End-of-Life Care and Dying: Issues Raised by Staff Supporting Older People with Intellectual Disability in Community Living Services

Abstract

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. © 2012 Blackwell Publishing Ltd.