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Paediatricians call for nationwide protocol for the ending of life of unbearably and incureably suffering newborns

10 December 2004

Paediatricians at academic hospitals in the Netherlands have called for the formation of a national committee to draw up a nationwide protocol for life ending treatment for newborns who are so ill and suffering so severely that they have no prospect of a future. The issue expressly relates to exceptional cases, around 600 newborns a year worldwide. 

According to A.A.E. Verhagen, who launched the initiative: “It’s time to be honest about the unbearable suffering endured by newborns with no hope of a future. All over the world doctors end lives discretely out of compassion, without any kind of regulation. Worldwide, the US included, many deaths among newborns are based on end of life decisions, after physicians reached the conclusion that there was no quality of life. This is happening more and more frequently.”

The call to set up a national committee has been prompted by the discussions that erupted worldwide after paediatricians from Groningen University Hospital announced that they had drawn up a protocol for such cases in association with the Dutch public prosecutors, called Board of Procurators General.

Verhagen: “A lot of disquiet has arisen around this issue, especially when the Vatican expressed concern. But these children face a life of agonizing pain. For example, we’re talking about newborns with hydrocephalus and no brain. Another example may be a child with spina bifida with a sack of brain fluid attached where all the nerves are floating around. This child is barely able to breathe, and would have to undergo at least sixty operations in the course of a year to temporarily alleviate its problems. These operations would not ease the pain. Moreover, the child would suffer such unbearable pain that it has to be constantly anaesthetised. The parents watch this in tears and beg the doctor to bring an end to such suffering.”

Studies have shown that paediatricians worldwide are, in exceptional cases like this, in favour of deliberate ending of life. In France 74% believe that it should be acceptable in certain circumstances. The figure for the Netherlands is 72%.

The Groningen Protocol has five criteria: the suffering must be so severe that the newborn has no prospects of a future; there is no possibility of a cure or alleviation with medication or surgery; the parents must always give their consent; a second opinion must be provided by an independent doctor who has not been involved with the child’s treatment; and the deliberate ending of life must be meticulously carried out with the emphasis on aftercare.

Verhagen: “This is a subject that nobody likes to acknowledge, let alone discuss. But it is in the interest of newborns who have to endure unbearable suffering that we draw up a nationwide protocol that allows each paediatrician to treat this delicate question with due care, knowing that he followed the criteria.”


Mrs J. Kruse