Friedrichsdorf Stefan J, Bruera Eduardo
Children's Hospitals and Clinics of Minnesota, 2525 Chicago Ave S, Minneapolis, MN 55403, USA.
University of Minnesota Medical School, 420 Delaware Street SE, Minneapolis, MN 55455, USA.
Children (Basel). 2018 Aug 31;5(9):120. doi: 10.3390/children5090120.
Among the over 21 million children with life-limiting conditions worldwide that would benefit annually from a pediatric palliative care (PPC) approach, more than eight million would need specialized PPC services. In the United States alone, more than 42,000 children die every year, half of them infants younger than one year. Advanced interdisciplinary pediatric palliative care for children with serious illnesses is now an expected standard of pediatric medicine. Unfortunately, in many institutions there remain significant barriers to achieving optimal care related to lack of formal education, reimbursement issues, the emotional impact of caring for a dying child, and most importantly, the lack of interdisciplinary PPC teams with sufficient staffing and funding. Data reveals the majority of distressing symptoms in children with serious illness (such as pain, dyspnea and nausea/vomiting) were not addressed during their end-of-life period, and when treated, therapy was commonly ineffective. Whenever possible, treatment should focus on continued efforts to control the underlying illness. At the same time, children and their families should have access to interdisciplinary care aimed at promoting optimal physical, psychological and spiritual wellbeing. Persistent myths and misconceptions have led to inadequate symptom control in children with life-limiting diseases. Pediatric Palliative Care advocates the provision of comfort care, pain, and symptom management concurrently with disease-directed treatments. Families no longer have to opt for one over the other. They can pursue both, and include integrative care to maximize the child's quality of life. Since most of the sickest children with serious illness are being taken care of in a hospital, every children's hospital is now expected to offer an interdisciplinary palliative care service as the standard of care. This article addresses common myths and misconceptions which may pose clinical obstacles to effective PPC delivery and discusses the four typical stages of pediatric palliative care program implementation.
全球每年有超过2100万患有危及生命疾病的儿童可从儿科姑息治疗（PPC）方法中受益，其中超过800万儿童需要专门的PPC服务。仅在美国，每年就有超过42000名儿童死亡，其中一半是一岁以下的婴儿。为患有严重疾病的儿童提供先进的跨学科儿科姑息治疗现已成为儿科医学的一项预期标准。不幸的是，在许多机构中，由于缺乏正规教育、报销问题、照顾濒死儿童的情感影响，最重要的是，缺乏人员配备和资金充足的跨学科PPC团队，在实现最佳护理方面仍然存在重大障碍。数据显示，患有严重疾病的儿童（如疼痛、呼吸困难和恶心/呕吐）在临终期间的大多数痛苦症状未得到解决，而在接受治疗时，治疗通常无效。只要有可能，治疗应侧重于继续努力控制潜在疾病。与此同时，儿童及其家庭应能获得旨在促进最佳身体、心理和精神健康的跨学科护理。持续存在的误解和错误观念导致了患有危及生命疾病的儿童症状控制不足。儿科姑息治疗提倡在进行针对疾病的治疗的同时提供舒适护理、疼痛和症状管理。家庭不再需要二者择一。他们可以同时追求两者，并采用综合护理以最大限度提高儿童的生活质量。由于大多数患有严重疾病的重病儿童都在医院接受治疗，现在每家儿童医院都应提供跨学科姑息治疗服务作为护理标准。本文探讨了可能对有效提供PPC造成临床障碍的常见误解和错误观念，并讨论了儿科姑息治疗项目实施的四个典型阶段。
