Department of Pediatrics, Academic Medical Centre/Emma Children's Hospital, PO Box 22660, 1100 DD Amsterdam, Netherlands.
Pediatrics. 2011 Apr;127(4):e1004-12. doi: 10.1542/peds.2010-2591. Epub 2011 Mar 14.
The goal of this study was to investigate how Dutch pediatric specialists reach end-of-life decisions, how they involve parents, and how they address conflicts.
We conducted a national cross-sectional survey among pediatric intensivists, oncologists, neurologists, neurosurgeons, and metabolic pediatricians practicing in the 8 Dutch university hospitals. We collected information on respondents' overall opinions and their clinical practice.
Of the 185 eligible pediatric specialists, 74% returned the questionnaire. All responding physicians generally discuss an end-of-life decision with colleagues before discussing it with parents. In half of the reported cases, respondents informed parents about the intended decision and asked their permission. In one-quarter of the cases, respondents informed parents without asking for their permission. In the remaining one-quarter of the cases, respondents advised parents and consequently allowed them to have the decisive voice. The chosen approach is highly influenced by type of decision and type and duration of treatment. Conflicts within medical teams arose as a result of uncertainties about prognosis and treatment options. Most conflicts with parents arose because parents had a more positive view of the prognosis or had religious objections to treatment discontinuation. All conflicts were eventually resolved by a combination of strategies. In 66% of all cases, pain and symptom management were intensified before the child's death.
Within Dutch pediatrics, end-of-life decisions are team decisions. Pediatric specialists differ considerably in how they involve parents in end-of-life decision-making, ranging from benevolent paternalism to parental autonomy. Main conflict-solving strategies are taking more time and extending discussions.
本研究旨在调查荷兰儿科专家如何做出临终决策，如何让父母参与决策过程，以及如何处理冲突。
我们在荷兰 8 所大学医院的儿科重症监护医师、肿瘤医师、神经科医师、神经外科医师和代谢儿科医师中进行了一项全国性的横断面调查。我们收集了关于受访者总体意见及其临床实践的信息。
在 185 名符合条件的儿科专家中，有 74%的人回复了问卷。所有参与调查的医生通常在与父母讨论之前，先与同事讨论临终决策。在报告的案例中，有一半的医生会告知父母预期的决策，并征求他们的同意。在四分之一的案例中，医生会在没有征求父母同意的情况下告知他们。在其余四分之一的案例中，医生会向父母提供建议，并允许他们拥有决定性的话语权。所选方法受决策类型和治疗类型及持续时间的影响很大。医疗团队内部的冲突是由于对预后和治疗选择的不确定性造成的。与父母之间的大多数冲突是因为父母对预后有更积极的看法，或者对停止治疗有宗教上的反对。所有的冲突最终都通过一系列策略得到解决。在所有案例中，66%的情况下，在孩子死亡前会加强疼痛和症状管理。
在荷兰儿科领域，临终决策是团队决策。儿科专家在让父母参与临终决策方面存在很大差异，从仁慈的家长式作风到父母的自主权都有。主要的解决冲突策略是花更多的时间和延长讨论。
