Abstract

The increased life expectancy of people with intellectual disabilities in many economically advanced nations means that many now live long enough to acquire the same chronic and life-limiting health conditions – such as cancer or cardiovascular disease – that affect the general population. As such, caregivers in community agencies and family homes must think closely about end-of-life care for people with intellectual disability and plan for what happens when they age, experience advanced illness, and die. End-of-life care is that which is provided when death is soon anticipated because an individual has a progressive and irreversible condition from which recovery is not expected. This chapter surveys some of the more pressing issues for further research in this field in terms of policy and practice and argues that greater transparency and planning in all aspects of care are critical to improving the quality of end of life for adults with intellectual disability. With greater transparency, adults with intellectual disability, their caregivers and/or guardians, and their providers in hospices, hospitals, and nursing homes will be better prepared to provide care.