Trends in End-of-Life Care in Pediatric Hematology, Oncology, and Stem Cell Transplant Patients.

Abstract

Decisions about end-of-life care may be influenced by cultural and disease-specific features. We evaluated associations of demographic variables (race, ethnicity, language, religion, and diagnosis) with end-of-life characteristics (Phase I enrollment, do-not-resuscitate (DNR) orders, hospice utilization, location of death), and trends in palliative care services delivered to pediatric hematology, oncology, and stem cell transplant (SCT) patients. In this single-center retrospective cohort study, inclusion criteria were as follows: patients aged 0-35 who died between January 1, 2002 and March 1, 2014, and had been cared for in the pediatric hematology, oncology, and SCT divisions. The era of 2002-2014 was divided into quartiles to assess trends over time. Of the 445 included patients, 64% of patients had relapsed disease, 45% were enrolled in hospice, and 16% had received palliative care consultation. Patients with brain or solid tumors enrolled in hospice (P < 0.0001) and died at home more frequently than patients with leukemia/lymphoma (P < 0.0001). Patients who received Phase I therapy or identified as Christian/Catholic religion enrolled in hospice more frequently (P < 0.0001 and P = 0.03, respectively). When patient deaths were analyzed over quartiles, the frequency of DNR orders (P = 0.02) and palliative care consultation (P = 0.04) increased over time. Hospice enrollment, location of death, and Phase I trial enrollment did not change significantly. Despite increases in palliative care consultation and DNR orders over time, utilization remains suboptimal. No increase in hospice enrollment or shift in death location was observed. These data will help target future initiatives to achieve earlier discussions of goals of care and improved palliative care for all patients.