[nfb-db] An article concerning the Belgian twins

[Scott Davert]

This was published yesterday and is well worth the read.
Taken from:
http://deafcapital.blog.com/2013/01/16/the-belgian-twins-euthanasia-and-the-myth/

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 represent real people and events but it has been
covered in a cloak of
glamour to make it appeal to the masses.

Just this week, we have 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]

[photo credited to Christopher Macsurak]