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End-of-life care policies in Flemish residential care facilities accommodating persons with intellectual disabilities
- Authors:
- D'HAENE I., et al
- Journal article citation:
- Journal of Intellectual Disability Research, 54(12), December 2010, pp.1067-1077.
- Publisher:
- Wiley
This article aims to describe the presence, content and implementation strategies of written policies on end-of-life decisions in Flemish residential care facilities accommodating persons with intellectual disabilities, and to describe training, education and quality assessments of end-of-life care. A cross-sectional mail survey was conducted among general directors of all 140 residential care facilities accommodating persons with intellectual disabilities in Flanders, Belgium. The institutions were also asked to provide a copy of their end-of-life care policy documents for content analysis. Of the 140 institutions, 84 completed the questionnaire and 25 provided 45 policy documents. Presence of policies on specific end-of-life decisions with a possible life-shortening effect lay between 18% (palliative sedation) and 26% (withdrawing or withholding of life-prolonging treatment). The content analysis showed that the focus in the majority of these policy documents is on palliative care, while end-of-life decisions with a possible life-shortening effect are mentioned but rarely elaborated on. Few documents incorporate the distinctive features and needs of persons with intellectual disabilities regarding end-of-life care. Half of the institutions trained and educated their professional care providers in some aspects of end-of-life care while one-third assessed the satisfaction of residents and families on several of these aspects. The article concludes that the presence of end-of-life care policies is low in Flemish residential care facilities and their content is not very specific for persons with intellectual disabilities.