End-of-life decisions: an important theme in the care for people with intellectual disabilities.
End-of-life choices happen often in ID services, yet the resident’s own wishes are still not written down.
01Research in Context
What this study did
The team read the medical files of 47 adults with intellectual disability who had died in Dutch residential homes.
They counted how many residents had an end-of-life decision on record.
They also checked whether the files showed the resident’s own wishes.
What they found
Twenty-seven of the 47 residents had an end-of-life decision, such as choosing not to treat an infection.
Not one file recorded the resident’s own view about that choice.
Doctors and staff made the calls without written evidence that the person was asked.
How this fits with other research
English et al. (2020) later reviewed ten studies and found the same gap: only two papers showed people with ID taking part in their own end-of-life choices.
Voss et al. (2019) looked at the same Dutch homes years after A et al. and saw little change—advance care planning still started late and left the person out.
Kruithof et al. (2022) interviewed parents of adults with profound ID; those parents wanted to lead decisions yet noted staff seldom asked them either.
Together the four papers trace a straight line: from 2010 to 2022, the client’s voice is still missing.
Why it matters
If you serve adults with ID, add one page to the care plan that asks, “What does the client want?” Use pictures, signs, or short videos. One extra step can turn a silent file into a person-centered plan.
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02At a glance
03Original abstract
BACKGROUND: While end-of-life decisions in the general population have received attention in several countries, not much is known about this in people with intellectual disabilities (IDs). Therefore, the prevalence and nature of end-of-life decisions were investigated in a Dutch centre providing residential care for 335 people with IDs. METHOD: A retrospective study of medical files of people who died between January 2002 and July 2007. RESULTS: One or more end-of-life decisions were taken in 27 out of 47 cases. A non-treatment decision was taken for seven residents, possibly shortening life expectancy in some cases. The family was involved in decision making in half of the 27 cases. No information was found about the process of end-of-life decision making. There was no evidence in the notes that any of the people with IDs was asked for his or her own opinion in taking an end-of-life decision. CONCLUSION: This study demonstrates that medical end-of-life decisions played a part in significant numbers of people with IDs who have died within this centre, but further studies are needed to establish decision-making processes.
Journal of intellectual disability research : JIDR, 2010 · doi:10.1111/j.1365-2788.2010.01276.x