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Culture and end of life care: a scoping exercise in seven European countries.

ABSTRACT: AIM:Culture is becoming increasingly important in relation to end of life (EoL) care in a context of globalization, migration and European integration. We explore and compare socio-cultural issues that shape EoL care in seven European countries and critically appraise the existing research evidence on cultural issues in EoL care generated in the different countries. METHODS:We scoped the literature for Germany, Norway, Belgium, The Netherlands, Spain, Italy and Portugal, carrying out electronic searches in 16 international and country-specific databases and handsearches in 17 journals, bibliographies of relevant papers and webpages. We analysed the literature which was unearthed, in its entirety and by type (reviews, original studies, opinion pieces) and conducted quantitative analyses for each country and across countries. Qualitative techniques generated themes and sub-themes. RESULTS:A total of 868 papers were reviewed. The following themes facilitated cross-country comparison: setting, caregivers, communication, medical EoL decisions, minority ethnic groups, and knowledge, attitudes and values of death and care. The frequencies of themes varied considerably between countries. Sub-themes reflected issues characteristic for specific countries (e.g. culture-specific disclosure in the southern European countries). The work from the seven European countries concentrates on cultural traditions and identities, and there was almost no evidence on ethnic minorities. CONCLUSION:This scoping review is the first comparative exploration of the cultural differences in the understanding of EoL care in these countries. The diverse body of evidence that was identified on socio-cultural issues in EoL care, reflects clearly distinguishable national cultures of EoL care, with differences in meaning, priorities, and expertise in each country. The diverse ways that EoL care is understood and practised forms a necessary part of what constitutes best evidence for the improvement of EoL care in the future.

SUBMITTER: Gysels M

PROVIDER: S-EPMC3317929 | biostudies-literature | 2012

REPOSITORIES: biostudies-literature

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Culture and end of life care: a scoping exercise in seven European countries.

Gysels Marjolein M Evans Natalie N Meñaca Arantza A Andrew Erin E Toscani Franco F Finetti Sylvia S Pasman H Roeline HR Higginson Irene I Harding Richard R Pool Robert R

PloS one 20120403 4

<h4>Aim</h4>Culture is becoming increasingly important in relation to end of life (EoL) care in a context of globalization, migration and European integration. We explore and compare socio-cultural issues that shape EoL care in seven European countries and critically appraise the existing research evidence on cultural issues in EoL care generated in the different countries.<h4>Methods</h4>We scoped the literature for Germany, Norway, Belgium, The Netherlands, Spain, Italy and Portugal, carrying ...[more]

PMID: 22509278

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Project description:BackgroundEnd-of-life (EoL) care volunteers in hospitals are a novel approach to support patients and their close ones. The iLIVE Volunteer Study supported hospital volunteer coordinators from five European countries to design and implement an EoL care volunteer service on general wards in their hospitals. This study aimed to identify and explore barriers and facilitators to the implementation of EoL care volunteer services in the five hospitals.MethodsVolunteer coordinators (VCs) from the Netherlands (NL), Norway (NO), Slovenia (SI), Spain (ES) and United Kingdom (UK) participated in a focus group interview and subsequent in-depth one-to-one interviews. A theory-inspired framework based on the five domains of the Consolidated Framework for Implementation Research (CFIR) was used for data collection and analysis. Results from the focus group were depicted in radar charts per hospital.ResultsBarriers across all hospitals were the COVID-19 pandemic delaying the implementation process, and the lack of recognition of the added value of EoL care volunteers by hospital staff. Site-specific barriers were struggles with promoting the service in a highly structured setting with many stakeholders (NL), negative views among nurses on hospital volunteering (NL, NO), a lack of support from healthcare professionals and the management (SI, ES), and uncertainty about their role in implementation among VCs (ES). Site-specific facilitators were training of volunteers (NO, SI, NL), involving volunteers in promoting the service (NO), and education and awareness for healthcare professionals about the role and boundaries of volunteers (UK).ConclusionEstablishing a comprehensive EoL care volunteer service for patients in non-specialist palliative care wards involves multiple considerations including training, creating awareness and ensuring management support. Implementation requires involvement of stakeholders in a way that enables medical EoL care and volunteering to co-exist. Further research is needed to explore how trust and equal partnerships between volunteers and professional staff can be built and sustained.Trial registrationNCT04678310. Registered 21/12/2020.

Project description:BackgroundTo date, there is no coordinated strategy for end-of-life (EOL) cancer care research in Europe. The PRISMA (Reflecting the Positive Diversities of European Priorities for Research and Measurement in End-of-life Care) project is aiming to develop a programme integrating research and measurement in EOL care. This survey aimed to map and describe present EOL cancer care research in Europe and to identify priorities and barriers.Material and methodsA questionnaire of 62 questions was developed and 201 researchers in 41 European countries were invited to complete it online in May 2009. An open invitation to participate was posted on the internet.ResultsInvited contacts in 36 countries sent 127 replies; eight additional responses came through websites. A total of 127 responses were eligible for analysis. Respondents were 69 male and 58 female, mean age 49 (28-74) years; 85% of the scientific team leaders were physicians. Seventy-one of 127 research groups were located in a teaching hospital or cancer centre. Forty-five percent of the groups had only one to five members and 28% six to ten members. Sixty-three of 92 groups reported specific funding for EOL care research. Seventy-five percent of the groups had published papers in journals with impact factor ? 5 in the last 3 years; 8% had published in journals with impact factor >10. Forty-four out of 90 groups reported at least one completed Ph.D. in the last 3 years. The most frequently reported active research areas were pain, assessment and measurement tools, and last days of life and quality of death. Very similar areas--last days of life and quality of death, pain, fatigue and cachexia, and assessment and measurement tools--were ranked as the most important research priorities. The most important research barriers were lack of funding, lack of time, and insufficient knowledge/expertise.ConclusionsMost research groups in EOL care are small. The few large groups (14%) had almost half of the reported publications, and more than half of the current Ph.D. students. There is a lack of a common strategy and coordination in EOL cancer care research and a great need for international collaboration.

Project description:BackgroundThe existing evidence shows that the pattern of health expenditure differs considerably between people at the end-of-life and people in other periods of their lives. The awareness of these differences, combined with a detailed analysis of future mortality rates is one of the key pieces of information needed for health spending prognoses. The general objective of this review was to identify and map the existing empirical evidence on end-of-life expenditure related to health care for the older population.MethodsTo achieve the objective of the study a systematic scoping review was performed. There were 61 studies included in the analysis. The project has been registered through the Open Science Framework.ResultsThe included studies cover different kinds of expenditure in terms of payers, providers and types of services, although most of them include analyses of hospital spending and nearly 60% of analyses were conducted for insurance expenditure. The studies provide very different results, which are difficult to compare. However, all of the studies analyzing expenditure by survivorship status indicate that expenditure on decedents is higher than on survivors. Many studies indicate a strong relationship between health expenditure and proximity to death and indicate that proximity to death is a more important determinant of health expenditure than age per se. Drawing conclusions on the relationship between end-of-life expenditure and socio-economic status would be possible only by placing the analysis in a broader context, including the rules of a health system's organization and financing. This review showed that a lot of studies are focused on limited types of care, settings, and payers, showing only a partial picture of health and social care systems in the context of end-of-life expenditure for the older population.ConclusionThe results of studies on end-of-life expenditure for the older population conducted so far are largely inconsistent. The review showed a great variety of problems appearing in the area of end-of-life expenditure analysis, related to methodology, data availability, and the comparability of results. Further research is needed to improve the methods of analyses, as well as to develop some analysis standards to enhance research quality and comparability.

Project description:ImportanceThere is substantial institutional variability in the intensity of end-of-life care that is not explained by patient preferences. Hospital culture and institutional structures (eg, policies, practices, protocols, resources) might contribute to potentially nonbeneficial high-intensity life-sustaining treatments near the end of life.ObjectiveTo understand the role of hospital culture in the everyday dynamics of high-intensity end-of-life care.Design, setting, and participantsThis comparative ethnographic study was conducted at 3 academic hospitals in California and Washington that differed in end-of-life care intensity based on measures in the Dartmouth Atlas and included hospital-based clinicians, administrators, and leaders. Data were deductively and inductively analyzed using thematic analysis through an iterative coding process.Main outcome and measureInstitution-specific policies, practices, protocols, and resources and their role in the everyday dynamics of potentially nonbeneficial, high-intensity life-sustaining treatments.ResultsA total of 113 semistructured, in-depth interviews (66 women [58.4%]; 23 [20.4%] Asian, 1 [0.9%] Black, 5 [4.4%] Hispanic, 7 [6.2%] multiracial, and 70 [61.9%] White individuals) were conducted with inpatient-based clinicians and administrators between December 2018 and June 2022. Respondents at all hospitals described default tendencies to provide high-intensity treatments that they believed were universal in US hospitals. They also reported that proactive, concerted efforts among multiple care teams were required to deescalate high-intensity treatments. Efforts to deescalate were vulnerable to being undermined at multiple points during a patient's care trajectory by any individual or entity. Respondents described institution-specific policies, practices, protocols, and resources that engendered broadly held understandings of the importance of deescalating nonbeneficial life-sustaining treatments. Respondents at different hospitals reported different policies and practices that encouraged or discouraged deescalation. They described how these institutional structures contributed to the culture and everyday dynamics of end-of-life care at their institution.Conclusions and relevanceIn this qualitative study, clinicians, administrators, and leaders at the hospitals studied reported that they work in a hospital culture in which high-intensity end-of-life care constitutes a default trajectory. Institutional structures and hospital cultures shape the everyday dynamics by which clinicians may deescalate end-of-life patients from this trajectory. Individual behaviors or interactions may fail to mitigate potentially nonbeneficial high-intensity life-sustaining treatments if extant hospital culture or a lack of supportive policies and practices undermine individual efforts. Hospital cultures need to be considered when developing policies and interventions to decrease potentially nonbeneficial, high-intensity life-sustaining treatments.

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Culture and end of life care: a scoping exercise in seven European countries.

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Culture and end of life care: a scoping exercise in seven European countries.

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