Fauriel Isabelle, Moutel Grégoire, Moutard Marie-Laure, Montuclard Luc, Duchange Nathalie, Callies Ingrid, François Irène, Cochat Pierre, Hervé Christian
Laboratoire d'Ethique Médicale, de Droit de la santé et de Santé publique, Faculté de médecine Necker, Paris, France.
Nephrol Dial Transplant. 2004 May;19(5):1252-7. doi: 10.1093/ndt/gfh100. Epub 2004 Feb 19.
Few studies have looked at how decisions are made to withhold or to withdraw potentially life-sustaining treatments (LST) in paediatric nephrology. The aim of this work was to evaluate such practices in all nephrology centres in French-speaking European countries, so that guidelines could be discussed and drawn up by professionals.
We used semi-directed interviews to question health care professionals prospectively. We also retrospectively analysed the medical files of all children (n = 50) for whom a decision to withhold or to withdraw LST had been made in the last 5 years. The doctors (n = 31) who had been involved in the decision-making process were interviewed.
All 31 of the French-speaking paediatric nephrology centres in Europe were included in this study. Of these, 18 had made decisions in the previous 5 years about withholding or withdrawing LST. Resultant quality of life, based on long-term living conditions, was the principal criterion used to make the decisions. Relational aspects of life and the child's prognosis were also considered. The decision-making processes were not always collective, even though interactions between doctors and the rest of the medical team seemed to be key elements to them. The parents' involvement in the decision-making process differed between centres.
The criteria used to decide whether to withhold or to withdraw LST are not standardized, and no specific guidelines exist.
很少有研究关注在儿科肾脏病学中，如何做出关于 withhold 或 withdraw 潜在维持生命治疗（LST）的决策。这项工作的目的是评估法语区欧洲国家所有肾脏病中心的此类做法，以便专业人员能够讨论并制定指南。
我们使用半定向访谈对医疗保健专业人员进行前瞻性询问。我们还回顾性分析了过去 5 年中所有做出 withhold 或 withdraw LST 决策的儿童（n = 50）的医疗档案。对参与决策过程的医生（n = 31）进行了访谈。
欧洲所有 31 个法语区儿科肾脏病中心都纳入了本研究。其中，18 个中心在过去 5 年中做出了关于 withhold 或 withdraw LST 的决策。基于长期生活条件的最终生活质量是做出决策的主要标准。生活中的关系方面和儿童的预后也被考虑在内。决策过程并不总是集体性的，尽管医生与医疗团队其他成员之间的互动似乎是决策过程中的关键要素。各中心家长在决策过程中的参与程度有所不同。
用于决定是否 withhold 或 withdraw LST 的标准尚未标准化，且不存在具体指南。
