Birchley Giles, Gooberman-Hill Rachael, Deans Zuzana, Fraser James, Huxtable Richard
Centre for Ethics in Medicine, University of Bristol, Bristol, UK.
Musculoskeletal Research Unit, University of Bristol, Bristol, UK.
Arch Dis Child. 2017 Oct;102(10):930-935. doi: 10.1136/archdischild-2016-312076. Epub 2017 Apr 13.
In English paediatric practice, English law requires that parents and clinicians agree the 'best interests' of children and, if this is not possible, that the courts decide. Court intervention is rare and the concept of best interests is ambiguous. We report qualitative research exploring how the best interests standard operates in practice, particularly with decisions related to planned non-treatment. We discuss results in the light of accounts of best interests in the medical ethics literature.
We conducted 39 qualitative interviews, exploring decision making in the paediatric intensive care unit, with doctors, nurses, clinical ethics committee members and parents whose children had a range of health outcomes. Interviews were audio-recorded and analysed thematically.
Parents and clinicians indicated differences in their approaches to deciding the child's best interests. These were reconciled when parents responded positively to clinicians' efforts to help parents agree with the clinicians' view of the child's best interests. Notably, protracted disagreements about a child's best interests in non-treatment decisions were resolved when parents' views were affected by witnessing their child's physical deterioration. Negotiation was the norm and clinicians believed avoiding the courts was desirable.
Sensitivity to the long-term interests of parents of children with life-limiting conditions is defensible but must be exercised proportionately. Current approaches emphasise negotiation but offer few alternatives when decisions are at an impasse. In such situations, the instrumental role played by a child's deterioration and avoidance of the courts risks giving insufficient weight to the child's interests. New approaches to decision making are needed.
在英国儿科医疗实践中，英国法律要求父母与临床医生就儿童的“最大利益”达成一致，若无法达成一致，则由法院裁决。法院干预很少见，且最大利益的概念模糊不清。我们报告了一项定性研究，探讨最大利益标准在实际操作中的运行情况，特别是与计划性非治疗相关的决策。我们根据医学伦理文献中关于最大利益的论述来讨论研究结果。
我们进行了39次定性访谈，采访了儿科重症监护病房的医生、护士、临床伦理委员会成员以及孩子有不同健康状况的父母，探讨决策制定情况。访谈进行了录音并进行主题分析。
父母和临床医生表示在决定儿童最大利益的方法上存在差异。当父母对临床医生为帮助他们认同临床医生对儿童最大利益的看法所做的努力做出积极回应时，这些差异得到了调和。值得注意的是，当父母目睹孩子身体状况恶化从而影响其观点时，关于儿童非治疗决策中最大利益的长期分歧得到了解决。协商是常态，临床医生认为避免诉诸法院是可取的。
对患有危及生命疾病儿童的父母的长期利益保持敏感是合理的，但必须适度行使。当前的方法强调协商，但在决策陷入僵局时几乎没有提供其他选择。在这种情况下，孩子病情恶化所起的工具性作用以及对法院的回避可能会导致对孩子利益的重视不足。需要新的决策方法。
