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.