Aspects of Palliative Care in Child Neurology

Pediatric palliative medicine/care (PPC) is an approach to care that focuses on improving the quality of life of children facing a life limiting condition (LLC). LLCs are classified by the ACT (Association for children with life-threatening or terminal conditions and their families) concept in four groups: (i) conditions for which treatment may be feasible but can fail (ii) conditions in which premature deaths is inevitable but where long periods of participation in normal activities may be feasible (iii) progressive conditions without curative options where treatment is exclusively palliative (iv) irreversible but non-progressive conditions causing likelihood of premature death through complications. Neurological LLCs in children are represented in all four groups according to the ACT concept. Furthermore neuropediatric LLCs comprise up to 70% of the diagnoses in PPC subject to the criteria of a neurological disease entity (inclusion of CNS tumors, chromosomal anomalies, metabolic disorders etc.). The clinical course in neuropediatric LLCs differs from the course of oncological LLCs. Therefore the needs of the affected children, their families and their requirements of the PPC providers are different. In Germany PPC is often recognized solely as an end of life care. Typically, PPC accomplishes the objective of improving quality of life through symptom management e.g., pain control, coordination of care, communication and by providing psychosocial and spiritual support to the child and the family also in bereavement counseling. Within in the last years three different levels of specialized PPC have been established in Germany