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      Beyond cultural stereotyping: views on end-of-life decision making among religious and secular persons in the USA, Germany, and Israel

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          Abstract

          Background

          End-of-life decision making constitutes a major challenge for bioethical deliberation and political governance in modern democracies: On the one hand, it touches upon fundamental convictions about life, death, and the human condition. On the other, it is deeply rooted in religious traditions and historical experiences and thus shows great socio-cultural diversity. The bioethical discussion of such cultural issues oscillates between liberal individualism and cultural stereotyping. Our paper confronts the bioethical expert discourse with public moral attitudes.

          Methods

          The paper is based on a qualitative study comprising 12 focus group discussions with religious and secular persons in the USA, Germany, and Israel ( n = 82). Considering the respective socio-political and legal frameworks, the thematic analysis focuses on moral attitudes towards end-of-life decision making and explores the complex interplay between individual preferences, culture, and religion.

          Results

          Our findings draw attention to the variety and complexity of cultural and religious aspects of end-of-life decision making. Although there is local consensus that goes beyond radical individualism, positions are not neatly matched with national cultures or religious denominations. Instead, the relevance of the specific situatedness of religious beliefs and cultural communities becomes visible: Their status and role in individual situations, for example, as consensual or conflicting on the level of personal perspectives, family relationships, or broader social contexts, e.g., as a majority or minority culture within a political system.

          Conclusions

          As the group discussions indicate, there are no clear-cut positions anchored in “nationality,” “culture,” or “religion.” Instead, attitudes are personally decided on as part of a negotiated context representing the political, social and existential situatedness of the individual. Therefore, more complex theoretical and practical approaches to cultural diversity have to be developed.

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          Most cited references24

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          Qualitative Content Analysis

          The article describes an approach of systematic, rule guided qualitative text analysis, which tries to preserve some methodological strengths of quantitative content analysis and widen them to a concept of qualitative procedure. First the development of content analysis is delineated and the basic principles are explained (units of analysis, step models, working with categories, validity and reliability). Then the central procedures of qualitative content analysis, inductive development of categories and deductive application of categories, are worked out. The possibilities of computer programs in supporting those qualitative steps of analysis are shown and the possibilities and limits of the approach are discussed. URN: urn:nbn:de:0114-fqs0002204 Forum Qualitative Sozialforschung / Forum: Qualitative Social Research, Vol 1, No 2 (2000): Qualitative Methods in Various Disciplines I: Psychology
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            Current research findings on end-of-life decision making among racially or ethnically diverse groups.

            We reviewed the research literature on racial or ethnic diversity and end-of-life decision making in order to identify key findings and provide recommendations for future research. We identified 33 empirical studies in which race or ethnicity was investigated as either a variable predicting treatment preferences or choices, where racial or ethnic groups were compared in their end-of-life decisions, or where the end-of-life decision making of a single minority group was studied in depth. We conducted a narrative review and identified four topical domains of study: advance directives; life support; disclosure and communication of diagnosis, prognosis, and preferences; and designation of primary decision makers. Non-White racial or ethnic groups generally lacked knowledge of advance directives and were less likely than Whites to support advance directives. African Americans were consistently found to prefer the use of life support; Asians and Hispanics were more likely to prefer family-centered decision making than other racial or ethnic groups. Variations within groups existed and were related to cultural values, demographic characteristics, level of acculturation, and knowledge of end-of-life treatment options. Common methodological limitations of these studies were lack of theoretical framework, use of cross-sectional designs, convenience samples, and self-developed measurement scales. Although the studies are limited by methodological concerns, identified differences in end-of-life decision-making preference and practice suggest that clinical care and policy should recognize the variety of values and preferences found among diverse racial or ethnic groups. Future research priorities are described to better inform clinicians and policy makers about ways to allow for more culturally sensitive approaches to end-of-life care.
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              How to communicate with patients about future illness progression and end of life: a systematic review

              Background Conversation and discourse analytic research has yielded important evidence about skills needed for effective, sensitive communication with patients about illness progression and end of life. Objectives To: ▸ Locate and synthesise observational evidence about how people communicate about sensitive future matters; ▸ Inform practice and policy on how to provide opportunities for talk about these matters; ▸ Identify evidence gaps. Design Systematic review of conversation/discourse analytic studies of recorded interactions in English, using a bespoke appraisal approach and aggregative synthesis. Results 19 publications met the inclusion criteria. We summarised findings in terms of eight practices: ‘fishing questions’—open questions seeking patients’ perspectives (5/19); indirect references to difficult topics (6/19); linking to what a patient has already said—or noticeably not said (7/19); hypothetical questions (12/19); framing difficult matters as universal or general (4/19); conveying sensitivity via means other than words, for example, hesitancy, touch (4/19); encouraging further talk using means other than words, for example, long silences (2/19); and steering talk from difficult/negative to more optimistic aspects (3/19). Conclusions Practices vary in how strongly they encourage patients to engage in talk about matters such as illness progression and dying. Fishing questions and indirect talk make it particularly easy to avoid engaging—this may be appropriate in some circumstances. Hypothetical questions are more effective in encouraging on-topic talk, as is linking questions to patients’ cues. Shifting towards more ‘optimistic’ aspects helps maintain hope but closes off further talk about difficulties: practitioners may want to delay doing so. There are substantial gaps in evidence.
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                Author and article information

                Contributors
                mark.schweda@medizin.uni-goettingen.de
                silke.schicktanz@medizin.uni-goettingen.de
                aviadraz@bgu.ac.il
                asilvers@sfsu.edu
                Journal
                BMC Med Ethics
                BMC Med Ethics
                BMC Medical Ethics
                BioMed Central (London )
                1472-6939
                17 February 2017
                17 February 2017
                2017
                : 18
                : 13
                Affiliations
                [1 ]ISNI 0000 0001 0482 5331, GRID grid.411984.1, Department of Medical Ethics and History of Medicine, , University Medical Center Göttingen, ; Humboldtallee 36, 37073 Göttingen, Germany
                [2 ]ISNI 0000 0004 1937 0511, GRID grid.7489.2, Department of Sociology and Anthropology, , Ben-Gurion University of the Negev, ; Be’er-Sheva, 84105 Israel
                [3 ]ISNI 0000000106792318, GRID grid.263091.f, Department of Philosophy, , San Francisco State University, ; 1600 Holloway Avenue, San Francisco, CA 94132 USA
                Article
                170
                10.1186/s12910-017-0170-4
                5316158
                28212642
                3326c16f-b853-44b9-a03b-8522d481f21a
                © The Author(s). 2017

                Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License ( http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.

                History
                : 28 June 2016
                : 24 January 2017
                Funding
                Funded by: FundRef http://dx.doi.org/10.13039/501100002347, Bundesministerium für Bildung und Forschung;
                Award ID: 01GP1004
                Award Recipient :
                Funded by: FundRef http://dx.doi.org/10.13039/501100001736, German-Israeli Foundation for Scientific Research and Development;
                Award ID: 1023-317.4/2008
                Award Recipient :
                Funded by: FundRef http://dx.doi.org/10.13039/501100001655, Deutscher Akademischer Austauschdienst;
                Funded by: FundRef http://dx.doi.org/10.13039/100005156, Alexander von Humboldt-Stiftung;
                Categories
                Research Article
                Custom metadata
                © The Author(s) 2017

                Medicine
                attitudes toward death,advance directives,assisted suicide,euthanasia,cultural diversity,focus groups

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