Marc and Eddy Verbessem were 45-year-old cobblers from the Belgian village of Putte. They were deaf, going blind, and they turned to a doctor to end their lives.
Their controversial action in January has fuelled renewed debate over legalized euthanasia in Belgium, coming days before the national parliament began a discussion on extending the euthanasia law to include terminally ill children and people with dementia.
It's a polarizing moral and ethical issue with no easy answers, and parliament continues to grapple with how to handle amendments to the law.
In Belgium it’s not a system of assisted suicide — a doctor handing over a pill. It is death within minutes, with a doctor administering an injection.
More than a decade into legalized euthanasia, 80 per cent of Belgians approve of the existing law.
But even to a leading euthanasia practitioner like Marc van Hoey, president of Right to Die Flanders, the Verbessem case was unusual.
The law makes euthanasia an option for patients whose death is imminent and for those with a chronic degenerative illness. One of the Verbessem brothers did have breathing problems and could only sleep sitting up. The other had had surgery on his spine and had difficulty walking. But their conditions were not terminal.
Still, for the last year of their lives they sent their doctor a letter every week asking for euthanasia. They stopped eating.
“It was clear that if there was no euthanasia they would rob themselves of their own lives,” said their doctor, David Dufour.
“They were so close to each that one decided not to live without the other,” adds van Hoey. “So they used this law as saying 'I’m going to become worse. I want to stop before I will end up in that state.'"
Critics say the decision to help the brothers end their lives was beyond the scope of existing legislation.
“It was completely outside the framework of the law in Belgium," says an enraged Carine Brochier. "The doctor should be in jail.”
Brochier works for the European Institute of Bioethics in Brussels, and her office is in a Catholic church. She is concerned about the expanding use of euthanasia by doctors.
“If all the people who have handicaps ask for euthanasia, are we going to kill them?" she asks.
Meanwhile, filmmaker Alexander Decommere, who has worked on two films about euthanasia in Belgium, says the case is taking attention away from the real issues at the core of the euthanasia debate.
“It’s not Hitler taking out the handicapped because he thinks they’re worthless human beings," he says. "It shouldn’t be about sensationalizing these individual cases. It should be about making everyone understand what euthanasia is all about.”
The case for euthanasia
Prior to the legalization of euthanasia in Belgium, doctors practiced "assisted dying." Everyone knew it was happening and turned a blind eye. There were no medical protocols or laws regulating the procedure.
Today there are 300 doctors in Flanders who are Life Ending Consultants.
Marc Van Hoey is one of them, and he says he has someone in his office requesting euthanasia nearly every week.
“It’s not the kind of thing you say — ‘I’m sick. Tomorrow I want to die,'" Van Hoey points out, adding that people typically don't come to him on a whim. "Even if you have a terminal disease, it’s not something that comes out of the sky like the snow.”
There were 1,232 euthanasia deaths in 2012 in Belgium. About 75 per cent were people in their seventies. There were more men than women, and 85 per cent had terminal cancer.
The number of reported euthanasia deaths has gone up steadily since the law came into effect. At the same time, the number of unofficial, often unrequested, euthanasia deaths has plummeted.
Brochier says the real battle is between euthanasia and palliative care.
"I don’t think that a doctor would spend the time helping a person not to suffer, if the doctor can easily give euthanasia to somebody," she says.
The European Journal on Palliative care reported that, contrary to Brochier's fears, there are indications that the general quality of palliative care in Belgium has improved.
In fact, in Belgium, euthanasia and palliative care are intertwined in many facilities.
Pushing the boundaries
But new cases are clearly testing the boundaries of the country's euthanasia law.
For example, there's the question of what constitutes consent.
Alexander Decommere’s newest documentary film, End Credits, looks at burgeoning ethical dilemmas. One involves a man in his 80s slipping into dementia.
“It’s not a life," the man says. “Shoot me – it is done. I do not want to continue. It has to stop.”
One day he will tell the nurses and his family that he wants to die, 10 minutes later he changes his mind. No one knows what to do.
Marc van Hoey sees this in his practice in nursing homes. “You cannot be sure, and that’s the difficulty. For the family and relatives, it is very difficult to cope with it.”
The proposal currently before the Belgian parliament is to include a written directive in living wills.
“It stays a very difficult decision, but I think the society in Belgium is ready to discuss about it,” van Hoey says.
The other story in Decommere’s film revolves around a 33-year-old woman named Eva with severe long-term depression. Belgium is the only jurisdiction in the world that lists "mental suffering" in its law as grounds for euthanasia. It remains controversial.
“It may seem strange” she says in the film, “but I am looking forward to it. To finally say the battle has been done – it may end now.”
Five doctors approved her request for euthanasia. Marc van Hoey was Eva’s GP.
“So the euthanasia passed at her place,” says van Hoey. It was very emotional, yes."
“We don’t need euthanasia," Brochier shoots back. "We need competent doctors and we need family to accompany the person who is at the end of the life … it is bad for society if we leave the poor and vulnerable just by themselves.”
She points to the case of one man, distraught and distressed over the completely legal euthanasia death of his mother who did not tell him that she was seeking help to end her life.
“He is suffering so much, the doctor didn’t even tell him. He’s saying, 'I wanted to be next to my mother and there she is — dead — and there’s nothing I can say.'"
The debate in Belgian parliament over whether to officially expand the scope of the euthanasia law continues.
The deaf twins, Marc and Eddy Verbessem, are buried in the local cemetery in Putte.
Karin Wells is a documentary journalist at CBC's The Sunday Edition.