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父母在面对可能危及生命的胎儿诊断时所做的决定以及围产期姑息治疗的重要性。

Decisions Parents Make When Faced With Potentially Life-Limiting Fetal Diagnoses and the Importance of Perinatal Palliative Care.

作者信息

Marc-Aurele Krishelle L

机构信息

Division of Neonatology, Department of Pediatrics, University of California, San Diego, San Diego, CA, United States.

出版信息

Front Pediatr. 2020 Oct 22;8:574556. doi: 10.3389/fped.2020.574556. eCollection 2020.

Abstract

When parents face a potentially life-limiting fetal diagnosis in pregnancy, they then have a series of decisions to make. These include confirmatory testing, termination, and additional choices if they choose to continue the pregnancy. A perinatal palliative team provides a safe, compassionate, and caring space for parents to process their emotions and discuss their values. In a shared decision-making model, the team explores how a family's faith, experiences, values, and perspectives shape the goals for care. For some families, terminating a pregnancy for any reason conflicts with their faith or values and pursuing life prolonging treatments in order to give their baby the best chances for survival is the most important. For others, having a postnatal confirmatory diagnosis of a life limiting or serious medical condition gives them the assurance they need to allow their child a natural death. Others want care to be comfort-focused in order to maximize the time they have to be together as a family. Through this journey, a perinatal palliative team can provide the support and encouragement for families to express their goals and wishes, as well as find meaning and hope.

摘要

当父母在孕期面临胎儿可能患有危及生命疾病的诊断时,他们需要做出一系列决定。这些决定包括进行确诊检查、终止妊娠,以及如果他们选择继续妊娠的其他选择。围产期姑息治疗团队为父母提供一个安全、富有同情心且关怀备至的空间,让他们处理自己的情绪并讨论自己的价值观。在共同决策模式中,该团队探讨一个家庭的信仰、经历、价值观和观点如何塑造护理目标。对于一些家庭来说,出于任何原因终止妊娠都与他们的信仰或价值观相冲突,而寻求延长生命的治疗以便给他们的宝宝最大的生存机会是最重要的。对于另一些家庭来说,产后确诊患有危及生命或严重的疾病能让他们获得所需的保证,从而让孩子自然死亡。还有一些家庭希望护理以舒适为重点,以便最大限度地增加他们作为一家人在一起的时间。在这个过程中,围产期姑息治疗团队可以为家庭提供支持和鼓励,让他们表达自己的目标和愿望,以及找到意义和希望。

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