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Keywords:

  • end-of-life care;
  • end-of-life decisions;
  • intellectual disability;
  • policies;
  • residential care facilities

Abstract

Objective  This article aims to describe the presence, content and implementation strategies of written policies on end-of-life decisions in Flemish residential care facilities (RCFs) accommodating persons with intellectual disabilities (ID), and to describe training, education and quality assessments of end-of-life care.

Methods  A cross-sectional mail survey was conducted among general directors of all RCFs accommodating persons with ID (n = 140) in Flanders, Belgium. Institutions were asked to provide us with a copy of their end-of-life care policy documents for content analysis.

Results  Of the 140 institutions, 84 (60%) completed the questionnaire and 25 institutions 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. Furthermore, few documents incorporate the distinctive features and needs of persons with ID regarding end-of-life care. On the other hand, 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. However, more than half reported explicitly that they have no plans for such assessments.

Conclusions  The presence of end-of-life care policies is low in Flemish RCFs and their content is not very specific for persons with ID.