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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:https://doi.org/10.1016/j.pedn.2021.08.010

      Highlights

      • 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.

      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).

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