Palliative care for children with brain tumors
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Tumors of the central nervous system (CNS) are the leading cause of death for all childhood cancers. Children living with incurable brain tumors (BT) 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 for the period at end of life (EOL). Pediatric palliative care is rapidly shifting from a focus of care from dying and death to an emphasis on quality of life and living throughout the course of the child's cancer trajectory regardless of the outcome. Integrating palliative care principles early after diagnosis is particularly relevant to children with brain tumors who may lead a productive and functional life for weeks to months after diagnosis. The intent of this chapter is to provide an overview of the distinct issues of palliative care for children with brain tumors. The principles of palliative care are first presented followed by the review of the unique and progressive symptom burden experienced by children with terminal brain tumors. Palliative and EOL interventions are discussed including the role of palliative sedation in limited clinical situations of refractory pain and suffering. Advance care planning (ACP) is a clinical intervention to facilitate ethical and effective decision-making for children with BT and their families. The complexity of decision-making in preparing for EOL care is further expanded. Finally, the chapter concludes with a concise review of the barriers to implementing research in this patient population.