Shared decision-making with people with intellectual disabilities in the last phase of life: A scoping review.
People with ID are rarely active partners in their own end-of-life medical choices—behavior analysts can build the missing supports.
01Research in Context
What this study did
English et al. (2020) looked at every paper they could find about adults with intellectual disabilities making their own end-of-life choices.
They screened books, articles, and reports published up to 2019.
Ten studies met their rules; most came from the Netherlands and the UK.
What they found
Only two of the ten studies showed people with ID actively joining the conversation.
No paper offered a clear step-by-step guide for staff or families.
Best-practice tools for shared decision-making simply do not exist yet.
How this fits with other research
Jones et al. (2010) counted 27 end-of-life decisions in one facility and also saw the residents’ own words missing from charts.
Voss et al. (2019) found advance-care talks start late and skip the person because of speech or memory limits.
Williams et al. (2021) later showed US service plans still lack end-of-life sections, so the gap continues after 2020.
Together these papers do not clash; they stack. Each one repeats the same quiet finding: the patient with ID is left out.
Why it matters
You can fix this silence. Add picture cards, video stories, or plain-language checklists to your ABA sessions. Practice choice-making now so the client has the skill before a crisis. Share the tool with nurses and families so everyone waits for the person’s response, not just the parent’s. One small support today can give the client a voice when it counts most.
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02At a glance
03Original abstract
BACKGROUND: Shared decision-making (SDM) is the process in which healthcare professionals and patients jointly discuss and decide which care and treatment policy is to be followed. The importance of SDM is increasingly being recognised across health settings, including palliative care. Little is known about SDM with people with intellectual disabilities (IDs) in the last phase of life. This review aimed to explore to which extent and in which way people with ID in the last phase of life are involved in decision-making about their care and treatment. METHOD: In this scoping review, we systematically searched in the Embase, Medline and PsycINFO databases for empirical studies on decision-making with people with ID in the last phase of life. RESULTS: Of a total of 281 identified titles and abstracts, 10 studies fulfilled the inclusion criteria. All focused on medical end-of-life decisions, such as foregoing life-sustaining treatment, do-not-attempt-resuscitation orders or palliative sedation. All studies emphasise the relevance of involving people with ID themselves, or at least their relatives, in making decisions at the end of life. Still, only two papers described processes of decision-making in which persons with ID actively participated. Furthermore, in only one paper, best practices and guidelines for decision-making in palliative care for people with ID were defined. CONCLUSION: Although the importance of involving people with ID in the decision-making process is emphasised, best practices or guidelines about what this should look like are lacking. We recommend developing aids that specifically support SDM with people with ID in the last phase of life.
Journal of intellectual disability research : JIDR, 2020 · doi:10.1111/jir.12774