Advance care planning in the palliative phase of people with intellectual disabilities: analysis of medical files and interviews.
End-of-life planning for adults with ID still starts late and shuts the person out—BCBAs can fix this by teaching staff early, adapted shared decision-making.
01Research in Context
What this study did
The team read medical charts and talked with staff in Dutch residential homes. They wanted to see when and how staff planned end-of-life care for adults with intellectual disabilities.
Charts and interviews showed plans started only when the person was already very sick.
What they found
Planning focused on medical choices like feeding tubes or CPR. The adult with ID was rarely part of the talk. Staff said the person could not understand or speak about death.
Plans were written late, often days before death.
How this fits with other research
Jones et al. (2010) saw the same late, chart-driven pattern in the same homes nine years earlier. Voss et al. (2019) adds staff voices to show the habit has not changed.
English et al. (2020) scoured ten studies and found only two where people with ID actually joined the talk. The new data match that review: exclusion is still the norm.
Kruithof et al. (2022) flips the view to parents. Parents feel ready to lead choices and may opt to stop life support. Together the papers show a gap: staff leave the person out, yet parents want in.
Why it matters
If you serve adults with ID, start care-planning talks years before illness. Use photos, simple stories, or role play to include the person. Early talks respect autonomy and cut crisis choices later.
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02At a glance
03Original abstract
BACKGROUND: Advance care planning (ACP) is a process in which professionals, patients and their relatives discuss wishes and options for future care. ACP in the palliative phase reduces the chance that decisions have to be taken suddenly and can therefore improve the quality of life and death. The primary aim of this study is to explore how ACP takes place in cases of people with intellectual disabilities (ID). METHOD: Medical files were analysed, and interviews were held in six care organisations for people with mild to severe ID. The data concerned people with ID (n = 30), 15 in the palliative phase, identified using the 'surprise question', and 15 who had died after an identifiable period of illness. Additional pre-structured telephone interviews were conducted with their relatives (n = 30) and professionals (n = 33). RESULTS: For half of the people with ID who had died, the first report in their file about palliative care (needs) was less than 1 month before their death. Professionals stated that ACP was started in response to the person's deteriorating health situation. A do-not-attempt-resuscitation order was recorded for nearly all people with ID (93%). A smaller group also had other agreements between professionals and relatives documented in their files, mainly about potentially life-sustaining treatments (43%) and/or hospitalisation admissions (47%). Relatives and professionals are satisfied with the mutual cooperation in ACP in the palliative phase. Cognitive and communication disabilities were most frequently mentioned by relatives and professionals as reasons for not involving people with ID in ACP. CONCLUSIONS: Advance care planning in the palliative phase of people with ID focuses mainly on medical issues at the end of life. Specific challenges concern a proactive identification of changing needs, fear to initiate ACP discussions, documentation of ACP in medical files and the involvement of people with ID in ACP. It is recommended that relatives and professionals should be informed about the content of ACP and professionals should be trained in communicating in advance about wishes for future care.
Journal of intellectual disability research : JIDR, 2019 · doi:10.1111/jir.12664