Department of Pediatrics, Seoul National University Children's Hospital, Seoul National University School of Medicine, Seoul, Korea.
J Korean Med Sci. 2020 Apr 27;35(16):e107. doi: 10.3346/jkms.2020.35.e107.
Despite improvements in palliative care for critically ill children, the characteristics of end-of-life care for pediatric patients with advanced heart disease are not well-known. We investigated these characteristics among hospitalized children with advanced heart disease in a tertiary referral center in Korea.
We retrospectively reviewed the records of 136 patients with advanced heart disease who died in our pediatric department from January 2006 through December 2013.
The median age of patients at death was 10.0 months (range 1 day-28.3 years). The median duration of the final hospitalization was 16.5 days (range 1-690 days). Most patients (94.1%) died in the intensive care unit and had received mechanical ventilation (89.7%) and inotropic agents (91.2%) within 24 hours of death. The parents of 74 patients (54.4%) had an end-of-life care discussion with their physician, and the length of stay of these patients in the intensive care unit and in hospital was longer. Of the 90 patients who had been hospitalized for 7 days or more, the parents of 54 patients (60%) had a documented end-of-life care discussion. The time interval from the end-of-life care discussion to death was 3 days or less for 25 patients.
Children dying of advanced heart disease receive intensive treatment at the end of life. Discussions regarding end-of-life issues are often postponed until immediately prior to death. A pediatric palliative care program must be implemented to improve the quality of death in pediatric patients with heart disease.
尽管危重病儿童的姑息治疗有所改善，但晚期心脏病儿科患者的临终关怀特征尚不清楚。我们在韩国的一家三级转诊中心调查了住院的晚期心脏病儿童的这些特征。
我们回顾性地分析了 2006 年 1 月至 2013 年 12 月期间在我院儿科死亡的 136 例晚期心脏病患者的记录。
患者死亡时的中位年龄为 10.0 个月（范围 1 天至 28.3 岁）。最后一次住院的中位时间为 16.5 天（范围 1-690 天）。大多数患者（94.1%）在重症监护病房死亡，在死亡前 24 小时内接受了机械通气（89.7%）和正性肌力药物（91.2%）。74 名患者（54.4%）的父母与医生进行了临终关怀讨论，这些患者在重症监护病房和医院的住院时间更长。在 90 名住院 7 天或以上的患者中，54 名患者（60%）的父母有记录的临终关怀讨论。从临终关怀讨论到死亡的时间间隔为 3 天或更短的有 25 名患者。
死于晚期心脏病的儿童在生命的尽头接受强化治疗。有关临终问题的讨论通常会推迟到死亡前立即进行。必须实施儿科姑息治疗计划，以提高心脏病儿科患者的死亡质量。
