Pediatric palliative care—when quality of life becomes the main focus of treatment

Pediatric palliative care (PPC) focuses on children and adolescents with life-limiting diseases. It may be initiated at various points of the disease trajectory, if possible early enough to support living with the best possible quality of life despite a limited lifespan. From birth to adolescence, children with a broad spectrum of diseases may benefit from PPC. Since 50% of deaths in childhood occur within the first year of life, PPC is just as relevant to neonatology. Causes of death in the neonate and young infant are due to perinatal conditions such as preterm birth and congenital disorders and syndromes; in older children, external causes, such as traumatic injuries, outweigh disease-related causes of death. PPC may last from a few hours or days for neonates to many years for children with complex chronic conditions. For neonates, PPC often has the character of end-of-life (EOL) care followed by bereavement care for the family. For older children, PPC can clearly be differentiated from EOL care; its indications include progress or deterioration of disease, marked instability of the child’s condition, increase in the need for technical or medical support, increase in suffering, or failure of treatment. If a child’s need for palliative care is established, useless and potentially harmful treatments may be withheld and informed choices can be made about treatment, care, and the remaining life of the child. Conclusion This review aims to provide knowledge for clinicians who care for children and adolescents at risk of dying from their disease. PPC can improve the child’s remaining lifetime by focusing on quality of life and goals that are defined by the child and his or her family.