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将儿童最佳利益标准与共同决策相结合——基于定性研究引入共同最优方法

Combining the best interest standard with shared decision-making in paediatrics-introducing the shared optimum approach based on a qualitative study.

作者信息

Streuli Jürg Caspar, Anderson James, Alef-Defoe Sierra, Bergsträsser Eva, Jucker Jovana, Meyer Stephanie, Chaksad-Weiland Sophia, Vayena Effy

机构信息

Department of Bioethics, The Hospital for Sick Children, Toronto, Canada.

Institute of Biomedical Ethics and History, University of Zurich, Winterthurerstrasse 30, 8006, Zurich, Switzerland.

出版信息

Eur J Pediatr. 2021 Mar;180(3):759-766. doi: 10.1007/s00431-020-03756-8. Epub 2020 Aug 18.

Abstract

Paediatric decision-making is the art of respecting the interests of child and family with due regard for evidence, values and beliefs, reconciled using two important but potentially conflicting concepts: best interest standard (BIS) and shared decision-making (SD-M). We combine qualitative research, our own data and the normative framework of the United Nations Convention on the Rights of Children (UNCRC) to revisit current theoretical debate on the interrelationship of BIS and SD-M. Three cohorts of child, parent and health care professional interviewees (N = 47) from Switzerland and the United States considered SD-M an essential part of the BIS. Their responses combined with the UNCRC text to generate a coherent framework which we term the shared optimum approach (SOA) combining BIS and SD-M. The SOA separates different tasks (limiting harm, showing respect, defining choices and implementing plans) into distinct dimensions and steps, based on the principles of participation, provision and protection. The results of our empirical study call into question reductive approaches to the BIS, as well as other stand-alone decision-making concepts such as the harm principle or zone of parental discretion.Conclusion: Our empirical study shows that the BIS includes a well-founded harm threshold combined with contextual information based on SD-M. We propose reconciling BIS and SD-M within the SOA as we believe this will improve paediatric decision-making. What is Known: • Parents have wide discretion in deciding for their child in everyday life, while far-reaching treatment decisions should align with the child's best interest. • Shared decision-making harbours potential conflict between parental authority and a child's best interest. What is New: • The best interest standard should not be used narrowly as a way of saying "Yes" or "No" to a specific action, but rather in a coherent framework and process which we term the shared optimum approach. • By supporting this child-centred and family-oriented process, shared decision-making becomes crucial in implementing the best interest standard.

摘要

儿科决策是一门艺术,即在充分考虑证据、价值观和信仰的基础上,尊重儿童及其家庭的利益,并运用两个重要但可能相互冲突的概念进行协调:最佳利益标准(BIS)和共同决策(SD-M)。我们结合定性研究、自身数据以及《联合国儿童权利公约》(UNCRC)的规范框架,重新审视当前关于BIS和SD-M相互关系的理论辩论。来自瑞士和美国的三组儿童、家长和医疗保健专业受访者(N = 47)认为SD-M是BIS的重要组成部分。他们的回答与UNCRC文本相结合,形成了一个连贯的框架,我们称之为结合BIS和SD-M的共享最优方法(SOA)。SOA基于参与、提供和保护原则,将不同任务(限制伤害、表示尊重、定义选择和实施计划)划分为不同维度和步骤。我们实证研究的结果对BIS的简化方法以及其他独立的决策概念(如伤害原则或家长自由裁量权范围)提出了质疑。结论:我们的实证研究表明,BIS包括一个有充分依据的伤害阈值,并结合基于SD-M的背景信息。我们建议在SOA框架内协调BIS和SD-M,因为我们相信这将改善儿科决策。已知信息:• 父母在日常生活中为孩子做决定时有广泛的自由裁量权,而影响深远的治疗决策应符合孩子的最佳利益。• 共同决策在家长权威和孩子的最佳利益之间存在潜在冲突。新发现:• 最佳利益标准不应狭隘地用作对特定行动说“是”或“否”的方式,而应在一个连贯的框架和过程中使用,我们称之为共享最优方法。• 通过支持这个以儿童为中心、以家庭为导向的过程,共同决策在实施最佳利益标准方面变得至关重要。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/9bf1/7886834/8fda05ea040d/431_2020_3756_Fig1_HTML.jpg

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