End-of-life care and dying : choices and needs of people with intellectual disability and their carers

Abstract

Although some progress has been made toward providing choices about home based end-of-life care and dying to the aged in the general community, the same opportunities are not routinely offered to people with intellectual disability. This is despite policy shifts in the disability sector embracing QoL, person-centred planning, choice, and ageing in place. Such disparity occurs against the backdrop of a rapidly growing population of people with ID who are ageing, and approaching the end of life. The paper examines a) the current status of end-of-life care and dying experiences of people with ID living in the community; b) what defines a ‘good death’ for people with ID and their carers; and c) what supports people with ID and their carers require to experience good end-of-life care and choices about dying in place.