Frequency and Timing of Palliative Opportunities in Pediatric Patients with Hematologic Malignancies

Background: Due to relatively more favorable survival rates, parents and providers of children with hematologic malignancies maintain high hopes for cure, resulting in more cure-directed therapy and hospitalizations at the end-of-life (EOL), as well as delayed palliative care (PC) involvement. Pediatric patients with hematologic malignancies are less likely to receive PC and die at home versus patients with solid tumors, and often undergo intensive EOL care. Despite favorable prognoses, patients still relapse and experience other challenging events throughout their disease. A “palliative opportunity” is an event during a patient's disease course at which time subspecialty PC, or care provided by clinicians with subspecialty training or board certification in PC, could be provided to improve the overall care of the patient or family. It is important to explore palliative opportunities to better understand the disease course, as well as how and when to introduce PC to patients and families. Objectives: Examine the palliative opportunities present during a patient's course with a hematologic malignancy and relevant demographic, disease, or EOL associations. Methods: A single-center retrospective review was conducted on patients aged 0-18 years with leukemia or lymphoma who died from 1/1/12-11/30/17. Demographic, disease, and treatment data were collected. A priori, nine palliative opportunity categories were defined: (1) relapse of disease, (2) disease progression, (3) receipt of bone marrow transplant (BMT) or chimeric antigen receptor T-cell (CAR-T) therapy, (4) Phase 1 trial enrollment, (5) admission for symptoms (pain or dyspnea requiring IV opioids, nausea/vomiting requiring IV anti-emetics, fatigue, neurologic symptoms, or social concerns), (6) intensive care unit (ICU) admission, (7) admission for EOL care, (8) hospice enrollment, (9) do-not-resuscitate (DNR) status. Opportunities were evaluated overall and temporally over quartiles from diagnosis to death, independent of PC consultation. Descriptive and inferential statistics were performed using SAS Enterprise Guide 7.1. Results: During the study period, 92 patients with hematologic malignancies died, including 55 with B or T-cell lymphoid leukemia/lymphoma, 33 with acute/chronic myeloid leukemia, and 4 with Hodgkin/Non-Hodgkin lymphoma. These patients incurred 522 total opportunities with a median of 5.0 (Interquartile Range (IQR)=6.0) palliative opportunities per patient throughout their disease co