Place of death of people with intellectual disabilities: An exploratory study of death and dying within community disability service settings.

This article describes an exploratory study of deaths of people with intellectual disabilities (IDs) that had occurred in group homes managed by an ID service provider in Australasia. Such settings are increasingly recognised as places for both living and dying. Little is known about the extent to which they encounter the death of a person with ID and with what outcomes. Data were obtained from service records and telephone interviews on 66 deaths occurring within a 2-year period. The findings suggest that death is an important but relatively rare event within ID services. This rate of death was influenced by the age structure of the population. Most of the deaths occurred within a hospital setting. Cause of death did not have much impact upon place of death. However, setting characteristics seemed to have some influence. As an exploratory study, lessons for future population-based research in this area are addressed.

"I'm still here": Exploring what matters to people with intellectual disability during advance care planning.

BACKGROUND: This study sought to identify, from the perspective of people with intellectual disabilities and life limiting conditions, the factors that strengthened and inhibited their Advance Care Planning. METHODS: This in depth qualitative study explored the experiences of four people with intellectual disability and life limiting conditions, through interviews and documentation reviews. RESULTS: There was strong agreement across all participants about what positively influenced Advance Care Planning, namely; going at my pace; supporting me to make my own choices; adapting the process to suit me, and, most importantly; continuing to support and plan the life I'm still living. With the exception of being comfortable/skilled in end-of-life support, the skills required of facilitators were similar to those required for all forms of person-centred planning. CONCLUSION: The findings are encouraging and demonstrate that Advance Care Planning is a useful tool in ensuring that people with intellectual disability have control and choice over their lives, right to the end.