The debate over euthanasia in Belgium

Grave site of brothers Marc and Eddy Verbessem, 45.

Grave site of brothers Marc and Eddy Verbessem, 45.

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"Deaf Belgian twins euthanized after starting to turn blind." That was the headline in the Huffington Post. "Euthanasia twins had nothing to live for" - The Telegraph;  "One in life, one in death" - La Presse.

Marc and Eddy Verbessem were 45 years old, two working class men - cobblers - from the village of Putte in Belgium. In the photograph that went with the stories they are sitting on a park bench, arms folded across their chests, looking knowingly at the camera through their round glasses. 

The two men were about to reignite a debate everyone in Belgium thought was settled. 
Belgium, a Catholic country, passed its euthanasia law 11 years ago, a few months after the Netherlands.  In Belgium, it's not assisted suicide, a doctor handing over a pill as they do in Switzerland and Oregon and Washington state. It is death within minutes, with a doctor administering the injection. 

The vast majority of Belgians approve of the law. Every year more are taking advantage, primarily older people with terminal illnesses. But the twins from Putte were not old and were not dying. This was pushing the envelope.

Their deaths came as the Belgium parliament began debate on extending the euthanasia law to include terminally ill children and people with dementia.

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Village of Putte
Putte is a prosperous place, part bedroom community, part old farm village. The red brick church, St. Nicklaus, towers over the main street its big black front door locked tight in the middle of the day. The twins' funeral - a sad family event - took place here just before Christmas. 

The matrons of Putte buy their bread and their chocolate at the bakery; a man ducks into the restaurant; two young women ring up purchases in the modest department store.  Putte has grown used to questions about the twins. 

"They came here at our store," the young cashier says. "They came here for lot of years. They didn't talk anybody. If you know you're going to get worse, only worse not better. I can understand it."

They were told they would be completely blind in five years.

The twins lived on their own, over the store down from the church. They were an institution in Putte.

The woman in the restaurant remembers them.

"Oh they were very nice and they were always together." No one expected them to die.

"Those boys" she says. "When the one goes to shop other goes with him - no one else around.  They both contacted their doctor, went to hospital, did everything on their own, then they told the family. I understand."
 
Everyone seems to understand, to know someone - a mother, a friend's uncle,  who has chosen euthanasia.  

The waitress in the restaurant picks up her order.  "If I get something like that, I would do it too. It's the people's choice, if they don't want to live, let them, let them, let them die. I think it's strange why people think it's so bad."

But even to a doctor who practices euthanasia, the deaths of Marc and Eddy Verbessem were unusual. 

"It was a very special situation - and they were so close to each that one decided not to live without the other, but it was very difficult."

Marc Van Hoey is a general practitioner. He's the president of Right to Die Flanders, and he's very active in palliative care. The two are not mutually exclusive.

Van Hoey begins the explanation of the rules for euthanasia in Belgium. "You can ask for  euthanasia when you are nearly dying, when death is imminent, or you can ask for  euthanasia in a situation where you have a disease that lasts for many years," a chronic degenerative illness like Multiple Sclerosis or ALS. 

"Then you can say I want to go that far and then it stops. So they used this law as saying, I'm going to become worse but I don't want to become deaf and blind, so I want to stop before I will end up in that state."

Their family said - wait for your next birthday; wait for Christmas. But the twins chose the next available date; bought new suits and went into Brussels to die at the university hospital.  

In Belgium, it's not euthanasia on demand. The law says a person must be enduring unbearable physical or psychological suffering caused by an illness that cannot be treated.  

It specifies who, when and why. There is a Euthanasia Commission that reviews every case. The head of the commission, a man who rouses the ire of the anti-euthanasia forces, oversaw the death of the twins. 

"It was completely outside the framework of the law in Belgium. It is an illegal act.  The doctor  should be in jail," says an enraged Carine Brochier.

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Carine Brochier
Brochier works for the self-anointed European Institute of Bioethics in Brussels. It's run out of a one-person office, housed in a Brussels Catholic church, the Église Saint Sacrement.

Carine Brochier carries on. "They were not at the end of life, okay? They were 45 years old!"  She dismisses the question of "treatability".  

"You don't die from being deaf. If you become blind you don't die. The argument is that this psychological suffering of eventually becoming blind would lead them to become completely desperate. So it is on the basis of future suffering, that the doctor said, well, okay, well we can euthanize." 

She maintains that the euthanasia deaths of these deaf, nearly blind men has had an impact in all of Belgium. 

"All those deaf people now, who might be a little bit depressed, say okay, should I ask for euthanasia too?  If all the people who have a handicap ask for euthanasia, are we going to kill them? That would be a solution for the ministry of health!!!"

The umbrella group of Flanders' deaf organizations, Fevlado, was furious with the press for describing life for the deaf and blind as miserable. Nonetheless, they issued a press release defending the twins' right to chose. 

Filmmaker Alexander Decommere has worked on two films about euthanasia in Belgium. He was only 17 when the law was passed, and didn't pay much attention. Now, he closely follows the progress of the euthanasia law in Belgium. He watched the case of the twins unfold in the press.

"It's not Hitler taking out the handicapped because he thinks they're worthless human beings." He shakes his head. "There are all these discussions already about euthanasia. Who can get it, how can you get it. If people are using this case of these twins who couldn't bear to live without each other, you are only making it more difficult  to talk about euthanasia. It's not helping any conversation to make the law better."

The law hasn't changed since 2002. But every few years, a new case surfaces and with it a new round of public debate. First, there was the euthanasia death of a man in the relatively early stages of MS.  He was widely castigated for leaving behind a 12 year old son. Then a prominent writer with Alzheimer's. Dementia is currently excluded as a valid reason for euthanasia. But the Belgian prime minister weighed in on the case. "I can live with the fact that he decided thus", he said.

The twins are the latest cause célèbre, and that frustrates Decommere.

"It shouldn't be about sensationalizing  these individual cases. It should be about making everyone understand what euthanasia is all about.  As we speak, there are proposals in the Belgian parliament to broaden the laws." One proposal is to permit the euthanasia deaths of people with dementia.

"I don't think it's returning to the basic question, should we have this law or not. Everyone is rather pleased with the fact that this law is here now." 

Decommere sums up today's debate. "The question is how to make it the law more accessible for more people. Or should we make it more difficult for people to get to it, to make sure people don't use it as an easy solution?"

More than a decade in, Belgium has discovered that passage of the law didn't end the debate. Painful quandaries continue. But a lot has been openly talked about and learned. 

Marc Van Hoey, the doctor, has practised euthanasia from the beginning.

"In the beginning, it was far more specialists in hospital practising euthanasia. For 2 years now, we see more euthanasia practices in nursing homes and at home by GP's. And that's a good evolution."

Van Hoey believes the law has had a major and a positive social effect.

He says, "They want to get back home to be with the family instead of a clinical, sterile room. People are changing their thoughts about dying."  

Prior to the legalization of euthanasia in Belgium, doctors practised assisted dying. Everyone knew it. It was common practice, and accepted. Often as not, it was a bedside decision. There were no medical protocols, no laws regulating procedure. 

One of the arguments in favour of legalization was that it would give legal protection for doctors and regulation for patients.  The law says that a second and, in the case of someone with a chronic degenerative disease like multiple sclerosis, a third doctor must be consulted to advise on all euthanasia requests. 

"But how do you give that kind of advice," says Marc Van Hoey, " What do you ask, how do you act? How do you do it, the practising, the counselling, the talking with the family, and so on?"

In the early years of the law, a group of doctors, including Van Hoey, created a euthanasia course. Today there are 300 doctors in Flanders who are Life Ending consultants. Marc Van Hoey has someone in his office requesting euthanasia nearly every week. 

"Some weeks, two or three. It depends." Does he say no sometimes?

"Of course...it happens we have a discussion with patient. It happens," he explains, "that a patient suffering from depression is referred to him on a euthanasia request. But it is not treated very well or the patient is acting too soon. Is that a reason to ask for euthanasia? It's very difficult, so it can happen that we say stay off, don't do it. It happens."

There are checks and balances, second and third opinions built into the law. In cases of people with chronic degenerative illnesses, there must be three medical opinions and a waiting period of thirty days.

"It's not the kind of thing you say 'I'm sick. Tomorrow I want to die.' Something goes on in your mind and you talk about it with your family, with your doctors." Van Hoey, with a certain sadness in his voice, adds, "Even if you have a terminal disease, it's not something that comes out of the sky like the snow."   

Right to Die Flanders issues end of life cards to be carried in a person's wallet, much like an organ donation card. More and more are being issued.

"Belgians have become more aware that everyone - no matter what religion - can make the decision about what they want to do with their lives."

The printer in Carine Brochier's office clacks away insistently. The anti-euthanasia crusader and her organization have issued their own assessment of euthanasia in Belgium.

"2,132 euthanasia deaths in 2012. The number is constantly rising," she says. That's in a population of 11 million.

Indeed, the number of reported euthanasia deaths has gone up steadily since the law came into effect. At the same time, though, the number of unofficial euthanasia deaths has plummeted. 

75% of euthanasia requests come from people between 69 and 79. More requests come from men than women. And 85 % come from patients with terminal illnesses - usually cancer. 

Studies in The Lancet and the The New England Journal of Medicine say - in so many words - there's no substance to the slippery slope argument. There are no more euthanasia deaths than there were before the law was passed. Carine Brochier is having none of it.

"We receive phone calls from nurses and they say, I work in this very luxurious hospital in Brussels and I see euthanasia all the time," she says. "It happens even if a person doesn't ask for it. The family finds perhaps the burden..." and she trails off. "The family is asking for euthanasia of some people."

Neither she nor any nurse have pressed charges. "They afraid to lose their jobs," she says.

In the 11 years during which the law has been in place, there have been no criminal charges - no substantiated complaints.

Brochier sees a face-off between euthanasia and palliative care, where some doctors are the enemy. "We have a very good palliative care system in Belgium. 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."

That has always been one of the biggest fears, in any euthanasia debate. Legalize euthanasia and it becomes easier for a doctor to "kill" a patient, than to give proper palliative care.

Carine Brochier goes further. "The evidence is that if you don't suffer, if you think you are not alone in the world, you don't ask for euthanasia." 

The European Journal on Palliative care wanted to know if, in countries where euthanasia had been legalized, the quality of palliative care had indeed deteriorated.  
In Belgium, the Journal reported, it has improved by leaps and bounds. 

On the same day parliament passed the euthanasia law in 2002, it also passed a law guaranteeing and funding more palliative care. More than one peer reviewed study has found that when there is good palliative care, particularly spiritual or existential care, with open conversation about dying, there are more requests for euthanasia. In Belgium, in many facilities, euthanasia and palliative care are intertwined.

Brochier believes it comes down to pain management. 

"Different studies shows that 96% of the pain can be managed by the doctors - if they are competent." She argues, "For the 4%, we can offer palliative sedation."

Marc Van Hoey explains the distinction between palliative sedation and euthanasia.
"Palliative sedation is a kind of comfort " he says " that is commonly accepted everywhere. For instance, increasing the morphine and giving a little bit of valium to sleep. And then you are slowly, slowly like a candle going down." If you have palliative sedation the patients lasts for a few days. When you do euthanasia, it's for a few minutes. That's the only difference.

Brochier shoots back "We don't need euthanasia. We need competent doctors and we need family to accompany the person who is at the end of the life."

But Belgian law recognizes that not all suffering is physical pain. "No. And that's where our society has to react against individualism. It is bad for society if we leave the poor and vulnerable just by themselves."

As for the many euthanasia requests from those neither poor nor or vulnerable, independent people who have simply had enough?

"Had enough of what? Of love?" Brochier asks.

And she points to the case of one man, distraught and distressed over the completely legal euthanasia deathof his mother.

"She asked for euthanasia  without  him knowing.  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."

In this case, it was clearly his mother's decision."It is his mothers decision but I think it's quite selfish."

Carine Brochier is working with a vocal but small group of doctors, academics and Catholic bishops. 80% of  Belgians don't feel threatened, are quite happy with the current law. But now the Belgian parliament is moving into more difficult territory, courting new ethical dilemmas.

For ten years, the Netherlands has had medical protocols for euthanasia of severely handicapped babies. It allows young people to opt for euthanasia, too. Belgium is talking about a similar move. The proposal in Parliament would make euthanasia available to people under 18 who are "capable of discernment," with incurable illness or suffering that cannot be alleviated. The decision would be made by the young person,  their parents and their doctors and, always, with the advice of at least one other physician.
The anti-euthanasia forces say that Belgium is moving closer to euthanasia on demand.

"No, no. That's not the way you should look at it. It's not euthanasia for everyone. It's care for everyone."

Alexander Decommere's view was strongly influenced during the making of his most recent film "End Credits".

It looks two burgeoning ethical dilemmas square in the face. The first centres around a man named Adelin. He is in his 80's, living in a nursing home and slipping into dementia... 

He sits up in his bed, neat, well turned out in his brown pajamas - well cared for.

"It's not a life," he says. The nurse strokes his cheek. "Shoot me - it is done."

"Adelin look at me?"  She says. "How are you?" "I'm not that good", he replies. "This is not a life for me. This is a dead life.  I do not want to continue. It has to stop here."

Decommere knows Adelin's history "He had seen his mother and his sister deteriorate dramatically from dementia. He always said I never want to die like this. Everyone knew that. He told all the medical staff around him that he wanted to die. He wanted it to end"

He said he wanted it to end - repeatedly. The nurses advised him to tell the doctor. Tell the doctor what you tell us.  The doctor, his GP,  and a man who knew him well, came to see him. The nurse sat with him. They had a talk about euthanasia

"That is when I stop living?" said Adelin. "Yes," from the doctor.

"And you give me a pill?" he asks. "A pill, syrup or an injection. You choose," the doctor says.

Suddenly, Adelin erupts. He leans  forward in his bed and shouts through clenched teeth  "SHUT UP!"

"That is not what you want?" asks the doctor. And Adelin berates him. "God dammit . It's easy for you to talk. You take a man's life."
The doctor is nonplussed. "We do it at the request of people who say it has been enough."

Adelin sighs. "I am not in that much pain."

"In a quarter of an hour you could hear two voices: one expressing kill me, don't take care of me, don't fix me, leave me alone." says Alexander Decommere. "Ten minutes later - I don't want to die, let's go for a walk."

The nurse kisses him, tell him he is a charmer and he winks at her.

Adelin's nephew sits by his bedside. There's no doubt in his mind that his uncle always said he wanted to die if he became demented. But there's no doubt about what he has said today. 

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 anti euthanasia forces say euthanasia is selfish, too hard on the family. Marc Van Hoey president of Right to Die Flanders, argue that leaving life ending decisions to the family is equally hard.

If anything, Belgians have become more concerned with doing the right thing since the passage of the euthanasia law. The proposal in parliament now would give the option of adding another clause to a living will. Living wills are legally binding in Belgium. The clause might say. Please euthanize me if I become fully demented - if I can't recognize my family, if I can no longer  talk or eat. 
 
Adelin groans as the nurse puts him to bed.

But what if the law is changed, and Adelin had an air tight, fully enforceable written directive and then, in his demented state, changed his mind?

There are 6 ethicists in Decommere's film. "We should honour his wish to die" says one." He is an academic, the voice of dispassion. "He has proven to no longer be mentally competent.  It is clear that he can no longer change his mind."

The other ethicists in the film - geriatricians,  psychologists,  men and women who see patients -  say when you are not one hundred per cent convinced of what someone wants, then no.

"I would have a hard time euthanizing someone who seems to be enjoying life," said one.  

"It stays a very difficult decision,"  Marc Van Hoey says quietly "but I think the society in Belgium is ready to discuss about it. It's not black or white. It's very difficult you see."

A few days after that meeting with the doctor, Adelin died of a lung infection, his nephew and the nurses at his bedside. 

The other story in Decommere's film revolves around a 33 year old woman. Her name was Eva. Decommere met her three times.

"She was a very intelligent woman. She was very grateful, just glad to be able to die."

She sits talking to the camera on her patio, the trees behind her, birds chirping. "It may seem strange" she says, "but I am looking forward to it. To finally say the battle has been done - it may end now."

Eva suffered from chronic depression. She attempted suicide many times, even in hospital.

"I visit a psychotherapist weekly, my psychiatrist every month,"  she says . "I routinely take my medicine. Nonetheless the different therapies do not work."

Marc Van Hoey was Eva's GP.

"She had already suffered more than ten years of severe depression," he says. "What we call endogenous depression. She went through every treatment -  medicine, electroshock therapy, psychotherapy."

Belgium is the only jurisdiction in the world that lists "mental suffering" in its law as grounds for euthanasia. It remains controversial. 

Van Hoey goes on. "So we followed the procedure. We even asked a few doctors more - five doctors altogether - and all of them said we could continue. "

Eva wanted to donate her organs. That was the ethical dilemma. One Christian web site has called Belgium out as the world leader in harvesting organs after euthanasia. There have been approximately eight cases in eleven years.
 
But the organ donation ethics committee at the hospital said no to Eva. Not only did they refuse to accept her organs, the committee told her to go back to a psychiatrist. She exercised her right to refuse treatment. 

The second time Decommere met Eva was after the committee had turned her down. "It was a blow," she said. "It would have given meaning to my life."

The dog laps water from his bowl. Eva speaks slowly, "The euthanasia is planned for seven p.m." In the middle of August.   "We haven't planned the day yet... I don't think we have to do anything special - just a quiet day as always "

Marc Van Hoey is in the kitchen preparing the injections, three of them. Eva is in the dining room saying good bye to her brother and his wife. .

"Eva, are you ready? Says Van Hoey, "Yes. I am ready doctor.

Alexander Decommere remembers every moment. " It was very quiet, serene,  and  I remember she was in her comfortable clothes " . She wore a red t-shirt and track pants.  " When she lay down on the couch, she had already pulled up her sleeve,  and said  "Let's end this now..I'm ready". 

Marc van Hoey finishes the story " So the euthanasia passed at her place  I did it myself. It was very strange when I saw it on the movie screen, seeing myself.  It was very emotional, yes."
 
"The bond between a patient and a doctor gets so strong by the time the euthanasia takes place  that it's hard. It's so personal and intimate and so beautiful." 

Decommere
pauses to find the right words,  "It is inherently difficult for anyone who has to do it or to ask for it. It's ending a person's life. It's not easy, but it's important that these doctors are there. "

The cemetery in Putte is a kilometer or so out of the village on the same road where Marc and Eddy Verbessem,  the deaf twins, used to live.

A light wind rustles the trees. Cars go by.   As their eyesight failed, their friends said, the twins would plug their computer into the television  and project the euthanasia law in giant letters on the screen. 

They were trudging from one illness to the other, said their brother.

They were deaf, going blind. One of them had breathing problems and could only sleep sitting up.  The other had had surgery on his spine and could barely walk. 

They stopped going out.  For the last year of their lives, they sent a letter to their doctor every week via the local bus, asking for euthanasia.
  
They stopped eating. When he visited them at home, their doctor said afterwards, it was clear that if there was no euthanasia, they would rob themselves of their own lives.  

Mourning doves coo.  A couple stops to look at the newest tombstone.  Marc and Eddy Verbessem's stone is a black granite slab. There is a souvenir from Lourdes on one side, a spray of everlasting flowers at the top and that photograph. Two men with stubbly beards, eyes looking straight up, staring into the face of anyone who comes by. 

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