What does the literature tell us about death, dying and palliative care for people with intellectual disabilities?

Abstract

The development and understanding of palliative care as a medical speciality has influenced the way in which end-of-life care is provided and has become routine and medicalised. The majority of the literature reviewed for this paper described the way in which palliative care service delivery is carried out for people with intellectual disabilities. Much of the research reviewed came to similar conclusions about end-of-life care with the major issues being that of education and communication, and involvement of the individual and their family in decisions made either by them or on their behalf. There was no literature identified that related to the personal experiences of people with intellectual disability who were dying however there was some that related to family experiences and to individual experience of loss and the grieving process.