Voluntary Assisted Dying / Euthanasia for Tinnitus Patients (Pegasos Swiss Association, Switzerland)

[Brian P]

You obviously do not know how debilitating tinnitus can be to a person's mental and emotional wellbeing, otherwise you would never write such a statement. When tinnitus is severe and this is sustained, it can seriously affect a person's mental health to the point they want to end their life. I do not condone VAD for tinnitus or any other medical condition. However, I do understand when a person has reached the end of their tether and they cannot bear the distress, of the cacophony of noise in their head and ears and all they want is peace. The most recognized treatments for tinnitus at the moment are: counselling, sound therapy, medication and relaxation techniques. One or a combinations of these treatments can be helpful but there is no guarantee.

You have to have been there to understand, the reasons someone wants to pursue their early demise.

Michael

The problem with these tinnitus "therapies" is that none of them actually work! Might as well go to a witch doctor.

 

[Wrfortiscue]

The problem with these tinnitus "therapies" is that none of them actually work! Might as well go to a witch doctor.

They do work, for mild cases lol

 

[Michael Leigh]

The problem with these tinnitus "therapies" is that none of them actually work! Might as well go to a witch doctor.

I think you are being very unfair to doctors, audiologists and hearing therapists that work with tinnitus patients to have a better quality of life. The treatments I have listed help a lot of people affected by tinnitus but they are not cures. I note that your tinnitus is caused by Meniere's disease. Medicines can be prescribed to help control vertigo, nausea and vomiting caused by this condition which has to be a good thing.

Michael.

 

[Michael Leigh]

The problem with these tinnitus "therapies" is that none of them actually work! Might as well go to a witch doctor.

I think you are being very unfair to doctors, audiologists and hearing therapists that work with tinnitus patients to have a better quality of life. The treatments I have listed help a lot of people affected by tinnitus but they are not cures. I note that your tinnitus is caused by Meniere's disease. Medicines can be prescribed to help control vertigo, nausea and vomiting caused by this condition.

Hearing aids with or without white noise can help with hearing loss. The white noise can help to distract the brain from focusing on the tinnitus.

Counselling, sound therapy and medication can help a person with noise induced tinnitus who may also have hyperacusis. I had TRT for two years to treat tinnitus and hyperacusis. This involved regular counselling with my hearing therapist and wearing white noise generators for up to 10 hours a day. At the end of treatment the tinnitus reduced to a very low level, for most of the time I was unaware of it.

The hyperacusis was completely cured and remained this way even after a second noise trauma in 2008. The tinnitus returned with a vengeance but the hyperacusis did not. The tinnitus changed to variable with large fluctuations in intensity from: complete silence, mild, moderate and severe. Whenever the tinnitus is severe it might not always reduce by itself, I find Clonazepam immensely helpful in reducing the severity to more tolerable levels in 2 to 12 hours. I was prescribed Clonazepam in 2010 and fortunately haven't had any problem with it, it is only taken about every 4 to 6 weeks for usually one day, then stopped.

ETD and other medical conditions that affect the auditory system and cause tinnitus, can be relieved with the help of medication or sometimes an operation.

Michael.

 

[AfroSnowman]

I think you are being very unfair to doctors, audiologists and hearing therapists that work with tinnitus patients to have a better quality of life. The treatments I have listed help a lot of people affected by tinnitus but they are not cures. I note that your tinnitus is caused by Meniere's disease. Medicines can be prescribed to help control vertigo, nausea and vomiting caused by this condition which has to be a good thing.

Michael.

I kind of agree and kind of don't. The treatments that exist help with mentally and emotionally adapting to this condition which does improve the quality of life but, not so much on treating the condition itself.

My personal experience as someone whose tinnitus was fully caused by a physical trauma and has tried a variety of available treatments, is that I've found them basically ineffective including from a QoL perspective. All of my QOL 'improvements' have been from a combination of a degree of habituation over time, development of coping strategies, a reduced expectation for my QoL, and a general increase of my capacity for bearing pain.

Though I wouldn't frame it so harshly as ENTs/audiologists being no better than witch doctors for tinnitus, I am not so sure it is so far from the truth. If you believe in the witch doctor, the act of getting treatment would probably significantly help to mentally and emotionally adapt to the condition, much like the standard of care treatments available to us today. Sound therapies/TRT (which I believe have statistically identical outcomes) and CBT help some cope better, but I am sure that traditional healers have helped people cope better too. Placebo is a powerful drug no matter its source.

 

[Michael Leigh]

I kind of agree and kind of don't. The treatments that exist help with mentally and emotionally adapting to this condition which does improve the quality of life but, not so much on treating the condition itself.

You are entitled to your opinion. Tinnitus is usually a symptom that something has gone wrong within the auditory system. In the case of noise induced tinnitus, which is one of the most common causes of the condition, it is the tiny hairs attached to the cochlea in the middle ear that have been affected by noise trauma. The cochlea sends a distress signal to the brain that something has gone wrong. The part of the brain where the distress signal is located and manifests itself as tinnitus is known as the limbic system. The limbic system controls our emotions: love, hate, fear etc. It is here the tinnitus lives and cannot be separated from our mental and emotional wellbeing.

Although many people can successfully habituate to tinnitus without treatment, there are some that can't and require professional help to achieve this. Hyperacusis or having some oversensitivity to sound often accompanies noise induced tinnitus. This too can improve by itself, however, if it doesn't professional help is usually required otherwise oversensitivity to sound can become a long term problem. This will often manifest itself as spikes in the tinnitus and other problems can develop that I have covered in my thread: The Complexities of Tinnitus and Hyperacusis.

Therefore, counselling, sound therapy, hearing aids and medication can be very successful helping a person habituate to tinnitus and improving or curing hyperacusis. Whilst the physical injury to some of the tiny hairs attached to cochlea cannot be repaired, the distress signal sent to the brain and decoded into tinnitus can be habituated to, naturally or with the help of professional treatment.

@Brian P's remarks towards medical professionals that help tinnitus patients were disparaging and untrue, that is what I was addressing.

Michael

 

[Brian P]

This isn't treatment. It's doctors and audiologists trying to sell hearing aids and pseudoscientific treatment to desperate people. TRT has no evidence of benefit.

 

[DaveFromChicago]

To BobDigi:

Are you familiar with the now famous case of Gaby Olthuis?

If you aren't, Google it. She was a woman in her mid-forties from the Netherlands who after two requests had a physician visit her at home to administer a lethal drug.

This was only done after a panel of Doctors approved such a request. In the Netherlands TV segment about her they played an example of the four-tones monstrous sound she heard 24/7 (and however bad mine gets, I could not have withstood hers for one hour).

And please don't infer that she was some sort of unresourceful wimp; with granitic fortitude she bore this ever--worsening condition for 13 years.

Did it ever occur to you just how incomprehensively fatuous your comment about "chopping off your foot to "stump" (and by the way, it's "stub") your toe" would sound to this Panel of Physicians who approved this euthanasia request?

Remember that it required two requests from her to receive approval, but this only emphasizes the care and consideration they gave in ultimately appreciating the soul-destroying enormity of this condition and the subsequent justification for euthanasia.

 

[TracyJS]

Even suggesting someone could end their life over tinnitus is not only irresponsible but it's also pathetic. People read these melodramatic posts, who are looking for serious help and advice. Not silly posts about the idea of ending their life. It's like chopping your foot off because you stumped your toe.

What is wrong with you?

Who are you to judge another's pain or decide the validity of another's suffering?

Your comments are ignorant, dismissive, offensive, disrespectful, and amazingly arrogant.

Please leave this thread. You do not belong here.

 

[Ondine]

Get a grip. Euthanasia for tinnitus is absolutely ridiculous.

I had prepared a very long answer in my mind, but it would be such a waste of my time and energy to talk to you that I don't even feel like writing it. People thinking about euthanasia are heartbroken enough without having to endure the harshness of such inhumane words. Whatever happened to you to show such a lack of compassion and empathy to fellow tinnitus sufferers and human beings, I don't even care to know. I hope the day will come when you realize the depth of your own cruelty and be ashamed of yourself.

Please leave this thread and Tinnitus Talk altogether if disregard for our pain is all there is to you.

 

[catchthebus]

I read through the recent backlash comments and I just wanted to say that you are all amazing people! I'd do anything to not have tinnitus, but at the same time it's truly an honor for me to be a part of this wonderfully compassionate community and I'd stay here even if my tinnitus could miraculously disappear. You all really understand just how hard and how painful it can be to keep going with this condition and how unpredictable, terrifying, and debilitating it can be. I'll always be rooting for you. You're all amazingly strong and deserve the best. I'm sorry that tinnitus even exists in the first place. And I'm sorry that some people can't understand what we go through and just how hard we have to work to find ways to cope and overcome in spite of it. It's taxing and takes great strength and courage. If anything, we all deserve immense compassion and all the support we can get since for most of us, tinnitus is not easy or pleasant or escapable.

 

[Johan001]

I believe @BobDigi meant well, it's just that it's been rather harshly phrased, especially considering our emotional trauma that's been brought up by this affliction and for many, myself included, also the gaslighting from doctors. We need to be more compassionate in our words towards each other.

Every person's experience with any ilness is unique and some cases are unfortunately very severe.

The whole suicide/euthanasia is such a touchy subject, especially for people who are battling these thoughts right now, that we must be very careful in what we say to each other, which others will also read.

I just wish that everyone who's suffering with this, finds the way to live a normal life.

 

[Pau Marti]

Hi everyone. I've just come across this forum and this thread in particular in which VAD is being mentioned several times.

I helped my brother a few years ago. He started suffering severe tinnitus in 2002. No apparent or discernible cause. He struggled badly the first two years, afterwards somehow he was able to cope with this awful condition. However, his tinnitus became unbearable over the years. We took the most difficult decision ever. But it was necessary otherwise my brother would have ended up taking his own life and we couldn't stand watching him suffering.

He applied for VAD and got the approval shortly after. I am now crying writing this but it was a no brainer decision when we made the decisive move. My brother died peacefully and by doing so he finally got rid of this nasty and torturous condition.

I won't post more details regarding the whole thing but if someone has any doubts or questions when it comes to applying VAD, I won't have any problem answering or shedding some light on the subject here.

RIP Mike, we love you.

 

[ajc]

if someone has any doubts or questions when it comes to applying VAD, I won't have any problem answering or shedding some light on the subject here.

Sorry for your loss.

It would be helpful to have some information from you... Did your brother use Pegasos? Did it cost €10,000? Were you able to be next to him when he had the drink? Was the medication in a drink? Were there any employees of Pegasos, or doctors, there or were you able to be alone with your brother in his final moments? How long did it take for you to get his ashes afterwards?

Did he only have tinnitus as the reason for the VAD? How long was the process from applying to peacefully passing away? Did he have to send some documents to Pegasos from his home country? I take he wasn't from Switzerland?

 

[UKBloke]

Hi everyone. I've just come across this forum and this thread in particular in which VAD is being mentioned several times.

I helped my brother a few years ago. He started suffering severe tinnitus in 2002. No apparent or discernible cause. He struggled badly the first two years, afterwards somehow he was able to cope with this awful condition. However, his tinnitus became unbearable over the years. We took the most difficult decision ever. But it was necessary otherwise my brother would have ended up taking his own life and we couldn't stand watching him suffering.

He applied for VAD and got the approval shortly after. I am now crying writing this but it was a no brainer decision when we made the decisive move. My brother died peacefully and by doing so he finally got rid of this nasty and torturous condition.

I won't post more details regarding the whole thing but if someone has any doubts or questions when it comes to applying VAD, I won't have any problem answering or shedding some light on the subject here.

RIP Mike, we love you.

First and foremost, please let me offer my condolences to you and your family. Tinnitus really can be a vengeful and unremitting condition that tests sufferers to the limit. Therefore it's always heartbreaking to learn about our brothers and sisters who simply cannot take it anymore. We have in fact, also had members on this forum commit suicide just a couple of years ago, so the reality of the situation is in very sharp focus for us all here.

Regarding Mike's VAD I'd like to ask you the following. It appears that he may have suffered with tinnitus for upwards of 20 years? Presumably he had been under the care of a GP, ENT, and audiologist? What was the level of care he received from them and did they offer any treatment? If they did offer Mike treatment, which treatment did he try? Presumably the VAD clinic took all of this into account?

 

[Pau Marti]

Sorry for your loss.

It would be helpful to have some information from you... Did your brother use Pegasos? Did it cost €10,000? Were you able to be next to him when he had the drink? Was the medication in a drink? Were there any employees of Pegasos, or doctors, there or were you able to be alone with your brother in his final moments? How long did it take for you to get his ashes afterwards?

Did he only have tinnitus as the reason for the VAD? How long was the process from applying to peacefully passing away? Did he have to send some documents to Pegasos from his home country? I take he wasn't from Switzerland?

Hi ajc.

Absolutely, you need to submit several documents. In our case, we collected all the medical documents we got since his tinnitus onset. It was a little bit tedious that process in particular, you know, several clinics involved, certain information / documents were a little bit tricky to retrieve, some bureaucracy issues along the way but eventually we provided as much information as possible.

Tinnitus was the reason of his VAD request. He suffered some hearing loss over the years in some frequencies but was not quite significant.

Initially we made the first payment and once the VAD application was successfully approved, we made the second payment shortly afterwards. Something like €10,000 (plus all the fees due to bank transfers). However, that amount of money might slightly differ in some specific cases.

Pentobarbital, a powerful barbituric, is the substance used, you can either take it orally or intravenously. My brother opted for the second option. Definitely you can spend the last moments with him but there's staff around you monitoring and watching the process. My brother actually administered himself the drug by turning a small wheel attached to the cannula. I highly doubt that the protocol has changed since then. I assume you are not allowed to be completely alone in order to avoid any assistance. As far as I know, if you take the drug orally it takes longer but I have no idea how does it work that way. My brother passed away really quickly, in less than a minute he became unconscious and was pronounced dead in a few minutes.

I am not from Switzerland and the VAD application was entirely made online. The whole process was relatively short and very straightforward. One thing that kind of surprised me was the fact that Pegasos at some point, roughly halfway through the whole process, subtly made think us twice about our decision by not responding for several days... I definitely read along the lines they wanted to make completely sure we were firm in regards to VAD.

I was sent the ashes in less than two weeks.

Hope I have clarified some of your questions.

Regards.

 

[Pau Marti]

First and foremost, please let me offer my condolences to you and your family. Tinnitus really can be a vengeful and unremitting condition that tests sufferers to the limit. Therefore it's always heartbreaking to learn about our brothers and sisters who simply cannot take it anymore. We have in fact, also had members on this forum commit suicide just a couple of years ago, so the reality of the situation is in very sharp focus for us all here.

Regarding Mike's VAD I'd like to ask you the following. It appears that he may have suffered with tinnitus for upwards of 20 years? Presumably he had been under the care of a GP, ENT, and audiologist? What was the level of care he received from them and did they offer any treatment? If they did offer Mike treatment, which treatment did he try? Presumably the VAD clinic took all of this into account?

Thank you so much for your kind words UKBloke. Agreed with your words. Tinnitus pushes sufferers to the limit and crushes both your soul and body. I completely understand some people couldn´t cope with this awful condition and commited suicide.

In regard to your question, yes, my brother suffered tinnitus for quite a long time, almost two decades. The level of care he received from them was abhorrent, unprofessional and utterly disappointing. He went to the best ENTs and audiologists of our country but to no avail. The first years he underwent different treatments and approaches, such as taking Trimetazidine, B12 injections, benzodiazepines, Thiethylperazine, etc. as well as he underwent MRIs, audiometry tests, etc. He also tried some hearing aid maskers back then but somehow were ineffective or they didn´t make the adjustments properly.

Fortunately, he improved towards the second year after he stopped taking all those nasty drugs, most of them ototoxic (Thiethylperazine was pulled from market more than 10 years ago and Trimetazidine is no longer prescribed for tinnitus). He still was having bad days but definitely there was an improvement overall.

Over the years, he suffered several setbacks and short spikes but his tinnitus was quite manageable and much less intrusive.

Unfortunately for him, and since 2014/2015, he started to experience awful spikes, different tones and a higher severity of his tinnitus. His last two years were really brutal.

I am going to be honest... I don´t think VAD clinic took the whole thing into account. Even though we tried to retrieve and collect as much information as possible in terms of documents, treatments, medical reports, etc. we didn´t gather a huge amount of documents in total. However, his last medical report proved to be crucial. Up until that moment, no doctor/ENT had stated that my brother was literally "suffering". By reflecting how severe, brutal, intrusive and invasive his tinnitus was, that particular report was explicitly indicating the suffering and the agony he was enduring.

Regards.

 

[UKBloke]

Thank you so much for your kind words UKBloke. Agreed with your words. Tinnitus pushes sufferers to the limit and crushes both your soul and body. I completely understand some people couldn´t cope with this awful condition and commited suicide.

In regard to your question, yes, my brother suffered tinnitus for quite a long time, almost two decades. The level of care he received from them was abhorrent, unprofessional and utterly disappointing. He went to the best ENTs and audiologists of our country but to no avail. The first years he underwent different treatments and approaches, such as taking Trimetazidine, B12 injections, benzodiazepines, Thiethylperazine, etc. as well as he underwent MRIs, audiometry tests, etc. He also tried some hearing aid maskers back then but somehow were ineffective or they didn´t make the adjustments properly.

Fortunately, he improved towards the second year after he stopped taking all those nasty drugs, most of them ototoxic (Thiethylperazine was pulled from market more than 10 years ago and Trimetazidine is no longer prescribed for tinnitus). He still was having bad days but definitely there was an improvement overall.

Over the years, he suffered several setbacks and short spikes but his tinnitus was quite manageable and much less intrusive.

Unfortunately for him, and since 2014/2015, he started to experience awful spikes, different tones and a higher severity of his tinnitus. His last two years were really brutal.

I am going to be honest... I don´t think VAD clinic took the whole thing into account. Even though we tried to retrieve and collect as much information as possible in terms of documents, treatments, medical reports, etc. we didn´t gather a huge amount of documents in total. However, his last medical report proved to be crucial. Up until that moment, no doctor/ENT had stated that my brother was literally "suffering". By reflecting how severe, brutal, intrusive and invasive his tinnitus was, that particular report was explicitly indicating the suffering and the agony he was enduring.

Regards.

Thank you for taking the time out to fill in these gaps. It's evidently been a dreadful situation I really do hope you and your family eventually find peace. I'm sure you will. All of us here understand.

 

[DaveFromChicago]

In regard to your question, yes, my brother suffered tinnitus for quite a long time, almost two decades. The level of care he received from them was abhorrent, unprofessional and utterly disappointing. He went to the best ENTs and audiologists of our country but to no avail.

Notice that @Michael Leigh quite pointedly avoided the recognition of this most unadorned, frankest of assessments.

@Bam was a poster who I very much admired, and he quite pithily summed up the abovementioned remarks as follows:

"The response among the Medical Community for this condition just stinks at every level."

He wrote this during 02/2019, and it was every bit as much in evidence then as it is today.

@Pau Marti's reports were among the most real, valuable accounts that I have received on Tinnitus Talk during the last three years.

 

[Pau Marti]

@Tatsopa, it´s not necessary to be evaluated by their own psychiatric team. At least in our case it wasn´t.

@TheDanishGirl, definitely they do for tinnitus (not quite sure if they do just for hyperacusis). They usually don´t for chronic mental illness (at least a few years ago).

@roy1159, medical documents don´t have to be in English necessarily. The conditions you mentioned are valid but other factors might be decisive as well.

@canteven, the whole application process is through their website. You need to submit certain documents, complete the required information and then make the initial payment. Just a few weeks after, they contact you in order to inform you whether or not the VAD gets through. As simple as that. I guarantee you that tinnitus is a valid condition for VAD but keep in mind that other factors might play a role in the whole process. Medical reports are needed.

@catchthebus, our experience with them was utterly fantastic. The process was simple, easy and straightforward. They subtly make you think twice when it comes to make the decisive move. They were professional and extremely helpful. I spent 7 days in Switzerland with my brother prior to the VAD date. We grew up together and I was with him until the last moment. I'll never be back to Switzerland though, those memories still haunt me.

Thank you so much for your kind and sincere words @UKBloke and @DaveFromChicago.

Kind regards.

 

[danielthor]

Apparently you have to pay up front and the waiting is months. I want to have suicide as a backup. €10k is a commitment to dying. I can't back out if I was to suddenly get better, because then I would lose that money.

 

[ajc]

I can't back out if I was to suddenly get better, because then I would lose that money.

That's very stupid. Why care about the "lost" €10k if you get better? You'll save that up again in future and you get to enjoy life.

If you got better, would you really still proceed with killing yourself just so in your final moment you can think "yay, got my money's worth"?

 

[danielthor]

@ajc, no lol, you're right. I don't think I meant it like that. My point is just; you have to be 100% sure you're not gonna get better when you pay that much money, and I probably never will be sure no matter how bad it gets because of my stupid survival instinct / programming. If I do reach the point where I have to get out, I will have to wait 3-4 months of horrible hell for the doctors to clear my case instead of just going straight into it. If only it was enough to just pay some of the money for the clearance, and the rest at the actual procedure.

My case is specifically problematic because it's degenerative. It's degenerative, and yet I have hope. In 3-4 months time I will undoubtably have become worse, but I might also have found a cure. I don't want to reach a point where I literally can't wait 3-4 months to die.

 

[Pau Marti]

Apparently you have to pay up front and the waiting is months. I want to have suicide as a backup. €10k is a commitment to dying. I can't back out if I was to suddenly get better, because then I would lose that money.

Not really, it took us just 4-5 weeks to get the approval but definitely it might take more time depending on each case. You pay the initial deposit and later you make the 2nd payment once you get the VAD approved. Not sure if the whole thing remains the same though.

 

[danielthor]

@Pau Marti, ok thanks. I may have been too quick.

How much did you pay in deposit?

 

[Joey72]

I wish I had the guts to just do it.

 

[Pau Marti]

How much did you pay in deposit?

Hi Daniel. First of all, I'm not sure whether or not payments, deposits, etc remain the same nowadays. When we applied for VAD the initial payment was €5,000 plus the fees courtesy of our bank. In a matter of a few weeks we received a short email. VAD was approved. Then we made the second payment (€5,000).

Regards.

 

[TheDanishGirl]

Hi Daniel. First of all, I'm not sure whether or not payments, deposits, etc remain the same nowadays. When we applied for VAD the initial payment was €5,000 plus the fees courtesy of our bank. In a matter of a few weeks we received a short email. VAD was approved. Then we made the second payment (€5,000).

Regards.

If the VAD was not approved, would the deposit have been refunded to you? Do you know about that? That's what I am worried about.

 

[danielthor]

@TheDanishGirl, have you heard about Svend Lings? I'm considering calling him.

 

[Pau Marti]

If the VAD was not approved, would the deposit have been refunded to you? Do you know about that? That's what I am worried about.

I never asked them about that. We just sent the application and we attached the required documents / information. However, I remember they mentioned in their website that if VAD was not approved or even cancelled for whatever reason, you got the deposit back but they might charge you a fee. And I'm convinced fees out there are not cheap ones.