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产前姑息治疗中的希望多元化。

Hope pluralism in antenatal palliative care.

作者信息

Bertaud Sophie, Suleman Mehrunisha, Wilkinson Dominic

机构信息

Oxford Uehiro Centre for Practical Ethics, University of Oxford, Oxford, UK

Louis Dundas Centre for Children's Palliative Care, Great Ormond Street Hospital for Children NHS Foundation Trust, London, UK.

出版信息

J Med Ethics. 2025 Jul 23;51(8):521-525. doi: 10.1136/jme-2024-110120.

Abstract

When parents face the distressing news during pregnancy that their baby is affected by a serious medical condition that will likely lead to the baby's death before or soon after birth, they experience a range of complex emotions. Perhaps paradoxically, one common response is that of hope. Navigating such hope in antenatal interactions with parents can be difficult for healthcare professionals. That can stem from a desire to accurately communicate prognostic information and a fear of conveying 'false hope' to families. In this paper, we examine the role that hope plays when parents and healthcare professionals are grappling with a confirmed antenatal diagnosis of a life-limiting condition. We assess what it means to hope in this context and consider the different types of hopes held by both parents and healthcare professionals as well as why hopeful thinking might be helpful and not harmful. We propose 'hope pluralism' as a concept that might allow healthcare professionals to accommodate a multitude of parental and professional hopes, even where these conflict. Finally, we offer some practical suggestions for how professionals should evaluate and respond to hope in situations that might (from the outside) appear hopeless.

摘要

当父母在孕期面临令人痛苦的消息,即他们的宝宝患有严重的疾病,很可能在出生前或出生后不久就会死亡时,他们会经历一系列复杂的情绪。也许自相矛盾的是,一种常见的反应是抱有希望。对于医护人员来说,在产前与父母的互动中应对这种希望可能会很困难。这可能源于准确传达预后信息的愿望以及向家庭传达“虚假希望”的恐惧。在本文中,我们探讨了在父母和医护人员应对已确诊的产前生命有限疾病诊断时,希望所起的作用。我们评估在这种情况下抱有希望意味着什么,并考虑父母和医护人员所抱有的不同类型的希望,以及为什么抱有希望的想法可能是有益而非有害的。我们提出“希望多元主义”这一概念,它或许能让医护人员接纳多种父母和专业人员的希望,即使这些希望相互冲突。最后,我们针对专业人员在(从外部看)可能显得毫无希望的情况下应如何评估和应对希望提供了一些实用建议。

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