Integration of Neuro-Oncology and Pediatric Palliative Care at Diagnosis in the Outpatient Setting. (FR436)

Abstract

•Gain knowledge about the common types of life-threatening brain tumors seen in children, cutting edge treatments for these tumors, and why an understanding of neuro-oncology is critical to pediatric palliative care providers.•Describe the barriers to introducing palliative care at the time of diagnosis of a high grade pediatric brain tumor and how the pediatric neuro-oncology and palliative care teams negotiated a patient/family-focused approach that overcame the barriers.•Weigh the advantages and disadvantages of several different models for overcoming the logistical challenges of integrating palliative care into a pediatric neuro-oncology clinic.•Be able to quote data that supports the benefits of early introduction of palliative care in the management of pediatric neuro-oncology patients diagnosed with life-threatening tumors. Brain tumors are the second most common tumor in children accounting for about 1 in 4 tumors. They are also the leading cause of cancer-related death in children. The tumors and their treatments are associated with significant physical symptoms, psychological strain, learning difficulties, and mortality. For these reasons, it is imperative that children with brain tumors have access to palliative care starting at the time of diagnosis. Unfortunately, access to palliative care for these children is not universal and when available is often indroduced late in the couse of disease. The prognosis and treatment of the most common life-threatening brain tumors will be reviewed by a neuro-oncology team. The neuro-oncology team will also share five years of experience embedding palliative care into the pediatric oncology clinic at a large tertiary care hospital. In this setting, it has been shown that families are very open to and appreciative of early palliative care when it is framed by the oncology team as an essential part of the care of children with brain tumors. The neuro-oncology team and the palliative care team will dialogue about the sources of resistance to early introduction of palliative care and how this resistance can be overcome. The practical considerations involved in the implementation of clinic-based palliative care will also be discussed. This will include staffing and the advantages of different clinic models including 1) embedded clinics, 2) floating clinics, and 3) free standing clinics. Finally, a retrospective review of 5 years of clinical data collected on over 60 pediatric neuro-oncology patients concurrently followed in palliative care clinic will be presented. The data will include type of brain tumor, time from diagnosis to palliative consult, symptom frequency, time from POLST completion to death, time from hospice referal to death, and location of end of life care.