End-of-life care policies in Flemish residential care facilities accommodating persons with intellectual disabilities.
Most Flemish ID homes still lack written end-of-life plans—check yours and write one today.
01Research in Context
What this study did
The team mailed a short survey to every Flemish residential home for adults with intellectual disability.
They asked one simple question: Does your home have a written policy for each big end-of-life choice?
Out of 160 homes, 101 wrote back.
What they found
Only 18 out of every 100 homes had a policy about starting CPR.
Just 26 had rules about stopping life support.
Almost none of the policies talked about the special needs of people with ID.
How this fits with other research
Dai et al. (2023) asked U.S. doctors the same kind of question. They found most doctors skip talking directly to adults with ID and sometimes sedate them for a simple blood draw. Together the two surveys paint the same picture: care teams are flying blind.
Samtani et al. (2021) looked at every U.S. paper on cancer care for people with IDD. They also found huge policy holes. The Flemish numbers now show the gap is old and crosses oceans.
Fox et al. (2001) saw that half of staff wanted written rules about sexuality. Hostyn et al. (2010) show the wish is still unmet nine years later, only now the topic is death, not dating.
Why it matters
If there is no script, staff panic or guess during a medical crisis. That can mean unwanted CPR, rushed hospital trips, or families kept in the dark. Take an hour this week to check if your house has a written end-of-life plan. If it does not, open a shared doc and start one line: "When breathing stops we will..." Your future self, and the people you serve, will thank you.
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02At a glance
03Original 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.
Journal of intellectual disability research : JIDR, 2010 · doi:10.1111/j.1365-2788.2010.01335.x