The Role of Professional Caregivers in End-of-Life Care for People with Intellectual and Developmental Disabilities

Background and Purpose: People with intellectual and developmental disabilities (I/DD) have a long history of disparities within the health care system. The over 4 million people with I/DD come from all racial backgrounds and socioeconomic circumstances; however, they often experience worse health and more barriers to accessing and affording health care than any other group in the United States. End-of-life care is particularly complicated as individuals with I/DD increasingly interact with health care providers in hospitals and nursing homes who are often ill equipped to meet their needs. Additionally, professional agency staff and family caregivers generally lack the training and resources necessary to effectively care for people at the end of life. Despite these disparities, research on the end-of-life care for people with I/DD remains limited. The objective of this study is to describe the perspectives of people living with I/DD, professional agency staff, and family caregivers on end-of-life care.  In this paper, data on the role of professional agency staff in the provision of end-of-life care will be presented. Recommendations for future research and professional training will be outlined.

Methods: A qualitative, exploratory approach was used to collect focus group (9 total) and individual interview (30 total) data from adults with I/DD (n=20), family caregivers (n=19), and professional agency staff (n=19). Participants were recruited from 4 community agencies in a large metropolitan area. Adult participants with I/DD had experienced the death of someone close to them. Family caregivers and professional agency staff had experienced the death of an adult with I/DD. The focus groups were audio recorded and transcribed in live-time using Communication Access Realtime Translation. The individual interviews were audio recorded and transcribed verbatim. All of the interview data were double coded by two members of the research team.

Results: Individuals from all 3 participant groups discussed the role of professional agency staff. Many of the adults with I/DD described talking about their loss with agency staff, and several participants identified a specific staff member who they would want to make medical decisions for them if needed. Family members generally described the importance of having the support of agency staff; however, some family members described interactions with staff that were unfavorable and offered suggestions for improvement. A majority of the professional agency staff identified a lack of training as a barrier to providing quality end-of-life care to people with I/DD. Other barriers included negative interactions with family and guardians. Staff offered several suggestions for ways to improve their training.

Conclusions and Implications: In an era of mounting social problems and shrinking resources, society’s most vulnerable participants are often overlooked. Social workers are well positioned to improve the way end-of-life care is delivered for people with I/DD. By conducting community-based research, social workers may begin to better understand and eradicate some of the inequities experienced by people with I/DD at the end of life. Academic researchers and professional agency staff should work together to develop and implement more equitable end-of-life care practices and policies for people with I/DD.