
I wrote a small piece on planned death - okket
http://hintjens.com/blog:116
======
buro9
I've chatted with friends about my desires should I get a cancer that is more
likely to kill and not be treatable, to refuse chemo, and to live what remains
of my life qualitatively rather than quantitatively.

I would plan how best to handle my death, and aim to enjoy every moment before
a quick and severe pain takes over and does the job.

Some have said this is a selfish viewpoint, that I should stay around longer
for the ones I love. But the reverse is true, it is selfish of those that love
to demand quantity over quality, especially when it slowly strips away the
very being of a person.

All we can do is live a life fully, but that isn't "as long as possible", it
is "as much as possible".

~~~
notjosh
As a cancer survivor, I feel so conflicted about this. On one hand, I can
completely understand where you're coming from. But on the other hand, I think
seeing things in such black and white terms is pretty shortsighted. When
there's a terminal prognosis, many/most doctors will offer an array of
treatments and therapies to help manage symptoms without trying to make you
feel worse. There are several middle-grounds that can help _extend_ life
without _prolonging_ it (a fairly semantic, but very important difference).

Which, of course, leads to my next major gripe: end of life treatments (even
outside of cancer) are generally awful. Euthanasia and assisted suicide laws
are sorely lacking. Palliative care systems tend to stretch people's last days
out so thin, it's awful.

So, despite refusing treatment, you may still end up in palliative care in
undignified and grim circumstances. That's a tragedy. We need to do better.

~~~
crag
//As a cancer survivor, I feel so conflicted about this.

I don't. I'm one of those that survived AIDS (had cancer (KS), CMV, etc - in
other words - the whole bad of horrors).

I got lucky, good timing, I held out long enough. But many didn't. And I saw
what hanging on does to people. It's stunning to see a guy who 6 months ago
weighed 210lbs of muscle and now he was [trying] standing before me; 110lbs
who couldn't spend more then 10 mins out of the toilet.

I think, ending your own life on your own terms is possibly the bravest thing
you can do. It's not easy to take your own life.

For years, I had a special stash of drugs in a place I could get to even if I
lost my eye sight (I almost did). And I set a limit - if my eyes went I would
go. I never understood why our society expects people to fight the good fight.
You should be able to make that decision yourself.

Right now, you have to beg for help, or go into hospice and wait it out.
Usually very high on morphine and barely able to get out of bed. Awful.

You are right, end of life care is terrible in the US. Just terrible. We need
to start teaching people that death is nothing to fear. And sometimes, it's a
better choice.

~~~
alanwatts
>I never understood why our society expects people to fight the good fight.

One reason I would guess is the massive fortune that is made off
pharmaceutical sales.

If someone takes their life early, that is potentially hundreds of thousands
of dollars saved by the family that otherwise would have went to big pharma.

~~~
crag
Nahh... that's probably part of it. But in many cases, it's the family
insisting that you "drag it out".

I remember at NY Hospital, this guy (in the next room) was VERY sick (AIDS) -
he was at end of life. Had 105+ fever they could not get down. He was laying
on a bed of ice, and the nurse was pouring ice water over him - all at the
insistence of his sister.

I remember thinking how could she torture her brother so much? I know she
loved him. And it was a vain attempt too save his life. He wasn't conscious
though most of it, but I think he would've preferred to die in peace and quiet
rather then laying on a bed of ice.

He lasted till the morning. What a way to go.

That's why Living Wills and Medical Directives are so important.

~~~
alanwatts
Indeed, pharma sales are maybe only a small part of the reason.

The biggest reason may be the irrational terror certain societies have
regarding death, which is something easily exploited by terrorists.

Even many of those who claim to _know_ they are going to Heaven when they die
are terrified to do so, indicating they don't really believe.

But where does the root of this terror come from? Perhaps it is the false
belief of an artificial separation between mankind and nature

------
mindfulgeek
I watched my father die of cancer when I was in my early 20s. He went through
a bone marrow transplant -- twice. The first time he was sick and it was hard,
but he was cancer free for a few months and managed to walk me down the aisle
at my wedding. When the cancer came back, he had very little chance of
surviving. He opted for full blown treatment, against everyone's
recommendations (and my mother's wishes). His body was still weakened from the
first transplant, and the cancer grew resistant. Those had been the worst 6
months of my life. In the end, they sent him home. He looked about 80 years
old, with thin skin and a frail frame.

A few days later he passed in what I found to be the most humiliating and
painful few days. After I watched him die, I promised myself I would never let
my kids see me die that way -- petrified and feeble. I hadn't realized it
then, but the child I made that promise for was barely one when I got my
diagnosis. The odds were not in my favor, but I wanted nothing more than to
give her a mother.

I decided to risk everything and be treated. I spent what could have been the
last months of my life in a hospital, too sick to see her. As my oncologist
told me -- I was losing one year to save the rest. Best risk of my life. She's
almost eight and has a one year old brother. Life is good.

Good luck to you. The world is filled with miracles. Your attitude will be the
most important thing your children remember. Keep loving them.

~~~
nashadelic
I literally had to hold my breath till your story unfolded. Congratulations on
winning your fight!

------
ins0
For those who have not read his first blog post or want to read the comments
from the first article:

[https://news.ycombinator.com/item?id=11547212](https://news.ycombinator.com/item?id=11547212)

[http://hintjens.com/blog:115](http://hintjens.com/blog:115)

~~~
PieterH
Thanks for the links. I'll also try to contribute to this thread where I can.

------
disposeofnick9
I've seen too many people get unnecessary, life-quality-killing butcherous
surgeries and read the evidence confirming most end-of-life surgeries rarely
have useful benefit. If you're going to check out, go with dignity and don't
put your family / self through extended suffering. If you have to go in an
unprogressive country, nitrogen itself leaves no evidence and paraphernalia is
minimal and can be removed.

Also, please do a will, pick an executor, prepaid funeral and make a Quick
Reference guide to finances, assets, bills, keys and passwords... both my
mother and I are getting this done ahead of time.

It's not as depressing as leaving family to stumble through things while
grieving.

~~~
danielweber
My mother was an RN nurse and saw way way too much of that. My parents have
made her wishes very clear to the rest of the family.

------
datamoshr
Pieters calmness as he wrote these two last pieces is admirable. As an
existential thanataphobe[1] I'd love to understand a bit more on how he's come
to this level of serenity and acceptance.

[1]:
[https://en.wikipedia.org/wiki/Death_anxiety_(psychology)](https://en.wikipedia.org/wiki/Death_anxiety_\(psychology\))

~~~
Delmania
What choice did he have? He probably went through the classic 7 stages of
grief. In the end, his death was inevitable (as is all of ours), he just was
faced with it as a reality as most of us think it is many years off.

~~~
PieterH
Honestly, when I was told I had cancer five+ years ago, it was just the same.
I understood the diagnosis rapidly, cooperated fully, and when they told me I
would be operated (on my birthday, 2010), I realized I might live, and
prepared myself for surgery. I never had any strong negative emotions about
it.

------
thu
I'm from Belgium, just like Pieter, and a former colleague of mine worked with
him and knows him well.

I didn't want to read its previous blog post when I saw the title on HN. Then
that former colleague posted it on Facebook, and I told myself the title was
about Pieter himself.

The father of my girlfriend died from cancer a few months ago. When I met him
three years ago he was fine.

Not sure if it is a good idea to read this post if you're too close to
depression but it is actually almost playful.

"Internet hugs..."

~~~
PieterH
I'm determined to show people that death does not need to be a sad or
depressing thing. Loss is, of course. I know my kids are going to suffer. I
know they're going to be angry, confused, maybe even self-destructive at
times, when they realize over and over that the person who steered them has
gone, and they have to learn to steer themselves.

Yet it's part of the order of things, isn't it? Loss forces us forwards. My
kids are strong and they know it and they'll get courage in their darkest
moments by remembering that I was never afraid, angry, or self-destructive,
when I was dying.

This part, it is playful and joyful, and I'm so incredibly happy to be part of
it.

And I'm not on any drugs, just a large carton of Ayran my son bought me from
the baker this morning. :)

------
pieter_mj
I recently witnessed my uncle's euthanasia. There's a few things to consider
and discuss with your leifarts (as the euthanasia assisting doctor is called
in Belgium) :

\- death is instantanious (within 15-30 seconds of administration of
penthotal)

\- often a sedative is given. Dormicum can lead to loud snoring so you should
discuss with your doctor necessity/alternative

~~~
jonathankoren
And yet in the US you're pretty much stuck with refusal of treatment which
inevitably means dying slowly of dehydration. The outcome is the same and
everyone knows it. After all, that's the point. It's just needlessly barbaric.
We don't even treat animals that way.

~~~
lostlogin
It is strange. Allowing the state to take a life but not allowing the
individual the same right over their own life.

~~~
wbillingsley
Limiting the options to "palliative care" instead of active euthanasia is
partly a bulwark against there ever being social-pressure-to-die. And given
many societies aren't very good at identifying or dealing with elder abuse as
it is, it seems a reasonable bulwark to have.

~~~
BatFastard
How about the incredible social-pressure-to-live!, not only social pressure
but legal pressure. In my father's last few weeks of life I would see him wake
up each day asking "why am I still here". Because you have NO choice.

------
camillomiller
I'm in the metro, crying. Fuck.

------
panorama
I can't fathom how it must feel to live each day while a cancer grows inside
of me. Pieter is definitely a man of much greater fortitude than I.

I also can't get over the fact that 1 in 2 people develop cancer in their
lifetimes. One would think curing cancer ought to be amongst humanity's
greatest concerted challenges.

~~~
loganmhb
> One would think curing cancer ought to be amongst humanity's greatest
> concerted challenges.

One of the reasons "curing cancer" is so difficult is that cancer itself is
not really one disease but many, with diverse causes and treatments. What
works for one kind cancer doesn't work for another, so some kinds are fully
curable and others unstoppable, with of course many in between. New research
tends to chip away at variations of the disease without being able to cure it
wholesale. If you're interested in the recent history of cancer and cancer
medicine, the book "The Emperor of All Maladies" is a fascinating treatment of
the subject.

------
UweSchmidt
My take: all the recent changes in western society could be tagged with
"Individualism". Fundamental changes regarding lifestyle, relationships and
sexuality were enabled by the demise of collectivist ideologies like communism
and national socialism which had clear ideas how humans should live, and the
wealth and flexibility of modern economies, which enable the individual to
exist without any dependencies except a job.

Instead of refering to moral, ethical and other absolutist arguments it's
useful to look at how until recently rules limiting the individual were
probably necessary for collective survival, and delight in the freedom we can
have now.

Right now we're watching people around us coming to terms with planned death
(possible now since the community does not need you to tough it out until the
end any more). There are more radical and crazy changes ahead that would be
revolting right now but will be normal in the future.

~~~
loup-vaillant
> _collectivist ideologies like communism and national socialism_

I sense a conflation between communism and USSR dictatorship. I'm not sure
this is warranted. (Then again, China is supposedly lead by a "communist
party".) More generally, are you suggesting that collectivist ideologies
necessarily leads to totalitarianism?

> _which enable the individual to exist without any dependencies except a
> job._

That last exception will need to be remedied some day. Some more automation
and _substantially_ more redistribution should do it. Which is why I'm so
disturbed by your juxtaposition of communism and national socialism: many
people equate redistribution with communism with dictatorship, preventing us
to solve the problem of ever growing structural inequality. We're going to get
over this trauma if we're to avoid the coming horrors of corporate capitalism
(or the horrors of its unplanned demise).

~~~
mafribe

       conflation between communism and USSR
       dictatorship. 
    

It's a simplification, but historically warranted, in the sense that the USSR
was created explicitly with the end-goal of leading to a communist society as
described by Marx/Engels in the "Communist Manifesto", i.e., the ideal society
where the "contradictions of capitalism" have disappeared. Moreover, the 10
points that the "Communist Manifesto" says (Chapter II. Proletarians and
Communists) are required to bring about communism were all carried out in the
Soviet Union and its satellites (and brought about not communism, but Stalin,
Mao and Pol Pot, not to mention an inability to feed the population).

If you want to be more precise in your terminology, I suggest the following
distinctions:

 _Marxism_ is a theory. Typically 3 things are theorised. (1) How capitalism
(re)produced inequality. (2) A theory of revolution as intrinsic part of the
transition from contemporary society to communism via socialism. (3) A theory
of post-revolutionary society.

 _Socialism_. This describes post-revolutionary, but pre-communist societies,
in particular USSR and its satellites.

 _Communism_. The ideal society, post-revolution, where the "contradictions of
capitalism" have disappeared.

~~~
loup-vaillant
> _the USSR was created explicitly with the end-goal of leading to a communist
> society […]_

I'm not sure that's true. Granted, it was _ostensibly, outwardly_ created for
that purpose. But I'm not sure that was the actual intent of those who lead
that charge.

My History is quite dusty, so I wonder what exactly brought about the
dictatorships you mentioned. Besides, it wouldn't be the first time a
revolution lead to (near) absolutism. The French revolution for instance lead
to Napoleon. Given this, I wonder how representative governments were able to
emerge at all. It doesn't make me very optimistic about the possibility for
democracy either. (Yeah, for various reasons, representative governments are
hardly democratic: elected leaders are very poor proxies for the will of the
people.)

~~~
mafribe

       the actual intent
    

We cannot look into people's head. We have to take into account what they say
they do. Yes, we can question to what extent they were telling the truth,
possibly even to themselves.

    
    
       wouldn't be the first time
    

That's why revolutionary political movements continue having a bad name.

~~~
loup-vaillant
> _We cannot look into people 's head. We have to take into account what they
> say they do._

The latter often gives a pretty good insight about the former. The fact that
USSR became a dictatorship so quickly makes the leaders of the movement look
pretty bad.

------
throwaway324324
Some of my family members have died to suicide. One violently after many
people could not restrain them. One very much planned, very much like Pieter.
Both found reasons to end their suffering, to take authoritative control over
their own death. The suffering doesn't go away, it just takes another form in
other people. It seems I'm the authoritarian lunatic, the psychopath, because
I cannot see what separates euthanasia from every other tragic suicide.

* Is it because someone else performs the injection? Then what about suicide by cop, and cases where the patient injects herself?

* Is it because their family members join them in that initial feeling of peace following their decision (which suicide prevention pamphlets warn to watch for)?

* Is it because a cancer patient really is better off dead? Then so are many other seemingly-hopeless people, who are depressed, abandoned, and addicted. Is it because doctors agree that they are better off dead?

Nobody is pro-suffering, but sometimes we must suffer for the things that make
us human. When we hear about deaths, aren't the most painful ones those where
a person has said "this human life is not worth living"? No inanimate disease
can say something so painful, can affirm it so permanently through willful
action.

~~~
robryk
> (...) what separates euthanasia from every other tragic suicide

I see two large differences:

1\. A requirement for euthanasia is usually that the patient keeps wanting it
for a reasonably long period of time: it should never be a spur of the moment
thing.

2\. Another requirement usually is that the patient is mentally competent.

> When we hear about deaths, aren't the most painful ones those where a person
> has said "this human life is not worth living"?

If euthanasia is forbidden, people _will still be saying that in similar
situations_, just they won't be able to do anything about it.

~~~
throwaway324324
We usually _don 't want_ them to do anything about it - this is why we have
suicide prevention. The difference with euthanasia is that you personally
agree that certain lives really are "not worth living", and for practical
purposes you defer that judgement, via government, to a set of doctors. This
shifts the requirement away from informed consent to a judgement external to
the person, from "do they really want to" to "do I really want them to".

The differences you mention (duration of ideation/plan, competence) are
ultimately about determining if the person "really wants to". But this applies
equally to "normal" suicide: it places the many rationally planned suicides
into the same class as euthanasia (it's their life, they're freeing
themselves, keep your morality to yourself).

[http://www.emorycaresforyou.emory.edu/resources/suicidestati...](http://www.emorycaresforyou.emory.edu/resources/suicidestatistics.html)

Furthermore, according to the above link, of the 1 million who create a plan,
only half report going through with it - how many with a "planned death" would
not actually have gone through with it and instead endured, had they been
lucid?

Should we be trying to prevent "(rationally) planned death", or shouldn't we?

------
pillowkusis
I've never known your work until just recently Pieter, but your writing is
elegant and powerful. I will remember it when it's my turn to follow you.

I can imagine no worse fate than contracting alzheimer's disease, and its a
prospect that frightens me all the more knowing that in the US, it would be
very difficult to avoid suffering through it to the bitter end. In the US, you
have little control over your death.

Your eloquent advocacy for planned death is much needed. Thank you for your
work.

------
makenosound
If you’re interested in some further discussion, Andrew Denton and The Wheeler
Centre have been working through the topic of euthanasia (with a particular
focus on Australia) in their _Better Off Dead_ podcast:
[http://www.wheelercentre.com/broadcasts/podcasts/better-
off-...](http://www.wheelercentre.com/broadcasts/podcasts/better-off-dead)

------
notlisted
The only reason why I may ultimately move back to Western-Europe: the right to
arrange a peaceful death on my own terms. Sad news nonetheless.

------
Delmania
Memento mori, everyone.

Are you living like you're going to die?

------
olantonan
Most people die a sad death. Pieter Hintjens dies committing.

I will follow suit and keep a git client close to my death bed when it's my
time.

------
nxzero
Wonder how many people read this and think...

"I'm not going to die."

~~~
emptybits
Ray Kurzweil, perhaps.

~~~
nxzero
(Sam & Elon too.)

------
bettyx1138
thank you for writing this. #respect

------
mbrutsch
My mother had a DNR. She contracted meningitis, and died. She was
resuscitated, suffered severe brain damage, and lived another 2 years as a
semi-vegetable before dying in her sleep after choking on her own vomit.

If I believed in such things, I would hope my stepfather is in Hell.

edited for spelling

~~~
throwaway324324
Your stepfather apparently violated your mother's directive based on the
desperate belief that his spouse could recover, and she did not. This is
absolutely tragic.

Then your stepfather presumably refused kill his spouse (due to hope, moral
beliefs, cowardice, etc.) by unplugging her from standard, non-extraordinary
life-support. She eventually died a painless death.

For which of these does he deserve to suffer for, more than he has already?

A DNR is not an order to cease basic life-support post-resuscitation. For
example, I don't want extraordinary measures, but I also absolutely do not
want anyone to euthanize me if I somehow end up semi-vegetative.

~~~
exolymph
> I also absolutely do not want anyone to euthanize me if I somehow end up
> semi-vegetative.

Just out of curiosity, why not?

~~~
throwaway324324
Because I would be participating in killing a living human. It's our duty to
avoid intentionally doing that, even if it really hurts.

Technically it's the same reason that I don't want someone to euthanize me
right now. The value of my life does not derive from feeling happy or
otherwise using my senses. Nothing important changes when I have brain damage
(or cancer, or depression). All I have to do is be human, and my life has a
certain type of value that makes it wrong for anyone to intentionally end it.

If I try to build in loopholes, or start messing with semantics, or if I
compromise because something is going to hurt, I end up being unable to act
from reasoned moral principles, which is something else I value.

(I have a similar curiosity, if you'd oblige, about what makes euthanasia any
different from simple suicide - I actually asked that earlier, but all I got
was downvotes.)

~~~
hadagribble
Thanks for that explanation. I can't speak for the OP (or anyone else), but my
take on the difference between them is that euthanasia is suicide, but only
once all other options have been exhausted.

I don't see "simple suicide" (i.e. not in the face of terminal disease) as
immoral or wrong. The tragedy though, is how often it happens because of poor
social support systems, such as lack of access to mental health support
systems or, in some parts of the world, bad debts to loan sharks.

These are often relatively spur of the moment, avoidable situations and, IMO,
more of an indictment of society than a moral failing of the person.
Euthanasia is different in that it is usually a well-considered decision, once
there is little hope of any change for the better. I don't see any value in
forcing people to live through misery without anyone having a clue on how to
improve their life.

(I don't expect you to necessarily agree with this point of view, but I hope
it helps understand another perspective.)

~~~
throwaway324324
Thanks - yeah, I agree, we need better palliative care, better social support
in general. I understand your perspective, but I do have trouble following it
through - I need to be able to say "at this point, a life loses that value,
and it becomes permissible to kill". I don't see that happening with consent,
because dueling to the death is rightly illegal. I also don't see how we can
get somewhere by counting up something (like suffering, failure to contribute
back to society, whatever) that then makes it permissible to kill a person.
And if I try to combine both, I end up with rules that are still problematic,
but make it easier to kill the elderly, the dying, and other vulnerable
people, which is a bad sign.

~~~
hadagribble
For what its worth, I think we're approaching this question from opposite ends
of the spectrum. Rather than asking when it is permissible to kill, I look at
it as "when is overriding free will (on victimless actions) for societal good
permissible"? Forcing terminally ill patients to live through the misery
doesn't meet my bar on that front.

I realise that you're drawing a distinction between taking your life and
having someone else take it for you, but to me, in this case the difference is
largely academic since the agency remains with the patient at all times.

The objections to dueling were, as I understand, more around the social
pressures which required one to participate making the idea of consent much
more fuzzy.

~~~
throwaway324324
Interestingly, family pressure to euthanize is a major practical concern for
countries with euthanasia.

The point is actually that there is no distinction between taking your life
own or someone else's. If consent is our metric, dueling is permissible (with
societal pressure safeguards, if you'd like). Consent is irrelevant, the issue
is that intentional killing should be a relic of a more barbaric past. The
cure (resolving psychological distress over having a painful death by being
willingly poisoned, often in front of your family) is worse than the disease.

Ultimately, you're saying that it's permissible to kill when a terminally ill
patient would "live through misery", where someone who is not the patient
defines what constitutes "misery". Am I understanding that correctly? On what
grounds would that not apply to, for example, a severely depressed homeless
person suffering from substance abuse, who a doctor might judge has much more
suffering in store for them than a cancer patient with access to painkillers?

~~~
hadagribble
> "... family pressure to euthanize is a major practical concern..."

Agreed, and this is one of my major reservations about euthanasia. I still
think it is overall for the best, but this aspect absolutely needs monitoring.
I can only hope that better social services and support help reduce the
financial burden on families (which is often one of the biggest reasons for
pressure). The emotional aspect, of course, is another story.

> "The point is actually that there is no distinction between taking your life
> own or someone else's."

Here I have to disagree. Only one of these is an action on one's own body
(which one should have relative autonomy). I think consent is absolutely key
-- personally, I'm not opposed to the idea of legalizing dueling, as long as
we have adequate societal safeguards against it. We don't outright ban other
dangerous things that could end up killing people (tobacco, alcohol, free
climbing...)

> "The cure ... is worse than the disease."

This is not a determination I am comfortable making for anyone else. Unless
there is significant societal/family pressure which means that people are not
making this choice themselves, I think they should have that right. If there
is extensive pressure, there should be safeguards against that, as opposed to
banning the practice?

I see a similar kind of argument in the anti-abortion debate -- there are
folks who wouldn't opt for it themselves, but want others to have that right,
while others feel that it should be banned for everyone because it is overall
a societal ill.

I realise that this is a different question, but is this the kind of angle you
are coming from?

> ... not the patient defines what constitutes "misery".

In the long run, it should absolutely be the patient who determines what
constitutes misery and makes the choice. Unfortunately, there is entirely too
much risk of it being used as a way for society to ignore people we should be
helping ("if we wait long enough, maybe they'll just go away") for it to be
practical to use it that way yet.

Terminally ill patients are a relatively well-defined set where there is less
risk of society starting to ignore the problem (I don't see interest in cancer
research drying up just because of this option), so it seems like a reasonable
place to start?

------
goldenkey
We strive to have a high signal to noise ratio on HN. There's nothing wrong
with what you wrote, they are your emotions. However, please make an effort to
tell us more about how you feel or your thoughts and comments on the post.

~~~
rbanffy
This _is_ signal. What is written, how it's written and what's _not_ written
because writing was overwhelming are all part of it.

~~~
bcook
We all cry at a funeral... that is not what the family or loved ones remember.
They remember the speakers, the speeches that offer something useful to
explain the occasion.

No disrespect to the parent poster (or author) but... acknowledging that
something that is obviously sad is actually sad is not a very useful
observation.

~~~
DasIch
Why would the amount of time we consciously remember something, and this
alone, define it's value?

~~~
MacsHeadroom
Can you suggest a more interesting definition of value than "lasting impact on
conscious experience"?

~~~
DasIch
I don't think I can come up with a good definition that I would be perfectly
happy with.

I do believe however that everything you experience will to some degree have
an impact on you, even if you don't necessarily form memories around them and
are able to recall these experiences.

Also especially with grief it seems important to share the emotions we have,
so that we can understand our own emotions better and process them. It seems
to me that precisely when we achieve that goal of processing grief the lasting
impact is going to be less than it would be otherwise. That doesn't make the
contributions and experiences that help process that grief any less valuable.

------
known
Wish I know the cure for cancer

