Child euthanasia: Too hard to live, too young to die

The decision in Belgium to allow euthanasia for sick children raises questions about the fitness of young people to make life-and-death decisions, and about medical ethics

Ten years on, I have not forgotten the story of Danny Bond. He had been ill from birth with a terrible bowel disease and had been in and out of hospital all his life. As his body had grown, so had the pain. By the end it was excruciating.

It was when he was 13 that he started talking about wanting to die. One night, in the early hours, the peace of the sleeping house was shattered by his scream that he had had enough. "It was chilling," his father Mike recalled on television a decade ago. "I can hear it now if I close my eyes. It left an indelible print on me."

Danny began to talk about killing himself. His parents tried to distract him from the idea. "I tried everything," his mother Beverley recalled. "I tried to cheer him up. I tried blackmail and bribing him. I tried to give him a focus and some goals." But none of it worked.

Three times he tried to end his own life. Three times his mum resuscitated him and called for an ambulance. It made Danny angry. After the third attempt he told his mother she had let him down. "You have really got to learn to walk out of the door," he told her.

Soon after his 21st birthday, Danny went downhill rapidly. He was taken into hospital. "I want to die," he told his parents, "and you have to help me." But Mike was a policeman and knew assisting suicide was a crime. Danny decided he would starve himself to death. – the only way he could die legally.

His doctors were unhappy. So Danny charged his parents to sit by his bed to ensure that no one gave him treatment he did not want.

"All he wanted was the privilege to be given an injection that would kill him instantly in seconds, and I had to watch him die in days," she said. But it was the only way Danny could become the author of his own terrible destiny.

A dilemma is, by definition, a choice between two unpalatable alternatives. The Belgian parliament last week responded to cases like Danny's by making it legal for any child, at any age, to ask to be killed – if they are "close to death", experiencing "unbearable suffering" and can show they truly "discern" the consequences of what they are asking. The politicians rejected amendments to extend euthanasia to mentally-ill children. But the main proposal was passed with a two-thirds majority.

Yet there were those in Belgium with equally compelling arguments against the decision. Some 160 Belgian paediatricians signed an open letter arguing that there was no urgent need for the law. Medicine was capable of relieving the worst suffering of terminally-ill children. There, as in the UK, the principle of "double effect" allows doctors to administer a fatal dose of analgesics so long as the prime intent is to relieve pain rather than to kill. There was no objective method for determining whether a child could really discern the full import of asking to die. Doctors' assessments would be largely subjective and vulnerable to influence and pressure.

And there was a counter-story to that of Danny Bond. Two years ago, a Belgian chemistry lecturer, Dr Tom Mortier, got a message to call a Brussels hospital. His mother was dead. She had been suffering from depression. Three months earlier she had sent her son an email saying she had asked for euthanasia. Though medical killing has been legal in Brussels since 2002 – and it is not restricted to those who are terminally ill – Tom assumed the doctors would not allow it simply because she was depressed. He was wrong.

Twelve years on, he is still outraged. He doesn't accept that his mother had a right to die nor that the doctors had a right to facilitate that. "Performing euthanasia is unethical," he said. "It's killing your patients, and now they're promoting it as the ultimate form of love. What have we become?" Euthanasia is not a private choice, he says: parents have a duty to children, and doctors to patients, because a society is a network of inviolable mutual trust. As for euthanasia for children: "It's insanity."

Killing offspring has had a bad name since Agamemnon sacrificed Iphigenia in mythic ancient Greece, but child euthanasia in modern times is most associated with the selection by paediatricians of 5,000 "defective" children for death in Nazi Germany as the precursor to the Holocaust. The "annual removal" of the 800,000 feeblest of every million babies, said Hitler in 1929, meant "an increase in the power of the nation not a weakening".

What was once justified in the name of the eugenics of Nazi social Darwinism is now to be done in modern Belgium on the grounds of compassion and freedom of choice. The immediate precedent is the Groningen Protocol in the Netherlands, a legal declaration that doctors will not be prosecuted for ending the life of anyone aged over 12 if there is "hopeless and unbearable suffering", the consent of parents, proper medical consultation, and "careful execution of the termination".

Its critics have advanced arguments that have purchase on the wider issue. How is unbearable suffering defined? In practice, the code covers any child with spina bifida, though many sufferers lead fulfilled, productive lives. What level of pain can be assumed in one too young to communicate? What of older children who deem their suffering to be unbearable first thing, but bearable later in the day. And what if parents disagree?

The idea of scientific precision, one critical doctor says, is "a mirage of clinical accuracy that borders on hubris". And the idea that a doctor can take life destroys something fundamental in the necessary foundation of trust between doctors and patients more generally. One person's choice thus harms all society. How, then, are we to arbitrate between these two irreconcilable visions?

Perhaps by asking collateral questions. Can a code of euthanasia be drawn up which is immune from dishonest emotions or manipulative abuse? If patient choice is the determining factor, why should euthanasia not be extended beyond the terminally ill? But if compassion is the key determinant why should we not apply it to patients who have not requested it?

Why should a teenager, considered too young to smoke, drink alcohol, have sex, drive, join the army or vote, be considered capable of making a decision on life or death? Adolescence, in particular, is a time of learning through high risk-taking and poor judgement, when perspectives are skewed, as the tragic suicides of teenagers subjected to cyber-bullying have shown.

In philosophy, the "slippery slope" argument is a logical fallacy, but in human psychology and practical politics, it makes some sense. In 2012, Belgium recorded 1,432 cases of euthanasia, up by 25 per cent from 2011. In the Netherlands, with much higher per capita rates of legalised killing, psychiatric euthanasia more than trebled between 2012 and 2013.

So long as there are so many unanswered questions – and when numbers are growing so rapidly – it is probably the precautionary principle which should be applied. Belgium's decision to introduce euthanasia for children is, at the very least, extremely premature. It is also therefore very unwise.

Paul Vallely is visiting professor of public ethics at the University of Chester

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