• Irene Tuffrey-Wijne, Dorry McLaughlin, Leopold Curfs, Anne Dusart, Catherine Hoenger, Linda McEnhill, Sue Read, Karen Ryan, Daniel Satgé, Benjamin Straßer, Britt-Evy Westergård, and David Oliver.
• Faculty of Health, Social Care and Education, Kingston University and St George's University of London, London, UK I.Tuffrey-Wijne@sgul.kingston.ac.uk.
• Palliat Med. 2016 May 1; 30 (5): 446455446-55.

BackgroundPeople with intellectual disabilities often present with unique challenges that make it more difficult to meet their palliative care needs.AimTo define consensus norms for palliative care of people with intellectual disabilities in Europe.DesignDelphi study in four rounds: (1) a taskforce of 12 experts from seven European countries drafted the norms, based on available empirical knowledge and regional/national guidelines; (2) using an online survey, 34 experts from 18 European countries evaluated the draft norms, provided feedback and distributed the survey within their professional networks. Criteria for consensus were clearly defined; (3) modifications and recommendations were made by the taskforce; and (4) the European Association for Palliative Care reviewed and approved the final version.Setting And ParticipantsTaskforce members: identified through international networking strategies. Expert panel: a purposive sample identified through taskforce members' networks.ResultsA total of 80 experts from 15 European countries evaluated 52 items within the following 13 norms: equity of access, communication, recognising the need for palliative care, assessment of total needs, symptom management, end-of-life decision making, involving those who matter, collaboration, support for family/carers, preparing for death, bereavement support, education/training and developing/managing services. None of the items scored less than 86% agreement, making a further round unnecessary. In light of respondents' comments, several items were modified and one item was deleted.ConclusionThis White Paper presents the first guidance for clinical practice, policy and research related to palliative care for people with intellectual disabilities based on evidence and European consensus, setting a benchmark for changes in policy and practice.© The Author(s) 2015.

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