John Walker: The Belgian Twins, Euthanasia and the Myth

Mythology has a little bit of truth and not the whole truth. It comes with a hero, a victim and a villain.

Just like the ‘father of history’, Herodotus, who took the stories of the soldiers in Ancient Greeco-Persia wars and turned them into grand tales of battles won and heroes fallen. But Herodotus is also known as the ‘father of lies’ because he created myths. The stories possibly represented real people and events but it has been covered in a cloak of glamour to make it appeal to the masses.

Last week, we had such a story in the national press. It is the tale of Belgian twins, who were euthanised on December 14th, 2012. Their names were Marc and Eddy and they were ill with spinal problems, heart issues, and glaucoma (Many Tribes blog). But this story was written in a different way:

Deaf twins who discovered they were going blind and would never see each other again are euthanised in Belgian hospital. (Daily Mail, Jan 14th, 2013)

Belgian identical twins in unique mercy killing (The Telegraph, Jan 13th, 2013)

The latter story referred to the Socialist Party member, Thierry Giet, who has tabled a new amendment to the euthanasia law (since 2002) that will allow people with specific conditions to be euthanised, if it is passed.

It was easy to construe that deafness and the potential onslaught of blindness caused by glaucoma were viewed as potential conditions that would fall under the amendment. And this news went viral.

The Deaf community, deaf blind people and Deaf academics started to throw questions to object to or clarify the messages in the press. As it is always with the press, the messages are confused and sometimes false links are created. There is also confusion on how people are euthanised and what are the true reasons for the twins’ plea to the state.

In fact, the twins died happily.

 “One had respiratory symptoms which meant he could only sleep sitting upright, the other had undegone a neck operation because a spinal cord was damaged and he could hardly walk. There was not only psychological suffering. They were indeed suffering physically.

“For the last half dozen years specialists were consulted in order to improve their physical condition, but this solved nothing. Many medications could not be used due to the fragile state of their eyes.

“In recent months they did not come out, they ate almost nothing. Each week I [the doctor] received a letter from them in the letterbox in which they clearly indicated that they wanted to die. During the home visits it was strongly suggested that they would deprive themselves of life if ever their request for euthanasia was not granted.

“In short, the doctor says: They were so determined that we were compelled to make decisions.” (Belgian article in De Standaard translated by Thierry Haesenne)

As you can see, there is no mention of deafness or blindness. The story was warped into a commercially viable story for the Belgian press in the context of Giet’s amendment to the euthanasia law.

The news originated in a Flemish newspaper, Het Laaatste Nieuws (the lastest news), which quoted the statement, “they could not bear the thought of not being able to see each other again”. The specific condition was elicited from the story and purported as a potential ‘specific condition’ Giet might be referring to.

Professor Wim Distelmans, the doctor that took the decision to euthanise the twins, defended his decision.

“It’s the first time in the world that a ‘double euthanasia’ has been performed on brothers,” he said. “There was certainly unbearable psychological suffering for them. Though there is of course it always possible to stretch the interpretation of that. One doctor will evaluate differently than the other.” (The Telegraph, Jan 14, 2013)

But the Telegraph continued to relate the professor’s statement to the amendment:

“Last month, Belgium’s government announced plans to amend the law to allow the euthanasia of children and Alzheimer’s sufferers. If passed, the new law will allow euthanasia to be ‘extended to minors if they are capable of discernment or affected by an incurable illness or suffering that we cannot alleviate’.”

Somehow, I feel that Belgium is starting to walk into dangerous territory. If a person has Alzheimer, the person may already be in the late stages of the illness, it would be very difficult for the person to state their desire to be euthanised. Also, doctors are able to diagnose an illness and suggest possible routes to therapy, surgery or medication that can alleviate the condition – at what point do they become experts about the ‘quality of life’. Are they the best people to advise?

Despite this, I am reassured the system is complex and it is not easy to be selected for euthanasia:

In order to be euthanised, a person must repeatedly ask for mercy killing, see at least three different doctors (one of them should be the GP) over a time span long enough to convince the doctors that it is not just a passing fad. He must convince them that he is suffering unbearable pain that cannot be alleviated. Then the doctors must write a report which will be signed by the patient before being passed to a psychiatrist who will meet the patient several times. Then, if all 4 (doctors and psychiatrist) give their approval, the request is forwarded to the ethical commission at the hospital where the patient wishes to be euthanised. Several doctors are on this commission and the vote must be unanimous. If ever ONE of them does not give his approval, the patient’s request is automatically denied. (Thierry Haesenne, fb comment, Jan 15th, 2013)

The process is difficult and lengthy, and the applicants may not be willing to wait that long; many do commit suicide before the final decision is made.

So where is the story. Is it about the twins? Is it about Giet’s amendment? Or is it about the press romanticising the story? What we do know is that the tale of the twins is very different from the story purported in the press, so we can take that out of the equation. The twins got what they wanted, no matter how much we feel it is right or wrong. It was most probably little to do with deaf blindness but more about their long term experience of illness.

The press has a lot to answer for. They have peddled the story by selecting a few facts and mixing it with glamour to create a myth. The myth is on the backdrop of Giet’s amendment and the press created a news item with a political agenda; that myth has got nothing to do with what actually happened to the twins.

But then I am left with the medical profession, who comes together to decide whether the individuals who wish to be euthanised should be supported or refuted. Professor Distelmans’ reference to ‘psychological trauma’ as the justification of euthanasia cast a doubt in my mind whether the twins received the support they needed.

In the little collaboration I have with universities in Belgium, I was made aware of a low standard of mental health intervention in the country that falls far short of what we are used to in the UK. Here, we had the Towards Equity and Access report from the Department of Health, which outlined the increased incidence of mental health problems in the deaf population, and it was supported with different resources. I just wonder if more could have been done for the twins to improve their mental health before they got this stage.

I don’t think Thierry Giet has the answer. He is walking into dangerous territory where the proposed amendment will extend euthanasia to people who do not have a voice, such as terminally ill children and people with Alzhiemers. Also, the mention of ‘people with specific conditions’ will start associating a range of conditions with ‘death’. Until now, the decision to die always came from the individual – allowing relatives, carers and the state to be part of the decision to impose death is scary. Forget about the myths, this is a reality I don’t want to see.

[contributions from Thierry Haesenne published with his permission]

This article was first posted on John Walker’s blog, which you can read here: http://deafcapital.blog.com/2013/01/16/the-belgian-twins-euthanasia-and-the-myth/

John Walker is a senior research fellow at University of Brighton. Deaf, and sign language user by informed choice. He writes a blog on topics related to the Bourdieusian principle, by the title “Deaf Capital” . It is concerned with the ‘value’ that people place on the Deaf community or the cultural elements of deaf lives that can be askew or misconstrued. Follow him on twitter as @chereme

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