Center for Biomedical Ethics and Health Policy, Baylor College of Medicine, Houston, Texas;
Houston Methodist Hospital, Houston, Texas.
Pediatrics. 2020 Mar;145(3). doi: 10.1542/peds.2019-2319. Epub 2020 Feb 19.
When parents or guardians hope for a miracle for their child who is critically ill, ethical and professional challenges can arise. Often, although not always, the parent or guardian's hope for a miracle entails a request for continued life-sustaining interventions. Striking a balance between the pediatrician's conception of good medicine and the parent or guardian's authority requires a response that is sensitive, practical, and ethically sound. In this article, we recommend 3 cumulative steps that promote such a response. First, we recommend ways of exploring essential issues through open inquiry, interdisciplinary dialogue, and self-reflection. As part of this exploration, pediatricians will discover that parents or guardians often have unique ideas about what a miracle might be for their child. The second step includes analyzing this diversity and seeking understanding. We classify the hope for a miracle into 3 distinct categories: integrated, seeking, and adaptive. After the pediatrician has categorized the parent or guardian's hope, they can consider specific recommendations. We detail context-specific responses for each kind of hope. By attending to these nuances, not only will the parent or guardian's perspective be heard but also the pediatrician's recommendation can strike a balance between advocating for their conception of good medicine and respecting the parent or guardian's beliefs.
当父母或监护人希望身患重病的孩子出现奇迹时，可能会出现伦理和专业方面的挑战。通常情况下（尽管并非总是如此），父母或监护人对奇迹的期待意味着他们请求继续进行维持生命的干预措施。在儿科医生对医学的理解和父母或监护人的权威之间取得平衡，需要做出敏感、实际和符合伦理的回应。在本文中，我们推荐了 3 个累积步骤，以促进这种回应。首先，我们建议通过开放式探究、跨学科对话和自我反思来探索基本问题的方法。在这种探索过程中，儿科医生将发现父母或监护人通常对他们孩子的奇迹可能是什么有独特的想法。第二步包括分析这种多样性并寻求理解。我们将对奇迹的期待分为 3 种不同的类别：综合型、寻求型和适应型。儿科医生对父母或监护人的期待进行分类后，就可以考虑具体的建议。我们详细说明了每种期待的具体情境下的回应。通过关注这些细微差别，不仅可以倾听父母或监护人的观点，而且儿科医生的建议也可以在倡导他们对医学的理解和尊重父母或监护人的信仰之间取得平衡。
