Opinion

The world needs to talk about child euthanasia

24 February 2014 by Rachel Nuwer
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Belgium has become the first nation to legalise euthanasia for children of any age. Other countries need to face the issue too

EUTHANISING an infant is not technically difficult. Intravenous sedatives are used to silence the brain, followed by a pain medication such as morphine. This is often enough to trigger respiratory arrest and death, but if not, neuromuscular blockers are added, and the child dies. The process takes 5 to 10 minutes.

"This is strange to say, but it happens in a peaceful manner," says Eduard Verhagen, who is head of the Department of Pediatrics at the University Medical Centre in Groningen, the Netherlands, and also a lawyer.

Neighbouring Belgium has just become the first country to legislate in favour of child euthanasia at any age. However, there is a partial precedent. In 2005, the Netherlands recognised the Groningen protocol, a set of criteria outlining the circumstances under which ending the life of an infant under the age of 1 is permissible.

Under those guidelines – which were written by Verhagen – euthanasia can only be undertaken if an infant's diagnosis and prognosis are certain and confirmed by an independent doctor; there is evidence of hopeless and unbearable suffering; both parents give their consent; the procedure follows medical standards; and all details are documented.

Before this, there had been an estimated 10 to 15 cases of infant euthanasia in the Netherlands each year between 1997 and 2004, but only about a fifth were reported. Doctors did not want to risk a murder charge. Now, while euthanasia remains technically illegal for infants in the Netherlands, doctors are not prosecuted so long as the protocol's criteria are met.

Opponents argued that this would lead to a slippery slope of infant euthanasia. The opposite happened. Since 2005, there have been only two cases in the Netherlands. Both involved babies with lethal epidermolysis bullosa, a disease of the connective tissues.

This decline in euthanasia correlates with an increase in late-term abortions. Previously, most euthanasia cases involved babies born with severe to extreme spina bifida – a congenital disorder in which some of the vertebrae do not fully form. Doctors found that surgery was not possible and that the child would suffer constantly. In 2007, the Netherlands began offering free ultrasound scans at 20 weeks of pregnancy, at which point spina bifida can be detected. Mothers whose babies are diagnosed with the disease can then decide whether to terminate the pregnancy.

This is not necessarily the best course for everyone in this situation. Only the most extreme cases of spina bifida are deemed hopeless, and it is impossible for doctors to precisely gauge severity in utero. Having infant euthanasia as an option allows mothers to be sure that their baby has no chance of survival before ending its life. But, as Verhagen says, in practice most in this situation decide not to take any chances and terminate the pregnancy.

The means of ending a baby's life are subject to debate. Recently, the line between proactive palliative care – applying pain medications that may hasten death – and euthanasia has become more blurred. In some countries,including the US, food and fluid may be withdrawn in some circumstances.

But palliative care practices do not necessarily result in a quick death for a terminally ill infant. Death by dehydration and starvation can take days or weeks and it is impossible to guarantee that the child – even heavily medicated – does not suffer. Moreover, no one doubts that death is the outcome of withholding life-sustaining care and support. Rather than draw out the inevitable, would it not be less cruel to swiftly end that life, alleviating all risk of unnecessary suffering?

Belgium and the Netherlands have chosen to face this dilemma directly. There are anecdotes – stories that come up in quiet, informal conversations between professionals – of infant euthanasia in other countries, but in most places publicly admitting to it is tantamount to admitting murder. Grief-stricken parents faced with the impending death of their baby and who do not happen to live in the Netherlands or Belgium can do little more than stand by and try to make their child as comfortable as possible as death approaches.

Of course, not every country is as progressive. In the Netherlands, there is a culture of consensus-finding and frank discussion. "Some of us wish to at least have a vote in how we die." That's how Verhagen puts it. Eventually, the conversation extended to the right of parents to choose how their baby will die.

Even there, though, euthanasia is not an easy subject on which to reach a consensus. The Netherlands debated it for more than 20 years, and there are further debates to be had. Unlike in Belgium, Dutch children aged between 1 and 12 cannot be euthanised under any circumstances, although Verhagen and others are working to change that.

There will always be those who – due to religious or personal beliefs – oppose ending a human life. In the US, for example, reaching a federal consensus on the subject of infant euthanasia seems unlikely. On the other hand, progressive states such as Oregon might someday implement their own laws on it, much as they have for assisted suicide in adults. Whether this will ever come to pass remains to be seen. As Verhagen wrote in The New England Journal of Medicine, "This approach suits our legal and social culture, but it is unclear to what extent it would be transferable to other countries."

For most parts of the world, a refusal to even discuss the subject dominates. As unpleasant as it is, parents, physicians, hospitals and nations need to confront this issue as a matter of responsibility towards both infants born into hopeless circumstances and their families.

This article will appear in print under the headline "Mercy for all?"

Rachel Nuwer is a science writer based in New York