Einarsdóttir Jónína
Department of Anthropology, Faculty of Social and Human Sciences, University of Iceland, Reykjavik.
Med Anthropol Q. 2009 Mar;23(1):34-50. doi: 10.1111/j.1548-1387.2009.01036.x.
In this article, I examine how parents of infants with birth weight of 1000 grams or less in Iceland relate to the questions whether and when treatment for a preterm infant may be withdrawn, and who should make such a decision. Almost all the parents agreed there are categories of infants who should be allowed to die and parents should have a say in such a decision. Inability to take part in human communication was most commonly mentioned as a valid criterion for withdrawal of treatment. There was more disagreement about parents' right to unilaterally demand withdrawal. Ethical dilemmas and their resolutions are embedded in social context where images of suffering and disability and establishment of medical facts are central. Parents claimed their right to participate in treatment decisions as emotional experts; the child was theirs and they had to live with the outcome. Their hope in cure was based on faith in medical science and high confidence in the staff of the NICU. Parents also stressed the infant's will to live and referred to alternative knowledge, for instance, derived from "evidence based" spiritism or an interpretation of a dream.
在本文中，我探讨了冰岛出生体重1000克及以下的婴儿的父母如何看待以下问题：对于早产儿，是否以及何时可以停止治疗，以及该由谁来做出这样的决定。几乎所有父母都认为，存在一些类别的婴儿应该被允许死亡，并且父母应该在这样的决定中有发言权。无法参与人际交流是最常被提及的停止治疗的合理标准。对于父母单方面要求停止治疗的权利，存在更多分歧。伦理困境及其解决方案嵌入在社会背景中，其中痛苦和残疾的形象以及医学事实的确定是核心。父母声称他们作为情感专家有权参与治疗决策；孩子是他们的，他们必须承担结果。他们对治愈的希望基于对医学科学的信念以及对新生儿重症监护病房工作人员的高度信任。父母还强调了婴儿的求生意愿，并提及了其他知识来源，例如源自“基于证据”的招魂术或对一个梦的解读。
