Emotional Experts:

Parents' Views on End-of-Life Decisions for Preterm Infants in Iceland



In this article, I examine how parents of infants with birth weight of 1,000 grams or less in Iceland relate to the questions whether and when treatment for a preterm infant may be withdrawn, and who should make such a decision.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.