Deaf twins going blind euthanized by request in Belgium

[amigocabal]

Deaf twins who discovered they were going blind and would never see each other again are euthanized in Belgian hospital

A pair of identical twins, who were born deaf, have been killed by Belgian doctors after seeking euthanasia when they found out they would also soon go blind.

In a unique case under the country's euthanasia laws, the 45-year-old brothers, from Antwerp, chose death as they were unable to bear the thought of never seeing one another again.

They were euthanised by doctors at Brussels University Hospital, in Jette, on December 14 by lethal injection after spending their entire lives together.

Continue reading...
I can understand their reasons for choosing euthanasia.

The condition would have literally cut them off from the rest of the world. They would not have been able to perform any essential living tasks. How would they have been able to tell whether a stove was on or off? Or whether a cardboard box has food or rat poison?

(I suppose it would be possible to communicate to people with that condition by tapping Morse code into their foreheads, but how many people learn Morse code in case such a thing happens?)

[Alyeska]

Deafblind people can live and can communicate with the rest of the world. Helen Keller is the most famous example.

I find their deaths to be tragic and I hold the doctor in contempt for helping them to commit suicide.

These poor men would not have been cut off from the world. There are computerized devices that make deafblind communication even easier than it was a hundred years ago.

[Broomstick]

I would like to introduce you to Helen Keller who lived a full life despite being both deaf and blind from the age of 19 months. Also some information on the deafblind. Let me introduce you to the National Consortium on Deaf Blindness. Also The Center Deaf Blind Persons, the World Federation of the Deaf Blind, American Association of the Deaf Blind... well, you get the idea. A quick Google finds similar organizations pretty much everywhere, including places like India which are not normally assumed to be very supportive of the disabled.

The point being that no, being deaf and blind do NOT "literally cut them off from the rest of the world".

They would not have been able to perform any essential living tasks.

That would be an erroneous assumption.

How would they have been able to tell whether a stove was on or off?

There is this thing called "heat" that one can typically experience from a distance due to it radiating in the area immediately around the heat source.

(I suppose it would be possible to communicate to people with that condition by tapping Morse code into their foreheads, but how many people learn Morse code in case such a thing happens?)

There are several ways to communicate with the deaf blind. Genearlly, only amateur deaf blind radio operators bother with Morse Code. Others use variants of sign language, most learn braille. I've communicated with a few on the internet and it's pretty much like what I'm doing now, from my viewpoint. On their end, they have a device that displays text as the raised dots of braille.

I have to wonder if the Belgian twins suffered from Usher Syndrome. Was ANY attempt made to rehab them as deaf-blind people? Most people with that level of disability do manage to adapt.

I'd rather see efforts made to aid the disabled rather than kill them.

[AniThyng]

How much discretion does a Belgian doctor have to refuse to perform the procedure?

[Vendetta]

Whilst its possible for deafblind people to communicate and interact with the world, this is a very specific set of circumstances.

Two brothers who have lived together as deaf people for 45 years, almost certainly relying on a primarily visual form of communication with each other, would have closer emotional bonds with each other than with basically anyone else in the world, and a deep psychological reliance on the sight of each other.

That's what this is about, not being unable to cope with life as deafblind, but being able to cope without a deeply ingrained psychological dependency on the sight of a specific individual.

[Irbis]

I would like to introduce you to Helen Keller who lived a full life despite being both deaf and blind from the age of 19 months.

I'd rather see efforts made to aid the disabled rather than kill them.

I bolded important part for you - it's a lot easier to adapt to loss of something you had for 19 months, than something you had for 45 years. Plus, said Keller had governess, how many disabled, jobless people in modern first world country can even afford 24/7 highly skilled hired helper? Not to mention how much more humiliating accepting said help it is for grown man, than to little child, and how much more important vision is to our civilization than to humans a century ago.

Also, weren't the same people who were defending religious, grasping-at-straws nonsense in denying yourself basic medical procedures due to misunderstanding of archaic middle eastern texts are suddenly not okay with express patient wishes? I mean, the expressed outrage was that when you want to kill yourself while healthy because supposedly transfusion is apparently the very same as eating animal blood, it's good, and doctors are evil for trying to keep you alive, but when you want to die due to your quality of life and bond with closest human being irreparably ruined, it's wrong and doctors are horribly evil for listening to that wish?

To me, giving someone a bit of extra natural fluid that will be broken down and expelled quickly is a lot more justified than forcing someone to live even when said person finds it objectively to be not worthy anymore, and I am frankly baffled how anyone can think the opposite. Patient decisions being supreme works both ways, if we accept people's right to end lives on irrational beliefs, then doing so based on consideration of quality of said life should be much easier.

[AniThyng]

doctors are horribly evil for listening to that wish?

People also get pissy at doctors who refuse to perform medical procedures* that may be against their personal moral or religious code, they should do their jobs or get out! Then when they do their jobs and do something against our personal moral or religious codes, we tell them they should have listened to their conscience and refused to do their jobs! Yay!

*You know which ones

[Serafina]

At 45 years old and with such a severe disability - which vastly alters your life and is very limiting - you should certainly have the right to end your life.
(unless you have a diagnosable, clinically relevant psychological disorder).

This is not quite comparable to refusing a life-saving procedure on religious grounds - because those are ultimately based on a figment of your imagination. That doesn't make the assosciated feelings any less real, but it IS quite comparable to the feelings one might have due to a psychological or neurological disorder.

Also, a person who decides to die, or to refuse treatment, due to religious reasons is arguably not making an informed decision - which is of course necessary to give consent. Because a informed decision requires awareness of the actual facts of the situation - which religious objections are not.

[salm]

At 45 years old and with such a severe disability - which vastly alters your life and is very limiting - you should certainly have the right to end your life.
(unless you have a diagnosable, clinically relevant psychological disorder).

This is not quite comparable to refusing a life-saving procedure on religious grounds - because those are ultimately based on a figment of your imagination. That doesn't make the assosciated feelings any less real, but it IS quite comparable to the feelings one might have due to a psychological or neurological disorder.

Also, a person who decides to die, or to refuse treatment, due to religious reasons is arguably not making an informed decision - which is of course necessary to give consent. Because a informed decision requires awareness of the actual facts of the situation - which religious objections are not.

Hehe, Anything was talking about abortions.

[Broomstick]

I would like to introduce you to Helen Keller who lived a full life despite being both deaf and blind from the age of 19 months.

I'd rather see efforts made to aid the disabled rather than kill them.

I bolded important part for you - it's a lot easier to adapt to loss of something you had for 19 months, than something you had for 45 years.

And yet, the other examples I listed have people who lost their sight/hearing at much later ages. I specifically mentioned Usher Syndrome, where people are born with severely impaired hearing and then go blind in mid-life. Many people with Usher Syndrome make the necessary adaptations to deal with their problems.

Plus, said Keller had governess, how many disabled, jobless people in modern first world country can even afford 24/7 highly skilled hired helper?

Why would an otherwise able-bodied deaf blind person require 24/7 hired help? They aren't paralyzed. Then can dress themselves, brush their own teeth, go to the toilet by themselves, etc. Some help with meal preparation is probably necessary but I see no reason they couldn't operate a microwave or make a sandwich for themselves and they can most certainly feed themselves. Communication is an issue, but you don't need to communicate 24/7, and modern technology makes it easier for them to communicate with others than in the past.

As for jobs.... retraining may or may not be possible for these gentlemen and it is true jobs for the deaf blind are limited. However, I'm assuming Belgium is more enlightened than the US both in quantity of disability allowance for individuals and in providing for necessary assistance to the disabled, though if I'm wrong on that point I'm certain someone will correct me.

Also, weren't the same people who were defending religious, grasping-at-straws nonsense in denying yourself basic medical procedures due to misunderstanding of archaic middle eastern texts are suddenly not okay with express patient wishes? I mean, the expressed outrage was that when you want to kill yourself while healthy because supposedly transfusion is apparently the very same as eating animal blood, it's good, and doctors are evil for trying to keep you alive, but when you want to die due to your quality of life and bond with closest human being irreparably ruined, it's wrong and doctors are horribly evil for listening to that wish?

Some people argue that. Myself, provide the patient is adult and of sound mind and has been informed of the potential consequences of their refusal to accept aid I'm willing to entertain the idea of letting them have their way.

Look, I can comprehend that for some people being both deaf and blind would be intolerable... but most people confronting that dual disability, even later in life, can adapt. Where these men at all encouraged to attempt to adapt, or was this granted when they were still in the early stages of coping with this news? Were they informed of the adaptive aids and techniques or were they left in fear? Were they actually informed of alternatives, or were they left in fear and ignorance? Suicide is a last resort, was anything else attempted? Most cases I've heard of involved assisted suicide or euthanasia for the severely disabled involve people who have been living with the disabilities for a number of years and have made an attempt to adapt, and while I'm not happy about it I think those people have made an attempt to try to work things out and thus have a reasonable basis on which to say "I can't cope, I choose death".

This article indicates that the brothers "couldn't communicate with the outside world" as they spoke with a sign language unique to them and understood only by them and their close family. That right there makes me think these twins were neglected. Why weren't they ever taught a more widely spoken gestured sign language? Why weren't they taught to read and write? It also mentions they had "other" medical problems beside being blind and deaf... why was this not mentioned? Most articles make it sound like they chose death solely due to impending blindness but if there was some other nasty factor involved then it's no longer a matter of just being blind.

There are things we aren't being told here, but the more I learn the more appalling this whole situation becomes.

[Spekio]

Deafblind people can live and can communicate with the rest of the world. Helen Keller is the most famous example.

I find their deaths to be tragic and I hold the doctor in contempt for helping them to commit suicide.

These poor men would not have been cut off from the world. There are computerized devices that make deafblind communication even easier than it was a hundred years ago.

Go fuck yourself, you sanctimonious asshole. Just because they could go on living they should be forced to? And you hold the doctor in contempt for doing his job and following the patient wishes?

Perhaps you never heard of Quality of Life, but their decision of staying alive as deaf-mutes or not is a personal decision. Neither we, doctors nor the government should have the power to keep them alive against their will, being their life - especially in this particular situation.

[Broomstick]

Just because they could go on living they should be forced to?

What, if any, attempts were made to alleviate their suffering by means other than death? Death is NOT the only "solution" to disability.

If I were to find out that yes, such attempts had been made over the course of several years and alternatives had been exhausted that would change my outlook on this but as it stands I have far too many questions to be complacent with this outcome.

And you hold the doctor in contempt for doing his job and following the patient wishes?

Doctors do not have to blindly follow the wishes of patients. It's entirely legitimate for doctors to offer alternatives, discuss pros and cons of alternatives, and to try to persuade a patient to follow what, in the doctor's educated opinion, is the least harmful of alternatives.

Perhaps you never heard of Quality of Life, but their decision of staying alive as deaf-mutes or not is a personal decision. Neither we, doctors nor the government should have the power to keep them alive against their will, being their life - especially in this particular situation.

As I have already stated, MOST people facing severe disability manage to adapt to the situation and often rate their quality of life higher than their doctors do. Was this even attempted here? It's a very important question to ask. Most deaf blind people with adequate support (which is less than many suppose once initial rehab is over) want to live. Most quadriplegics want to live. Hell, even a lot of people with locked-in syndrome want to live (I know such a man who is an active member of one the other message boards I frequent). Until a real attempt is made at rehab no, I don't accept death as an alternative.

Were there other confounding factors here? For example - STRICTLY hypothetical - if these brothers also had something like diabetic neuropathy resulting in highly diminished sense of touch in their hands that would clearly make being deaf blind much, much worse and truly cut them off from most potential routes of communication, which would make a stronger case for the situation being intolerable. Yet there is no mention of anything like that, just a vague "other medical problems".

Again - why did these twins have only and exclusive sign language between themselves and their family rather than one of the more common sign languages? That would restrict interpreters to only immediate family, and require training for those people to act as deaf blind interpreters. Why? This makes no sense in the modern world, in a place as civilized as Europe. That also calls into question just how certain the doctors are of the twins' wishes as there would be no way to bring in an outside interpreter to objectively report the twins wishes or discuss things with them. Everything has to be filtered through close relatives who may or may not have their own agenda or bias in either reporting the twins' thoughts or communicating medical information to them. Was Sign their only means to communicate, or could they read and write some language as well? If they were illiterate (which would, again, be bizarre in this day and age but could happen) that would further complicate rehabilitation and communication as deaf blind people.

No, I won't accept "these poor boys were facing a second devastating sensory disability and it's OK for them to be killed" (because this wasn't suicide, it's been repeatedly called "euthanasia" - if they wanted to die why did they need someone else to kill them rather than using assisted suicide?) without more information. If they have only a limited sign language and are illiterate they've been sorely neglected in both upbringing and adult life, which already calls into question just how well their family has looked out for them... and these would be the people interpreting their wishes to the outside world? You don't see anything potentially hinky in that?

I read all these sorts of media accounts with a large grain of salt because it's painfully apparent that much is left out.

[Dartzap]

From the articles I have read, the key phrase I have been seeing alot is 'significant other health problem' which can cover any number of issues. Although it is odd that neither suffered constant or consistent pain, which is a common cause for people to want to go through with assisted suicide. The fact that it has taken two years for this to be allowed suggests that the doctors concurred with their patients view, which usually means they were deemed to be of sound mind (not sure how that works if they had their own secret handshake language, mind)

I've sadly encountered more than a few people commit suicide who have felt helpless and feel they have no control over their own lives, and it is very hard to convince them otherwise.

[Scrib]

I don't care? Maybe they could have pushed through it, maybe they just didn't want to. That's fine.They might not have thought that it was worth it.

EDIT: They should have been informed of the alternatives but they probably were, they just didn't care.

[Spekio]

What, if any, attempts were made to alleviate their suffering by means other than death? Death is NOT the only "solution" to disability.

If I were to find out that yes, such attempts had been made over the course of several years and alternatives had been exhausted that would change my outlook on this but as it stands I have far too many questions to be complacent with this outcome.

Considering that in this case it was no suicide, but euthanasia, I assume there is a procedure to be followed. Also, I never said death was the only solution.

Doctors do not have to blindly follow the wishes of patients. It's entirely legitimate for doctors to offer alternatives, discuss pros and cons of alternatives, and to try to persuade a patient to follow what, in the doctor's educated opinion, is the least harmful of alternatives.

I never said they did. This is not some rogue doctor acting on his own. The article states that "Euthanasia is legal under Belgian law if those making the decision can make their wishes clear and are suffering unbearable pain, according to a doctor's judgement." I´m sure no medic would consent to that lightly.

As I have already stated, MOST people facing severe disability manage to adapt to the situation and often rate their quality of life higher than their doctors do. Was this even attempted here? It's a very important question to ask. Most deaf blind people with adequate support (which is less than many suppose once initial rehab is over) want to live. Most quadriplegics want to live. Hell, even a lot of people with locked-in syndrome want to live (I know such a man who is an active member of one the other message boards I frequent). Until a real attempt is made at rehab no, I don't accept death as an alternative.

Were there other confounding factors here? For example - STRICTLY hypothetical - if these brothers also had something like diabetic neuropathy resulting in highly diminished sense of touch in their hands that would clearly make being deaf blind much, much worse and truly cut them off from most potential routes of communication, which would make a stronger case for the situation being intolerable. Yet there is no mention of anything like that, just a vague "other medical problems".

Again - why did these twins have only and exclusive sign language between themselves and their family rather than one of the more common sign languages? That would restrict interpreters to only immediate family, and require training for those people to act as deaf blind interpreters. Why? This makes no sense in the modern world, in a place as civilized as Europe. That also calls into question just how certain the doctors are of the twins' wishes as there would be no way to bring in an outside interpreter to objectively report the twins wishes or discuss things with them. Everything has to be filtered through close relatives who may or may not have their own agenda or bias in either reporting the twins' thoughts or communicating medical information to them. Was Sign their only means to communicate, or could they read and write some language as well? If they were illiterate (which would, again, be bizarre in this day and age but could happen) that would further complicate rehabilitation and communication as deaf blind people.

No, I won't accept "these poor boys were facing a second devastating sensory disability and it's OK for them to be killed" (because this wasn't suicide, it's been repeatedly called "euthanasia" - if they wanted to die why did they need someone else to kill them rather than using assisted suicide?) without more information. If they have only a limited sign language and are illiterate they've been sorely neglected in both upbringing and adult life, which already calls into question just how well their family has looked out for them... and these would be the people interpreting their wishes to the outside world? You don't see anything potentially hinky in that?

I read all these sorts of media accounts with a large grain of salt because it's painfully apparent that much is left out.

Stop the strawman fallacy please. I agree that some people facing severe disability manage to adapt to the situation. On the other hand, some people won't. If they can get approvals form the doctors and the state, how can you deny them the right to end their lifes on their terms?

[SomeDude]

1) Doctors have considerable discretion. These two were refused by the first doctor they made the request to, and had to look for a doctor who was prepared to do the procedure.
2) People who want to end their lives should have the right to end their lives, in a proper environment that limits the risk of complications. The help of a medical doctor is essential, here.
3) Just because you believe that people who are both deaf and blind can lead fulfilling lives doesn't mean the brothers agreed. Maybe you could. (I'm not sure I could.)

[Terralthra]

As an aside, Broomstick, Deaf people and sign linguists tend to make a distinction between "signs" which have a specific linguistic meaning, and "gestures", which do not.

[Alyeska]

Deafblind people can live and can communicate with the rest of the world. Helen Keller is the most famous example.

I find their deaths to be tragic and I hold the doctor in contempt for helping them to commit suicide.

These poor men would not have been cut off from the world. There are computerized devices that make deafblind communication even easier than it was a hundred years ago.

Go fuck yourself, you sanctimonious asshole. Just because they could go on living they should be forced to? And you hold the doctor in contempt for doing his job and following the patient wishes?

Perhaps you never heard of Quality of Life, but their decision of staying alive as deaf-mutes or not is a personal decision. Neither we, doctors nor the government should have the power to keep them alive against their will, being their life - especially in this particular situation.

Suicide is an option of last resort. Since it is a rather final solution to any problem. Suicide because you are not comfortable with life is not acceptable and should never be. Someone who is depressed has a poor quality of life. That does not provide any justification for suicide.

Being deafblind is not a life ending event. People can and do adapt and still live full lives.

That doctor killed two patients who were essentially depressed over the eventual turn of their lives. They couldn't stand the thought of never seeing their twin again. Thats the definition of depression. And you don't treat depression with suicide.

[SomeDude]

These two brothers have, after careful deliberation with their physician for one and a half year, decided to kill themselves in controlled conditions. Who are you to deprive these people of that choice?

[Grandmaster Jogurt]

Not only that, but depression in the sense of "this is making me sad" and "mental disorder" are two very separate things. Suicide isn't seen as a viable solution to the latter because by our understanding the depressed individual is not of sound mind and thus incapable of soundly making such a major permanent decision.

We need to put a lot of mind into making sure we understand that those two definitions of "depression" are very different, especially since the latter is something that is often entirely unrelated to how much tragedy is in someone's life, as it's a brain chemistry imbalance.

[Cosmic Average]

Suicide because you are not comfortable with life is not acceptable and should never be.

Why not? It's their life. They should be able to decide if they want to continue it or end it. Who are you to decide whether a person's personal suffering merits suicide?

Someone who is depressed has a poor quality of life. That does not provide any justification for suicide.

Why not?

In fact, why does there have to be any justification at all?

[Ziggy Stardust]

Since nobody has made the joke yet, the twins should have learned to play pinball instead. Of course, they'd also have to go dumb ...

Anyway, the only part about this that I wonder about is whether there was some sort of psychological evaluation of the twins before being euthanized. From what the articles say about them (essentially having a secret language, still living together at the age of 45, etc.) it isn't impossible that they had some sort of disorder, which makes the ethics of this more questionable.

[Alyeska]

In fact, why does there have to be any justification at all?

Should children be allowed to commit suicide?

[Cosmic Average]

Should children be allowed to commit suicide?

Nice strawman.

Obviously I'm talking about consenting, competent adults. It's very telling that your only recourse is to resort to a logical fallacy.

[Scrib]

Since nobody has made the joke yet, the twins should have learned to play pinball instead. Of course, they'd also have to go dumb ...

Anyway, the only part about this that I wonder about is whether there was some sort of psychological evaluation of the twins before being euthanized. From what the articles say about them (essentially having a secret language, still living together at the age of 45, etc.) it isn't impossible that they had some sort of disorder, which makes the ethics of this more questionable.

If they were fucked up I would think that it would be due to them being extremely insular. I don't think that that makes you incompetent it just skews your focus.

But if there was no Psych Eval there's no way to tell.