Children with heart disease often experience symptoms and medically intense end-of-life care. Our study explored bereaved parents’ perceptions of a “good death” via a mail survey to 128 parents of children with heart disease who died in two centers. Parental perceptions of end-of-life circumstances were assessed by closed-ended questions including level of agreement with the question: “would you say your child experienced a good death?” and open-ended comments were contributed. Medical therapies at end-of-life and mode of death were retrieved through chart review. Of 50 responding parents, 44 (response rate: 34%) responded to the “good death” question; 16 (36%) agreed strongly, 15 (34%) agreed somewhat, and 30% disagreed (somewhat: 7, 16%; strongly: 6, 14%). Half the children were on mechanical support and 84% intubated at death. Of children with cardiopulmonary resuscitation (CPR) at end-of-life, 71% of parents disagreed with the “good death” question compared with 22% of parents whose child died following discontinuation of life-sustaining therapy or comfort measures (OR 9.1, 95% CI 1.3, 48.9, p < 0.01). Parent-reported circumstances associated with disagreement with the “good death” question included cure-oriented goals-of-care (OR 16.6, 95% CI 3.0, 87.8, p < 0.001), lack of advance care planning (ACP) (OR 12.4 95% CI 2.1, 65.3 p < 0.002), surprise regarding timing of death (OR 11.7, 95% CI 2.6, 53.4 p < 0.002), and experience of pain (OR 42.1, 95% CI 2.3, 773.7 p < 0.02). Despite high medical intensity, many bereaved parents of children with cardiac disease agree a “good death” was experienced. A “good death” was associated with greater preparedness, ACP, non-cure-oriented goals-of-care, pain control, and CPR avoidance.

患有心脏病的儿童经常会出现症状和医疗密集的临终关怀。我们的研究通过对在两个中心死亡的 128 名心脏病儿童的父母进行的邮件调查，探讨了失去亲人的父母对“美好死亡”的看法。父母对临终情况的看法通过封闭式问题进行评估，包括对以下问题的同意程度：“你会说你的孩子经历了美好的死亡吗？”并发表了开放式评论。通过图表审查检索到临终和死亡方式的药物治疗。在 50 位回应的家长中，有 44 位（回应率：34%）回应了“好死”的问题；16 人（36%）强烈同意，15 人（34%）有些同意，30% 不同意（有些：7，16%；强烈：6，14%）。一半的儿童在机械支持下，84% 的儿童在死亡时插管。在临终心肺复苏 (CPR) 的儿童中，71% 的父母不同意“良好死亡”的问题，而在停止维持生命治疗或安慰措施后孩子死亡的父母中，这一比例为 22%（OR 9.1， 95% CI 1.3, 48.9, p < 0.01)。与“良好死亡”问题不一致的父母报告的情况包括以治愈为导向的护理目标（OR 16.6, 95% CI 3.0, 87.8, p  < 0.001），缺乏预先护理计划（ACP）（OR 12.4 95% CI 2.1, 65.3 p  < 0.002），对死亡时间的惊讶（OR 11.7, 95% CI 2.6, 53.4 p  < 0.002）和疼痛经历（OR 42.1, 95% CI 2.3, 773.7 p  < 0.02）。尽管医疗强度很高，但许多患有心脏病儿童的失去亲人的父母同意经历了“美好的死亡”。“良好的死亡”与更好的准备、ACP、非治愈导向的护理目标、疼痛控制和避免心肺复苏有关。