Direct Support Professionals and End-of-Life Care

Direct support professionals (DSPs) are trained to provide services for clients with intellectual and developmental disabilities (IDD) over the life course which help promote client well-being and integration within the community. As clients reach the end of their lives, DSPs have reported that they are inadequately prepared to assist with end-of-life care. Due to their intimate knowledge of clients' behaviors and needs, however, DSPs may be well suited to aid in such caregiving. DSPs can experience significant emotional strain regarding client end-of-life issues. Unlike hospice staff who are trained in handling their emotions, direct care staff may be expected to mask their feelings according to implicit organizational rules. The absence of guidance in handling emotions can lead to disenfranchised grief which can contribute to increased work stress and burnout, with adverse effects on both staff and clients. Currently, there is limited research on DSPs' experiences with end-of-life care and on relevant trainings related to end-of-life care principles, pain and symptom management, the grief and bereavement process, and end-of-life care for IDD clients with dementia. To address these research and practice gaps, a review of trainings is provided, followed by preliminary focus group findings of DSPs on their needs for training and support in this area. Using relevant research literature and focus group findings, a proposed end-of-life care training model for DSPs is demonstrated which incorporates both applicable content and delivery methods.