Wednesday, 16 January 2013

Belgium Grants Marc and Eddy Verbessem, 46-year-old Deaf Twins, aPhysician-Assisted Suicide

In Belgium, 46-year-old deaf twins Marc and Eddy Verbessem recently took their own lives with the assistance of a physician. Sorry, folks, this is a little long. Apparently I had a lot to say.

I should preface my comments on this story by saying that I do believe in a person's autonomy over their own body and that the right to commit suicide is theirs. I don't think that most people that commit suicide truly want to die - I think that they want some sort of pain to stop, and it's tragic that some choose this "permanent solution to a temporary problem." It's devastating for those that are left behind. I've considered suicide at a couple of points in my life, and it's always been at a point when I'm not thinking rationally about my circumstances or my options. But if I'd had the courage to do it, it would still be my right, however unfortunate it might have been.

I also support physician-assisted suicide for people who are terminally ill, in extreme pain, and have gone through counselling to ensure that this is really what they want. When people are that sick, sometimes they simply can't physically takes their own lives, and in some cases a physician's assistance is appropriate.

Marc and Eddy Verbessem were deaf, going blind, and scared for their future. They apparently had some other severe medical problems. But they did not fit the criteria that Belgium says people must meet in order to be eligible for physician-assisted suicide.

This decision, and the biases and assumptions behind it, make me highly uneasy. Downright scared, in fact.

"All that together made life unbearable

Blogger William Peace has written forcefully and often about the potential for abuse inherent in the decision to make physician-assisted suicide legal when it comes to disabled people. Not everyone in the medical community believes that disabled people could ever live a "normal" life. The assumption that because disabled people may not contribute to society or experience a fulfilled life in the way "normal" people do causes some doctors to encourage parents to abort fetuses that are going to be disabled, to withhold livesaving treatment from disabled people, and to make end-of-life decisions on their behalf (see list of links at the end of the post for posts that I've written about this).

Marc and Eddy Verbessem were extremely fearful of the genetic glaucoma that was claiming their sight. The idea of not being able to see each other, and of potentially being institutionalized, losing their independence, was so overwhelming that they sought the assistance of a doctor to give them a lethal injection. The Verbessem twins went to their doctor, David Dufour, to get his support for their request. He granted it. His report talked about the Verbessem twins' fear of facing life both deaf and blind, and of other medical conditions: " had respiratory problems that meant he could only sleep upright. The other had spinal cord damage and could barely walk. Doctors were unable to improve the Verbessem twins' condition, and many medications could not be used because of their fragile eyesight. It had come to the point where they barely ate, and they had been begging for months to be allowed to die."

So, a doctor directly supported  Mark and Eddy Verbessem's idea that if they acquired another disability, they had nothing else to live for, and might as kill themselves. Living as deaf-blind would not have been easy, granted, and would likely have put the Verbessem twins in a position where they needed more support, and more skills-building to learn to communicate and to maintain the level of independence that they desired. But it sounds from the article as if they had a loving, supportive family, and time to prepare - they spent two years looking for a doctor that would give them the lethal injection. Perhaps going to live in an institution was not the only alternative for the Verbessem twins.

But a doctor decided that he agreed with two grieving men that living with two major disabilities would be "unbearable", and got Marc and Eddy Verbessem started on the road that led to their death. Shame on him. I think that William Peace would agree, but I'll wait and see if he wants to weigh in.

David Dufour didn't give the ultimate approval to the decision, though.

"There certainly was unbearable psychological suffering for them"

I was happy to see in later reports about this story that Mark and Eddy Verbessem were evaluated by a psychiatrist and by several doctors before the decision to grant them a physician-assisted suicide was made. But, even though Professor Wim Distelmans, who ultimately approved the decision, assures that "There was certainly unbearable psychological suffering for them,", I'm not at all convinced that they should have received approval for this reason.

Here's the problem: Mark and Eddy Verbessum were not terminally ill or in unbearable physical pain, which are requirements for being approved for physician-assisted suicide suicide under Belgium's laws. Not a high degree of psychological pain. Not being so determined to take one's own life that one is begging to die and stops eating. That's when professionals do assessments to see to what degree a person is at risk of harming him- or herself and considers whether involuntary invention (and, if so, the nature, intensity and duration of that treatment) is appropriate.

Making "unbearable psychological suffering" a reason to grant someone physician-assisted suicide just baffles me. I used to be an admin on an Internet support forum for people with mental illness. I don't want to think about the number of people out there who at any given time are in a state of psychological suffering that they (and I) would describe as unbearable. I've been at the point where everything looks so dark that death looks like the only way out, and I can empathize with the people that are in that dark place and thinking of committing suicide. But would I encourage them to do so? Absolutely not. And would I suggest to lawmakers that they set a precedent where someone in that dark space even once got assisted to suicide because their psychological suffering seemed unbearable to them? No, no, and no. It's irresponsible, and the fact that it happened is a tragedy. Shame on you, Dr. Distelmans.

There's More

Belgium is also thinking of extending the right to request physician-assisted suicide to if they are capable of discernment or affected by an incurable illness or suffering that we cannot alleviate."

In my province, you can't even buy a lottery ticket until you're 18.

We make laws to keep young people from driving, voting, and having sex too early because their brains are not developed enough to thoroughly anticipate and understand all the consequences of their actions. In fact, a young person's brain isn't fully developed until after over 20 years of age.

That this legislation is even being considered scares the living daylights out of me.

What Should Marc and Eddy Verbessem Have Done?"

One of the links has reported that there's been harsh criticism of Mark and Eddy Verbessem for their choice. I hope I don't come across as one of their critics, because I'm not. As I said, they have the right to do what they want with their own bodies. These were men that lived in their own flat together. Presumably they had the ability to take their own lives without a doctor's aid (someone please tell me if they find information that says otherwise). It's their right to do so.

I am, however, critical of a system that, from what I have been able to find out about this case, pushed an abilist agenda that reinforced two mens' perception that death was preferable to more disability, believing in that idea so much that it relaxed its own laws about physician-assisted suicide.

It just seems like that this could have been turned around, and I'm wondering where the people who are supposed to want to prevent suicide were in the two years that Mark and Eddy Verbessem were actively searching for a doctor to help them die.

Here are the links about disabled people and the medical community to which I referred earlier: - Genetic discrimination in babies with Down Syndrome - Man with Down's Syndrome leaves hospital with DNR order that he didn't know about - Amelia Rivera's struggle to get a donated kidney due to her intellectual disability - Autism cited as a reason that Paul Corby didn't get a heart transplant.


  1. This case reveals a double standard in health care. People with a disability are treated differently from the non disabled population. Assisted suicide is perceived as a logical response to a significant disability. Safe guards failed to protect the Verbessem brothers. Similar safe guards have failed in the United States in states where assisted suicide is legal. With regard to the Verbessem case, did these men talk to anyone that was blind and deaf? Did a single story in the news interview a blind deaf person? The answer to these two questions is a resounding no. Please read my post about this story on my blog badcripple.
    Let me end with the following observation: Two men enter the emergency room. One man, paralyzed from a spinal cord injury decades ago, presents a stage four pressure sore. The second man is not disabled. He was in a serious car crash and will need many surgeries to repair the damage. Both men will have an extended hospitalization and long recovery period. Will assisted suicide be an option for both men? Not a chance. If the non disabled man expressed a desire to end his life a psychological consult would be ordered, medications given. If the paralyzed man expressed the same thoughts people would nod their collective heads and think this is a reasonable reaction.

  2. I do not judge anyone and the decisions that they make respecting their choices about life...of course, we should provide whatever supports are necessary, but the decision is theirs alone.
    Several states in the U.S. (2) allow for physician assisted suicide for terminally ill. Very erroneously, some would subscribe to a slippery slope (camel's nose) theory that first the terminally ill, then the disabled. Slippery slope is an epistemological fallacy; if a happens to lead to b, c is not necessarily to occur. Many people prefer a "good death" to a "bad death". That is their choice and subject to review by NO OTHER HUMAN. leave all judgement to a higher source, please.

  3. Hi Phil. I'm not interested in judging the two men, and apologize sincerely if it came across that way. No one makes a decision like theirs lightly, and I'm sure that a great deal of anguish was involved as they considered the people that they left behind (several articles indicated that they were quite close with their family). It sounds like this was truly what they wanted, they had as much right to do it as anyone else, and I wish them peace wherever they are now.

    The system that supports these laws needs to make sure that bias doesn't prevent people from getting information that they may need to make a decision, and mechanisms to properly allocate resources when desired. That's all.

    The distinction between "good death" and "bad death" is a useful one, and is at the heart of the hospice movement in Canada, for which I have a great deal of respect.