Defining and timing of palliative opportunities in children with central nervous system tumors

Abstract

Background Children with brain and central nervous system (CNS) tumors experience substantial challenges to their quality of life during their disease course. These challenges are opportunities for increased subspecialty palliative care (PC) involvement. Palliative opportunities have been defined in the pediatric oncology population, but the frequency, timing, and factors associated with palliative opportunities in pediatric patients with CNS tumors are unknown. Methods A single-institution retrospective review was performed on children ages 0-18 diagnosed with a CNS tumor who died between 01/01/2012-11/30/2017. Nine palliative opportunities were defined prior to data collection (progression; relapse; admission for severe symptoms; intensive care admission; bone marrow transplant; phase 1 trial; hospice; do-not-resuscitate (DNR) order). Demographic, disease, treatment, palliative opportunity, and end-of-life data were collected. Opportunities were evaluated over quartiles from diagnosis to death. Results Amongst 101 patients with a median age at death of eight years (Interquartile range, IQR=8.0, range 0-22), there was a median of seven (IQR=6) palliative opportunities per patient, which increased closer to death. PC consultation occurred in 34 (33.7%) patients, at a median of 2.2 months before death, and was associated with having a DNR order (p=0.0028). Hospice was involved for 72 (71.3%) patients. Conclusion Children with CNS tumors suffered repeated events warranting PC yet received PC support only one-third of the time. Mapping palliative opportunities over the cancer course promotes earlier timing of PC consultation which can decrease suffering and resuscitation attempts at the end-of-life.

Physician decision-making process about withholding/withdrawing life-sustaining treatments in paediatric patients: a systematic review of qualitative evidence

“…In PPC; an ethically sensitive EOL decision that is frequently made is withholding/withdrawing LST in situations where LST is no longer deemed to be meaningful or effective [13]. Hospital-wide audits of paediatric deaths [14][15][16][17] and retrospective studies in paediatric intensive care units (PICUs) [18,19] revealed that a significant factor associated with children's deaths is the medical decision to withhold/withdraw LST.…”

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 …”