Physicians' identification of the need for palliative care in people with intellectual disabilities.
Doctors need caregiver input to spot palliative needs in ID—give caregivers a simple sign sheet to make that input reliable.
01Research in Context
What this study did
Vrijmoeth et al. (2016) talked with doctors about spotting palliative-care needs in adults with intellectual disability.
The interviews showed doctors look at many clues, not one lab value.
Caregiver reports and small day-to-day changes carry the most weight.
What they found
Doctors said they have no clear medical trigger.
They watch eating, mood, sleep, and ask caregivers what they see.
Without caregiver words, they often miss the moment.
How this fits with other research
Dai et al. (2023) asked 1,000 U.S. outpatient doctors and found three-quarters already skip the patient and talk to the caregiver first.
The new numbers back up the Dutch stories: proxy talk is the norm, not the exception.
Tassé et al. (2013) let patients speak; they hated being ignored.
The two views sit side-by-side: doctors rely on proxies, yet patients want eye contact.
No real clash—just two sides of the same coin.
Baker et al. (2025) pooled 23 studies and listed “see us as partners” as families’ top need.
Cis et al. show what that need looks like at end-of-life.
Why it matters
You can teach caregivers the exact small signs to track—eating half portions, new grimaces, less laughter.
Write these on a one-page sheet the doctor gets before the visit.
Your data turn caregiver hunches into shareable clinical cues and help the team start palliative talks earlier.
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02At a glance
03Original abstract
BACKGROUND: A growing number of people with intellectual disabilities (ID) is suffering from life-threatening chronic illnesses and is therefore in need for palliative care. AIMS: We aimed to explore how the need for palliative care is recognized in people with ID. METHODS AND PROCEDURES: We conducted a semi-structured interview study among 10 ID-physicians in the Netherlands. OUTCOMES AND RESULTS: Identification of people with ID in need for palliative care mostly results from a process in which multiple signals from different information sources converge and lead to a growing awareness. As a result, ID-physicians do not expect people to return to their prior level of health or functioning, but rather expect an irreversible decline leading to death. The presence, stage and prognosis of the disease, physician-patient interaction, and communication with proxies who provide contextual information are factors influencing the process. CONCLUSIONS AND IMPLICATIONS: Distinctive for a population of people with ID are the frequent diagnostic uncertainty in people with ID, the patients' communicational abilities and the reliance of ID-physicians on close proxies. We argue for a proactive attitude of physicians regarding care and support of people with ID with palliative care needs.
Research in developmental disabilities, 2016 · doi:10.1016/j.ridd.2016.07.008