• Nienke Bekkema, Anke J E de Veer, Annemieke M A Wagemans, Cees M P M Hertogh, and Anneke L Francke.
• NIVEL, Netherlands Institute of Health Services Research, Utrecht, The Netherlands.
• Patient Educ Couns. 2014 Aug 1; 96 (2): 204-9.

ObjectiveThis paper explores the personal beliefs and specific considerations of professionals regarding decisions about potentially burdensome medical interventions in the end-of-life care for people with intellectual disabilities (ID).MethodsA survey questionnaire covering decision making about potentially burdensome medical interventions was sent to nationally representative samples of 294 ID care staff-members, 273 ID physicians and 1000 GPs.ResultsProfessionals predominantly believed that considerations about quality of life are most important. Quality of life and wellbeing were also frequently considered in both decisions to start/continue an intervention and decisions to forgo/withdraw an intervention. Seventy percent believed that people with ID should always be informed about interventions, and 61% would respect a refusal by the person. The family's wishes were explicitly considered more often than the wishes of the person with ID.ConclusionAlthough respondents agree that the quality of life is highly important, the wishes of people with ID (especially of those with severe/profound ID) were often not considered in decisions about potentially burdensome medical interventions.Practice ImplicationsTo enhance the active involvement of people with ID in decision making we recommend that professionals integrate collaborative principles in decision making and make use of pictorial and easy reading resources.Copyright © 2014 Elsevier Ireland Ltd. All rights reserved.

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