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首页> 外文期刊>Journal of paediatrics and child health >End-of-life care for children with complex congenital heart disease: Parents' and medical care givers' perceptions
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End-of-life care for children with complex congenital heart disease: Parents' and medical care givers' perceptions

机译：患有复杂先天性心脏病的儿童的生活结束：父母的父母和医疗护理者的看法

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Aim: In complex congenital heart diseases (CHD), patients may remain affected by significant morbidity and mortality after surgery. We analysed the end-of-life (EoL) care in children with severe CHD who died in our institution and investigated perspectives of parents and healthcare professionals (HCPs).Methods: Medical records of all children (age < 18 years old) affected by a severe CHD who died in a tertiary cardiac care centre were reviewed. Subsequently, a cross-sectional questionnaire-based study of parents and HCPs of children involved in the study was designed.Results: In total, 30 children died (median age: 45 days; range: 15 days to 3.4 years). Of them, 97% (31/32) died in an intensive care unit setting and were intubated and sedated at EoL. A total of 77% (23/30) died without parents being present at bedside. Eighteen families and 10 HCPs were interviewed. For 61% of the parents (11/18) and 70% of the clinicians (7/10), the goal of therapy at the EoL was 'to lessen your child's suffering as much as posible'. Overall, 44% of parents (8/18) and 50% of HCPs recognised that their child had no chance of survival 'a few days before the child died'.Conclusions: We believe that these data suggest an unconscious reluctance to change goals of care in EoL, shifting from intensive care to comfort and quality of life.
机译：目的：在复杂先天性心脏病（CHD）中，患者术后仍可能受到显著的发病率和死亡率的影响。我们分析了在我们机构死亡的严重CHD儿童的临终关怀（EoL），并调查了父母和医护人员（HCP）的观点。方法：回顾在三级心脏护理中心死亡的所有严重冠心病患儿（年龄<18岁）的病历。随后，设计了一项基于横断面调查问卷的研究，对参与该研究的儿童的父母和医务人员进行调查。结果：共有30名儿童死亡（中位年龄：45天；范围：15天至3.4岁）。其中97%（31/32）死于重症监护病房，并在EoL时插管和镇静。共有77%（23/30）在父母不在场的情况下死亡。采访了18个家庭和10名医务人员。对于61%的父母（11/18）和70%的临床医生（7/10），EoL治疗的目标是“尽可能减轻孩子的痛苦”。总的来说，44%的父母（8/18）和50%的医务人员认识到他们的孩子在“孩子死亡前几天”没有生存的机会。结论：我们认为，这些数据表明，在EoL患者中，患者无意识地不愿意改变护理目标，从重症监护转向舒适和生活质量。

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