Illness and end-of-life experiences of children with cancer who receive palliative care

Erica C. Kaye, Courtney A. Gushue, Samantha DeMarsh, Jonathan Jerkins, April Sykes, Zhaohua Lu, Jennifer M. Snaman, Lindsay Blazin, Liza Marie Johnson, Deena R. Levine, R. Ray Morrison, Justin N. Baker

Research output: Contribution to journalArticlepeer-review

48 Scopus citations


Background: The field of pediatric palliative oncology is newly emerging. Little is known about the characteristics and illness experiences of children with cancer who receive palliative care (PC). Methods: A retrospective cohort study of 321 pediatric oncology patients enrolled in PC who died between 2011 and 2015 was conducted at a large academic pediatric cancer center using a comprehensive standardized data extraction tool. Results: The majority of pediatric palliative oncology patients received experimental therapy (79.4%), with 40.5% enrolled on a phase I trial. Approximately one-third received cancer-directed therapy during the last month of life (35.5%). More than half had at least one intensive care unit hospitalization (51.4%), with this subset demonstrating considerable exposure to mechanical ventilation (44.8%), invasive procedures (20%), and cardiopulmonary resuscitation (12.1%). Of the 122 patients who died in the hospital, 44.3% died in the intensive care unit. Patients with late PC involvement occurring less than 30 days before death had higher odds of dying in the intensive care unit over the home/hospice setting compared to those with earlier PC involvement (OR: 4.7, 95% CI: 2.47–8.97, P < 0.0001). Conclusions: Children with cancer who receive PC experience a high burden of intensive treatments and often die in inpatient intensive care settings. Delayed PC involvement is associated with increased odds of dying in the intensive care unit. Prospective investigation of early PC involvement in children with high-risk cancer is needed to better understand potential impacts on cost-effectiveness, quality of life, and delivery of goal concordant care.

Original languageEnglish (US)
Article numbere26895
JournalPediatric Blood and Cancer
Issue number4
StatePublished - Apr 2018


  • end of life
  • intensive care
  • palliative care
  • palliative oncology
  • pediatric oncology
  • quality of life

ASJC Scopus subject areas

  • Pediatrics, Perinatology, and Child Health
  • Hematology
  • Oncology


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