Pediatrics. 2013 Nov;132(5):966-972. doi: 10.1542/peds.2013-2731.
Pediatric palliative care and pediatric hospice care (PPC-PHC) are often essential aspects of medical care for patients who have life-threatening conditions or need end-of-life care. PPC-PHC aims to relieve suffering, improve quality of life, facilitate informed decision-making, and assist in care coordination between clinicians and across sites of care. Core commitments of PPC-PHC include being patient centered and family engaged; respecting and partnering with patients and families; pursuing care that is high quality, readily accessible, and equitable; providing care across the age spectrum and life span, integrated into the continuum of care; ensuring that all clinicians can provide basic palliative care and consult PPC-PHC specialists in a timely manner; and improving care through research and quality improvement efforts. PPC-PHC guidelines and recommendations include ensuring that all large health care organizations serving children with life-threatening conditions have dedicated interdisciplinary PPC-PHC teams, which should develop collaborative relationships between hospital- and community-based teams; that PPC-PHC be provided as integrated multimodal care and practiced as a cornerstone of patient safety and quality for patients with life-threatening conditions; that PPC-PHC teams should facilitate clear, compassionate, and forthright discussions about medical issues and the goals of care and support families, siblings, and health care staff; that PPC-PHC be part of all pediatric education and training curricula, be an active area of research and quality improvement, and exemplify the highest ethical standards; and that PPC-PHC services be supported by financial and regulatory arrangements to ensure access to high-quality PPC-PHC by all patients with life-threatening and life-shortening diseases.
儿科姑息治疗和儿科临终关怀(PPC-PHC)通常是为患有危及生命疾病或需要临终护理的患者提供医疗服务的重要方面。PPC-PHC旨在减轻痛苦、提高生活质量、促进明智的决策,并协助临床医生之间以及不同护理场所之间的护理协调。PPC-PHC的核心承诺包括以患者为中心并让家庭参与;尊重患者和家庭并与其建立伙伴关系;追求高质量、易于获得且公平的护理;提供涵盖各个年龄段和整个生命周期的护理,并将其融入连续护理过程;确保所有临床医生都能提供基本的姑息治疗,并及时咨询PPC-PHC专家;以及通过研究和质量改进努力来改善护理。PPC-PHC指南和建议包括确保所有为患有危及生命疾病的儿童提供服务的大型医疗保健机构都拥有专门的跨学科PPC-PHC团队,这些团队应在医院和社区团队之间建立合作关系;PPC-PHC应作为综合多模式护理提供,并作为危及生命疾病患者的患者安全和质量的基石来实施;PPC-PHC团队应促进关于医疗问题和护理目标的清晰、富有同情心和直率的讨论,并支持家庭、兄弟姐妹和医护人员;PPC-PHC应成为所有儿科教育和培训课程的一部分,是研究和质量改进的活跃领域,并体现最高的道德标准;以及PPC-PHC服务应得到财务和监管安排的支持,以确保所有患有危及生命和缩短生命疾病的患者都能获得高质量的PPC-PHC服务。