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

Published:August 24, 2021DOI:


      • Despite significant advances, children with cancer still suffer physical and emotional distress at the end of life.
      • COMPLETE is an intervention that helps identify values and goals-of-care decisions in the context of the child's shifting prognosis.
      • Pilot testing COMPLETE demonstrated improved end-of-life outcomes for both parents and children.
      • COMPLETE intervention is currently undergoing efficacy testing in a multi-site RCT, sponsored by the NIH/NCI.


      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).


      To read this article in full you will need to make a payment

      Purchase one-time access:

      Academic & Personal: 24 hour online accessCorporate R&D Professionals: 24 hour online access
      One-time access price info
      • For academic or personal research use, select 'Academic and Personal'
      • For corporate R&D use, select 'Corporate R&D Professionals'


        • Czajkowski S.M.
        • Powell L.H.
        • Adler N.
        • Naar-King S.
        • Reynolds K.D.
        • Hunter C.M.
        • Charlson M.E.
        From ideas to efficacy: The ORBIT model for developing behavioral treatments for chronic diseases.
        Health Psychology. 2015; 34: 971
        • Dingfield L.
        • Bender L.
        • Harris P.
        • Newport K.
        • Hoover-Regan M.
        • Feudtner C.
        • Clifford S.
        • Casarett D.
        Comparison of pediatric and adult hospice patients using electronic medical record data from nine hospices in the United States, 2008–2012.
        Journal of Palliative Medicine. 2015; 18: 120-126
        • Haines E.R.
        • Frost A.C.
        • Kane H.L.
        • Rokoske F.
        Barriers to accessing palliative care for pediatric patients with cancer: A review of the literature.
        Cancer. 2018; 124: 2278-2288
        • Hendricks-Ferguson V.L.
        Parental perspectives of initial end-of-life care communication.
        International Journal of Palliative Nursing. 2007; 13: 522-531
        • Hendricks-Ferguson V.L.
        • Haase J.E.
        Parent perspectives of receiving information about palliative and end-of-life care options from their child’s pediatric providers.
        Cancer Nursing. 2019; 42: E22-E30
        • Hendricks-Ferguson V.L.
        • Kane J.R.
        • Pradhan K.
        • Chie-Schin S.
        • Gauvain K.
        • Haase J.
        Evaluation of a physician and nurse dyad training procedures to deliver a palliative and end-of-life communication intervention to parents of children with a brain tumor.
        Journal of Pediatric Oncology Nursing. 2015; 32: 337-347
        • Hendricks-Ferguson V.L.
        • Pradhan K.
        • Shih C.S.
        • Gauvain K.M.
        • Kane J.R.
        • Liu J.
        • Haase J.E.
        Pilot evaluation of a palliative and end-of-life communication intervention for parents of children with a brain tumor.
        Journal of Pediatric Oncology Nursing. 2017; 34: 203-213
        • Johnston E.E.
        • Bogetz J.
        • Saynina O.
        • Chamberlain L.J.
        • Bhatia S.
        • Sanders L.
        Disparities in inpatient intensity of end-of-life care for complex chronic conditions.
        Pediatrics. 2019; 143 (Article e20182228.)
        • Johnston E.E.
        • Martinez I.
        • Currie E.
        • Brock K.E.
        • Wolfe J.
        Hospital or home? Where should children die and how do we make that a reality?.
        Journal of Pain and Symptom Management. 2020; 60: 106-115
        • Kaye E.C.
        • Friebert S.
        • Baker J.N.
        Early integration of palliative care for children with high-risk cancer and their families.
        Pediatric Blood & Cancer. 2016; 63: 593-597
        • Kochanek K.D.
        • Murphy S.L.
        • Xu J.
        • Arias E.
        Deaths: Final data for 2017.
        National Vital Statistics Reports. 2019; 68 (Retrieved from:): 1-76
        • Levine D.R.
        • Mandrell B.N.
        • Sykes A.
        • Pritchard M.
        • Gibson D.
        • Symons H.J.
        • Baker J.N.
        Patients’ and parents’ needs, attitudes, and perceptions about early palliative care integration in pediatric oncology.
        JAMA Oncology. 2017; 3: 1214-1220
        • Moody K.
        • Hendricks-Ferguson V.L.
        • Baker R.
        • Perkins S.
        • Haase J.
        A pilot study of the effects of a communication plan: Early through end of life (COMPLETE) on end-of-life outcomes in children with cancer.
        Journal of Pain and Symptom Management. 2020; 60: 417-421
        • National Cancer Institute.
        The child with cancer: A parent's guide (NIH Publication No. 15-2378). U.S. Department of Health and Human Services.
        in: National Institutes of Health. 2015