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End-of-life care policies and practices in pediatric skilled nursing facilities
Sandra L Friedman1, David T Helm2, Ashley C Woodman3
1University of Colorado School of Medicine, Aurora, CO, USA Neurodevelopmental Behavioral Pediatrics, Children's Hospital Colorado, Aurora, CO, USA sandra.friedman@childrenscolorado.org.
Insights
Pediatric skilled nursing facilities routinely provide end-of-life care (EOLC) for children with severe intellectual disability. Having an EOLC policy and in-service training improves staff preparedness and perceived effectiveness in delivering this care.
Area of Science:
- Pediatric healthcare
- Bioethics
- Healthcare policy
Background:
- A subset of children with intellectual and developmental disabilities (IDD) and complex medical needs reside in pediatric skilled nursing facilities (PSNFs).
- These children experience elevated mortality, necessitating routine end-of-life care (EOLC).
- Understanding EOLC policies and practices in PSNFs is crucial for improving care quality.
Purpose of the Study:
- To explore current end-of-life care (EOLC) policies and practices in US-based pediatric skilled nursing facilities.
- To assess staff perceptions of EOLC effectiveness, preparedness, and training needs.
- To identify factors associated with improved EOLC delivery in these settings.
Main Methods:
- A national survey was distributed to administrators, nursing directors, and medical directors in pediatric skilled nursing facilities.
- The survey collected data on end-of-life care (EOLC) policies, do-not-resuscitate (DNR) order understanding, family involvement, and in-service training.
- Statistical associations were examined between policy presence, training, and staff-reported outcomes.
Main Results:
- The presence of an official end-of-life care (EOLC) policy correlated with higher perceived effectiveness of care among staff.
- Staff reported feeling better prepared and more comfortable providing EOLC when in-service training was available.
- Availability of in-service training was linked to improved staff confidence in delivering end-of-life care.
Conclusions:
- Formal end-of-life care (EOLC) policies are associated with improved staff perceptions of care effectiveness in pediatric skilled nursing facilities.
- In-service training significantly enhances staff preparedness and comfort levels when providing EOLC to children with complex needs.
- Implementing comprehensive EOLC policies and robust training programs is recommended to optimize care for vulnerable pediatric populations.
Abstract:
Although most children with intellectual and developmental disabilities reside in the community, a subset of children with severe intellectual disability and complex medical needs reside in pediatric skilled nursing facilities. These children have elevated mortality with end-of-life care (EOLC) routinely provided. The present study explored policies and practice in such settings by surveying administrators, nursing directors, and medical directors in facilities across the United States. In addition to EOLC policies and practices, staff reported on their understanding of definitions of do-not-resuscitate orders, family involvement in EOLC planning, and the availability of in-service training. The presence of an official EOLC policy was associated with higher ratings of perception of effectiveness among staff. Staff felt more prepared and comfortable providing EOLC when in-service training was provided.
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