141st APHA Annual Meeting and Exposition

Home Events & Meetings Annual Meeting Schedule & Program

Recorded Annual Meeting Presentations (RAMP) are now available for purchase.
Only $90 for presenters, $140 for registered attendees and $200 for non-attendees.

Online Program

286162
Caregiver role and health care delivery for adults with intellectual and developmental disabilities at the end of life


Tuesday, November 5, 2013 : 5:00 p.m. - 5:15 p.m.

Teresa Moro, AM, LSW, School of Social Service Administration, University of Chicago, Chicago, IL
Sarah Gehlert, PhD, Brown School and the Department of Surgery of the School of Medicine, Washington University, St. Louis, MO
Teresa Savage, PhD, RN, College of Nursing, University of Illinois at Chicago, Chicago, IL
Of the over 4 million people in the United States with an intellectual and/or developmental disability (I/DD), many will die from the same diseases of aging as members of the general population. However, unlike the general population, there are health care disparities that present unique challenges for adults with I/DD and that can complicate their end of life care. Specifically, adults with I/DD are often left out of their own decision making either because their wishes are ignored or not elicited by caregivers. Also, many adults with I/DD may have both family members and professional caregivers who are participating in end-of-life care and decision making. Often, these caregivers and family members may not agree on the decisions being made at the end of life. Finally, issues such as medical provider bias and decision paralysis or indecision may all present barriers to quality end-of-life care. The purpose of this dissertation research is to present focus group and interview data from family members and agency staff caregivers in order to describe the health care disparities experienced by people with I/DD at the end-of-life. In this paper, family member and agency staff perceptions of one another's participation and role in end-of-life care, how medical decisions were made, and how care was delivered at the end of life for adults with I/DD will be presented. Gaps in our current understanding and areas for future research will also be explored.

Learning Areas:

Other professions or practice related to public health
Provision of health care to the public

Learning Objectives:
Discuss the health care disparities experienced by and suggested improvements for providing care for adults with intellectual and developmental disabilities at the end of life Describe family member perceptions of the roles of professional caregivers and health care providers at the end of life for adults with intellectual and developmental disabilities Describe professional caregiver perceptions of the roles of family members and health care providers at the end of life for adults with intellectual and developmental disabilities Describe how medical decisions were made and the medical care received by adults with intellectual and developmental disabilities at the end of life

Keyword(s): Disability, End-of-Life Care

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I was the principal investigator on this NIH NINR funded study to explore end-of-life care issues with people with intellectual/developmental disabilities. I have worked in this field since 1982 and I currently teach the ethics course in palliative care certificate program in our college.
Any relevant financial relationships? No

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.

Back to: 4391.0: The role of family members, caregivers and health providers in improving care for people with disabilities