End-of-Life Care for Adults with Intellectual and Developmental Disabilities: A Best Practice Guide for Medical and Mental Health Professionals Around Death, Dying, and End-of-Life Care

Date of Award


Document Type

Doctoral Research Paper

Degree Name


Organizational Unit

Graduate School of Professional Psychology

First Advisor

Nicole Taylor

Second Advisor

Jennifer Cornish

Third Advisor

Gina Signoracci


End of life care, Intellectual and development disabilities, Palliative care, Death, Dying


This handbook is intended to be a guide for providing best care practices for end-of-life care when working with adults who have Intellectual and Developmental Disabilities (IDD). The aim of this guide is to support physicians, nurses, social workers, healthcare workers, clinicians, therapists, psychologists, palliative/hospice care staff, and other providers when providing care for people with IDD during their final stage of life. This body of work will outline the various obstacles encountered by this population, such as accessing quality medical services to include palliative and other necessary end-of-life care. Lastly, it will outline ways that the healthcare profession can make the end-of-life phase a dignified experience for individuals with IDD. While this guide is written for medical professionals, the information is also helpful for family members, close friends, and caregivers of individuals with IDD, as being familiar with these guidelines and the barriers faced by people with IDD can help in the advocacy process of getting their end-of-life needs met.

Publication Statement

Copyright is held by the author. Permanently suppressed.


68 pgs

This document is currently not available here.