Hollander Seth A, Dykes John C, Chen Sharon, Barkoff Lynsey, Sourkes Barbara, Cohen Harvey, Rosenthal David N, Bernstein Daniel, Kaufman Beth D
Department of Pediatrics (Cardiology), Stanford University Medical Center, Palo Alto, California, USA.
Department of Pediatrics (Cardiology), Stanford University Medical Center, Palo Alto, California, USA.
J Pain Symptom Manage. 2017 May;53(5):927-931. doi: 10.1016/j.jpainsymman.2016.12.334. Epub 2017 Jan 4.
Despite advances in therapies, many pediatric heart transplant (Htx) recipients will die prematurely. We characterized the circumstances surrounding death in this cohort, including location of death and interventions performed in the final 24 hours.
We reviewed all patients who underwent Htx at Lucile Packard Children's Hospital, Stanford, survived hospital discharge, and subsequently died between July 19, 2007 and September 13, 2015. The primary outcome studied was location of death, characterized as inpatient, outpatient, or emergency department. Circumstances of death (withdrawal of life-sustaining treatment, death during resuscitation, or death without resuscitation with/without do not resuscitate) and interventions performed in the last 24 hours of life were also analyzed.
Twenty-three patients met the entry criteria. The median age at death was 12 (range 2-20) years, and the median time between transplant and death was 2.8 (range 0.8-11) years. Four (17%) died at home, and three (13%) died in the emergency department. Sixteen (70%) patients died in the hospital, 14 of 16 (88%) of whom died in an intensive care unit. Five of 23 (22%) patients experienced attempted resuscitation. Interventions performed in the last 24 hours of life included intubation (74%), mechanical support (30%), and dialysis (22%). Most patients had a recent outpatient clinical encounter with normal graft function within 60 days of dying.
CONCLUSIONS/LESSONS LEARNED: Death in children after Htx often occurs in the inpatient setting, particularly the intensive care unit. Medical interventions, including attempted resuscitation, are common at the end of life. Given the difficulty in anticipating life-threatening events, earlier discussions with patients regarding end-of-life wishes are appropriate, even in those with normal graft function.
尽管治疗方法有所进步，但许多小儿心脏移植（Htx）受者仍会过早死亡。我们描述了该队列中死亡的相关情况，包括死亡地点以及在最后24小时内实施的干预措施。
我们回顾了所有在斯坦福大学露西尔·帕卡德儿童医院接受Htx、出院后存活且于2007年7月19日至2015年9月13日期间死亡的患者。研究的主要结局是死亡地点，分为住院患者、门诊患者或急诊科患者。还分析了死亡情况（撤除维持生命治疗、复苏期间死亡或未进行复苏死亡，有无“不要复苏”医嘱）以及生命最后24小时内实施的干预措施。
23例患者符合纳入标准。死亡时的中位年龄为12岁（范围2 - 20岁），移植与死亡之间的中位时间为2.8年（范围0.8 - 11年）。4例（17%）在家中死亡，3例（13%）在急诊科死亡。有16例（70%）患者在医院死亡，其中16例中的14例（88%）在重症监护病房死亡。23例患者中有5例（22%）接受了复苏尝试。生命最后24小时内实施的干预措施包括插管（74%）、机械支持（30%）和透析（22%）。大多数患者在死亡前60天内有近期门诊临床就诊记录且移植物功能正常。
结论/经验教训：小儿心脏移植后死亡通常发生在住院环境中，尤其是重症监护病房。包括复苏尝试在内的医疗干预在生命末期很常见。鉴于难以预测危及生命的事件，即使是移植物功能正常的患者，也应尽早与他们讨论临终意愿。
