PUTTE, Belgium—In this small village amid an array of Flemish farms, they were an unusual but seemingly happy pair, two 43-year-olds who were identical, deaf twins. Townspeople recalled seeing Marc and Eddy Verbessem around town frequently, talking animatedly in sign language together, tooling around in a small blue car, and regularly buying two copies of a popular gossip magazine.
No one expected them to decide to die on purpose.
|For Belgium's Tormented Souls, Euthanasia-Made-Easy Beckons|
According to their doctor, the twins had developed a genetic disorder that was making them blind, and several years ago they began pressuring him to put them to death. Even in Belgium, with its decade-old euthanasia law, the request was striking, since the twins were relatively young and not terminally ill. But their doctor says that as their condition worsened and threatened their independence, they would hand him envelopes containing a blunt request for euthanasia—and, for good measure, a list of symptoms they said were making their lives unbearable.
The twins' ordeal wasn't publicly known at the time, but their request—and its fulfillment last December—highlights an emotional battle over expanding Belgium's euthanasia law, and is reverberating in the end-of-life debate in the U.S.
On Dec. 14, Marc and Eddy, after a long legal and medical journey, met their doctors and family in a Brussels hospital, according to their doctor. They enjoyed a final cup of coffee and lay down in adjoining beds, where a chaplain said a prayer. Then they waved to their family, pointed up as if to say "see you on the other side," received their injections, and were gone.
Belgium adopted euthanasia in 2002, a year after neighboring Holland, with the goal of helping incurably ill patients escape "unbearable physical or mental suffering." It has become widely accepted; in 2011, the last year for which numbers are available, 1,133 Belgians had euthanasia requests approved, up about five fold from the first full year after the law was passed. Euthanasia accounts for about 1% of all deaths in Belgium.
The Belgian parliament is now considering expanding euthanasia in ways that many Americans might find startling. Under one proposal, gravely ill teenagers could seek euthanasia, if their parents agreed.
Another bill would let patients with early Alzheimer's sign a declaration asking to have their life ended when a doctor concludes they're no longer interacting with the outside world, even if they seem vigorous and happy at the time. Now, patients must be lucid to request euthanasia, which is generally carried out soon after.
The twins' case, along with those proposals, is playing into the end-of-life debate in the U.S., as American opponents of assisted suicide warn that America could end up like Belgium. Critics say Marc and Eddy's case shows how aid-in-dying laws invariably expand their reach.
"It's a deep worldview if you accept that life isn't necessarily a good and death isn't necessarily a bad," said John Brehany, executive director of the U.S. Catholic Medical Association, which advocates against assisted suicide. "A lot of people in the world aren't happy, and if death is one more option we lay out for them the world will look like a very different place."
But many Europeans see euthanasia as highly compassionate, a way for individuals to control their fate and even a matter of human rights. "This law should serve as an example for countries who have not been able to agree on a suitable framework for this delicate issue," David Dufour, the twins' family doctor. He discussed the Verbessem case via email.
In the U.S., four states—Oregon, Washington and Montana and Vermont—allow assisted suicide, while several others are considering it. Assisted suicide differs from euthanasia in that the patient himself, not a doctor, administers the lethal dose. That is crucial for many Americans, and polls suggest U.S. voters are more open to assisted suicide than euthanasia, though opponents claim one can lead to the other. Still, the battle on both sides is heating up. The Vermont legislature just enacted its assisted-suicide law, while Massachusetts voters defeated a version last November.
The debate is part of an intensifying discussion, at once public and highly personal, of end-of-life issues, due partly to the aging baby boom generation and partly to technological advances that can prolong life. From cremation to living wills, Americans are grappling more directly with how to die.
One U.S. group spreads the word on how patients who want to can use plastic hoods to die.
One U.S. group pushing the limits is Final Exit Network, a New Jersey-based nonprofit that spreads the word on how to assemble a homemade "exit bag"—a plastic hood that fits over the head and is fed by helium, resulting in a quick death. The group even supplies "exit guides" who have witnessed about 350 suicides so far, the group estimates.
Rita Marker, executive director of the Ohio-based Patients Rights Council, which opposes assisted suicide, says Final Exit volunteers essentially invite people to kill themselves. "A lot of times vulnerable people fall for this sort of thing," she said. "It's ghoulish."
Frank Kavanaugh, a Final Exit board member, denies that. He also rejects a charge from critics that "exit guides" prevent people from removing the hoods if they have last-minute doubts. "We do not as a matter of policy hold down a person's hands to keep them from taking off the hood," Mr. Kavanaugh said. "We often hold their hand, if they wish, as a matter of compassion."
The end-of-life debate has become global, with euthanasia defining one end of it. Luxembourg in 2008 joined Belgium and the Netherlands in allowing euthanasia. In France, a medical panel recently approved the practice, paving the way for possible legislation. Switzerland allows assisted suicide, and its Dignitas clinic outside Zurich has become a destination for those seeking death.
The subject is also entering the broader culture in the U.S. and world-wide. The BBC recently commissioned a series called "Way to Go," which it described as "a black comedy about three ordinary guys who find themselves forced by an extraordinary set of circumstances into setting up an assisted-suicide business."
When her Alzheimer's worsens, Gerda Windgasse, 72, wants to die this way, too.
In Belgium, euthanasia's foothold is illustrated by Gerda Windgasse, 72, a bubbly retired secretary who's planning to end her life in the coming years. She has a still-mild case of Alzheimer's, and when she decides she has deteriorated enough, she intends to gather her family and receive a lethal injection.
"My life was good, but I don't want to make it two years longer if my mind is not there," Ms. Windgasse said in an interview at her modern-style home in the prosperous town of Oud-Turnhout. "When I don't recognize my husband or my kids or grandchildren, I don't want that."
When Ms. Windgasse was diagnosed in 2002, her doctor said he'd never euthanize her because of his Catholic beliefs, prompting her to seek another physician. "When I found a doctor who could help me with euthanasia, tears came down, I was so happy," she said. Knowing she can end her life before losing her dignity, she said, "makes me feel free, like I can fly."
That new doctor is Peter De Deyn, a white-bearded bear of a man who's a neuropsychiatrist at the University of Antwerp. He estimates he has euthanized about 20 patients with dementia, plus more with other conditions.
Dr. De Deyn rejects the notion, prevalent especially in the U.S., that patients can get bullied into euthanasia by doctors or family members. He said euthanasia is only performed on those who desperately want it.
"It's something they are looking forward to," Dr. De Deyn said. "That sounds paradoxical, but it is the only way to step out in a dignified manner, having control over their life and death, and they see it as a kind of party. They are surrounded by loved ones, they sing songs sometimes. It's very, very strange."
Dr. De Deyn has told Ms. Windgasse he will euthanize her when she's ready. On a recent afternoon, she and her husband Karel Broeckx opened a black binder to show the declaration she has signed saying she can be euthanized if she falls into a coma.
But Ms. Windgasse hopes to end her life while she's lucid, and her husband says he won't fight that. "There is no doubt I will accept the decision," Mr. Broeckx said. "It's out of love for her that I couldn't stand the full decline of her personality."
More complicated is the question of whether to invite their granddaughters Laura and Amber, ages 12 and 10, to the event. "I often think, 'Why not with the grandchildren?' " Mr. Broeckx said during the interview. Ms. Windgasse protested, "They're too young." Mr. Broeckx replied, "I have my doubts about that. I saw my own grandfather die…It can be a beautiful moment."
Earlier this month, Christian de Duve, a Belgian Nobel laureate in medicine, was euthanized at his home at age 95 after various health problems. Such prominent cases can spur a greater interest in euthanasia in the country, as happened after the 2008 death of Hugo Claus, a well-known Belgian writer.
Now the Belgian senate is debating whether to expand the law. One of the most controversial proposals would let severely ill, suffering minors request euthanasia, if a psychiatrist finds they have a "capacity for discernment" and if their parents agree.
The Catholic Church, among others, fiercely objects to that. "Minors are…considered legally incapable of certain acts, for example buying or selling, marrying, and so on," Msgr. Andre-Joseph Leonard, archbishop of Brussels, told reporters recently. "And here all of a sudden, they're sufficiently mature in the eyes of the law to ask someone to take their lives?"
Ms. Marker, of the Patients Rights Council, said such proposals highlight the perils of aid-in-dying provisions, including assisted suicide laws. "This presents a really good lesson for those in U.S. considering this," she said. "If it is a good medical treatment to end suffering, why deny it to a 3-year old, a 5-year-old, an 8-year-old?"
Assisted-suicide advocates say history disproves such slippery-slope arguments; Oregon, they say, has never moved to expand its law, despite allowing assisted suicide since 1997. In all, 1,050 Oregon patients have receive lethal prescriptions since 1998, a number that is rising but, on a per capita basis in the state, is far lower than that in Belgium.