Palliative Care for Children with CNS Tumors

Tumors of the central nervous system (CNS) are the leading cause of death for all childhood cancers. Children living with incurable brain tumors follow an expected and progressive trajectory of multiple symptoms and loss of function resulting in a high symptom burden that is distinct from other childhood malignancies. The purpose of palliative care is to optimize quality of life, minimize distress, and ease suffering to those children with incurable malignancy and their families throughout the course of illness, and not reserved solely for the period at end-of-life (EOL). Integrating palliative care early after diagnosis is particularly relevant to children who are at high risk of physical, psychological, and spiritual suffering. The intent of this chapter is to explore the fundamental tenets of palliative care for children with incurable CNS tumors: unique considerations of neuro-oncology palliative care, advance care planning, parenting the dying child, siblings, communicating prognosis to children and complex symptom burden including the impact of progressive neurological dysfunction. Finally, the chapter concludes with relevant issues of autopsy, tissue donation, and research.