Talking about dying with people with ID who have a terminal illness: a UK survey of support staff

Background: To investigate the extent to which people with ID who have a terminal illness are informed of their diagnosis and prognosis.
Method: Support staff working in supported living and residential settings completed an online survey (n = 724, 64% response rate), supporting over 6,000 people with ID between them. Recruitment was through contacting managers of ID service providers from all four UK countries (n = 25). Those answering “yes” to the question whether any of their clients had died during the past 12 months, or was currently terminally ill, were asked further questions about this.
Results: Over a quarter of respondents (n = 205) had experienced death or terminal illness among their clients during the past year, reporting 199 deceased (of which 114 were non‐sudden deaths) and 76 terminally ill clients. Over half of people with ID whose death was expected were told about their illness, but only 20% were ever told that they would die of it. However, 36% of respondents thought that the person “definitely” or “probably” realised that they were going to die.
Conclusion: People with ID whose deaths are expected by staff are mostly uninformed about their own impending death. This has implications for their involvement in end‐of‐life decision making.