Henk Blanken

Henk Blanken is a Dutch author and journalist. He has worked for various newspapers and magazines, written books on the journalistic trade and won several prizes for his work. He currently writes for De Correspondent. Henk was diagnosed with Parkinson's disease and at present, he mainly writes about the dilemmas surrounding euthanasia and dementia. He knows that the disease might one day take him past the point at which he wants to carry on. His piece “My death is not my own: the legal limits of euthanasia” appeared as a long read in The Guardian. His book titled “It Won’t Kill You” was met with critical acclaim in both the Netherlands and Germany. Henk says: “That something good has come out of this deterioration, makes up for a lot.”

 

What is the Big X you are going to address in your talk and why should we be excited?

“The Dutch euthanasia laws are not half as liberal as everyone thinks. When it comes to dementia, those laws are just empty words. Thousands of  people die too late because a dignified death is too hard. I want to change that law.”


What is the best idea worth sharing you came across the past 10 years?

“Kevin Kelly and his Technium

 

English transcript

MY DEATH IS NOT MY OWN 

Look at me. 

I am only half the man

I used to be.

Without my stick,

I might fall over.

 

I drool when I pee

or cut an onion.

And sometimes,

I can hardly talk.

Look at me

And my Parkinson’s disease.

 

Slowly I will become disabled.

And if I’m really unlucky?

Then I’ll end up lost.

Lonely.

Confused.

 

With dementia.

 

My father-in-law was 91

when he mistook his wife

for an intruder

and attacked her

with a kitchen knife.

 

We took him to a nursing home. I will never forget that image.

This helpless man

behind the glass door.

His distraught eyes.

His silent reproach.

His endless loneliness.

 

I’ve learned to live

with the pain

of Parkinson’s.

The shame is wearing out.

But what happens next?

 

What happens when

I don’t know

I’m alive anymore.

 

[PAUSE]

 

Then, I would rather die.

 

[PAUZE]


That must be doable.

I live in the Netherlands.

A country where

voluntary euthanasia

is more regulated

than anywhere else.

We have euthanasia laws here. Nine out of ten Dutch people support this law.

If your suffering is

unbearable and hopeless,

a doctor can choose

to let you die.

Terminal lung cancer?

A doctor will mercifully

let you die.

He will prevent you

from choking

in your own blood.

You don’t want to end up

like a zombie in diapers?

 

If you did prepare an advanced directive, a doctor is allowed

to administer a lethal shot.

 

As Dutch people,

we are proud of our right

to self-determination.

Just as we are proud

of our liberal drug policy.

It is part of our folklore:

just like windmills

and the Red Light District.

 

But this right

that we’re so proud of?

 

It does not exist.

Our euthanasia laws

are not half as liberal

as everyone thinks they are.

And when it comes to dementia, those laws are just empty words.

A doctor is allowed

to help you die,

but has no obligation to do so.

 

Euthanasia is not a right.

The patient does not have

the last word.

Neither does the family,

nor your love.

It’s the doctor who decides.

And no one else.

The paradox is crushing.

You go through life terrified

of chasing after nurses,

chasing shadows,

chasing yourself.

“Never,” you think.

 

But when the time comes

that you are as lost

as you never hoped

you’d ever be ...

you can no longer ask

for a decent death.

 

So. Nothing happens.

Because doctors do not kill

people who are no longer

able to ask for it themselves.

Who don’t understand

what’s going on.

 

Every year,

ten thousand Dutch people

with dementia die.

About half of them

stated that they did not want

to die like that.

They wanted a dignified death.

 

How many got

what they asked for?

One hundred.

One hundred people on average escape that fate.

But only because they request

euthanasia in the early stages

of dementia.

Imagine.

Nobody knows.

You’re not doing

anything crazy.

It could take years

before you have to go

to a nursing home.

But you decide to die now.

 

[PAUSE]

 

That takes so much courage.

But what else could you do?

 

There is no other choice.

 

If you don’t want to die too late,

you will have to die too early.

Simply because dying on time

is too difficult.

 

I find this cruel.

[PAUSE]

 

So what happens

to all the others?

To the thousands of people

who don’t ask for euthanasia

straight away?

Those who only

want to die

when they can’t stay

at home?

 

 [PAUSE]

 

How many got the death

they asked for?

 

Fourteen.  

 

[PAUSE]

 

Fourteen.

And that’s not 14 per year.

That’s 14 ever since

the euthanasia laws

came into effect.

 

14 people died a gentle death.

On time.

On their time.

 

[PAUSE]

 

Look at me.

I’m only half the man

I used to be.

Slowly I will become disabled.

In five or ten years I will depend on a wheelchair.

But I’m ok

with that lousy suffering.

 

And what if someone has to bathe me one day?

 

I’m OK with that too.

As long as I can read,

think

and write,

I’m even OK

with wearing a diaper.

I don’t care

for a dignified death.

I don’t care

for decorum.

 

That feeling died

the first time I wet myself

on the balcony

on my last train ride home.

 

[PAUSE]

 

I am not afraid of death.

My death is nothing.

My death only has meaning

to the ones left behind.

 

MY DEATH IS NOT JUST MINE.

 

[PAUSE]

 

Everyone should be in charge

of their own death.

And if I can no longer

express my desire to die

– and no doctor will let me –

then someone else

has to do it for me.

Someone else

should be allowed

to do that for me.

 

What this means?

 

When the day comes

that my love sees me suffering

or in fear,

then I want her

to crush that pill

in my porridge. 

 

[PAUSE]

 

Everyone around me

thinks I have gone mad.

A pill in your porridge?

Can you ever expect

such a thing from anyone?

 

[PAUSE]

 

No.

You cannot ask

anyone for that pill.

 

So, what should be done?

 

If no doctor is willing to

And your love isn’t able to?

 

You must do it together.

 

You.

Your love.

Your doctor.

 

That’s not as crazy as it looks like.

 

[PAUSE]

 

Right now,

your loved one can stop

medical treatment if you

– in your lost

and confused state –

get pneumonia.


“Docter,

let’s just skip the antibiotics”.

You will die all the same.

Only later.

Only more lousy.

That is why

the law should enable you to transfer your right to self-determination to someone else.

Your love should not have to put that pill in your porridge to, but should decide on the right moment.

 

‘Doctor, you can let him go now.’

 

The law should allow your loved one to request euthanasia for you – on your behalf.

 

AS IF IT WAS YOU ASKING.

 

So later on,

they can say:

 

Look at him.

 

He didn’t die too late.

 

And not too early.

 

He died on time.