Re: <nettime> The Vegetative Prince Will Not Wake Up: Dutch Prince Friso medical ethics and the ordeal of social inequality

[Karin Spaink <karin@spaink.net>]

On Aug 29, 2012, at 01:35 , Keith Sanborn wrote:

ExecSum: 

You can't use research about Dutch pre-euthanasia-law practices to slam our *current* Dutch euthanasia law. Especially not because this law was developed to remedy the exact same practices that you're complaining about: doctors acting of their own accord and deciding by themselves what is 'good' for a patient.

Also, it might be useful to bear in mind that ' terminal sedation' - a patient getting so many painkillers that she or he dies of it, instead of dying from the original disease - is a standard medical practice in all Western countries. No GP and no medical specialist will ever label that intervention as 'euthanasia'. Yet, as worldwide research shows, 'terminal sedation' is happening everywhere. Funny thing is that it's happening *less* in the Netherlands than in other countries....

*

Nettime posters stated that the Dutch euthanasia law has resulted in more than 2000 people pr year being killed against their wishes and/or without any prior consent. After I challenged that statement, lots of statistics, reports, questions and innuendos were thrown my way:

- Martin Hardie <martin.hardie@gmail.com> claimed that Dutch euthanasia laws have resulted in 'two thousand people being killed without their permission' on a yearly basis;
- Keith Sanborn <mrzero@panix.com> said that if only you would Google, 'you will find the numbers are closer to 6,000 involuntary terminations of life';
- Others responded: Who are you to decide on them merits of anybody's life?

Caveat:

- I have multiple sclerosis, and I'm quite sure that I will want to die *before* that disease finally qualifies me as a proper subject for euthanasia under Dutch law;
- I've had cancer, which has, ehm, 'allowed' me to see how painfully some of my sisters-in-breastcancer have died;
- I've written a book about euthanasia and suicide, and hence: I've done extensive research on the subject;
- I'm convinced that while there might be a right to die, that's not a right that can be enforced upon GP's and medical specialists to execute: my right to die doesn't imply that anybody should be forced to assist / execute my wish.

To some degree, I might even agree with Martin Hardie <martin.hardie@gmail.com>, when he says: If you want to die, 'go find a smack dealer and stock up'. What stops me, is his utter naiveté: how do you find a 'smack dealer' when you're crippled and home-bound by your lethal disease? Since when do we trust smack street dealers to deliver the real stuff? And by the way, since when do street dealers have any useful and reliable knowledge about the interaction between their junk and your own prescribed medicines?

*

My response: 

- In the '90's, there was a government investigation (the Remmelink Report) how the Dutch medical profession actually dealt with terminal patients, with end-of-life decisions and/or requests for euthanasia;
- At the time, euthanasia was illegal:
- Even while patients often sincerely & repeatedly requested euthanasia, the mere hint that you (as a medical professional) could have been swayed by that and had possibly acted according to that patients's wishes to please be allowed to die and *thus* not only have abided by medical standards, would make you liable for prosecution;
- Which resulted in the need for GP's and specialists to wrap their agreement with their individual patients to give them a 'kind death' when they requested such, as a purely 'medical decision' - i.e.: 'The patient was dying already and meanwhile suffering unacceptably; being their medical specialist, I had no choice but to do this. Thus, this was no euthanasia; it didn't need their consent.'
- Meanwhile, 'terminal sedation' is standard practice in all Western countries. Actually, by now it's much more common practice in countries that oppose euthanasia. While 'terminal sedation' is common practice elsewhere, it's by now criminalized in NL.

The numbers which are being thrown around at Nettime, are bollocks. There's *no* 2000 people being killed involuntarily, and on a yearly basis, in The Netherlands. The Remmelink Report - which predated, and actually helped to bring about, our current euthanasia law - spoke of a thousand people per year who were being offed. But mind you:
- In all these cases, it was clear that they were going to die any way within the next few days;
- Around 40% of them - i.e. circa 400 people - had stated previously that they wanted euthanasia, but were by then so far gone that they couldn't repeat that wish;
- Quite a number of these 1000 people were by then completely incommunicado. The really bad thing is that many of them were yet screaming, and visibly in pain.

Also, everybody seems to misunderstand the Dutch euthanasia practice.
- In most cases (i.e. over 80%, close to 90%) of euthanasia, death is hastened by only a few days. It's not *at all* like euthanasia is granted matter-of-factly in NL to people who might possibly have a quite few more months to live. On the contrary - many of those who are applying for euthanasia, hoping to escape their last intrepid days, and hoping to end their live while they are still sound & sane, find out that they can't - that their GP is sill hesitant,

For those who come up with the 'worthy' life argument: please understand that this is not a matter of 'us' deciding which kind of life is worthwhile. We're talking about:
- People who have decided for *themselves* that they don't want to live like this; 
- Or, in the case of the Remmelink Thousand, people who were in the throes of dying: many of them unconscious, yet screaming in their stupor.
- And precisely because of our euthanasia laws: if you, as a patient, tell a doctor that you don'y want any intervention, they'll let you suffer.

Keith Sanborn <mrzero@panix.com> pointed me to a page purporting to describe the Remmelink Reports, http://www.patientsrightscouncil.org/site/holland-background/ , asking me what I thought about their excerpt of it. To no avail, I've been trying to hunt down an english version of the Remmelink Report, as I can't even begin to decry that nonsensical, would-be summary... No less then 8000 *reported* involuntary cases of euthanasia per annum in The Netherlands? Oh my. How come I've never heard of that? For fuck's sake, I live in the Netherlands....

Why in the world would people in other countries think that the Dutch would be happy / insensitive / unaware that their loved ones are being slaughtered on a massive scale? Why in the world would you outsiders assume that *involuntary* killing on a massive scale is involved - nay: inherent! - while the main debate amongst Dutch citizens is actually that we think that the current euthanasia law is too restrictive? 


- K -

-- 
Wat is normaal? Wat jij normaal noemt: rust, reinheid en regelmaat, gesundenes Volksempfinden, je weet wel, bla bla bla, dat wat iedereen aanvoelt zonder erover na te denken? Nou, dat neem ik sinds enige tijd in pilvorm. Jouw basisgevoel, mijn doordrukstrip.
  - Sam Gerrits, Alleen: berichten uit de isoleercel







#  distributed via <nettime>: no commercial use without permission
#  <nettime>  is a moderated mailing list for net criticism,
#  collaborative text filtering and cultural politics of the nets
#  more info: http://mx.kein.org/mailman/listinfo/nettime-l
#  archive: http://www.nettime.org contact: nettime@kein.org