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 in

Caregivers burden in palliative care patients: a problem to tackle

Family members who are close to the patient may play the role of caregiver, well-being enhancer, diversity of tasks fulfiller, minimizer and managing suffering, palliative care facilitator and responsible for the continuity of care, apprentice and participant of health teams. The family caregiver often gives priority to the problems of his dependent family member, becoming almost ‘invisible’ to the health system. It should also be consider the relevance of this issue into future bereavement process. Considering all these aspects, the family caregiver is often considered by the healthcare teams as ‘overall tasks’ performers’

Análisis de costo-efectividad de los cuidados paliativos a pacientes oncológicos de fin de vida

En pacientes con enfermedad terminal, los servicios de cuidados paliativos do- miciliarios pueden alinear sus preferencias de cuidado en domicilio con resul- tados sanitarios deseables. El objetivo fue estudiar la costo-efectividad de los cuidados paliativos domiciliarios en pacientes oncológicos en el último año de vida en el subsector público de salud de una provincia argentina. Se desarrolló un modelo de Markov de costo-efectividad desde una perspectiva social y del financiador de salud, de modo que el mismo pudiera reflejar la realidad de los cuidados paliativos domiciliarios en el ámbito local, en comparación con los cuidados habituales. Se calcularon los costos directos para el sistema de salud, con base en información local, así como también los costos indirectos de los cuidados informales no remunerados. La provisión de cuidados palia- tivos incrementó en un 10,32% la probabilidad que los pacientes fallezcan en el hogar, en relación con los cuidados habituales, con un ahorro anual de USD 750 y USD 1.012 por paciente desde la perspectiva social y del financia- dor, respectivamente, en el subsector público de salud de Río Negro. Tanto des- de la perspectiva social como del financiador, la estrategia de implementación de un servicio organizado de cuidados tiene una mayor efectividad, medida en porcentaje de pacientes que fallecen en su domicilio, a un menor costo. El prin- cipal inductor de costos corresponde, desde la perspectiva social, a los cuidados informales provistos por las familias, mientras que desde la perspectiva del financiador corresponde a los salarios del personal de salud.Home palliative care services of terminal patients may associate home care preferences with desir- able health outcomes. This study aimed to evalu- ate the cost-effectiveness of home palliative care of cancer patients in the last year of life in the pub- lic health subsector in a province of Argentina. A cost-effectiveness Markov model was developed from a social and the health funder’s perspective in order to reflect the reality of home palliative care at the local level compared with usual care. Direct costs to the health system and indirect costs of unpaid informal care were estimated based on local information. Palliative care increased the likelihood of patients dying at home by 10.32% compared with usual care, with annual savings of USD 750 and USD 1,012 per patient, respectively, from both the social and the funder’s perspec- tive in the public health subsector in Río Negro. From both the social and financial perspective, the strategy to implement organized care services was more effective and lower-cost, measured by the percentage of patients who died at home. From a social perspective, the main cost inducer was the formal care provided by families, but from the funder’s perspective, it refers to the salaries of the health team.Os serviços de cuidados paliativos domiciliares de pacientes terminais podem associar as preferên- cias de cuidado domiciliar com resultados desejá- veis de saúde. O objetivo deste texto foi avaliar a relação custo-efetividade dos cuidados paliativos domiciliares em pacientes oncológicos no último ano de vida, no subsetor de saúde pública de uma província na Argentina. Um modelo Markov de custo-efetividade foi desenvolvido a partir de uma perspectiva social e do financiador de saúde para que pudesse refletir a realidade dos cuidados pa- liativos domiciliares em âmbito local comparado aos cuidados habituais. Os custos diretos para o sistema de saúde e os custos indiretos de cuidados informais não remunerados foram calculados com base em informações locais. A prestação de cuida- dos paliativos aumentou 10,32% a probabilidade de os doentes morrerem em casa em relação com os cuidados habituais, com uma economia anual de USD 750 e USD 1.012 por paciente, respeti- vamente, na perspectiva social e do financiador, no subsetor da saúde pública de Rio Negro. Tan- to do ponto de vista social como no financeiro, a estratégia de implantação de serviços de cuidados organizados foi mais eficaz e com menor custo, medida pelo percentual de pacientes que faleceram em casa. O principal indutor de custos correspon- de, do ponto de vista social, aos cuidados infor- mais prestados pelas famílias, enquanto do ponto de vista do financiador se refere aos salários da equipe de saúde

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

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

Report on palliative care development in Uruguay based on the WHO indicators

This report describes the current palliative care (PC) situation in Uruguay, highlighting the challenges the country faces in providing PC to over 17,000 Uruguayans who – according to estimates – require PC each year. Commissioned by the WHO - PAHO representation in Uruguay, the WHO Collaborating Centre ATLANTES organised a two-day workshop in Montevideo to examine and adapt the WHO PC development indicators to the Uruguayan context in collaboration with the National PC Program. WHO invited representatives from the health, education, ministries, and social organisations sectors, who worked on a data collection tool whose responses could be categorised into four levels of development: initial, intermediate, established, and advanced. The report highlights each indicator’s strengths and weaknesses and summarises the level of implementation in each area of the country. The empowerment of individuals and communities is explored through two indicators. The first reveals a strong presence of patient and family associations advocating for PC and promoting patient rights, as well as the existence of the Uruguayan Society of Medicine and Palliative Care (SUMCP). The second confirms the existence of a national policy on advance care planning (advanced level). Since 2013, there has been a National PC Plan. PC services are included in the list of health services provided by the primary level of care (with an audit mechanism carried out by the Ministry of Public Health (MSP)), and there is a national authority coordinating PC care crystallised in the National PC Program. The latter depends on and is based on the MSP. Although it has no budget, it has a growing scientific and technical structure with adequate staff (advanced level)

Report on palliative care development in Benin based on WHO indicators

Palliative care (PC) is increasingly seen as a global health issue. This report examines the current state of PC in Benin, Africa, and the challenges the country faces in providing accessible and effective PC to its citizens. It has been estimated that more than 62,000 Beninese people need PC every year. The report highlights the importance of PC and the efforts of organisations such as the World Health Assembly, the Lancet Commission and the Astana Declaration to encourage governments to integrate PC into their health plans and make it accessible to all. A two-day hybrid meeting was organised in Cotonou by the WHO Collaborating Centre ATLANTES with WHO-Geneva, WHO-AFRO and WHO-Benin to examine and adapt a set of indicators to cultural realities. The WHO chose Benin and involved stakeholders from the health system, secondary education, vocational training and higher education sectors, as well as the Benin PC Association. ATLANTES provided a data collection tool based on the WHO Conceptual Framework and a four-level rating system: early, intermediate, established and advanced stage. The report highlights the strengths and weaknesses of each indicator and provides a summary of the level of implementation in each area

Assessing quality of care for the dying from the bereaved relatives’ perspective: Using pre- testing survey methods across seven countries to develop an international outcome measure

Background: The provision of care for dying cancer patients varies on a global basis. In order to improve care, we need to be able to evaluate the current level of care. One method of assessment is to use the views from the bereaved relatives. Aim: The aim of this study is to translate and pre-test the ‘Care Of the Dying Evaluation’ (CODETM) questionnaire across seven participating countries prior to conducting an evaluation of current quality of care. Design: The three stages were as follows: (1) translation of CODE in keeping with standardised international principles; (2) pre-testing using patient and public involvement and cognitive interviews with bereaved relatives; and (3) utilising a modified nominal group technique to establish a common, core international version of CODE. Setting/participants: Hospital settings: for each country, at least five patient and public involvement representatives, selected by purposive sampling, fed back on CODETM questionnaire; and at least five bereaved relatives to cancer patients undertook cognitive interviews. Feedback was collated and categorised into themes relating to clarity, recall, sensitivity and response options. Structured consensus meeting held to determine content of international CODE (i-CODE) questionnaire. Results: In total, 48 patient and public involvement representatives and 35 bereaved relatives contributed to the pre-testing stages. No specific question item was recommended for exclusion from CODETM. Revisions to the demographic section were needed to be culturally appropriate. Conclusion: Patient and public involvement and bereaved relatives’ perceptions helped enhance the face and content validity of i-CODE. A common, core international questionnaire is now developed with key questions relating to quality of care for the dying

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

Background. Recognized disparities in quality of end-of-life care exist. Our aim was to assess the quality of care for patients dying from cancer, as perceived by bereaved relatives, within hospitals in seven European and South American countries. Materials and Methods. A postbereavement survey was conducted by post, interview, or via tablet in Argentina, Brazil, Uruguay, U.K., Germany, Norway, and Poland. Next of kin to cancer patients were asked to complete the inter- national version of the Care Of the Dying Evaluation (i- CODE) questionnaire 6–8 weeks postbereavement. Pri- mary outcomes were (a) how frequently the deceased patient was treated with dignity and respect, and (b) how well the family member was supported in the patient’s last days of life. Results. Of 1,683 potential participants, 914 i-CODE questionnaires were completed (response rate, 54%). Approximately 94% reported the doctors treated their fam- ily member with dignity and respect “always” or “most of the time”; similar responses were given about nursing staff (94%). Additionally, 89% of participants reported they were adequately supported; this was more likely if the patient died on a specialist palliative care unit (odds ratio, 6.3; 95% confidence interval, 2.3–17.8). Although 87% of participants were told their relative was likely to die, only 63% were informed about what to expect during the dying phase. Conclusion. This is the first study assessing quality of care for dying cancer patients from the bereaved relatives’ perspective across several countries on two continents. Our findings suggest many elements of good care were practiced but improvement in communication with relatives of imminently dying patients is needed. (ClinicalTrials.gov Identifier: NCT03566732)

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

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

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.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.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