Experience of End-of-Life Issues by People with Intellectual Disability

Roger J Stancliffe, Michele Y Wiese, Philip McCallion, Mary McCarron


This chapter examines contemporary research about end of life with a particular emphasis on people with intellectual disabilities and their experiences, rather than the views of others such as caregivers and clinicians. Topics include their experiences when family or friends die, and engagement with their own dying and death. The extent to which people with intellectual disability actively participate in research about the end of life is critiqued. Available measurement instruments are examined, concluding with the need to move beyond interpreting their views via the proxy report of others. The chapter concludes with a reflection scenario and questions, challenging the reader to consider how end-of-life experiences of people with intellectual and developmental disability could and should be better approached.

Suggested Citation

Stancliffe, R. J., Wiese, M. Y., McCallion, P., & McCarron, M. (2022). Experience of end-of-life issues by people with intellectual disability. In R. J. Stancliffe, M. Y. Wiese, P. McCallion, & M. McCarron (Eds.), End of life and people with intellectual and developmental disability: Contemporary issues, challenges, experiences and practice (pp. 29–57). Palgrave MacMillan. https://link.springer.com/chapter/10.1007/978-3-030-98697-1_2


Book Chapter 
Palgrave Macmillan


  • Community life
    • Aging and retirement
  • Specific disability
    • Intellectual/developmental disability (IDD)