1 University of Rochester Medical Center , Rochester, New York.
J Palliat Med. 2014 May;17(5):589-91. doi: 10.1089/jpm.2013.0576. Epub 2014 Mar 14.
Despite recent strides in pediatric palliative care (PPC), there are few published data on community-based care of dying children.
Our aim was to describe end-of-life care during the last 6 months of life for children on a community-based PPC program.
We conducted a retrospective review of children <21 years old who died while enrolled in a community-based PPC program (CompassionNet) from December 2004 through May 2008. Data were extracted on the last 6 months of life from hospital records (University of Rochester) and records of CompassionNet and its home-nursing team.
Thirty-six children died while enrolled in the CompassionNet program; diagnoses included cancer 20 (56%), genetic/neurologic disorders 7 (19%), cardiac anomalies 6 (17%), and other 3 (8%). In the last 6 months of life, there were a median of 2 emergency room visits (range 0-12) and 2 unplanned hospitalizations (range 0-6). Home visits by CompassionNet (case manager, physician, nurse) ranged from 1 to 121 (median 24). A "goals of care" discussion was documented for 29 children (81%), occurring a median of 16 days before death (range 0-118). Sixteen children died at home (44%); 20 died in the hospital (56%). Of the 16 families with a documented preference for location of death, 14 children died in this location (88%). Thirty-two families (89%) had bereavement support through CompassionNet.
Children who die of complex chronic conditions spend the majority of their last 6 months of life at home. Community-based PPC can contribute substantially to their care and comfort.
尽管儿科姑息治疗（PPC）最近取得了进展，但关于社区为临终儿童提供的护理的公开数据很少。
我们旨在描述在基于社区的 PPC 计划中，生命最后 6 个月内临终儿童的护理情况。
我们对 2004 年 12 月至 2008 年 5 月期间在社区姑息治疗计划（CompassionNet）中注册并死亡的<21 岁的儿童进行了回顾性研究。从罗切斯特大学的医院记录和 CompassionNet 及其家庭护理团队的记录中提取生命最后 6 个月的数据。
36 名儿童在 CompassionNet 计划中注册后死亡；诊断包括癌症 20 例（56％），遗传/神经障碍 7 例（19％），心脏异常 6 例（17％）和其他 3 例（8％）。在生命的最后 6 个月中，急诊室就诊中位数为 2 次（范围 0-12），非计划住院中位数为 2 次（范围 0-6）。CompassionNet 的家访次数（个案经理，医生，护士）从 1 次到 121 次（中位数 24 次）不等。为 29 名儿童（81％）记录了“治疗目标”讨论，发生在死亡前中位数为 16 天（范围 0-118）。16 名儿童在家中死亡（44％）；20 名儿童在医院死亡（56％）。在有记录的死亡地点偏好的 16 个家庭中，有 14 名儿童在该地点死亡（88％）。32 个家庭（89％）通过 CompassionNet 获得了丧亲支持。
死于复杂慢性疾病的儿童在生命的最后 6 个月中大部分时间都在家中度过。基于社区的 PPC 可以为他们的护理和舒适做出重大贡献。
