Karen M Moody1, Verna L Hendricks-Ferguson2, Rebecca Baker3, Susan Perkins4, Joan E Haase3. 1. Division of Pediatrics, The University of Texas MD Anderson Cancer Center, Houston, Texas, USA. Electronic address: kmoody@mdanderson.org. 2. School of Nursing, Saint Louis University, Saint Louis, Missouri, USA. 3. Indiana University School of Nursing, Indianapolis, Indiana, USA. 4. Department of Biostatistics, Indiana University School of Medicine, Indianapolis, Indiana, USA.
Abstract
CONTEXT: Most children with cancer die in hospital settings, without hospice, and many suffer from high-intensity medical interventions and pain at end of life (EOL). OBJECTIVES: To examine the effects of COMPLETE: a communication plan early through EOL to increase hospice enrollment in children with cancer at EOL. METHODS: This is a two-phase, single-arm, two-center, and prospective pilot study of hospice enrollment in children with cancer whose parents received COMPLETE. COMPLETE is a series of medical doctor (MD)/registered nurse (RN)-guided discussions of goals of care using visual aids that begin at diagnosis. COMPLETE training for MD/RNs in Phase II was revised to increase their use of empathy. Preintervention/postintervention measurements for child include: time of hospice enrollment, pain, high-intensity medical interventions at EOL, and location of death; and for parent the following: uncertainty and hope. RESULTS: Twenty-one parents of 18 children enrolled in the study, and 13 children were followed through EOL. At EOL, 11 (84.6%) died on home hospice or inpatient hospice, and only two (15%) received high-intensity medical interventions. Similar to published findings in the initial 13 parents enrolled in Phase I, parents in Phase II (n = 7) had improvement in hope and uncertainty, and child pain was decreased. Revised training resulted in significant improvement in MD/RN (N = 6) use of empathy (11% in Phase I vs. 100% in Phase II; P = 0.001). CONCLUSION: COMPLETE resulted in increased hospice enrollment in children with cancer at EOL compared with historical controls. In preanalysis/postanalysis, COMPLETE decreased child pain while supporting hope and reducing uncertainty in their parents.
CONTEXT: Most children with cancer die in hospital settings, without hospice, and many suffer from high-intensity medical interventions and pain at end of life (EOL). OBJECTIVES: To examine the effects of COMPLETE: a communication plan early through EOL to increase hospice enrollment in children with cancer at EOL. METHODS: This is a two-phase, single-arm, two-center, and prospective pilot study of hospice enrollment in children with cancer whose parents received COMPLETE. COMPLETE is a series of medical doctor (MD)/registered nurse (RN)-guided discussions of goals of care using visual aids that begin at diagnosis. COMPLETE training for MD/RNs in Phase II was revised to increase their use of empathy. Preintervention/postintervention measurements for child include: time of hospice enrollment, pain, high-intensity medical interventions at EOL, and location of death; and for parent the following: uncertainty and hope. RESULTS: Twenty-one parents of 18 children enrolled in the study, and 13 children were followed through EOL. At EOL, 11 (84.6%) died on home hospice or inpatient hospice, and only two (15%) received high-intensity medical interventions. Similar to published findings in the initial 13 parents enrolled in Phase I, parents in Phase II (n = 7) had improvement in hope and uncertainty, and childpain was decreased. Revised training resulted in significant improvement in MD/RN (N = 6) use of empathy (11% in Phase I vs. 100% in Phase II; P = 0.001). CONCLUSION: COMPLETE resulted in increased hospice enrollment in children with cancer at EOL compared with historical controls. In preanalysis/postanalysis, COMPLETE decreased childpain while supporting hope and reducing uncertainty in their parents.
Authors: Verna Hendricks-Ferguson; Amy R Newman; Katharine E Brock; Joan E Haase; Jennifer L Raybin; Shermini Saini; Karen M Moody Journal: J Pediatr Nurs Date: 2021-08-25 Impact factor: 2.145