Evaluating palliative opportunities in pediatric patients with leukemia and lymphoma

Abstract

Background Despite favorable prognoses, pediatric patients with hematologic malignancies experience significant challenges that may lead to diminished quality of life or family stress. They are less likely to receive subspecialty palliative care (PC) consultation and often undergo intensive end‐of‐life (EOL) care. We examined “palliative opportunities,” or events when the integration of PC would have the greatest impact, present during a patient's hematologic malignancy course and relevant associations. Methods A single‐center retrospective review was conducted on patients aged 0–18 years with a hematologic malignancy who died between 1/1/12 and 11/30/17. Demographic, disease, and treatment data were collected. A priori, nine palliative opportunity categories were defined. Descriptive statistics were performed. Palliative opportunities were evaluated over temporal quartiles from diagnosis to death. Timing and rationale of pediatric PC consultation were evaluated. Results Patients (n = 92) had a median of 5.0 (interquartile range [IQR] 6.0) palliative opportunities, incurring 522 total opportunities, increasing toward the EOL. Number and type of opportunities did not differ by demographics. PC consultation was most common in patients with lymphoid leukemia (50.9%, 28/55) and myeloid leukemia (48.5%, 16/33) versus lymphoma (0%, 0/4, p = 0.14). Forty‐four of ninety‐two patients (47.8%) received PC consultation a median of 1.8 months (IQR 4.1) prior to death. Receipt of PC was associated with transplant status (p = 0.0018) and a higher number of prior palliative opportunities (p = 0.0005); 70.3% (367/522) of palliative opportunities occurred without PC. Conclusion Patients with hematologic malignancies experience many opportunities warranting PC support. Identifying opportunities for ideal timing of PC involvement may benefit patients with hematologic cancers and their caregivers.

Children and adolescents with hematologic cancers deserve better end‐of‐life care

“…18 Finding the right time for referral may be challenging, but evidence suggests that multiple opportunities exist. 19 We suspect, however, that referral may be impeded by the overall good prognosis in this group of patients and the understandable reluctance to acknowledge that a particular child will be the exception. The drive to "keep fighting" must no longer be a barrier to palliative care involvement 20 ; in fact, waiting until all hope for a cure is lost only reinforces this anachronistic belief and makes it a self-fulfilling prophecy.…”

Differences in palliative opportunities across diagnosis groups in children with cancer

“…Palliative opportunities have been previously defined 29–31 . A priori, nine palliative opportunities were defined, including disease progression/relapse, hematopoietic stem cell transplantation (HSCT) or chimeric antigen receptor T‐cell (CAR‐T) therapy, phase 1 trial enrollment, admission for severe symptoms, social concerns, EOL care, intensive care unit (ICU) admission, DNR status, and hospice enrollment.…”

“…29 Previous studies have evaluated palliative opportunities in specific disease populations: bone and soft tissue sarcomas, leukemia/lymphoma (LL), and central nervous system (CNS) tumors. [29][30][31] The primary aim of this study was to provide a framework to explore and understand a patient's disease course not by diagnosistreatment-relapse-death, but in terms of palliative opportunities.…”

“…We compared the number and type of palliative opportunities that occurred from diagnosis to death across three diagnosis categories, including LL, CNS tumors, and solid tumors (ST). Based on previously published literature 10,13,[32][33][34][35][36] and our preceding manuscripts describing palliative opportunities in pediatric patients with cancer, [29][30][31] we hypothesized that (a) patients with ST and CNS tumors would incur more palliative opportunities, (b) patients with LL would be least likely to enroll in hospice and have a do-not-resuscitate (DNR) order in place at the time of death, and (c) palliative opportunities increase toward the EOL in all disease groups. A secondary aim was to assess and compare the prevalence and timing of PC consultations across diagnosis groups, hypothesizing that patients with ST and CNS tumors were more likely to receive PC.…”

“…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 reduce suffering and improve overall QOL for the patient and family 29 . Previous studies have evaluated palliative opportunities in specific disease populations: bone and soft tissue sarcomas, leukemia/lymphoma (LL), and central nervous system (CNS) tumors 29–31 …”