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 course. The majority of opportunities occurred in the last quartile of the disease course. Of the 522 opportunities, 64.9% occurred prior to or without PC support. Except for religion (p=0.0002), number and type of opportunities did not differ by demographics. 44 patients (47.9%) received PC consultation, occurring a median of 1.8 months (IQR=4.1) prior to death. PC consultation was most common in patients with lymphoid leukemia (63.6%) vs myeloid leukemia (36.4%) or Hodgkin/Non-Hodgkin lymphoma (0%, p=0.14). Receipt of PC was associated with BMT status and a higher number of palliative opportunities (p=0.0018 and p=0.0005, respectively). The most common documented reason for PC consultation was disease-related relapse or progression (30, 68.2%), followed by EOL (7, 15.9%), and symptom management (7, 15.9%). The palliative opportunities that immediately preceded PC consultation were most commonly ICU admission (15, 34.1%), relapse (8, 18.2%), disease progression (6, 13.6%), and DNR order placement (5, 11.4%). Patients who received PC consultation were more likely to have also enrolled in hospice (19/44, 43.2%) compared to those that did not receive PC consultation (6/48, 12.5%, p=0.001).

Conclusion: Patients with hematologic malignancies experience many events warranting PC support, which increase toward the EOL. However, less than half of patients in this cohort received PC consultation, and often late in their disease course. This demonstrates potential missed opportunities for discussion of goals of care or improving quality of life through relief of physical, psychological, and psychosocial symptoms. The integration of PC into cancer care improves symptom management, emotional and psychosocial wellbeing, and EOL decisions. Defining palliative opportunities together with the disease program helps identify ideal timing and candidates for PC involvement.