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生命伦理学、临床伦理委员会与儿童对心脏手术的同意

Living bioethics, clinical ethics committees and children's consent to heart surgery.

作者信息

Alderson Priscilla, Bowman Deborah, Brierley Joe, J Elliott Martin, Kazmi Romana, Mendizabal-Espinosa Rosa, Montgomery Jonathan, Sutcliffe Katy, Wellesley Hugo

机构信息

Social Research Institute, University College London, UK.

Medical Ethics, St George's Hospital, UK.

出版信息

Clin Ethics. 2022 Sep;17(3):272-281. doi: 10.1177/14777509211034145. Epub 2021 Jul 30.

Abstract

This discussion paper considers how seldom recognised theories influence clinical ethics committees. A companion paper examined four major theories in social science: positivism, interpretivism, critical theory and functionalism, which can encourage legalistic ethics theories or practical living bioethics, which aims for theory-practice congruence. This paper develops the legalistic or living bioethics themes by relating the four theories to clinical ethics committee members' reported aims and practices and approaches towards efficiency, power, intimidation, justice, equality and children's interests and rights. Different approaches to framing ethical questions are also considered. Being aware of the four theories' influence can help when seeking to understand and possibly change clinical ethics committee routines. The paper is not a research report but is informed by a recent study in two London paediatric cardiac units. Forty-five practitioners and related experts were interviewed, including eight members of ethics committees, about the work of informing, preparing and supporting families during the extended process of consent to children's elective heart surgery. The mosaic of multidisciplinary teamwork is reported in a series of papers about each profession, including this one on bioethics and law and clinical ethics committees' influence on clinical practice. The qualitative social research was funded by the British Heart Foundation, in order that more may be known about the perioperative views and needs of all concerned. Questions included how disputes can be avoided, how high ethical standards and respectful cooperation between staff and families can be encouraged, and how minors' consent or refusal may be respected, with the support of clinical ethics committees.

摘要

本讨论文件探讨鲜为人知的理论如何影响临床伦理委员会。一篇相关论文研究了社会科学中的四种主要理论:实证主义、解释主义、批判理论和功能主义,这些理论可能会催生法律主义伦理理论或实践生活生物伦理学,后者旨在实现理论与实践的一致性。本文通过将这四种理论与临床伦理委员会成员报告的目标、实践以及在效率、权力、恐吓、正义、平等以及儿童利益和权利方面的方法联系起来,进一步阐述法律主义或生活生物伦理学的主题。文中还考虑了构建伦理问题的不同方法。了解这四种理论的影响有助于理解并可能改变临床伦理委员会的常规工作。本文并非研究报告,但受到伦敦两家儿科心脏科近期一项研究的启发。研究人员就儿童择期心脏手术同意书签署这一漫长过程中为家庭提供信息、准备工作和支持的情况,采访了45名从业者及相关专家,其中包括八名伦理委员会成员。关于每个专业的一系列论文报道了多学科团队合作的全貌,包括这篇关于生物伦理学与法律以及临床伦理委员会对临床实践影响的论文。这项定性社会研究由英国心脏基金会资助,目的是更多地了解所有相关方在围手术期的观点和需求。问题包括如何避免纠纷、如何鼓励工作人员与家庭之间保持高道德标准和相互尊重的合作,以及在临床伦理委员会的支持下如何尊重未成年人的同意或拒绝。

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本文引用的文献

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Living bioethics, theories and children's consent to heart surgery.生命伦理学、理论与儿童对心脏手术的同意
Clin Ethics. 2023 Dec;18(4):418-426. doi: 10.1177/14777509221091086. Epub 2022 Apr 7.
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Nurs Ethics. 2019 Nov-Dec;26(7-8):2098-2112. doi: 10.1177/0969733019829857. Epub 2019 Apr 1.
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Parental involvement in neonatal critical care decision-making.父母参与新生儿重症监护决策。
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