Abstract
Children with central nervous system (CNS) malignancies often suffer from high symptom burden and risk of death. Pediatric palliative care is a medical specialty, provided by an interdisciplinary team, which focuses on enhancing quality of life and minimizing suffering for children with life-threatening or life-limiting disease, and their families. Primary palliative care skills, which include basic symptom management, facilitation of goals-of-care discussions, and transition to hospice, can and should be developed by all providers of neuro-oncology care. This chapter will review the fundamentals of providing primary pediatric palliative care.
Highlights
Neurological tumors comprise the second most common malignancy of children and adolescents, with an incidence of approximately 5000 children affected per year [1]
Neurological tumors generally fall into high or low grade strata and generally higher grade tumors have poorer survival, patients with either high grade or low grade tumors suffer the adverse effects of chemotherapy, radiation, surgery, and direct disease sequelae, which may be ameliorated with palliative care
The American Academy of Pediatrics outlines principles to guide palliative care practice, including: (1) Providers have an obligation to ensure interventions are only used when potential benefits outweigh risks; (2) the goal of palliative care is to enhance quality of life despite the disease trajectory; (3) palliative care focuses on symptoms and conditions; and (4) palliative care teams work towards healthy bereavement for the family of the patient
Summary
Neurological tumors comprise the second most common malignancy of children and adolescents, with an incidence of approximately 5000 children affected per year [1]. Providers caring for children with life-threatening illness should have a fundamental understanding of how to assist patients and families in establishing goals-of-care and essential pain and symptom management skills, the mainstays of the field of hospice and palliative medicine [5,6,7]. The American Academy of Pediatrics outlines principles to guide palliative care practice, including: (1) Providers have an obligation to ensure interventions are only used when potential benefits outweigh risks; (2) the goal of palliative care is to enhance quality of life despite the disease trajectory; (3) palliative care focuses on symptoms and conditions; and (4) palliative care teams work towards healthy bereavement for the family of the patient. Palliative care is generally provided by multidisciplinary teams to address the wide variety of burdens faced by patients suffering from serious illness, including neurologic tumors [8,9,10]. There is consensus that the ideal team includes a physician, nurse, social worker, spiritual advisor, and a child life therapist [5]
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