Staff Carers' Understanding of End of Life Care

Abstract

Staff carers in pediatric skilled nursing facilities (PSNF) deal directly with dying residents, and are on the forefront of communication with families. These providers have expressed misunderstandings regarding the meaning of resuscitation status and redirection of care. This descriptive study evaluated perceptions and understanding of end of life issues by the staff in a PSNF who provide care for individuals with severe developmental disabilities and complex medical problems. A 16‐item pre‐intervention survey was administered to the staff prior to an informational presentation explaining issues related to end of life care. An 8‐item post‐intervention survey assessed any change in understanding of these issues. A total of 55 persons completed either a pre‐ or post‐intervention survey; 47 staff completed both surveys. While most staff carers were comfortable with providing care for patients with serious illnesses or needing comfort measures (narcotics, oxygen) when they are dying, they are significantly less comfortable with discontinuation of feeds or routine medications at the end of life. Observed was a significant increase in those who indicated it is acceptable to stop feedings for a dying patient in the post‐intervention survey, but there no significant difference in understanding of definition of DNR before or after the intervention. Authors note the need to provide more comprehensive information and support to assist staff carers to understand aspects of end of life care in a PSNF setting.

End-of-Life Care Policies and Practices in Pediatric Skilled Nursing Facilities

“…Effective communication between physicians, nurses, and other direct care providers is an essential element to providing high-quality patient care. 15 Similar findings have been reported abroad. In a study of endof-life decisions in Dutch residential centers serving individuals with IDDs, end-of-life decisions were made in only 27 of 47 deaths examined retrospectively.…”

Promoting Collaboration Between Hospice and Palliative Care Providers and Adult Day Services for Individuals With Intellectual and Developmental Disabilities

“…For example, individuals with IDD may not always verbally express their needs, including pain they might be feeling, or understand information provided by their health-care professionals, so alternate ways of communication may need to be explored (Friedman, Choueiri, & Gilmore, 2008;Jones, 2003;Tuffrey-Wijne, Hogg, & Curfs, 2007;Tuffrey-Wijne & McEnhill, 2008;). A lack of education around understanding disabilities as well as appropriate and effective modes of communicating with persons with IDD are pervasive among practitioners and staff alike (Scheer, Kroll, & Neri, 2003;Todd, 2002).…”

Palliative care needs of direct care workers caring for people with intellectual and developmental disabilities

“…Cognitive and motor‐related disabilities can make it more difficult for PWIDD to communicate their needs for palliative care as well as how they feel (Stein, ). Subsequently, staff visual assessment of PWIDD pain levels and health status is critical (Friedman, Choueri, & Gilmore, ).…”