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End-of-Life Care of Children with Cancer: Variation and Stakeholder Priorities

University of Alabama at Birmingham
Emily Johnston, MD
Grant Type: 
Young Investigator Grants
Year Awarded: 
Type of Childhood Cancer: 
General Pediatric Cancer
Project Description: 


Cancer is the leading cause of non-accidental death for children in the United States, and all children dying of cancer deserve our utmost efforts to provide high-quality end-of-life care. Two-thirds of children dying of cancer receive intense medical treatments--being hooked up to machines that artificially keep them alive or dying away from their home--despite growing evidence that many do not want such care. In a preliminary study, we found high rates of intense care in patients aged 15-21, those of Hispanic ethnicity, and in children with blood cancers. Studies in older adults suggest the rates of intense end-of-life care vary by hospital, but this has not been studied in children. We plan to learn the hospital characteristics associated with high-intensity end-of-life care for kids with cancer. Intensity of end-of-life care has been found to be an important quality marker for end-of-life care in older cancer patients, but little is known about its appropriateness in kids. 

Project Goal:

Therefore, we will ask bereaved family members and pediatric cancer experts for their thoughts on intensity and other adult end-of-life quality markers and if there are unique quality markers for end-of-life care for children. This study can lead to new end-of-life quality markers for this vulnerable population, which may lead to future studies and treatments. Additionally, learning characteristics of hospitals that have high-intensity end-of-life care can set the stage for in-depth studies of high- and low-intensity hospitals and provide treatment ideas to improve the quality of end-of-life care for this underserved population.