Neurological and neuromuscular conditions and symptoms

Conditions associated with the impaired nervous system are common in paediatric palliative care (PPC). And yet, many neurological conditions are themselves rare, thereby limiting knowledge about each condition and its expected course. Parents and providers often face significant uncertainty about the risks and benefits associated with treatment decisions as prognostic information and scientific evidence may be limited. Other challenges include difficult assessment for the presence and source of distressing symptoms and the lifelong nature of many of the symptoms these children experience. This chapter addresses several aspects of palliative care in the management of neurological and neuromuscular symptoms. The first section provides a palliative framework for addressing neurological and neuromuscular conditions and a brief overview of the major life-limiting conditions related to the nervous system. The second section reviews the associated symptoms of the impaired central nervous system (CNS) along with their treatment strategies. This chapter deliberately focuses on care for children with severe neurological impairment, as these children increasingly benefit from the specific expertise of palliative care teams.