End-of-Life Care of Children with Cancer: Variation and Stakeholder Priorities
Background: 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.
Project Update 2021: With the support of this Alex’s Lemonade Stand Young Investigator Award, we have learned a tremendous amount about what qualifies as high quality end-of-life care for children with cancer. Twenty-eight bereaved families shared their experiences about their child’s end-of-life care; what went well, what did not go well, and what they think of medically intense end-of-life care. The interviews provided a wealth of information about how we can better serve families whose child is dying from cancer. In particular, families appreciate anything – from relaxed visitor policies to help with rent that allow them to focus on spending time with their dying child. Additionally, we were able to combine the stories of the families with expert opinions and develop 16 markers of high quality end-of-life care for children with cancer. The quality measures will allow us to determine who is and who isn’t receiving high quality end-of-life care, which is an essential first step in providing high quality end-of-life care for all children dying of cancer.
