paciente muriera en el próximo año? (no)- y, al menos, un indicador de enfermedad avanzada. Los pacientes fueron reevaluados periódicamente con escalas validadas para la gestión clínica de casos. El proyecto se desarrolló en tres etapas consecutivas y seis fases. Se analizaron los resultados con un enfoque pronóstico y paliativo. Resultados: Se identificaron 2104 pacientes oncológicos, 681 eran NECPAL+. El 21% presentaba más de seis paráme tros de gravedad o progresión. Más del 60% de los pacientes NECPAL+ tenían una evaluación inicial multidimensional completa y documentada. La supervivencia media general fue de 8 meses. El 61.9% falleció durante el periodo de seguimiento. Se identificaron predictores de supervivencia. Más del 65% fueron derivados a cuidados paliativos; el 10% recibió atención domiciliaria. Se reconocieron áreas de mejora. Se creó un documento de recomendaciones. Discusión: Este estudio demostró que un modelo predictivo multicéntrico y en varios niveles es factible y mejora las posibilidades de derivación oportuna para atención paliativa. A pesar de las limitaciones este es tudio puede inspirar políticas para mejorar la atención integral de pacientes con cáncer avanzado.

New embracing approach for better advanced cancer patient comprehensive care.

INTRODUCTION: Cancer patients have multiple and complex needs. Argentina has a medium-high cancer incidence. Only 14% of patients with palliative care needs have access to specialized services. This study aimed to develop and implement an integrated cancer care model in three hospitals and at home based care level. METHODS: The NECPAL2 was a prospective longitudinal observational study. We report a two-year healthcare intervention and its implementation process. The NECPAL tool was used as a screening instrument. Adult cancer patients were recruited and assessed. NECPAL+ patients are those with a positive surprise question - Would you be surprised if this patient dies in the next year? (no)- and, at least one indicator of advanced disease. Patients were reassessed periodically with validated scales. Feedback was given for clinical case management. The project was developed in three consecutive stages and six phases. Data were collected for statistical analysis with a prognosis and palliative approach. RESULTS: 2104 cancer patients screened. 681 were NECPAL+. 21% of them presented more than six parameters of severity or progression. The mean general survival was 8 months. 61.9% died within the follow-up period. Survival predictors were identified. Over 65% of patients were referred to palliative care; 10% received home-care. Areas for improvement were recognized. An implementation document was created. DISCUSSION: This study showed that a predictive model is feasible, improving chances for timely referral and needs approach. It provided the basis for further implementation research and should encourage policymakers for embracing palliative model development for better cancer patient care.

Introducción: Los pacientes con cáncer tienen necesidades múltiples y complejas que se deben atender oportunamente en los distintos niveles del sistema sanitario. Argentina tiene una incidencia de cáncer media-alta pero solo el 14% de los pacientes acceden a cuidados paliativos. El objetivo de este estudio fue desarrollar e implementar un modelo multicéntrico de atención integral del paciente con cáncer avanzado. Métodos: El NECPAL2 fue un estudio observacional longitudinal prospectivo de dos años. Se evaluaron pacientes adultos con cáncer avanzado. Se utilizó la herramienta NECPAL como instrumento de cribado. Los pacientes NECPAL+ son aquellos con la pregunta sorpresa positiva - ¿Le sorprendería que este paciente muriera en el próximo año? (no)- y, al menos, un indicador de enfermedad avanzada. Los pacientes fueron reevaluados periódicamente con escalas validadas para la gestión clínica de casos. El proyecto se desarrolló en tres etapas consecutivas y seis fases. Se analizaron los resultados con un enfoque pronóstico y paliativo. Resultados: Se identificaron 2104 pacientes oncológicos, 681 eran NECPAL+. El 21% presentaba más de seis parámetros de gravedad o progresión. Más del 60% de los pacientes NECPAL+ tenían una evaluación inicial multidimensional completa y documentada. La supervivencia media general fue de 8 meses. El 61.9% falleció durante el periodo de seguimiento. Se identificaron predictores de supervivencia. Más del 65% fueron derivados a cuidados paliativos; el 10% recibió atención domiciliaria. Se reconocieron áreas de mejora. Se creó un documento de recomendaciones. Discusión: Este estudio demostró que un modelo predictivo multicéntrico y en varios niveles es factible y mejora las posibilidades de derivación oportuna para atención paliativa. A pesar de las limitaciones este estudio puede inspirar políticas para mejorar la atención integral de pacientes con cáncer avanzado.

Place of death and associated factors in 12 Latin American countries: A total population study using death certificate data.

Background: Little is known about place of death in Latin America, although this data are crucial for health system planning. This study aims to describe place of death and associated factors in Latin America and to identify factors that contribute to inter-country differences in place of death. Methods: We conducted a total population observational study using death certificates of the total annual decedent populations in 12 countries (Argentina, Brazil, Chile, Colombia, Costa Rica, El Salvador, Guatemala, Ecuador, Mexico, Paraguay, Peru, and Uruguay) for the most recent available year (2016, 2017, or 2018). Data were analysed regarding place of death and multivariable logistic regression with place of death as the dependent variable was used to examine associated clinical and sociodemographic factors (independent variables) in each of the countries. Results: The total study sample was 2 994 685 deaths; 31.3% of deaths occurred at home, and 57.6% in hospitals. A strong variation was found among the countries with home deaths ranging from 20% (Brazil) to 67.9% (Guatemala) and hospital deaths from 22.3% (Guatemala) to 69.5% (Argentina). These differences between countries remained largely unchanged after controlling for sociodemographic factors and causes of death. The likelihood of dying at home was consistently higher with increasing age, for those living in a rural area, and for those with a lower educational level (except in Argentina). Conclusions: Most deaths in Latin America occur in hospitals, with a strong variation between countries. As clinical and sociodemographic factors included in this study did not explain country differences, other factors such as policy and health care system seem to have a crucial impact on where people die in Latin America.

Feasibility of using death certificates for studying place of death in Latin America.

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.

Feasibility of using death certificates for studying place of death in Latin America

[ABSTRACT]. 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.

[RESUMEN]. Objetivo. En este artículo se evalúa la disponibilidad y la calidad de los datos del certificado de defunción en América Latina y la factibilidad de emplear estos datos para estudiar el lugar de defunción y factores asociados. Métodos. En este estudio comparativo, se recogieron ejemplos de certificados oficiales de defunción actuales y archivos digitales de datos que contenían información acerca de todas las defunciones que ocurrieron durante un año en 19 países latinoamericanos. Se recopilaron datos desde junio del 2019 hasta mayo del 2020. Se estudiaron los registros del lugar de la muerte y las variables asociadas. Los criterios para determinar la calidad de los datos fueron la exhaustividad, el número de causas de muerte mal definidas y la presentación oportuna de la información. Resultados. Los 19 países proporcionaron copias de los certificados oficiales de defunción actuales; en 18 de estos se registraba el lugar de la muerte. En todos los países fue posible distinguir entre hospital u otra institución de atención de salud, el hogar y otros. Se obtuvieron los archivos de datos digitales con los datos del certificado de defunción de 12 países y una región. Tres países tenían datos considerados de buena calidad y siete tenían datos considerados de calidad media. En los archivos de datos se incluyeron categorías para lugar de defunción y la mayoría de los factores predeterminados posiblemente asociados con el lugar de defunción. Conclusiones. La calidad de los conjuntos de datos se calificó de media a buena en 10 países. En consecuencia, es factible realizar un estudio internacional comparativo sobre el lugar de defunción y los factores asociados en América Latina con los datos del certificado de defunción.

[RESUMO]. Objetivo. Este estudo avalia a disponibilidade e a qualidade dos dados das declarações de óbito na América Latina e a viabilidade de usar esses dados para estudar o local do óbito e fatores associados. Métodos. Neste estudo comparativo, coletamos exemplos de declarações de óbito oficiais atuais e arquivos de dados digitais contendo informações sobre todos os óbitos que ocorreram durante 1 ano em 19 países latinoamericanos. Os dados foram coletados no período de junho de 2019 a maio de 2020. Foram estudados os registros do local do óbito e variáveis associadas. Os critérios de qualidade dos dados foram preenchimento completo, número de causas mal definidas de morte e oportunidade. Resultados. Todos os 19 países forneceram cópias das declarações de óbito oficiais atuais, e 18 deles registraram o local do óbito . Foi possível distinguir em todos os países entre hospital ou outra instituição de saúde, lar ou outro local. Arquivos de dados digitais com os dados das declarações de óbito foram disponibilizados por 12 países e 1 região. Três países tiveram dados considerados de alta qualidade, e sete tiveram dados considerados de qualidade média. As categorias de local do óbito e a maioria dos fatores predeterminados possivelmente associados ao local do óbito foram incluídos nos arquivos de dados. Conclusões. A qualidade dos conjuntos de dados foi classificada como média a alta em 10 países. Portanto, os dados de declarações de óbito possibilitam a realização de um estudo comparativo internacional sobre local do óbito e fatores associados na América Latina.

Feasibility of using death certificates for studying place of death in Latin America

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.

Análisis de los resultados de un programa de calidad en cuidados paliativos para los últimos días de vida. Diez años de experiencia / Analysis of the results of a palliative care quality program for the last days of life: ten years of experience

Las secuencias integradas de cuidado para últimos días de vida proponen estándares de calidad para optimizar la atención de pacientes y familias. Se implementó el Programa Asistencial Multidisciplinario Pallium (PAMPA ©) basado en estándares del International Collaborative for Best Care for the Dying Person en cuatro fases: inducción, implementación, diseminación y sustentabilidad, en cinco centros de salud en Argentina, entre 2008 y 2018. Se incluyeron 1237 pacientes adultos en situación de últimos días de vida, en seguimiento por equipos de cuidados paliativos entrenados en el PAMPA ©. Se efectuó una auditoría antes y después de la ejecución del programa, aún en curso. El rango de medianas de permanencia en los cinco centros desde el inicio de la secuencia hasta el fallecimiento fue de 16 a 178 horas. Se compararon objetivos de cuidado: control de síntomas, comunicación, necesidades multidimensionales, hidratación y nutrición, documentación de intervenciones y cuidados post mortem. El análisis conjunto mostró una mejoría del número de registros (p = 0.001). La comunicación del plan de cuidados con el paciente no mostró diferencias (p = 0.173). Se realizó capacitación y supervisión permanente a los equipos profesionales de quienes se registraron percepciones de la implementación. Los principales emergentes de este análisis cualitativo fueron: actitudes ante el programa, aportes fundamentales, fortalezas, debilidades y definición subjetiva del programa, reconocimiento de las singularidades culturales institucionales y su influencia en el cuidado. El PAMPA © demostró la factibilidad de un modelo de atención para pacientes y familias en final de vida, basado en estándares de calidad internacionales

The integrated care pathways for the last days of life propose quality standards optimizing the care of patients and families. The Pallium Multidisciplinary Assistance Program (PAMPA ©) was implemented based on standards of the International Collaborative for Best Care for the Dying Person in 4 phases: induction, implementation, dissemination and sustainability, in five health centers in Argentina, between 2008 and 2018. A total of 1237 adult patients in the last days of life were included and cared for by palliative care teams trained in PAMPA ©. An audit was conducted before and after the implementation of the Program, which is still going on. The median range of follow up into five centers from the beginning of the pathway until death varied from 16 to 178 hours. Care goals were compared: symptom control, communication, multidimensional needs, hydration and nutrition, documentation of interventions and post-mortem care. The overall analysis showed an improvement in the number of records (p = 0.001). The goal of communication on care plan to the patient showed no difference (p = 0.173). Continuous training, support and permanent teams' supervision were carried out and perceptions and impact of the implementation were registered. The main emerging items of the qualitative analysis were attitudes towards the program, fundamental contributions, strengths, weaknesses and subjective definition of the program, recognition of institutional cultural singularities and its influence on care. PAMPA © demonstrated its feasibility as a model of end of life care for patients and families, based on international quality standards

Dez anos de experiência. Resumo: As sequências integradas de cuidado para últimos dias de vida propõem padrões de qualidade para otimizar a atenção de pacientes e famílias. Implementou-se o Programa Assistencial Multidisciplinar Pallium (PAMPA ©) baseado em parâmetros do International Collaborative for Best Care for the Dying Person em quatro fases: indução, implementação, disseminação e sustentabilidade, em cinco centros de saúde na Argentina, entre 2008 e 2018. Se incluíram 1237 pacientes adultos em situação terminal, assistidos por equipes de cuidados paliativos treinadas no PAMPA ©. Fez-se uma auditoria antes e despois da execução do programa, que ainda está sendo desenvolvido. A média de permanência nos cinco centros desde o início da sequência até a morte deu entre 16 a 178 horas. Conferiram-se objetivos de cuidado: controle de sintomas, comunicação, necessidades multidimensionais, hidratação e nutrição, documentação de intervenções e cuidados post mortem.A análise conjunta tem evidenciado uma melhora do número de registros (p = 0.001). A comunicação do regime de cuidados com o paciente não mostrou diferenças (p = 0.173). Realizou-se capacitação e supervisão permanente às equipes profissionais e se registraram as percepções da implementação.Desta análise qualitativa surgiram notadamente: atitudes em fase do programa, contribuições fundamentais, fortalezas, fraquezas e definição subjetiva do programa, reconhecimento das singularidades culturais institucionais e sua influência no cuidado. O PAMPA © demonstrou a factibilidade de um modelo de atendimento para pacientes e famílias em estado terminal, baseado em padrões de qualidade internacionais

Development of an international Core Outcome Set (COS) for best care for the dying person: study protocol.

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.

[Analysis of the results of a palliative care quality program for the last days of life. Ten years of experience]. / Análisis de los resultados de un programa de calidad en cuidados paliativos para los últimos días de vida. Diez años de experiencia.

The integrated care pathways for the last days of life propose quality standards optimizing the care of patients and families. The Pallium Multidisciplinary Assistance Program (PAMPA ©) was implemented based on standards of the International Collaborative for Best Care for the Dying Person in 4 phases: induction, implementation, dissemination and sustainability, in five health centres in Argentina, between 2008 and 2018. A total of 1237 adult patients in the last days of life were included and cared for by palliative care teams trained in PAMPA©. An audit was conducted before and after the implementation of the Program, which is still going on. The median range of follow up into five centres from the beginning of the pathway until death varied from 16 to 178 hours. Care goals were compared: symptom control, communication, multidimensional needs, hydration and nutrition, documentation of interventions and post-mortem care. The overall analysis showed an improvement in the number of records (p = 0.001). The goal of communication on care plan to the patient showed no difference (p = 0.173). Continuous training, support and permanent teams supervision were carried out and perceptions and impact of the implementation were registered. The main emerging items of the qualitative analysis were: attitudes towards the program, fundamental contributions, strengths, weaknesses and subjective definition of the program, recognition of institutional cultural singularities and its influence on care. PAMPA© demonstrated its feasibility as a model of end of life care for patients and families, based on international quality standards.

Las secuencias integradas de cuidado para últimos días de vida proponen estándares de calidad para optimizar la atención de pacientes y familias. Se implementó el Programa Asistencial Multidisciplinario Pallium (PAMPA©) basado en estándares del International Collaborative for Best Care for the Dying Person en cuatro fases: inducción, implementación, diseminación y sustentabilidad, en cinco centros de salud en Argentina, entre 2008 y 2018. Se incluyeron 1237 pacientes adultos en situación de últimos días de vida, en seguimiento por equipos de cuidados paliativos entrenados en el PAMPA©. Se efectuó una auditoría antes y después de la ejecución del programa, aún en curso. El rango de medianas de permanencia en los cinco centros desde el inicio de la secuencia hasta el fallecimiento fue de 16 a 178 horas. Se compararon objetivos de cuidado: control de síntomas, comunicación, necesidades multidimensionales, hidratación y nutrición, documentación de intervenciones y cuidados post mortem. El análisis conjunto mostró una mejoría del número de registros (p = 0.001). La comunicación del plan de cuidados con el paciente no mostró diferencias (p = 0.173). Se realizó capacitación y supervisión permanente a los equipos profesionales de quienes se registraron percepciones de la implementación. Los principales emergentes de este análisis cualitativo fueron: actitudes ante el programa, aportes fundamentales, fortalezas, debilidades y definición subjetiva del programa, reconocimiento de las singularidades culturales institucionales y su influencia en el cuidado. El PAMPA© demostró la factibilidad de un modelo de atención para pacientes y familias en final de vida, basado en estándares de calidad internacionales.

Análisis de los resultados de un programa de calidad en cuidados paliativos para los óltimos días de vida: Diez aóos de experiencia / Analysis of the results of a palliative care quality program for the last days of life. Ten years of experience

Las secuencias integradas de cuidado para ó;ºltimos días de vida proponen estándares de calidad para optimizar la atenció;n de pacientes y familias. Se implementó; el Programa Asistencial Multidisciplinario Pallium (PAMPA©) basado en estándares del International Collaborative for Best Care for the Dying Person en cuatro fases: inducció;n, implementació;n, diseminació;n y sustentabilidad, en cinco centros de salud en Argentina, entre 2008 y 2018. Se incluyeron 1237 pacientes adultos en situació;n de ó;ºltimos días de vida, en seguimiento por equipos de cuidados paliativos entrenados en el PAMPA©. Se efectuó; una auditoría antes y despuó;©s de la ejecució;n del programa, aó;ºn en curso. El rango de medianas de permanencia en los cinco centros desde el inicio de la secuencia hasta el fallecimiento fue de 16 a 178 horas. Se compararon objetivos de cuidado: control de síntomas, comunicació;n, necesidades multidimensionales, hidratació;n y nutrició;n, documentació;n de intervenciones y cuidados post mortem. El análisis conjunto mostró; una mejoría del nó;ºmero de registros (p = 0.001). La comunicació;n del plan de cuidados con el paciente no mostró; diferencias (p = 0.173). Se realizó; capacitació;n y supervisió;n permanente a los equipos profesionales de quienes se registraron percepciones de la implementació;n. Los principales emergentes de este análisis cualitativo fueron: actitudes ante el programa, aportes fundamentales, fortalezas, debilidades y definició;n subjetiva del programa, reconocimiento de las singularidades culturales institucionales y su influencia en el cuidado. El PAMPA© demostró; la factibilidad de un modelo de atenció;n para pacientes y familias en final de vida, basado en estándares de calidad internacionales.

The integrated care pathways for the last days of life propose quality standards optimizing the care of patients and families. The Pallium Multidisciplinary Assistance Program (PAMPA©) was implemented based on standards of the International Collaborative for Best Care for the Dying Person in 4 phases: induction, implementation, dissemination and sustainability, in five health centres in Argentina, between 2008 and 2018. A total of 1237 adult patients in the last days of life were included and cared for by palliative care teams trained in PAMPA©. An audit was conducted before and after the implementation of the Program, which is still going on. The median range of follow up into five centres from the beginning of the pathway until death varied from 16 to 178 hours. Care goals were compared: symptom control, communication, multidimensional needs, hydration and nutrition, documentation of interventions and post-mortem care. The overall analysis showed an improvement in the number of records (p = 0.001). The goal of communication on care plan to the patient showed no difference (p = 0.173). Continuous training, support and permanent teams supervision were carried out and perceptions and impact of the implementation were registered. The main emerging items of the qualitative analysis were: attitudes towards the program, fundamental contributions, strengths, weaknesses and subjective definition of the program, recognition of institutional cultural singularities and its influence on care. PAMPA© demonstrated its feasibility as a model of end of life care for patients and families, based on international quality standards.

Withdrawing noninvasive ventilation at end-of-life care: is there a right time?

PURPOSE OF REVIEW: The purpose of this review is the 'when' and 'how' of the matter of withdrawing noninvasive ventilation (NIV) at end-of-life (EoL) setting, having in mind the implications for patients, families and healthcare team. RECENT FINDINGS: Several recent publications raised the place and potential applications of NIV at EoL setting. However, there are no clear guidelines about when and how to withdraw NIV in these patients. Continuing NIV in a failing clinical condition may unnecessarily prolong the dying process. This is particularly relevant as frequently, EoL discussions are started only when patients are in severe distress, and they have little time to discuss their preferences and decisions. SUMMARY: Better advanced chronic disease and EoL condition definitions, as well as identification of possible scenarios, should help to decision-making and find the appropriate time to initiate, withhold and withdraw NIV. This review emphasized the relevance of an integrated approach across illness' trajectories and key transitions of patients who will need EoL care and such sustaining support measure.

Prognostic factors in cancer patients with palliative needs identified by the NECPAL CCOMS-ICO© tool.

The early identification of patients with palliative needs has shown benefits in terms of quality of life and treatment goals. No prospective methods have been applied in Argentina to identify palliative needs in cancer patients. The NECPAL tool combines the physician's own insight with objective indicators of disease progression and indicators of chronic advanced conditions. The aim of this study was to identify prognostic factors of mortality in hospitalized and ambulatory patients with cancer and palliative needs according to the NECPAL tool in a University Hospital in Buenos Aires city. Study variables were obtained by interviews with 10 physicians in charge of 317 patients with cancer over a 2-year follow-up period. A total of 183 patients with palliative needs were labelled as NECPAL+. Of these, 137 died after a median 4-month follow-up period. The death rate was 11% patients/month. The mortality was higher in inpatients during the first month (p < 0.003). In the multivariate model, the best predictors of mortality combining relevant indicators were: inpatients (HR 1.87; 95% CI 1.24-2.84; p = 0.003), initial diagnosis other than breast cancer (HR 2.04; 95% CI 1.23-3.40; p = 0.006), metastatic disease (HR 1.67; 95% CI 1.15-2.42; p = 0.007), functional deterioration (HR 1.95; 95% CI 1.28-2.97; p = 0.002), and malnutrition (HR 1.53; 95% CI 1.04-2.23; p = 0.02 9). The major breakthrough was the systematic prospective identification of palliative needs in cancer patients for the first time in Argentina. The NECPAL tool can improve the prediction of mortality in hospital settings.

La identificación temprana de pacientes con necesidades paliativas ha demostrado beneficios en términos de calidad de vida y objetivos de tratamiento. En Argentina no han sido aplicados métodos prospectivos para identificar necesidades paliativas en pacientes con cáncer. El NECPAL CCOMS-ICO © combina la percepción del médico con indicadores objetivos de progresión de enfermedades crónicas avanzadas y es útil para determinar la prevalencia de pacientes con necesidades paliativas en la población general. El objetivo fue identificar factores pronósticos de mortalidad en pacientes internados y ambulatorios con cáncer y necesidades paliativas según NECPAL en un Hospital Universitario de la ciudad de Buenos Aires. Las variables se obtuvieron mediante entrevistas a 10 médicos a cargo de 317 pacientes con cáncer y necesidades paliativas durante dos años de seguimiento. Los predictores de mortalidad en el modelo multivariado fueron: hospitalización (HR 1.87; IC 95% 1.24-2.84; p = 0.003), diagnóstico distinto de cáncer de mama (HR 2.04; IC 95% 1.23-3.40; p = 0.006), enfermedad metastásica (HR 1.67; IC 95% 1.15-2.42; p = 0.007), deterioro funcional (HR 1.95; IC 95% 1.28-2.97; p = 0.002) y nutricional (HR 1.53; IC 95% 1.04-2.23; p = 0.029). De los 183 pacientes con necesidades paliativas identificados como NECPAL+, 137 murieron en un período medio de 4 meses. La tasa de mortalidad fue 11% por mes. La mortalidad fue mayor (p < 0.003) en el primer mes de hospitalización. El mayor logro fue la identificación sistemática y prospectiva, por primera vez en Argentina, de necesidades paliativas en pacientes con cáncer. La herramienta NECPAL puede mejorar la predicción de la mortalidad en entornos hospitalarios.

Prognostic factors in cancer patients with palliative needs identified by the NECPAL CCOMS-ICO© TOOL

The early identification of patients with palliative needs has shown benefits in terms of quality of life and treatment goals. No prospective methods have been applied in Argentina to identify palliative needs in cancer patients. The NECPAL tool combines the physician's own insight with objective indicators of disease progression and indicators of chronic advanced conditions. The aim of this study was to identify prognostic factors of mortality in hospitalized and ambulatory patients with cancer and palliative needs according to the NECPAL tool in a University Hospital in Buenos Aires city. Study variables were obtained by interviews with 10 physicians in charge of 317 patients with cancer over a 2-year follow-up period. A total of 183 patients with palliative needs were labelled as NECPAL+. Of these, 137 died after a median 4-month follow-up period. The death rate was 11% patients/month. The mortality was higher in inpatients during the first month (p < 0.003). In the multivariate model, the best predictors of mortality combining relevant indicators were: inpatients (HR 1.87; 95% CI 1.24-2.84; p = 0.003), initial diagnosis other than breast cancer (HR 2.04; 95% CI 1.23-3.40; p = 0.006), metastatic disease (HR 1.67; 95% CI 1.15-2.42; p = 0.007), functional deterioration (HR 1.95; 95% CI 1.28-2.97; p = 0.002), and malnutrition (HR 1.53; 95% CI 1.04-2.23; p = 0.02 9). The major breakthrough was the systematic prospective identification of palliative needs in cancer patients for the first time in Argentina. The NECPAL tool can improve the prediction of mortality in hospital settings.

La identificación temprana de pacientes con necesidades paliativas ha demostrado beneficios en términos de calidad de vida y objetivos de tratamiento. En Argentina no han sido aplicados métodos prospectivos para identificar necesidades paliativas en pacientes con cáncer. El NECPAL CCOMS-ICO © combina la percepción del médico con indicadores objetivos de progresión de enfermedades crónicas avanzadas y es útil para determinar la prevalencia de pacientes con necesidades paliativas en la población general. El objetivo fue identificar factores pronósticos de mortalidad en pacientes internados y ambulatorios con cáncer y necesidades paliativas según NECPAL en un Hospital Universitario de la ciudad de Buenos Aires. Las variables se obtuvieron mediante entrevistas a 10 médicos a cargo de 317 pacientes con cáncer y necesidades paliativas durante dos años de seguimiento. Los predictores de mortalidad en el modelo multivariado fueron: hospitalización (HR 1.87; IC 95% 1.24-2.84; p = 0.003), diagnóstico distinto de cáncer de mama (HR 2.04; IC 95% 1.23-3.40; p = 0.006), enfermedad metastá sica (HR 1.67; IC 95% 1.15-2.42; p = 0.007), deterioro funcional (HR 1.95; IC 95% 1.28-2.97; p = 0.002) y nutricional (HR 1.53; IC 95% 1.04-2.23; p = 0.029). De los 183 pacientes con necesidades paliativas identificados como NECPAL+, 137 murieron en un período medio de 4 meses. La tasa de mortalidad fue 11% por mes. La mortalidad fue mayor (p < 0.003) en el primer mes de hospitalización. El mayor logro fue la identificación sistemática y prospectiva, por primera vez en Argentina, de necesidades paliativas en pacientes con cáncer. La herramienta NECPAL puede mejorar la predicción de la mortalidad en entornos hospitalarios.

[Medical futility and family obstinacy in intensive therapy. When to stop and when to keep going?] / Futilidad médica y obstinación familiar en terapia intensiva. ¿Hasta cuándo seguir y cuándo parar?

There have been several recent publications related to therapeutic obstinacy and futility in the Intensive Care Unit. However, little has been published about "the family obstinacy" in persisting with invasive measures in seriously ill patients, despite the appropriate information provided to them about the patient's poor short-term prognosis. On certain occasions, these critical patients are unable to make decisions on the proposed treatments and, unfortunately, many of them have not previously indicated their preferences in terms of limits to invasive measures (advanced directives). Thus, the patient's relatives are the ones who finally assume this arduous task and, in several occasions, they make decisions that do not correspond with the patient's actual wishes. Palliative medicine is of invaluable help in the difficult goal of improving communication among doctors, patients and patients relatives. Limits to intervention can be difficult and vague, generating multiple problems in the decision-making process. On certain occasions and despite adequate information provided by therapists and palliative care doctors, patients' relatives do not accept professional directives indicating to stop invasive interventions. Understanding futility justification may be relevant to the appropriate resolution of these disputes. In this article, we intend to discuss the subject "futility in Intensive Care Unit" and how to face the seldom addressed "family obstinacy" issue in potentially unrecoverable situations, despite adequate medical information.

[When to consult the institutional bioethics committee? The deliberative method for resolving possible dilemmas]. / ¿Cuándo acudir al comité de bioética institucional? El método deliberativo para resolver posibles dilemas.

In healthcare, an ethical concern that arises during the decision making process is considered to be a bioethical dilemma. It is often the case that in the absence of proper deliberation, the problem is transferred to a bioethics committee, not even representing precisely a dilemma. Bioethics emerged as a discipline in the mid-20th century. It is defined as a support to decision-making in ethical dilemmas centered on two aspects: ethics of clinical investigation, focused on protecting the rights of research subjects, and bioethics in medical practice, of an advisory nature. To recognize the difference among difficult or complex clinical circumstances and ethical dilemmas could allow knowing when it is necessary to request for advice of a committee. It is not so much a question of deciding what is right or wrong, but which is the most advisable solution to a problem. We review the history of Bioethics Committees in Argentina that are facing today the challenge of promoting social responsibility and opening deliberations to community and health professionals. In the 20th century two historical moments are recognized: a pioneering and slow first period, and a second one of legal regulatory framework. Considering deliberation as a method of ethics, this article proposes a case analysis procedure and the deliberative method to elucidate dilemmas, with or without the help of a Committee.

Futilidad médica y obstinación familiar en terapia intensiva: ¿Hasta cuándo seguir y cuándo parar? / Medical futility and family obstinacy in intensive therapy. When to stop and when to keep going?

En las últimas décadas han aparecido múltiples publicaciones sobre obstinación terapéutica y futilidad en la Unidad de Terapia Intensiva. Sin embargo, poco se ha publicado sobre la "obstinación familiar" en continuar con medidas invasivas en pacientes graves, a pesar de una adecuada información sobre su muy mal pronóstico a corto plazo. En determinadas ocasiones, estos pacientes críticos no están en condiciones de tomar decisiones sobre los tratamientos propuestos y lamentablemente muchos de ellos no han dejado testimonio previo sobre sus preferencias en cuanto hasta dónde avanzar en medidas invasivas (directivas anticipadas). De esta manera, son los familiares quienes quedan a cargo de estas decisiones, que pueden no coincidir con lo que el paciente hubiera deseado. Con la medicina paliativa se ha generado una invalorable ayuda a la difícil tarea de la comunicación entre el médico, el paciente y la familia. Los límites de las intervenciones pueden ser difíciles e imprecisos, generando múltiples problemas en la toma de decisiones. En determinadas ocasiones, a pesar de una adecuada información de los médicos intensivistas y paliativistas, algunos familiares no aceptan las directivas de no avanzar con medidas invasivas. Comprender la justificación de la futilidad puede ser relevante para resolver disputas de la forma más adecuada. Este trabajo propone discutir el tema de la futilidad en Terapia Intensiva y cómo encarar el problema tan poco abordado de la "obstinación familiar" ante situaciones potencialmente irrecuperables, pese a una adecuada información médica.

There have been several recent publications related to therapeutic obstinacy and futility in the Intensive Care Unit. However, little has been published about "the family obstinacy" in persisting with invasive measures in seriously ill patients, despite the appropriate information provided to them about the patient's poor short-term prognosis. On certain occasions, these critical patients are unable to make decisions on the proposed treatments and, unfortunately, many of them have not previously indicated their preferences in terms of limits to invasive measures (advanced directives). Thus, the patient's relatives are the ones who finally assume this arduous task and, in several occasions, they make decisions that do not correspond with the patient's actual wishes. Palliative medicine is of invaluable help in the difficult goal of improving communication among doctors, patients and patients relatives. Limits to intervention can be difficult and vague, generating multiple problems in the decision-making process. On certain occasions and despite adequate information provided by therapists and palliative care doctors, patients' relatives do not accept professional directives indicating to stop invasive interventions. Understanding futility justification may be relevant to the appropriate resolution of these disputes. In this article, we intend to discuss the subject "futility in Intensive Care Unit" and how to face the seldom addressed "family obstinacy" issue in potentially unrecoverable situations, despite adequate medical information.

¿Cuándo acudir al comité de bioética institucional?: El método deliberativo para resolver posibles dilemas / When to consult the institutional bioethics committee? The deliberative method for resolving possible dilemmas

En cuestiones de salud, cuando en el proceso de toma de decisiones se produce alguna tensión entre principios éticos, se considera estar frente a un dilema bioético. Puede suceder que, ante la falta de reflexión, se traslade a un Comité de Bioética Asistencial la resolución de problemas complejos que no constituyen estrictamente un dilema. La bioética surge como disciplina a mediados del siglo XX. Se define como una ayuda para la toma de decisiones en los dilemas éticos, centrada en dos aspectos: la ética de investigación para proteger los derechos de los sujetos de investigación; y la bioética asistencial, de carácter consultivo. Diferenciar entre situaciones clínicas difíciles o complejas y dilemas éticos, propiamente dichos, teniendo en cuenta los valores implicados, permitiría saber cuándo es necesario pedir un asesoramiento a un Comité. No se trata tanto de decidir qué es correcto o incorrecto, cuanto de cuál es la solución más recomendable a un problema. Se revisa la historia de los Comités de Bioética en Argentina que afrontan hoy el desafío de promover la responsabilidad social, abriendo las deliberaciones hacia la comunidad y los profesionales de la salud. En el siglo XX se distinguen dos momentos históricos: una primera etapa lenta y pionera y una segunda que obedece a la existencia del marco regulatorio legal. Teniendo en cuenta a la deliberación como método de la ética, este artículo propone un procedimiento de análisis de casos y el método deliberativo para resolver situaciones dilemáticas, con o sin la ayuda de un Comité.

In healthcare, an ethical concern that arises during the decision making process is considered to be a bioethical dilemma. It is often the case that in the absence of proper deliberation, the problem is transferred to a bioethics committee, not even representing precisely a dilemma. Bioethics emerged as a discipline in the mid-20th century. It is defined as a support to decision-making in ethical dilemmas centered on two aspects: ethics of clinical investigation, focused on protecting the rights of research subjects, and bioethics in medical practice, of an advisory nature. To recognize the difference among difficult or complex clinical circumstances and ethical dilemmas could allow knowing when it is necessary to request for advice of a committee. It is not so much a question of deciding what is right or wrong, but which is the most advisable solution to a problem. We review the history of Bioethics Committees in Argentina that are facing today the challenge of promoting social responsibility and opening deliberations to community and health professionals. In the 20th century two historical moments are recognized: a pioneering and slow first period, and a second one of legal regulatory framework. Considering deliberation as a method of ethics, this article proposes a case analysis procedure and the deliberative method to elucidate dilemmas, with or without the help of a Committee.

[Palliative care needs in advanced chronic illness]. / Atención paliativa en personas con enfermedades crónicas avanzadas.

About 75% of population will die from one or more chronic progressive diseases. From this projection WHO urged countries to devise strategies for strengthening palliative treatment as part of comprehensive care. In Catalonia, Spain, direct measurement of the prevalence of these patients with NECPAL CCOMS-ICO© tool was 1.5% of the population. This tool is an indicative, not dichotomous, quali-quantitative multifactorial evaluation to be completed by the treating physician. In Argentina there is no information on these patients. Our goal was to explore and characterize the proportion of chronically ill patients in palliative care needs, by NECPAL CCOMS-ICO© tool, in an accessible population of the City of Buenos Aires. General hospitals of the Health Region 2 (Piñero, álvarez and Santojanni) and its program areas were surveyed. In Health Region 1, we surveyed the Udaondo gastroenterology hospital. A total of 53 physicians (704 patients) were interviewed. It was identified that 29.5% of these patients were affected by advanced chronic diseases; 72.1% of them were NECPAL positive, younger (median 64) than in others studies, and more than 98% presented high levels of comorbidity. Palliative care demand (31.4%) and needs (52.7%) were recorded. Specific indicators of fragility, progression, severity and kind of chronic disease were described. The main finding was to identify, with an instrument not based on mortality that, in Buenos Aires City, 1 in 3 patients with chronic diseases could die in the next year and had palliative care needs.