Procedural burden experienced by children with cancer during their terminal hospital admission

Background: Children with chronic conditions, including cancer, have been shown to have high-intensity end-of-life care. We assessed the frequency and timing of invasive procedures that children with cancer undergo during their terminal hospital admission (THA). Methods: The Pediatric Health Information System database was queried from 2011 to 2015 for patients ages 1–18 years with a “malignancy” flag who died in the hospital. Patient demographics, admission details, procedures codes, and date of service were extracted. Invasive procedures were categorized into ‘major operations’ or ‘minor procedures’. Results: 2210 children with cancer were identified as having a THA. During the THA, 1423 (64.4%) patients underwent an invasive procedure and 856 (60.1%) of those children underwent three or more procedures. 466 (21.1%) patients underwent a total of 780 major operations. The most common operations were ventriculostomy/ventriculoperitoneal shunt (n = 211), intracranial mass excision (n = 60), bowel resection (n = 56), and exploratory laparotomy/laparoscopy (n = 46). 101 (21.7%) patients who underwent a major operation died within 48 h of surgery. Conclusions: Children who have cancer and die in the hospital face a large procedural burden prior to their death. This study highlights the need for open, multidisciplinary discussions regarding the necessity of these procedures and for surgeon involvement in complex end-of-life care decisions. Type of study: Retrospective cohort review. Level of evidence: Level IV.