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International variations in clinical practice guidelines for palliative sedation: a systematic review
  1. Ebun Abarshi1,
  2. Judith Rietjens2,3,
  3. Lenzo Robijn3,
  4. Augusto Caraceni4,5,
  5. Sheila Payne1,
  6. Luc Deliens3,6 and
  7. Lieve Van den Block3,7
  8. on behalf of EURO IMPACT
    1. 1International Observatory on End-of-Life Care, Lancaster, United Kingdom
    2. 2Department of Public Health, Erasmus Medical Centre, Rotterdam, The Netherlands
    3. 3End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB) & Ghent University, Brussels, Belgium
    4. 4Fondazione IRCCS Instituto Nazionale dei Tumori, Milan, Italy
    5. 5European Palliative Care Research Center, Norwegian University of Science and Technology Trondheim Norway, EAPC Research Network
    6. 6Department of Medical Oncology, Ghent University Hospital, Ghent, Belgium
    7. 7Department of Family Medicine and Chronic Care, Vrije Universiteit Brussel (VUB), Brussels, Belgium
    1. Correspondence to Lenzo Robijn, End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB) & Ghent University, Laarbeeklaan 103, Brussels 1090, Belgium; Lenzo.Robijn{at}vub.be

    Abstract

    Objectives Palliative sedation is a highly debated medical practice, particularly regarding its proper use in end-of-life care. Worldwide, guidelines are used to standardise care and regulate this practice. In this review, we identify and compare national/regional clinical practice guidelines on palliative sedation against the European Association for Palliative Care (EAPC) palliative sedation Framework and assess the developmental quality of these guidelines using the Appraisal Guideline Research and Evaluation (AGREE II) instrument.

    Methods Using the PRISMA criteria, we searched multiple databases (PubMed, CancerLit, CINAHL, Cochrane Library, NHS Evidence and Google Scholar) for relevant guidelines, and selected those written in English, Dutch and Italian; published between January 2000 and March 2016.

    Results Of 264 hits, 13 guidelines—Belgium, Canada (3), Ireland, Italy, Japan, the Netherlands, Norway, Spain, Europe, and USA (2) were selected. 8 contained at least 9/10 recommendations published in the EAPC Framework; 9 recommended ‘pre-emptive discussion of the potential role of sedation in end-of-life care’; 9 recommended ‘nutrition/hydration while performing sedation’ and 8 acknowledged the need to ‘care for the medical team’. There were striking differences in terminologies used and in life expectancy preceding the practice. Selected guidelines were conceptually similar, comparing closely to the EAPC Framework recommendations, albeit with notable variations.

    Conclusions Based on AGREE II, 3 guidelines achieved top scores and could therefore be recommended for use in this context. Also, domains ‘scope and purpose’ and ‘editorial independence’ ranked highest and lowest, respectively—underscoring the importance of good reportage at the developmental stage.

    • Palliative Medicine
    • Sedation
    • Clinical Practice Guideline
    • EAPC
    • Systematic Review
    • Terminal care

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    Footnotes

    • Twitter Follow @robijnL and @EoLC_research

    • Acknowledgements The authors thank Dr Jenny Brine, Subject Librarian at the Lancaster University (UK) for her support in the development of the search strategies used in this review.

    • Collaborators EURO IMPACT is coordinated by Luc Deliens and Lieve Van den Block of the End-of-Life Care Research Group, Ghent University and Vrije Universiteit Brussel, Brussels, Belgiuma. Other partners are: VU University Medical Center, EMGO Institute for health and care research, Amsterdam, the Netherlandsb; King's College London, Cicely Saunders Institute, Londonc, Cicely Saunders International, Londond, and International Observatory on End-of-Life Care, Lancaster University, Lancaster, UKe; Norwegian University of Science and Technologyf, and EAPC Research Networkg, Trondheim, Norway; Regional Palliative Care Network, IRCCS AOU San Martino-IST, Genoah, and Cancer Research and Prevention Institute, Florence, Italyi; EUGMS European Union Geriatric Medicine Society, Geneva, Switzerlandj; Springer Science and Business Media, Houten, the Netherlandsk, on behalf of EUROIMPACT. The Group collaborators include: Lieve Van den Blocka, Meeussen Koena, Brearley Sarahe, Augusto Caracenig, Cohen Joachima, Costantini Massimoh, Francke Annekeb, Harding Richardc,d, Higginson Irene Jc,d, Kaasa Steinf, Linden Karenk, Miccinesi Guidoi, Onwuteaka-Philipsen Bregjeb, Pardon Koena, Pasman Roelineb, Pautex Sophiej, Payne Sheilae, Deliens Luca,b.

    • Contributors EA, JR, LR, AC and LVdB designed the paper. EA, JR, AC, SP, LD and LVdB developed the checklist and the paper further. EA and LR did the literature search, and led the writing of the script. All authors revised and approved the final version of the paper.

    • Funding Lenzo Robijn is a Predoctoral Fellow of the Research Foundation Flanders (FWO). The European Union Seventh Framework Programme (FP7/2007–2013), under grant agreement number (264697) supported this study—conducted as part of the European Intersectorial Multidisciplinary Palliative Care Research Training (EUROIMPACT) project, an international research project that aims at developing multidisciplinary, multiprofessional and intersectorial collaborations for palliative care research in Europe. The authors, an international and multidisciplinary group of researchers, received the mandate to develop evidence-based guidelines for the practice of palliative sedation in Europe. To avoid potential duplication of efforts, they sought to identify and evaluate the content, scope and developmental quality of existing guidelines on the subject in this review.

    • Competing interests None declared.

    • Provenance and peer review Not commissioned; externally peer reviewed.

    • Data sharing statement All data generated during the project will be made freely available via Lancaster University's Research Data Repository. DOIs to these data will be provided (as part of the DataCite programme) and cited in any published articles using these data and any generated in the review (to allow data unrelated to any published work to be found). All data used in the review will be generated directly as a result of the review, without any pre-existing data being used. Any data relevant to a published article will be made available alongside the article when published.

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