COMPLETE (Communication Plan Early Through End of Life): Development of a Research Program to Diminish Suffering for Children at End of Life

Authors

• Verna L. Hendricks-Ferguson, Saint Louis University
• Amy R. Newman, Marquette UniversityFollow
• Katharine E. Brock, Emory University
• Joan E. Haase, Indiana University
• Jennifer L. Raybin, University of Colorado
• Shermini Saini, Saint Louis University
• Karen M. Moody, University of Texas

Document Type

Article

Publication Date

11-2021

Publisher

Elsevier

Source Publication

Journal of Pediatric Nursing

Source ISSN

0882-5963

Original Item ID

DOI: 10.1016/j.pedn.2021.08.010

Abstract

While overall survival has improved significantly for children with cancer over the past 75 years, cancer remains the leading cause of death from disease among children and adolescents. Further, despite the many advances in medical and nursing care, children with cancer still experience significant physical and emotional suffering over the course of their illness, especially at the end of life (EOL). Children endure significant rates of high-intensity medical interventions (e.g., intubation, intensive care unit admission) at the EOL despite many parents, adolescents, and young adult patients identifying home as their preferred location of death. Hospice care has the potential to ease suffering at the EOL and facilitate home deaths, and yet, most children still die in acute care settings without hospice care. Numerous barriers prevent timely enrollment in hospice among children with cancer who are in the EOL period. This report describes the development and testing of a palliative care/EOL communication intervention designed to overcome some of these barriers and improve EOL outcomes (i.e., earlier hospice enrollment, less use of high-intensity medical interventions, reduced pain and suffering) among children with cancer and their parents (i.e., less emotional distress and uncertainty, improved hope and healthcare satisfaction).

Comments

Journal of Pediatric Nursing, Vol. 61 (November-December 2021):454-456. DOI.

Recommended Citation

Hendricks-Ferguson, Verna L.; Newman, Amy R.; Brock, Katharine E.; Haase, Joan E.; Raybin, Jennifer L.; Saini, Shermini; and Moody, Karen M., "COMPLETE (Communication Plan Early Through End of Life): Development of a Research Program to Diminish Suffering for Children at End of Life" (2021). College of Nursing Faculty Research and Publications. 1300.
https://epublications.marquette.edu/nursing_fac/1300