Expecting the unexpected. Awareness of impending death among adults with Intellectual disabilities and paid carers in social care settings in the UK

Aim: To determine the proportion of deaths of adults with ID where either the dying person or direct care/support staff (CS) were aware death was likely. To examine the effect of awareness on place of death and CS satisfaction with End of Life Care (EOLC).
Method: Providers of social care for adults with ID in the UK supplied data on deaths over an 18 month period and contact details of a staff member who had known the deceased person well. Data from a CS‐completed VOICES LD and a questionnaire designed for this study were obtained for 157 deaths.
Results: A minority were aware, partly reflecting different causes of death. Of 157 deaths in the study period, staff believed 17 were aware they were dying. Staff were aware that 67 had an illness that might lead to death. 28% of deaths followed less than a week's illness. CS awareness was associated with home deaths and with higher levels of overall satisfaction with EOLC.
Conclusion: Possible reasons for the low levels of awareness are explored. Research and practice in EOLC for people with ID must include unexpected deaths. Better identification of those at risk might allow earlier access to curative and EOLC.