The Tinnitus Euthanasia Story of Gaby Olthuis — Questions for Interview with Her Mother

[Hazel]

Some of you may be familiar with the story of Gaby Olthuis. She struggled with severe tinnitus for many years, until she ended her life through euthanasia. For those of you unfamiliar with her story, please see this documentary (in Dutch, with English subtitles).

We have recently been in touch with Joan van Baarle, Gaby's mother. Joan has talked about her daughter's story extensively in Dutch media, and she also wrote a book about it called "Gevangen in Geluid" (translation: "imprisoned in sound" - the book is currently only available in Dutch).

In addition, Joan started a foundation in her daughter's name, the Stichting Gaby Olthuis Fonds, with the mission of promoting research into causes and treatments for tinnitus. The foundation recently received a EUR 100.000 donation, which it passed on to the Prinses Maxima research centre in Utrecht for research aimed at avoiding the development of tinnitus in children who are being treated for cancer.

Joan has been gracious enough to agree to an interview with Tinnitus Hub. It's scheduled around Christmas time. Thus, we would hereby like to give you the opportunity to propose questions for the interview.

What would you like us to ask Joan?

In my preliminary discussion with Joan, she indicated to be open to many topics, including Gaby's euthanasia, but she wants to stay away from the broader ethical and legal discussion around euthanasia. And of course she will have veto right over any topics/questions.

Please keep in mind that Joan will likely view this thread. Be respectful and thoughtful in phrasing your questions. This thread will be strictly moderated.

 

[glynis]

Questions -
What support did Gaby get from her doctor / ENT / Mental Health and how long did she have to wait for getting help?

Would a 24-hour tinnitus support phone line had made any difference to her decision?

 

[lymebite]

As I recall from the TV interview, Gaby also suffered from severe hyperacusis. I think at one point she grimaced in pain from the sound of distant road noise of cars traveling, and commented on how it was too loud and caused her pain. But that did not get discussed too much, I think perhaps because the TV people were not that familiar with the concept of hyperacusis.

At any rate, would be interesting to learn more about how much Gaby suffered from hyperacusis. I suspect she may be not just a tinnitus euthanasia story, but a tinnitus and hyperacusis euthanasia story.

 

[TheDanishGirl]

You the man/woman!! Epic work you are doing Tinnitus Talk/Tinnitus Hub.

And great respect to Joan for doing this interview and contributing to tinnitus research/awareness.

Means the world to all tinnitus sufferers.

 

[Starthrower]

In addition, Joan started a foundation in her daughter's name, the Stichting Gaby Olthuis Fonds, with the mission of promoting research into causes and treatments for tinnitus.

I just wish I could give Joan a hug. How wonderful to start such a foundation. Stay strong Joan.

Has becoming an advocate helped your grieving process?

 

[Autumnly]

My questions would be:

• Did Gaby try TRT (Tinnitus Retraining Therapy) and if so, did it have any positive effect?
• How did her doctors react to her tinnitus worsening? (My doctors told me it wasn't possible or that it was just stress, I would like to know whether she went through something similar.)

My heart goes out to Joan. In my worst moments, my family and I discussed euthanasia as well. My mother would love to read her book, hopefully, there will be an English (or German) version... I've sent the link to Gaby's documentary to some doctors when they didn't believe me, I'm not sure they watched it but I was kind of relieved and comforted in knowing that I wasn't the only one, that I wasn't crazy.

 

[Starthrower]

I've sent the link to Gaby's documentary to some doctors when they didn't believe me

Joan your daughter's life has touched people. As you can see the link to her story is still given out around the world.

She will not be forgotten.

 

[TheDanishGirl]

I got a question now:

What was Gaby's everyday life like in those early years with tinnitus? Was she subjected to a lot of loud noise that could have contributed to the worsening of her tinnitus and hyperacusis?

I am asking this only because I would like to find out why tinnitus worsens so badly for some and how we can prevent it. I am not in any way judging poor Gaby.

 

[Ed209]

@Hazel, you're a real star and go above and beyond for the cause.

A question I would ask is this: did Gaby have any other major life issues prior to dealing with tinnitus/hyperacusis?

Was she prone to anxiety or depression before she acquired tinnitus?

It goes without saying, but thank her for her contribution towards the cause with her foundation, and for taking the time to talk to Tinnitus Hub.

 

[TuxedoCat]

Joan, if you could speak to all those who are devoting their time and effort to researching causes and treatments for tinnitus, what would you tell them about your daughter?

This is an incredibly moving story. It's clear how much Joan loved her daughter in that she would help her daily and care for her children. It could not have been easy to come to terms with and respect Gaby's decision.

Thank you for taking up the cause for research. I hope Gaby's story will help researchers to renew their sense of purpose and deepen their understanding of the overwhelming need for their dedication to studying tinnitus.

 

[JohnAdams]

I hate to say it but this is the type of attention we need. Poor woman. Poor lots of us. That makes me really sad.

 

[coffee_girl]

This is fantastic news, thank you for the update op

 

[Starthrower]

Question for Joan:

How were you personally treated when Gaby's story went public? Were people empathetic towards you?

 

[85dB T]

Dear Joan,

How long had Gaby been a swimmer? Did she depend on swimming to deal with tinnitus? How many days per week did she swim and for how long? Did she find swimming helpful and in what ways?

(I watched her video and was surprised it started with her in the pool. I currently use swimming to deal with tinnitus and stay active.)

Tinnitus is horrible. Sorry it has affected you and your family the way it has.

Thank you for taking our questions.❤

 

[Hazel]

Thank you all for the great questions so far.

Keep them coming!

 

[Jack Straw]

I have no questions, but just wanted to make sure she knows that her work in raising awareness of tinnitus means a lot to those of us who suffer from it.

 

[TheDanishGirl]

Was Gaby's hyperacusis always as bad as how it is in the video where she tells her story, or was it like her tinnitus: started milder and got progressively worse?

 

[grate_biff]

Hi Joan!

Was your daughter in contact with any medications?
Like antidepressants or benzodiazepines?

If, yes, what do you think they did for her?
Positive or negative reactions?

 

[valeri]

As a mother myself I just want to ask how have Gaby's children dealt with her death?

Would it have been harder for them and you if she committed suicide or euthanasia was "sort of ok"?

I hope she found much needed peace, poor woman

 

[uae96]

What caused her tinnitus and what made it worse?

 

[Hazel]

Hi all, I am going to keep this thread open for at least another week. I feel like there's loads more we could be asking about, so hope to hear more of your suggestions!

 

[jay777]

Hi Joan,

Even in Gaby's last few weeks of life she tried to help others by making this film, I thank her for that.

I would like to ask did Gaby try to have her auditory nerve cut?

 

[TheDanishGirl]

I am surprised there are not more questions. I personally have more:

After being granted euthanasia, did Gaby have doubts of following trough with it... or was she fully determined to do it?

How did Gaby spent the last few days of her life?

Did Gaby's tinnitus and/or hyperacusis ever fluctuate in severity? Did she have lower/better days?

 

[Autumnly]

What was the general reaction towards her case in the Netherlands?

Is there anything Gaby would have liked to say to someone with or without tinnitus?

Have other people with tinnitus in the Netherlands reached out to Joan/her foundation after Gaby's case went public? (as in did Gaby's case encourage other people to talk about their tinnitus)

Does anyone else in Gaby's family have chronic tinnitus?

Did Gaby have hearing loss?

For how long did Gaby have severe hyperacusis?

Did Gaby listen to white noise or natural sounds at home (if that was possible for her)?

 

[Bam]

Firstly I would like to commend Joan on her incredible bravery and empathy. If only we all had mothers with such selfless compassion.

In the documentary Gaby had secured a lethal powder from China... Would you have supported her in taking her own life at home if her euthanasia had been declined by doctors?

 

[Autumnly]

I just found this interview (28th October, 2017) and felt like sharing it. It might already answer some questions but I thought it might also help to come up with new ones. Google Translate under spoiler.

Spoiler

Working, shopping, playing with her children, going to a birthday, watching television or calling a friend. Everyday things were Gaby, the daughter of 71-year-old Joan van Baarle, too much. Because of ringing in the ears, the smallest sound was incredibly painful. After 13 years with tinnitus, also known as tinnitus, Gaby could not continue. She asked for euthanasia and nine months later she finally got the silence she yearned for so long. Mother Gaby wrote in the book 'Caught in sound' about the struggle with tinnitus from Gaby and many others.

Bomb explosion
"She was 31 years old and lived in Yemen with her husband and baby when there was a bomb explosion in the supermarket near their house. A huge hard bang. Here the tinnitus started, but it worsened by two more factors. Five years before her death, she made a fall that made her fall hard on her head. Furthermore, she was a musician, a profession where tinnitus is also common. Many people with tinnitus also develop hyperacusis and people with hyperacusis often get tinnitus. That was also the case with Gaby. All sounds are then intensified. The closing of a door can then already be so painful. "

"It started at Gaby with an occasional beep. Then it took a little longer, and a bit longer until it did not go away. Over the years, a buzzing sound, hiss and a pulsating sound were added. "

Everything tried
"No treatment helped or alleviated the severity of the tinnitus. She had tried everything. Tinnitus masks, which are small hearing aids that produce a counter-sound. You have to wear it 24 hours a day. She did Tinnitus Retraining Therapy. That is a combination of the masks and cognitive behavioral therapy in which they try to reduce the fear of noise. Magnetic stimulation in which shocks are sent through the brain also did not provide relief. She has also been to a doctor in Israel who spent years researching tinnitus in soldiers. He has a six-week program with special vitamins and minerals. The doctor was very surprised that this did not help Gaby either. "

Living on a stamp
"She called her situation as life on a stamp. It was so limited. She could not make a call, did not go shopping, did not go to the cinema or a concert, sitting outside did not work either. She could no longer take care of her children. When someone laughed softly it was already too much, everyone kept quietly in front of her. "

End of life clinic
"It was 2012 that I saw that it was getting worse with Gaby. It did not work for her anymore. I was afraid she was going to do something to herself. She started on euthanasia herself. I did not want to lose my child, but I did not want to see her suffer. There were no arguments why she should continue to live. There were no other solutions. I supported her to a good end out of love. I had no judgment, I could only go on the road. "

"Through the NVVE (Dutch Association for a Voluntary End of Life, ed.) We came to the Levenseindekliniek. A careful process has been set in motion. This has lasted nine months and March 1, 2014 was the day of her euthanasia. I was not there myself. She could not have my grief either. Later I understood that it was a sign of her great love for me. That morning I got a Whatsapp with the message that she loved me. She had taken the deadly drink at 2:55 PM. She finally had peace. "

Commotion
"Just before her death a documentary about Gaby was released, which in addition to many positive reactions also caused commotion. There was criticism that the euthanasia had not been done carefully, but I now have something like 'too bad, but it can not be done again'. Health workers said their office hours were crowded, because people were afraid that tinnitus would become just as bad with them. Fortunately, that negative publicity ebbed away again. "

"I have already accepted it from the moment she called in the End-of-Life Clinic. That is not to say that I sometimes have difficulty with it. Writing the book forced me to dig deeper into my feelings. The editor of the publishing house has taken me back to the desperation and grief of that time. I will soon be going through India for six weeks with my granddaughter to recover. "

Foundation
"With my book I especially hope to make clear to the youth what hard music can do. At a certain moment that beep does not go away anymore and then it is too late. Currently, about 1.2 million Dutch people have tinnitus and there are no treatments that cure it. Moreover, you can also get it by medication, chemotherapy, a virus or motorcycling. I set up the Gaby Olthuis Foundation to raise money for more research into the cause and treatment of tinnitus. "

 

[Tinnitus Talk]

A reader sent the following comment / question wanting it posted anonymously;

In the documentary, a quick mention was made that Gaby studied clarinet at conservatory.

So many musicians have noise-induced ear problems. Was Gaby aware that her music exposure was likely a large factor in causing tinnitus and hyperacusis?​

 

[GregCA]

"How did she manage to make her case given that it's an invisible condition?"

I'd like to learn about the arguments that swayed the panel, because they could perhaps be arguments useful towards general awareness efforts.

 

[Autumnly]

Having read the interview, I wanted to add a few questions:

It said she was a musician, what kind of musician was she?

There were two incidents stated which worsened her tinnitus (head injury and being a musician), were these the "only" incidents that worsened her tinnitus (was her tinnitus stable in-between)?

It says Gaby tried TRT and tinnitus maskers which didn't seem to help much and it also sounds like her hyperacusis worsened over the years. Did she try white noise for her hyperacusis when it was severe?

And I have another question, but it might be a bit more on the sensitive side… I saw comments under articles about Gaby by people with severe tinnitus saying they couldn't understand how someone could not cope with it and that euthanasia shouldn't be an option for people with severe tinnitus. Does Joan have anything to say to these people?

 

[Tinker Bell]

I am curious regarding her family support. I watched her interview and read the above article as well as others. Her husband is mentioned only once in reference to her at one point living with him in Yemen. He is not mentioned again. Were they divorced? Was there any emotional and mental stress as a result that further compounded her tinnitus and hyperacusis?