End-of-life care and dying: issues raised by staff supporting older people with intellectual disability in community living services.

BACKGROUND

The aim of this study was to explore the current status of end-of-life care and dying of people with intellectual disability based on the experiences of staff in community living services.

MATERIALS AND METHODS

Focus groups and individual interviews were conducted, guided by grounded theory methodology.

RESULTS

The current status of end-of-life care and dying comprised five key 'issues': knowledge of dying, ethical values, the where of caring, the how of caring and post-death caring. These issues occurred in relationship with 'partners', including the dying person, other clients, fellow staff, family, external health services and the coroner.

CONCLUSIONS

End-of-life care represents a complex interaction between the care issues and the partners involved in care. Despite this complexity, staff were committed to the provision of end-of-life care.