Department of Pediatric Palliative Care and Oncology, University Children's Hospital Zurich, Steinwiesstrasse 75, 8032, Zurich, Switzerland.
Eur J Pediatr. 2013 Feb;172(2):139-50. doi: 10.1007/s00431-012-1710-z. Epub 2012 Apr 3.
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.
儿科姑息治疗(PPC)专注于患有生命有限疾病的儿童和青少年。如果可能的话,它可以在疾病轨迹的各个点开始,尽早支持以尽可能好的生活质量生活,尽管寿命有限。从出生到青春期,患有广泛疾病谱的儿童可能会受益于 PPC。由于 50%的儿童死亡发生在生命的第一年,因此 PPC 对新生儿学也同样重要。新生儿和婴儿的死亡原因是围产期情况,如早产和先天性疾病和综合征;在较大的儿童中,创伤性伤害等外部原因超过了与疾病相关的死亡原因。PPC 可能持续数小时或数天,新生儿可能持续数年,患有复杂慢性疾病的儿童可能持续数年。对于新生儿来说,PPC 通常具有生命末期(EOL)护理的特征,随后是对家庭的丧亲护理。对于较大的儿童,PPC 可以清楚地区别于 EOL 护理;其适应症包括疾病的进展或恶化、儿童病情的明显不稳定、对技术或医疗支持的需求增加、痛苦增加或治疗失败。如果确定儿童需要姑息治疗,则可以停止无用且可能有害的治疗,并可以就治疗、护理和儿童的剩余生命做出明智的选择。结论 本综述旨在为照顾有疾病死亡风险的儿童和青少年的临床医生提供知识。PPC 通过关注儿童及其家庭定义的生活质量和目标,可以改善儿童的剩余寿命。