Wolfe Joanne, Hammel Jim F, Edwards Kelly E, Duncan Janet, Comeau Michael, Breyer Joanna, Aldridge Sarah A, Grier Holcombe E, Berde Charles, Dussel Veronica, Weeks Jane C
Department of Pediatric Oncology, Dana-Farber Cancer Institute, 44 Binney St, SM-205, Boston, MA 02115, USA.
J Clin Oncol. 2008 Apr 1;26(10):1717-23. doi: 10.1200/JCO.2007.14.0277.
In the past decade studies have documented substantial suffering among children dying of cancer, prompting national attention on the quality of end-of-life care and the development of a palliative care service in our institutions. We sought to determine whether national and local efforts have led to changes in patterns of care, advanced care planning, and symptom control among children with cancer at the end of life.
Retrospective cohort study from a US tertiary level pediatric institution. Parent survey and chart review data from 119 children who died between 1997 and 2004 (follow-up cohort) were compared with 102 children who died between 1990 and 1997 (baseline cohort).
In the follow-up cohort, hospice discussions occurred more often (76% v 54%; adjusted risk difference [RD], 22%; P < .001) and earlier (adjusted geometric mean 52 days v 28 days before death; P = .002) compared with the baseline cohort. Do-not-resuscitate orders were also documented earlier (18 v 12 days; P = .031). Deaths in the intensive care unit or other hospitals decreased significantly (RD, 16%; P = .024). Parents reported less child suffering from pain (RD, 19%; P = .018) and dyspnea (RD, 21%; P = .020). A larger proportion of parents felt more prepared during the child's last month of life (RD, 29%; P < .001) and at the time of death (RD, 24%; P = .002).
Children dying of cancer are currently receiving care that is more consistent with optimal palliative care and according to parents, are experiencing less suffering. With ongoing growth of the field of hospice and palliative medicine, further advancements are likely.
在过去十年中，研究记录了死于癌症的儿童所遭受的巨大痛苦，这引起了全国对临终关怀质量的关注，并促使我们机构开展姑息治疗服务。我们试图确定国家和地方的努力是否导致了临终癌症儿童的护理模式、临终关怀计划和症状控制方面的变化。
来自美国一家三级儿科机构的回顾性队列研究。将1997年至2004年期间死亡的119名儿童（随访队列）的家长调查和病历审查数据与1990年至1997年期间死亡的102名儿童（基线队列）进行比较。
与基线队列相比，随访队列中临终关怀讨论更频繁（76%对54%；调整风险差异[RD]，22%；P<.001）且更早（调整几何平均数为死亡前52天对28天；P=.002）。不进行心肺复苏的医嘱记录也更早（18天对12天；P=.031）。在重症监护病房或其他医院的死亡人数显著减少（RD，16%；P=.024）。家长报告孩子的疼痛（RD，19%；P=.018）和呼吸困难（RD，21%；P=.020）减轻。更大比例的家长在孩子生命的最后一个月（RD，29%；P<.001）和死亡时（RD，24%；P=.002）感觉更有准备。
目前，死于癌症的儿童接受的护理更符合最佳姑息治疗，并且据家长反映，他们遭受的痛苦更少。随着临终关怀和姑息医学领域的不断发展，可能会有进一步的进步。
