Where you live and die?: A comparisons of end of life outcomes for expected deaths in people living in social care ID settings

Aim: To investigate factors that shape end of life care outcomes for people with ID.
Method: 53 deaths of people with ID were identified from a larger representative sample of deaths in the UK (n = 156). These 53 deaths were deaths that had been expected for three months or more. They were evenly distributed between care homes and support living settings. Data were obtained on individual an setting characteristics, and end of life care outcomes.
Results: Decedents living in care homes were significantly more likely to die in the setting in which they lived than people living in smaller supported living settings. There were few demographic differences between decedents across these two settings. Setting factors, in particular staff: client ratio and size of staff group explained most of the variance in outcome.
Conclusion: Although supported living services offer enhanced opportunities for ordinary living, they seem less well able to support people with ID at the end of life. There are suggestions that staff development is a major area for improving EoLC outcomes for people with ID. The results in this paper suggest that resources may be just as or more important.