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).
Keywords
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Article info
Publication history
Published online: August 24, 2021
Accepted:
August 12,
2021
Received:
June 30,
2021
Identification
Copyright
© 2021 Elsevier Inc. All rights reserved.
