End of Life Care for Persons with Intellectual Disability: Are we prepared for it?

Abstract

As identified by the Census and Statistics Department of Hong Kong in 2014, there were 71 000 to 101 000 persons with intellectual disabilities (PIDs) in Hong Kong. The 1% prevalence rate is consistent with the international scene. In the past, PIDs are considered as having limited capabilities. Thus they are mostly exempted from the planning and decision-making process related to the care plan in their final stage of life. With the increase of life expectancy of PIDs as well as recognition of their equal participation, there are growing numbers of research and services on life and death issues for PIDs around the world. In this presentation, the challenges faced by PIDs in receiving end-of-life care were discussed. Specifically, it addressed the perceived barriers in comprehending death and death-related choices, comparing the options and communication of preferences by the PIDs. Also, the new initiatives related to end-of-life care for PIDs around the world were illustrated. In particular, the experiences in United States, United Kingdom, and Australia were introduced. Findings of recent research on PIDs in Hong Kong were elaborated. Studies show that PIDs do have reasonable comprehension over death. The experiences of Life and Death Education with PIDs and their parents in Hong Kong also reflect optimistic feasibility with impact. Lastly, visions and implications for future development in preparing end-of-life care for PIDs were outlined.