Perinatal bioethics: euthanasia or end-of-life decisions? Analysis of the Groningen Protocol

Abstract

The so called "Groningen Protocol" was conceived as a framework to discuss the euthanasia in neonates. Originally, it presents three groups of babies who might be candidates to this option. We analyzed the protocol in its original context and that of the Dutch society in which it was created. The analysis started with a careful reading of the protocol in both English and Dutch versions, translated later into Spanish. The medical and nursing staff participated in discussing it. A final consensus was reached. The Institutional Ethics Committee at our hospital discussed it freely and made recommendations for its application as a guideline to honestly discuss with parents the clinical condition of their babies, without permitting the option included literally in the word euthanasia. We selected four extremely ill infants. Their parents were interviewed at least twice daily: three stages were identified: the initial one of promoting all possible treatments; a second one of guarded and cautious request for the staff to evaluate "suffering", and a last one where requests were made to reduce therapeutic efforts to provide dignified death. A week after the death of their infants, they were presented with the facts of the protocol and the limits of our legal system. In all four cases the parents suggested that they would have chosen ending the life of their infants, in order to avoid them undue suffering. They clearly pointed out that this option emerged as a viable one to them once the ultimate outcome was evident. The protocol must not be viewed as a guideline for euthanasia in newborns, but rather as a mean to discuss the critical condition of an infant with the parents. Its direct implementation in our setting remains difficult. As a clear limitation for its overall application remains the definition of what is considered "unbearable suffering" in newborns, and how to certify when the infant has "no prospect". We emphasize the benefits of securing the help of the Ethics Committee and of "second opinions" from authorized physicians.