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      What do you mean by “palliative sedation”? : Pre-explicative analyses as preliminary steps towards better definitions

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          Abstract

          Background

          Sedation in palliative care is frequently but controversially discussed. Heterogeneous definitions and conceptual confusion have been cited as contributing to different problems 1) relevant to empirical research, for example, inconsistent data about practice, the ‘data problem’, and 2) relevant for an ethically legitimate characterisation of the practice, the ‘problem of ethical pre-emption’. However, little is known about how exactly definitions differ, how they cause confusion and how this can be overcome.

          Method

          Pre-explicative analyses: (A) systematic literature search for guidelines on sedation in palliative care and systematic decomposition of the definitions of the practice in these guidelines; (B) logical distinction of different ways through which the two problems reported might be caused by definitions; and (C) analysis of how content of the definitions contributes to the problems reported in these different ways.

          Results

          29 guidelines from 14 countries were identified. Definitions differ significantly in both structure and content. We identified three ways in which definitions can cause the ‘data problem’ – 1) different definitions, 2) deviating implicit concepts, 3) disagreement about facts. We identified two ways to cause the problem of ethical pre-emption: 1) explicit or 2) implicit normativity. Decomposition of definitions linked to the distinguished ways of causing the conceptual problems shows how exactly single parts of definitions can cause the problems identified.

          Conclusion

          Current challenges concerning empirical research on sedation in palliative care can be remediated partly by improved definitions in the future, if content and structure of the used definitions is chosen systematically. In addition, future research should bear in mind that there are distinct purposes of definitions. Regarding the ‘data problem’, improving definitions is possible in terms of supplementary information, checking for implicit understanding, systematic choice of definitional elements. ‘Ethical pre-emption’, in contrast, is a pseudo problem if definitions and the relationship of definitions and norms of good practice are understood correctly.

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          Most cited references37

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          Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement

          David Moher and colleagues introduce PRISMA, an update of the QUOROM guidelines for reporting systematic reviews and meta-analyses
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            European Association for Palliative Care (EAPC) recommended framework for the use of sedation in palliative care.

            The European Association for Palliative Care (EAPC) considers sedation to be an important and necessary therapy in the care of selected palliative care patients with otherwise refractory distress. Prudent application of this approach requires due caution and good clinical practice. Inattention to potential risks and problematic practices can lead to harmful and unethical practice which may undermine the credibility and reputation of responsible clinicians and institutions as well as the discipline of palliative medicine more generally. Procedural guidelines are helpful to educate medical providers, set standards for best practice, promote optimal care and convey the important message to staff, patients and families that palliative sedation is an accepted, ethical practice when used in appropriate situations. EAPC aims to facilitate the development of such guidelines by presenting a 10-point framework that is based on the pre-existing guidelines and literature and extensive peer review.
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              Palliative sedation: a review of the research literature.

              The overall aim of this paper is to systematically review the following important aspects of palliative sedation: prevalence, indications, survival, medication, food and fluid intake, decision making, attitudes of physicians, family experiences, and efficacy and safety. A thorough search of different databases was conducted for pertinent research articles published from 1966 to June 2007. The following keywords were used: end of life, sedation, terminal sedation, palliative sedation, refractory symptoms, and palliative care. Language of the articles was limited to English, French, German, and Dutch. Papers reporting solely on the sedatives used in palliative care, without explicitly reporting the prevalence or intensity of sedation, and papers not reporting on primary research (such as reviews or theoretical articles) were excluded. Methodological quality was assessed according to the criteria of Hawker et al. (2002). The search yielded 130 articles, 33.8% of which were peer-reviewed empirical research studies. Thirty-three research papers and one thesis were included in this systematic review. This review reveals that there still are many inconsistencies with regard to the prevalence, the effect of sedation, food and fluid intake, the possible life-shortening effect, and the decision-making process. Further research to clarify all of this should be based on multicenter, prospective, longitudinal, and international studies that use a uniform definition of palliative sedation, and valid and reliable instruments. Only through such research will it be possible to resolve some of the important ethical issues related to palliative sedation.
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                Author and article information

                Contributors
                alexander.kremling@medizin.uni-halle.de
                jan.schildmann@medizin.uni-halle.de
                Journal
                BMC Palliat Care
                BMC Palliat Care
                BMC Palliative Care
                BioMed Central (London )
                1472-684X
                23 September 2020
                23 September 2020
                2020
                : 19
                : 147
                Affiliations
                Institute of History and Ethics of Medicine, Interdisciplinary Center for Health Sciences, Madgeburger Straße 8, Halle (Saale), 06112 Germany
                Author information
                http://orcid.org/0000-0002-2674-2497
                Article
                635
                10.1186/s12904-020-00635-9
                7513316
                32967659
                a91bb4e5-0faf-4472-aa56-7123062784ba
                © The Author(s) 2020

                Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. 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 in a credit line to the data.

                History
                : 10 June 2020
                : 10 August 2020
                Funding
                Funded by: FundRef http://dx.doi.org/10.13039/501100002347, Bundesministerium für Bildung und Forschung;
                Award ID: 01GY1702A-C
                Categories
                Research Article
                Custom metadata
                © The Author(s) 2020

                Anesthesiology & Pain management
                palliative care,palliative sedation,empirical research,conceptual analysis,end-of-life care

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