Smash hit

It emphasises that life can be ended only in cases involving “unbearable suffering”, with parental consent and after consultation with other physicians.

“If a child is untreatably ill,” Verhagen explained, “there can be horrendous suffering that makes the last few days or weeks of this child’s life unbearable. Now the question is: are you going to leave the child like that or are you going to prevent that suffering?” He went on: “Does the child have to sit it out until the end? We think that the answer is no. There can be circumstances where, under very strict conditions, if all the requirements are fulfilled, active ending of life can be an option — but only in cases of untreatable disease and unbearable suffering.”

A visit to Groningen’s intensive care unit for children last week demonstrated how rare it is for infants, in an age of extremely sophisticated, high-tech medical treatment, to experience extreme pain. Even so, life and death decisions are made by doctors every day.

Consider Maryline, only a few hours old, who lay in an incubator on Wednesday afternoon after being born prematurely. With feet smaller than adult thumbs, she was breathing through a respirator as doctors struggled to get her little lungs working on their own.

“At some point,” said Verhagen, observing this battle for life, “we will have to decide whether it is pointless from a medical point of view and whether we should not prolong treatment.”

This, he agreed, was a form of “passive euthanasia” practised in countries all over the world. But from a moral point of view, he argued, it was no different from administering a lethal dose of morphine, since the result of withdrawing treatment would also eventually be death.

“Is there any difference between watching someone drowning without doing anything and pushing them into the lake?” he asked.

Verhagen, a 42-year-old father of three who has spent years tending sick children in underdeveloped countries, became a paediatrician with the intention of saving children’s lives, not ending them. Then along came a case that changed his entire way of thinking.

Sanne had a severe form of Hallopeau-Siemens syndrome, which meant that her skin would detach itself from her body if anyone touched it. The membranes inside her mouth and oesophagus fell away whenever they tried to feed her through a tube.

To experts, it is obvious when babies are in pain, and not only because of the type of shrieking. The way they clench their fists is another indicator. This was a child in great pain but pain relievers seemed to make no difference; and every time nurses replaced her bandages a little more of her skin fell off. She came to resemble a mummy. Verhagen did not know what to do.

Her parents demanded an end to her suffering and, for the first time in his career, Verhagen considered euthanasia. Fearing prosecution, however, he sent the child home, where she died of pneumonia six months later.

Verhagen believed he had let down the girl and her parents by allowing such suffering. “We were very unhappy,” he said. He and his colleagues began liaising with the local prosecutor, even inviting him to come on hospital rounds to familiarise himself with some of the issues involved.

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