End of life care for people with intellectual disability

Abstract

Aims: Life expectancy for a person with an intellectual disability has increased dramatically in recent years, and consequently the morbidity and mortality patterns are also shifting. These changing health demographics are resulting in an increasing need for the provision of and access to End of Life (EoL) care. The purpose of the current study was to explore and examine the needs of people with intellectual disability and their support network as they approach the end of their life. Method: A series of focus groups, composed of both paid and unpaid carers across rural and metropolitan areas of Australia, discussed the EoL needs of people with intellectual disability and their network of family, friends and supporters. Results: The paper will report the findings of the research, with a focus on how a dignified and supportive EoL for people with intellectual disability can be provided across both rural and metropolitan localities. Conclusion: EoL care for people with intellectual disabilities is an area receiving an increased research focus, however the differences between rural and metropolitan areas are still largely unexplored. There are key differences in issues such as service access that require remediation to better meet the needs of individuals.