TY - JOUR
T1 - A Pilot Study of the Effects of COMPLETE
T2 - A Communication Plan Early Through End of Life, on End-of-Life Outcomes in Children With Cancer
AU - Moody, Karen M.
AU - Hendricks-Ferguson, Verna L.
AU - Baker, Rebecca
AU - Perkins, Susan
AU - Haase, Joan E.
N1 - Funding Information:
The authors disclose receipt of financial support for the research, authorship, and/or publication of this manuscript. This research was funded by two Walther Cancer Foundation grants: WCF 0169.01 and WCF 0166.01, National Institutes of Health (NIH [5R21NR011071-02]) and a grant awarded under the American Recovery Act of 2009 at the NIH and National Institute of Nursing Research (1R21NR011071-01A1). The content is the sole responsibility of the authors and does not represent official views of the NIH. The authors thank Dr. Robert Arnold for his support and guidance in development of the COMPLETE intervention and the parents, patients, physicians, and nurses who participated in this study. The authors also convey their sincere gratitude to the physicians and nurses and parents who participated in their delivery of the COMPLETE intervention. Also, they convey their appreciation to the VitalTalk consultant, Robert M. Arnold, MD, for his expert input and guidance during the planning and preparation of the grant that supported this study. This work was submitted as an abstract and presented as a workshop at the 23rd Annual Interdisciplinary Conference on Supportive Care, Hospice and Palliative Medicine at MD Anderson Cancer Center in Houston Texas on October 18, 2019. The authors declare no conflicts of interest.
Funding Information:
The authors disclose receipt of financial support for the research, authorship, and/or publication of this manuscript. This research was funded by two Walther Cancer Foundation grants: WCF 0169.01 and WCF 0166.01, National Institutes of Health (NIH [ 5R21NR011071-02 ]) and a grant awarded under the American Recovery Act of 2009 at the NIH and National Institute of Nursing Research ( 1R21NR011071-01A1 ). The content is the sole responsibility of the authors and does not represent official views of the NIH.
Publisher Copyright:
© 2020 American Academy of Hospice and Palliative Medicine
PY - 2020/8
Y1 - 2020/8
N2 - 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.
AB - 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.
KW - Child
KW - cancer
KW - communication
KW - goals-of-care
KW - hospice
KW - palliative care
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U2 - 10.1016/j.jpainsymman.2020.03.033
DO - 10.1016/j.jpainsymman.2020.03.033
M3 - Article
C2 - 32315752
AN - SCOPUS:85085215102
SN - 0885-3924
VL - 60
SP - 417
EP - 421
JO - Journal of pain and symptom management
JF - Journal of pain and symptom management
IS - 2
ER -