End-Of-Life Care of People with Intellectual Disabilities in Community Living Services

Abstract

End-of-life care of people with intellectual disabilities in community living services ABSTRACT People with intellectual disability are living longer. This can result in the need for ongoing care. With the death or incapacity of parents, there has been an increased need for care in staffed community living services. While research has resulted in greater understanding about how community living staff care for people with intellectual disability as they age, research about care at the end of life is in its infancy. This study sought to explore the current status of end-of-life care, and the needs of community living staff to provide end-of-life care. The research was conducted using qualitative grounded-theory methodology. Focus groups and 1:1 interviews were conducted with a total of 33 community living staff. The findings showed five key issues reflecting the status of care from the perspective of community living services staff. Issues included knowing dying, ethical values, where of caring, how of caring, and post-death caring. Care involved a range of partners who, at any one time, might have a role in navigating these issues. Partners included the dying client, other clients, the fellow staff, external health services, and the post-death legal system. Together these issues and partners operated in relationship, resulting in a framework to understand end-of-life care to people with intellectual disability in community living services. One issue, knowing dying, was pivotal; how much staff themselves knew about dying in their professional role, and then how that influenced their approach to people with intellectual disability about knowing dying. In principle, staff were unanimous that people with intellectual disability should know about dying, however, their application of this in-principle endorsement was negligible. A paradox was therefore apparent. The thesis concludes with calls to action around policy, practice, professional development and future research, all with a view to redressing social injustice, and a contribution to society’s desequestration of death.