
A Protocol for Dying - aleksi
http://hintjens.com/blog:115
======
bsandert
From personal experience, I can very much relate to and agree with this piece.
My father went through a similar process: cancer (melanoma) – two years of
treatment and coming to terms with the facts – euthanasia. As a family, we
have been very matter-of-fact about it, which was definitely something he
encouraged and participated in. We frequently talked about all aspects of his
disease, the future, how it affected him and us. Sometimes one of us sighed
that it would have been so much better if he would have suddenly died in his
sleep but I always disagreed with that, it would just have come with a
different set of emotions and grieving. I am actually very happy that we were
able to share parts of this process with each other while he was still around.

The weekend before his death, our house was filled with people who worked up
the courage to come say goodbye, he sat among them in the living room and took
a few minutes in person with everyone as much as his state allowed. I sat on
his bed as he was treated with euthanasia, which was one of the most intense
experiences of my life. I still miss the man every day, but because of the
process we had together, I have nothing but fond memories of the times he was
still there, including the very hard periods of time that come with a disease
like this.

This turned into a bit more text than I intended but my point is this: If you
ever have a choice in the way you are to die, take heed of the points in this
story. It may seem brutal at times to be as honest and open as you can about
such an intimate process, but having gone through it once, I have absolutely
no regrets. I wish Pieter and his loved ones all the best in the coming times.

~~~
paxcoder
Revolting. I protest against suicide, the "assistance", the approval, and the
very idea that it could somehow be eu (good).

~~~
Ironchefpython
That's an opinion that is perfectly valid for an individual to have.

However, when you express this opinion in an expressly negative way, it makes
it sound like you are attempting to invalidate the opinions of people who
might hold contrasting beliefs. And history has shown this to be one of the
top 10 causes for conflict and wars.

Perhaps you might find a more positive way to express your personal beliefs?
Perhaps you could say, "I wish we lived in a world without pain or terminal
illness, so nobody would have to make the choice between pointless suffering
and death".

If you find some way to contribute to the conversation without calling a man
dying of cancer "revolting", you would have a better chance of finding common
ground and reaching consensus.

~~~
throwaway324324
To disagree is to try to invalidate contrasting beliefs. They aren't saying
"people who commit suicide are revolting", nor "I wish we never had to make
tough choices that tested our moral constitution" (like you suggest). They're
saying "saccharine suicide-endorsement is revolting".

There's no consensus arising from softening and "adjusting" each other's
views. We're better off describing things clearly.

What is euthanasia, except killing yourself because you have no hope for your
remaining life, like every other suicide? Is it justified because you had your
family and your doctor agree with you?

------
anexprogrammer
Good journey sir. Thank you for this piece. I feel your model should become an
international standard.

I am saddened to see you are so young.

> ... and enforce the barbaric torture of decay and failure. It's especially
> relevant for cancer, which is a primary cause of death

I'm glad you find yourself somewhere enlightened. As someone who watched his
father die of cancer over 2.5-3 years in the UK it almost robbed me of my
father for a while. The last six months were brutal. He was either away with
the fairies on Morphine, or in his increasingly rare lucid moments, pleading
with NHS to reduce his dose. He chose pain and lucidity over a zombie state
yet was often denied that choice as the system sought to reduce pain above
all. He made it plain when he could, many times during the end months, that he
didn't want to play this game any more.

Post death, our memories were of the brutality, of the incoherent husk on
drugs who had had enough long since, of the ever increasing dosages and
tripping in the system's wish to reduce pain, of the morphine smell. Of being
increasingly worn down by it. It was harder in those early weeks after death
to remember the real man, so defined by his mind, intelligence, humour and
practical jokes. I still miss my best friend.

The UK is no nearer enlightenment on this topic today than 20 years ago when
my father died. The views of those claiming a hotline to god, in our
increasingly atheistic country, were exceptionally hard to hear, yet always
sought in any media discussion of euthanasia.

I am thankful your children and other family will have the blessing of kinder
memories.

~~~
loopbit
At least the UK seems to be making moves toward a better system, Terry
Pratchett had a bit to do with it. The rest of the european countries are
blind to this issue.

This is something that hits very close to home, as I'm in the same path as
Pieter and your father and I see that path getting me to the same end. If that
happens, I'd like to end on my terms, not as the husk that you describe and
not after having my family go through all the pain that you describe.

~~~
tommorris
The only real change in the last few years is when Kier Starmer, then Director
of Public Prosecution (now a Labour MP), released a set of guidelines on what
criteria are used to decide whether to bring a prosecution in a case of
assisted dying. (The CPS have a two-stage test to determine whether to bring a
prosecution: firstly, are they likely to succeed? And secondly, is it in the
public interest to bring a prosecution. The guidelines clarify what the public
interest criteria are for assisted dying cases.)

It's intended to make it so that the relatives of someone who travelled abroad
for assisted dying are less likely to be prosecuted under the Suicide Act
1961.

See [http://www.theguardian.com/society/2010/feb/25/assisted-
suic...](http://www.theguardian.com/society/2010/feb/25/assisted-suicide-
guidelines-family-prosecution)

Pretty much all attempts at legal change (whether through legislation or
through court action) in the UK have been a failure. It pops up every few
years in Parliament and is then roundly voted down.

------
danburgo
These words hit close to home. My dad just passed away from cancer/diabetes in
Florida and had to endure the "barbaric torture of decay and failure".
Basically 4 months suffering in bed until he eventually denied eating anything
and his liver failed. I asked the nurses repeatedly if there was anything to
help him go or pass and there was nothing. Something's got to change in the
US, we treat animals better than humans at the end of life

Thank you for your words

~~~
jnardiello
Same situation in Italy. Unfortunately. Anyone wanting a be euthanised has to
travel Switzerland, which is not always feasible at end-of-life (also
considering that the whole procedure costs ~20k$).

I spent my civil service as an EMT and only once I saw a doctor giving the
daughter of a terminally ill woman a piece of advice I will never forget (this
woman was in such bad conditions, she simply wasn't there anymore and spent
100% of her time with morphin-induced allucinations): after giving her the
morphin prescription he told her that "nobody is going to go behind you if you
give her an overdose" \- implying that she could end her suffering but she had
to be the one killing her.

It was by far one of the hardest moment of my life, and I was just a passive
witness. It was just brutal.

~~~
CaptSpify
One thing I've heard of is people "leaving the bottle open" next to the bed.
That way the ill person can "accidentally" decide for themselves.

~~~
rukuu001
I've heard similar. Also with family members being taught how to use the
morphine IV dripper, and what a fatal dose looks like.

The alternative is for patients to refuse food and water until they die.

I'd been thinking about this a lot because my father was diagnosed with a
terminal illness 3+ years ago. We'd discussed euthanasia, and he definitely
didn't want to spend his final 6-12 months suffering.

Because he didn't die, the docs took another look and realised he'd been
misdiagnosed (and yes, we got 2nd & 3rd opinions after the initial diagnosis).

~~~
jnardiello
Insane. In your case, I'm glad your dad was misdiagnosed for the good. I can't
imagine how this misdiagnose impacted your life and your family during the
last few years.

------
jaseemabid
To anyone who does not know, Pieter Hintjens is the CEO of iMatix, where they
build AMQP, ZMQ etc.

Take care /u/PieterH.

1\.
[https://en.wikipedia.org/wiki/Pieter_Hintjens](https://en.wikipedia.org/wiki/Pieter_Hintjens)
2\.
[https://news.ycombinator.com/item?id=11520888](https://news.ycombinator.com/item?id=11520888)
3\. [https://twitter.com/hintjens](https://twitter.com/hintjens)

~~~
puranjay
I don't know about his work, but he is a terrific writer!

~~~
nickpsecurity
He's this guy:

[https://news.ycombinator.com/item?id=11558468](https://news.ycombinator.com/item?id=11558468)

Plenty links so you can all learn from and enjoy his work. :)

------
sillysaurus3
I didn't know Pieter before today. He's one of the coolest people I've had the
good fortune of coming across:

> My first free software is from 1991. I realized the power of community
> gradually from 2005 when fighting software patents in Europe. I refined and
> tested the techniques in the ffii for projects like digistan. I saw the
> failure of money and power in amqp. In zeromq it took years to find the
> right patterns. I documented much in culture and empire.

This earned my respect beyond words:

> "There's this experimental cure people are talking about." This gets the ban
> hammer from me, and happily I only got a few of those. Even if there was a
> miracle cure, the cost and stress (to others) of seeking it is such a
> selfish and disproportionate act. With, as we know, lottery-style chances of
> success. We live, we die.

And this is just awesome:
[https://news.ycombinator.com/item?id=11521249](https://news.ycombinator.com/item?id=11521249)

 _" I'm sorry to hear this, Pieter. I don't have a question, but would just
like to wish you well"_

> Excellent question! (can you tell I'm bored in a hospital)? Well, it all
> started when I was about three, and I discovered ants. Fire ants, to be
> specific. Biting me all over cause I'd chosen to hide right on top of their
> nest. There's a lesson there.

Thanks, Pieter. For everything!

\--

If you'd like to thank Pieter more directly, he's accepting Paypal donations
at ph@imatix.com.

> Well this is really kind. Yes, I'm pretty broke and have three young
> children who will be semi orphans. Cue violins. Happy to receive on PayPal
> at ph@imatix.com. I will give my family the keys to that so they can put it
> aside for ma wee bairns... Thanks for suggesting this.

~~~
musha68k
And do yourself a favour and buy his highly insightful and all-around great-
to-read books:

[http://hintjens.com/books](http://hintjens.com/books)

~~~
restalis
He gives his books for free, so I can't imagine what buying would do for him
(as I presume the paid sum is just the price asked by publishers for their
service/channel). If you wish to support him you can do it more directly.

~~~
PieterH
I get a decent chunk of the sale price in fact, as I'm my own publisher. Some
people like paper books, some like ebooks, some like PDFs.

------
netgusto
I wanted to express my compassion, then I figured out that's not what you
need. But then, we never shared any good moments to speak about, right ?
You're a stranger to me, and yet I can't help but feeling I know you better
after reading your letter than many people I meet on a regular basis. And it
feels warm inside. Thank you for taking the time to express this.

~~~
PieterH
Thanks for letting me know how it affects you. :)

------
dirktheman
I always like to think that we don't really die, we live on in the memories of
our loved ones. Even if you don't leave a massive legacy behind like you. When
I think back of the good moments with my grandparents I'm not sad, I'm happy I
got the chance to have experienced them in the first place.

Thank you Pieter, and godspeed on your big journey, whereever it will take
you.

~~~
artur_roszczyk
This is one of the possible afterlives described in "Sum: Forty Tales from the
Afterlives" of David Eagleman

------
goldenkey
It is not every day we see much written about death on upvote lists like
Reddit or HN. So it means a ton to see the perspective of a smart hacker who
is indeed met with the undeniable future of his own time. I'm only 26 and I
have been thinking about life and death a lot lately. Not because I would
commit suicide -- but rather because the very stupifying fact of "I'm alive!"
evades most of media and content we consume.

But it has huge implications for us in the very soon battle for understanding
if turing-complete high-level-abstracting machines would experience
"consciousness" like we do. In terms of medical care, rights, and other
aspects for thinking entities.

And Pieter, if you are reading this, I wish you well in whatever lies ahead
for your mind, and for your actions which will surely echo through the sands
of time for people. Because like you said, even if life is indeed finite --
that we take a sensible approach, our legacy should be able to give us comfort
that our actions do get magnified by time -- so do what you love, and it will
speak through future generations.

------
tjholowaychuk
Wow this really hits home. I can only hope that when it's my time that I can
go with such class and dignity. My only fear in dying is that I would regret
having not lived more, spent more time on things that really matter, or being
held back by myself.

I couldn't agree more about euthanasia, I've always envisioned a Dia de los
Muertos style party for when I go :). I would much rather go when people have
a chance to see me happy and reminiscing like you mention. I would say thank
you for your work, but I know there's much more to you than that!

------
libeclipse
Wow, that hit me harder than expected. It's rare to see someone talking so
frankly about death, and even rarer for something like this to be on the front
page.

What a legend.

------
emirozer
Pieter, in the article you wrote "Think of the Children" and wanted readers to
write stories, which is a really nice idea.. How about we think of the
children and donate some money? Is it possible to share a donation
address/endpoint ?

~~~
johnbaum1968
From another post: _Well this is really kind. Yes, I 'm pretty broke and have
three young children who will be semi orphans. Cue violins. Happy to receive
on PayPal at ph@imatix.com. I will give my family the keys to that so they can
put it aside for ma wee bairns..._

[https://news.ycombinator.com/item?id=11528967](https://news.ycombinator.com/item?id=11528967)

~~~
emirozer
Thank you for the info! But I also think that this will not get a lot of
coverage, if I need to learn this address from a comment in HN.. Hope it does
somehow..

~~~
rbanffy
It is in a comment at the original article.

------
Angostura
Well, that's embarrassing - I just started weeping in the office. Probably
because my own father has been diagnosed with cancer (in his 90s though, ripe
old age) and we are both pretty much following the communication guidelines
set out in the article.

Thanks for posting and thanks to Pieter for writing.

~~~
azazqadir
This article was really an eye opener for me, especially what not to say to a
dying person. We should be careful about that thing.

------
jimduk
Some Hintjens' quotes -

i) "One tactic I used was to take the cult techniques and reverse them"

ii) "We create culture by sharing" (extends to a successful project being a
culture, a share-alike licence, and a name/domain which of course can be
forked)

There are many others - his writing introduced me to Conway's law (was b) - "A
software system mimics the structure of the organization that produces it ") -
I've only read part of his work, time well spent and good to discuss with
programmers and non-programmers - he made me think

~~~
aleksi
b) That's Conway's law:
[https://en.wikipedia.org/wiki/Conway%27s_law](https://en.wikipedia.org/wiki/Conway%27s_law)

~~~
jimduk
Thanks - updated

------
yoodenvranx
And this is exactly why euthanasia should be made legal everywhere.

If I ever have to die of some horrible disease I want to go on my terms and do
exactly like op.

------
augustl
It would be interesting to see how many of us that has had conversations with
Pieter Hintjens. I suspect a sizable chunk of the HN crowd has interacted with
him. I've enjoyed his company on many conferences, and while he presents
himself in a very direct manner, he is also friendly and enjoyable to talk
with.

~~~
PieterH
Funny, that is how I feel about 95% of the thousands of programmers I've
talked with over the last years. :)

~~~
augustl
I'm not sure why, but something makes you stand out. I love that you present
without slides, for example, and I can't think of anyone else doing that.

------
bcg1
The first time I came across Pieter was when he was interviewed about ZeroMQ
on FLOSS weekly. I've come to find his writing to be engaging and informative,
and thank him for that.

His series of articles on psychopaths and the havoc they wreak is well worth
reading, even if it takes a while to take it all in.

My best lesson I learned on programming from Pieter was to use code generators
effectively. The advantages cannot be overstated.

Thank you Pieter, you will be missed.

~~~
eric_bullington
> My best lesson I learned on programming from Pieter was to use code
> generators effectively.

Likely among other places, Pieter discusses code generators here:
[http://download.imatix.com/mop/introduction.html](http://download.imatix.com/mop/introduction.html)

> Thank you Pieter, you will be missed.

Agreed. I posted my thoughts on his blog, although the hundreds of comments on
this page will also stand as a testament to Pieter's work and the lives that
he touched.

------
srameshc
Been a fan of Pieter Hintjens since 2010 when I found ZeroMQ and read that ZMQ
guide which was the most easy to read and fun technical guide that I read
ever. I tweeted and he replied back, and I was startstruck by a tech
superstar. He was always fun to follow and I remember one of his tweets where
he says we don't even need fruit sugar, though I never followed that advice :)
As graceful as ever. Godspeed Pieter.

------
bastijn
I actually wanted to attend that keynote and now you popup over here. Thought
it would be a nice day, some friends / colleagues presenting anyway. Somehow
my brain wandered off reading this article thinking what would have happened
if you could have presented this blog post as a keynote. How would the
audience react, would it differ from this where people have more time to
digest it? Definitely some awkward social event afterwards I'd bet.

Only thing I missed in your post is a snappy remark to alternative medicine
(not expiremental, mind you); would have made it perfect. That stuff usually
conflicts with the actual treatment and even if it doesn't and people survive
they say it is because of the alternative junk instead of the actual treatment
they conveniently forget to mention they took as well. You know, these sites
that claim it's true and proven linking to multiple studies showing
it...performed by themselves and published on their own website only.

I wish you the most with the time you have left but have no doubt you will
make it count.

Well, one thing left.

This is Bob.

Bob is dying.

Bob doesn't whine or bitch about life being unfair.

Bob is one tough motherf __*er.

Be like Bob.

.O

-|-

./\

P.s. If you think the stick figure sucks you should see my real drawings.

~~~
lbebber
Hey - it's very respectable to go out with such dignity, but please don't call
feeling bad and complaining about it "bitching" or "whining". The experience
varies from person to person and it can be utterly terrifying to some. (Unless
this is a reference I'm not getting or something, then nevermind)

~~~
bastijn
I completely agree. Didn't think to much about it, indeed an Internet meme.
Seems I can't edit my original comment anymore but know that I definitely do
not consider people taking another route whiners or bitchers. There is no
Wrong way to do it.

------
jkarneges
I've never known anyone who knew their death was imminent, and it pains me to
see cancer strike another beloved member of the tech community, but I am
fascinated by how Pieter is handling his situation. Delegating his tasks away,
being frank about his condition and its progress, and now this protocol
article. Even though his life is being cut way short, it almost seems as if he
has _extra_ time to get his ducks in a row and share wisdom. Many others die
suddenly or after losing mental faculties and don't quite have the same
opportunity.

------
aliostad
For those who had the opportunity and pleasure of meeting you personally, the
day the news broke out was a black day. You are a person who makes a deep
impression, your thoughtfulness and very balanced view and how you articulate
them. I now read your writings and find them even more compelling: sharp
observation and bravery to spell the truth out.

Death is coming to all of us. We all die. Death of some, however, will be a
big loss. You, sir, are among them.

------
danso
This is his last blog post, but according to Github, he's still actively
contributing code and comments as of 7 hours ago:

[https://github.com/hintjens?tab=activity](https://github.com/hintjens?tab=activity)

------
fiatjaf
I must say that the cable joke
[https://twitter.com/hintjens/status/722315427200765952](https://twitter.com/hintjens/status/722315427200765952)
was great.

------
jwildeboer
Best thing I ever created with Pieter was stallmanism.com a few years ago. And
the beers we drank over the years discussing a wide range of topics while
typically being surrounded by people that started to shake heads after a few
minutes of listening in. Moments that will survive everything. Thank you,
Pieter. Love you.

~~~
PieterH
Love you too, Jan.

------
porjo
I've seen Pieter speak both in person and on video and it's hard not be
impressed by his conviction and passion. Clearly a very clever guy with a lot
of interesting ideas. Quite a polarizing character by all reports, but one
that has made a significant contribution to the open source community
nonetheless.

Godspeed Pieter.

------
okreallywtf
One thing that I observed the year I lost two great uncles (one from one side
of the family and six months later one from the other) to cancer was how easy
it is for the closest family to get very tied up in the logistics and medical
side that people weren't really taking as much time to really talk to them.
Granted they weren't considered terminal until close to the end.

As the younger nephew, I didn't feel as much responsibility to be involved
with the logistics (it felt more awkward to me but I think it was comforting
to the children, spouses etc). So instead of joining in on the
doctor/prognosis conversations and later the funeral arrangement/what to do
with the house stuff, I just sat and talked to my uncles instead.

I had known both of them my entire life but I realized I knew almost nothing
about them. All our interactions were just uncle to nephew, family occasions
kind of stuff, but by this time I was an adult (just barely), and all the
sudden we were just two people talking and I learned more about them in a 20
minute session than the prior 20+ years. Some other family who were on the
periphery of the conversation confided later that they regretted not having
those moments while they had the chance. I didn't even talk that much, just
enough to make it a two way conversation, but I found my uncles both were very
at peace but wanted to reminisce and tell stories they probably hadn't told
anyone in decades. One uncle told me about joining the military during Korea
and having gone through all the training and finally being sent all the way
there to have the war end practically the day he got there and he ended up
being sent right back and what a strange conflicted experience it was for him.

I've started visiting with my other elderly family a lot more since then and
have had some similar conversations that didn't require anyone being
terminally ill, but somehow that seems to make those conversations a little
easier.

I can definitely agree with the piece, especially about what to say and what
not to. I'm not expert by any means, I just did the only thing that felt
natural whatsoever: just talk to them like a person and let what happens
happen. Granted I had the benefit of the fact that they were well taken care
of by their children and others, otherwise it would have been much more
difficult.

------
weixiyen
The level of courage and calmness it takes to write something like so soon
after the news he just got. Dude is top fucking percentage.

------
gerbilly
It's wonderful to see someone approaching death with such a calm and balanced
state of mind.

May your wisdom and compassion live on in your children and in all the other
people you have influenced.

------
nickpsecurity
Tribute to Hintjens' great work and ideas. Man is like the Bernstein of
enterprise software with great balance of unconventional design, correctness,
performance, and innovation. Here's a list of some of his work for those
interested:

A great write-up on his theory of model-driven development and the tech that
underpinned most of iMatix:

[https://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&c...](https://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&c..).

Their website is a slide-show demonstrating their amazing work:

[http://www.imatix.com/](http://www.imatix.com/)

Generating servers from state machines and such:

[http://hintjens.com/blog:75](http://hintjens.com/blog:75)

SMT kernel for portable, multi-threaded, fast code:

[http://legacy.imatix.com/html/smt/](http://legacy.imatix.com/html/smt/)

Web server (old and new)
[https://en.wikipedia.org/wiki/Xitami](https://en.wikipedia.org/wiki/Xitami)
[http://xitami.wikidot.com/main:start](http://xitami.wikidot.com/main:start)

One of best middleware ever [http://zeromq.org/](http://zeromq.org/)

~~~
nickpsecurity
No idea how the first link turned into Google nonsense. Here's the MOP link:

[http://download.imatix.com/mop/introduction.html](http://download.imatix.com/mop/introduction.html)

------
paulsutter
Pieter came to work with us on a project in San Francisco and I'm so happy
that I could find this post through hacker news so soon after he posted it. I
don't know if he will get my email but I'm glad I had a chance to send it.

------
ascotan
Another sad day for the software community. I'm a big fan of 0mq and the work
that Pieter has done.

As for the euthanasia, my wife's aunt died of cervical cancer and it was very
rough, not only on her, but on her entire family. It's not an exaggeration to
say that they likely all have PTSD from the experience. I'm not a proponent of
euthanasia but I can see the appeal. It probably depends a lot on the
individual situation.

~~~
duncan_bayne
Bear in mind, you don't have to be a proponent of something in order to
support the right of people to choose it.

------
domrdy
Great article, thanks for sharing this. I have a question: how would you tell
your so to "move on" after you are gone? Was this even brought up ? I'd
imagine this to be a very difficult, yet necessary conversation to have.

~~~
PieterH
I'm... fortunate in that respect.

------
educar
This is easily one of the most courageous articles I have read. I can only
hope to have the same courage when dying. Thanks for inspiring me, Pieter.

------
lemonade
Hi Pieter,

I'm not sure how long you'll keep on reading stuff, but rest assured me and
many others will cherish the very fond memories of collaborating with you -
you've always had a sharp wit and a practical sort of unconventionalism that
gets things done. We have much to thank you for.

We worked together on Digistan and the "The Hague Declaration", which I helped
host in The Hague - and I think it still is a strong statement that is worth
repeating. People can sign that declaration:

[http://www.digistan.org](http://www.digistan.org)

I'm very much saddened to hear about your disease - and deep respect for the
way you handle this unannounced change of plan. I hope your remaining time
will be spent with those you love looking back on a rich life where you've
left the world better than it is - and got the max out of it. I'll send you an
email, so that when your kids are older and want to know about the things
you've done they can contact me. Take care, my friend.

~~~
mordocai
Don't forget to comment on the article as well like he requests at the end.

------
isnullorempty
I didn't know Pieter but contributed to CZMQ which was a excellent example of
how C can be well written. ZMQ was like having lego blocks for me had so much
fun playing with it, he is a profound thinker.

------
ak39
There are many days I too feel I'm ready to die. But then realize I'm not
ready. Couldn't understand why.

Reading what Pieter just wrote makes realize that I lack fortitude in one
aspect: compassion. Pieter's words confirms to me that one needs to wield
formidable muscles in the compassion department for one to be at peace and be
ready to die.

Great man, Pieter.

------
jsharf
Pieter, after reading your article I feel connected to you, despite us never
having met.

Thank you for everything you've done as a blog writer and as a member of the
open source community.

------
davesque
Pretty sobering stuff. I watched my mother die of cancer about a year ago.
Sitting next to her, as she moved back and forth in bed, incoherent,
was....well...pretty surreal. Honestly, I don't get this world we live in. We
pop in from nowhere and then live in fear of popping out in an untimely way. I
kinda get where this man is coming from. A lot of cancer therapy just seems
like such a long-shot. And it's your life on the line (including your sanity).
Bouncing around from doctor to doctor, treatment to treatment is enough to
break people. I mean totally break people. Financially and spiritually. It
didn't break my Mom. She always had hope actually and never wanted to die. But
I think it would break me.

------
restalis
It's strange to see such a protocol, that it was necessary in the first place.
I guess people just assumed the wrong things even with their emotional compass
as their guide.

Thank you Pieter, you're truly a giver till the last drop, and a model to
follow!

~~~
PieterH
Honestly, I didn't write the protocol for my friends and family, who almost
all know exactly how to behave. A few percent, maybe, have no clue. But then
people reflect Bob's style and I'm a pretty chill guy. I just thought it would
be nice to capture the experience for others, for future reference.

------
jsingleton
I can highly recommend "Culture & Empire - Digital Revolution", a very
interesting read.

I think this is a great request: "Find a moment in your own jurisdiction, if
it bans euthanasia, to lobby for the right to die in dignity."

------
bikamonki
A terrible earthquake hit my country last saturday, killing hundreds in
seconds. Before, I would have said: at least their death was quick. But now I
think like Pieter: the best way to die is when you have enough time to say
goodbye, even if that means painful cancer.

Goodbye Pieter, go happy knowing that you've put in your kids much more than
DNA, they're set for an awesome journey!

------
tie_
Thank you, Pieter, for your sane approach. The comments here demonstrate aptly
the power of your words over the HN community. I lost a father and an in-law
to cancer, and your post simply nails the target for me. I wish I'd read this
back then.

Then again, as you demonstrate, we need not focus on the things we cannot
change. Spending time with regrets is time wasted. Thank you!

------
dforshtay
Thank you, Pieter. This brings up my 80 year-old father's death by cancer 8
years ago. The end came less than two weeks after the diagnosis, despite the
doctor estimating 3-6 months.

Having flown halfway across the USA, I was fortunate to be there for his last
two hours, unlike one brother, who arrived a day late. I wish I had come with
happy memories to share, but the suddenness and shock of seeing him holding on
by a slender thread obliterated such thoughts. I took over for the at-home
hospice nurses and ministered care according to his heart and respiratory
rates.

My mother had prayed in the next room, "Lord, take this good man," and it was
obvious that his end was imminent.

Oddly, my experience felt similar to seeing the Twin Towers burn from a mile
across the Hudson River. My eyes were riveted to the inferno until I turned to
look away, then magically believed that when I returned my gaze everything
would be right and intact.

Dad's eyes never opened, but his expression brightened when I said, "Dad, it's
Dave." After hearing my mom's prayer, I busied myself with his nursing care,
but was stymied about what to say. I had already told him the most important
things on the phone after hearing the news from him that he was dying without
regrets. He was lucid and conversant then. Now, he was teetering between
states of coma and listening heart.

When my mother stepped into the hallway outside their condo, I counted his
respirations – 32 per minute – and gave him a dropper of lorazepam, as
directed. I said to him: "I can't ask you to stick around." I wanted him to
know it was okay to let go but had no other words to say it. Facially, he
shrugged. Thus did he begin his final retreat. I called my oldest brother and
his son into the room and we called his name as he drew his last breaths. When
Mom returned it was all over.

I still wonder, if I had come with loving memories to share, would he have
held on through the night and into the next morning, long enough for his
middle son to say goodbye?

It could be my life's project to write about my father, but my life has too
much urgency to reflect so long on the past. Maybe things will settle enough
for that in the future, but not now.

I am grateful for your valuable experience and will explore your writings. You
are helping your family and others with everything you've done. I believe you
are having a marvelous adventure.

David Forshtay

------
rabeeshkumar
The truth, is modern medicine treating about cancer (chemotherapy,
immunotherapy, ..) is putting a bandage on a real underneath problem. It will
comes again, may be take some years. One of good actor from my place is passed
away with cancer few weeks before
[https://en.wikipedia.org/wiki/Jishnu](https://en.wikipedia.org/wiki/Jishnu).
He also did chemotherapy few years before.

We should care about these deadly diseases, or DNA mutation, what causing it.
Any bug happens, we can resolve it, but losing a person we can't recover.

I am the one of person who also suffering from autoimmune disease.

Sorry for my English.

------
_pmf_
Maybe his publishers could increase revenue percentages for him from his books
sales; I did not even know he was an author, otherwise I would have bought one
or two of his books earlier.

------
amelius
The best protocol is to just ignore it. Animals do it, so why shouldn't we?

This approach is also fully compatible with the idea that life itself is a
"terminal disease".

~~~
minipci1321
From my observations, when put in situations similar to human's, animals don't
"ignore" it in the same way as when left to themselves out there in the
nature. (Admittedly, my sample size is very small.) We shouldn't ignore it
just because of that -- we have relations, something wild animals not always
have. This time of life is the last opportunity to tell other people that
matter in your life -- and hear from them! -- all those things you always
wanted to tell, but couldn't, for lots of stupid reasons. This will urge you
independently of how you think about life, terminal disease or greatest gift
(something in your message makes me think you are rather young).

I think Peter's protocol is exactly how this needs to be handled.

------
chaostheory
The rules may be different for children:

[http://www.cnn.com/2013/05/24/tech/gaming-gadgets/cancer-
vid...](http://www.cnn.com/2013/05/24/tech/gaming-gadgets/cancer-video-game/)

[http://www.hopelab.org/portfolio/re-
mission-2/](http://www.hopelab.org/portfolio/re-mission-2/)

------
scandox
Code Connected got me interested in programming again.

[http://hintjens.com/blog:30](http://hintjens.com/blog:30)

------
angersock
Pieter, I hope that when the time comes I have the poise and grace to deal
with things to as high a standard as you have here.

Thank you.

------
arkangel_72
I can barely understand his condition.. but its good that he has euthanasia as
an option. In my country india Article 21 of our constitution says right to
life does not include right to die.. although recently passive euthanasia is
allowed i think

------
BasDirks
I have wanted to read up on ZeroMQ. This time I will. It is meaningless in the
face of his situation, but I feel like this is how I, as a programmer, can
"talk" to him, honor him. I'm not trying to be sentimental but it feels right.

~~~
robotresearcher
And here's my small tribute: ZeroMQ is good. It's well designed and has
unusually good documentation. You'll enjoy reading up on it. It has a quality
feel.

------
rochacbruno
We translated to Portuguese [https://medium.com/@rochacbruno/um-protocolo-
para-morrer-661...](https://medium.com/@rochacbruno/um-protocolo-para-
morrer-661541f5ab9#.mq6he8rf1)

------
shanacarp
Are you getting fully sequenced before you die, so if there are discoveries
later, your kids will have a database of you to compare against?

Apparently the cost finally dropped below $1kUSD this year

~~~
PieterH
Hahaha... oh wait, you're serious?

I think, and hope my kids will slowly forget about me except as deep and
positive experiences, and it would be narcissistic in the extreme to ask them
to carry my DNA around like ashes, just in case.

None of us are that special, me certainly not. Life is for the living, not the
dead.

~~~
throwaway324324
I don't think they're talking about having your kids 3d print a clone of you
using your dna, but about having medical info available in case your cancer is
hereditary. You seem to be into giving your body to science, so it's not a
crazy suggestion.

~~~
PieterH
You're right, and I was wrong. Thanks for the correction.

------
fiatjaf
Someone has to take the Edgnenet project and move it forward!

~~~
azazqadir
What is that?

~~~
fiatjaf
Something that looks abandoned, but is the most interesting idea ever:

\-
[http://content.cultureandempire.com/appendix1.html](http://content.cultureandempire.com/appendix1.html)

\-
[https://www.indiegogo.com/projects/edgenet#/](https://www.indiegogo.com/projects/edgenet#/)

~~~
fiatjaf
In fact, the building blocks for the project are quite active:

\- [https://github.com/edgenet/drops](https://github.com/edgenet/drops)

\- [https://github.com/zeromq/zyre](https://github.com/zeromq/zyre) (with
ports for many languages, such as Go:
[https://github.com/zeromq/gyre](https://github.com/zeromq/gyre))

------
wsfull
I became an admirer of this man's software aesthetic when I first discovered
and compiled libero.

In my opinion, this is a great loss to the world of programming.

------
arnold_palmur
I lost my dad to cholangiocarcinoma when I was only 7 - rest easy knowing you
had a positive impact on the world Pieter.

------
simsicon
Death is a horrible fact for a consciousness, however "being angry or sad at
facts is a waste of time".

------
doug1001
thank you for sharing this; thank you for your extraordinary contribution to
the open source community; thank you for writing so candidly and so eloquently
about the process of building software; and thank you for making we want to be
a better developer.

------
exit
when you bring life into this world you condemn it to suffering this.

[https://en.wikipedia.org/wiki/Antinatalism](https://en.wikipedia.org/wiki/Antinatalism)

~~~
ksenzee
Is suffering all you see in Pieter's post?

------
blackflame7000
Wow. Powerful stuff... Really makes you consider your own mortality.

------
known
You can write an exclusive book and pass it on to your children

------
gm3dmo
Pieter, you made the world a better place. Thanks.

------
throwaway324324
It seems against protocol to argue with a dying man, but refraining also seems
disrespectful to Pieter. I always open the comment section hoping that someone
will disagree with the article in a thoughtful way; perhaps it's my turn,
since I disagree so intensely. Presumably others would like to at least hear
the counterpoints.

Euthanasia is bad from a practical standpoint, and an evil, because:

1\. Objectively speaking, euthanasia is suicide, and the killing of an
innocent person. If Schwartz killing himself (out of despair for his future,
fear of suffering in prison, or otherwise) was a tragedy, why is Pieter's
upcoming suicide not a tragedy? Is it because his certain death is closer?
(This view promotes the idea that a "disabled" life, where one is "unhappy",
or must be cared for at great expense, or is suffering, or (extrapolating) is
cryogenically frozen, is not valuable in and of itself; but it is.)

2\. Suicide increases the risk that friends and family will commit suicide. A
search will yield numerous studies: "2.1-fold increased risk of committing
suicide"[1], etc. If you kill yourself, you are indirectly killing the people
closest to you.

3\. If you are against the death penalty because we might execute an innocent
person, you should be against Euthanasia because we might kill a non-
consenting person. This is already the case:

> "these laws and safeguards are regularly ignored and transgressed in all the
> jurisdictions ... about 900 people annually are administered lethal
> substances without having given explicit consent, and in one jurisdiction,
> almost 50% of cases of euthanasia are not reported ... some jurisdictions
> now extend the practice to newborns, children, and people with dementia. A
> terminal illness is no longer a prerequisite." [2]

Please, when you hear someone speak in flowery language about the dignity of
choosing death, take a moment to evaluate what they are actually suggesting,
and to research why people are opposed. Many seem to think that the only
people against euthanasia are the religious whose reasoning is roughly "well,
my religion randomly chose to mark this as evil, therefore it is", which is
just not the case.

[1] [http://www.psychiatrictimes.com/articles/relationship-
suicid...](http://www.psychiatrictimes.com/articles/relationship-suicide-risk-
family-history-suicide-and-psychiatric-disorders)

[2]
[http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3070710/](http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3070710/)

(...finally, this is likely a very poor protocol for dealing with death -
people deal in different ways, and not all people will look back fondly on
having to smile all the time, or on expressing "false" hope and being told
that, actually, objectively speaking, they should not have hope. Also, a
totally minor point, but we are not like Lego houses - we do not need to be
utterly destroyed for others to live.)

~~~
mikebos
So this is from a personal point of view, my dad choose euthanasia.

1\. Yeah it's suicide. When you live in constant pain, lie in bed, get meds
that make you hallunicate and have no realistic hope for improvement that
seems like a reasonable option.

2\. Suicide usually has some form of emotional component in it that is shared
in the environment. That's why we call it euthanasia, it's not really
comparable other then the very general "choose to end own life"

3\. Sure mistakes will be made. One such controversy in the Netherlands was
euthanasia on baby's with an open back (not sure about the translation). If
they had a lot of pain or not. In general there are some pretty rigorous
procedures in place to ensure we learn from mistakes, and making sure it are
honest mistakes.

So point of this reply, it's a two way street. If you have seen the suffering
in the end stages of life euthanasia is not a bad thing. Are there drawbacks
sure, we're talking about ending a life, no matter what you do there's a
stigma involved and because actual human beings are involved it will not
always go the way it should. At the end of the day, the ideal of someone being
able to tell the world enough is enough and empowering them to execute that
decision, on certain criteria, is a better world then letting someone die in
their own feces hallucinating that worms are digging into their feet due to
meds and not being able to move due to advanced parkinson. And yes that's the
way my dad was in the end before the docter decided to cooperate with his
euthanasia.

~~~
throwaway324324
Thanks for your response. If I'm reading you right, you seem to be saying for
(1) "suicide is better than living like that" \- well... yeah, but isn't that
always the motive, what's the difference now? And for (2) "sometimes, mistakes
are made and people die who shouldn't have" \- is that what you also think
when it comes to, say, the death penalty?

Sorry about your dad.

~~~
djokkataja
Regarding (1), you mentioned in another response the value for human dignity
as a reason against euthanasia. But medicine has advanced to the point where
we're able to keep a human body alive regardless of whether or not the human
person has any sense of dignity. The grandparent comment is an example of such
a scenario.

>"suicide is better than living like that" \- well... yeah, but isn't that
always the motive, what's the difference now?

The difference is that the person and their medical personnel are in agreement
that realistically: there is not a reasonable hope that their medical
condition(s) may be cured or alleviated, so the overwhelming likelihood is
that they are going to die from their medical condition(s), and their
experience leading up to their death is going to be agonizing and severely
depriving of dignity.

With suicide, a person is choosing to take their own life even though they
don't have a medical consensus with a reasonable expectation that they are
going to die of any condition (besides old age--which I don't believe is
commonly a major factor in suicides and would probably not be acceptable).

------
flashman
> Imagine you have a box of Lego, and you build a house, and you keep it. And
> you keep making new houses, and never breaking the old ones. What happens?
> "The box gets empty, Daddy." Good, yes. And can you make new houses then?
> "No, not really." So we're like a Lego houses, and when we die our pieces
> get broken up and put back in the box. We die, and new babies can be born.
> It is the wheel of life.

I am stealing this.

~~~
msamwald
It might be consoling to some, but it is hardly accurate.

~~~
asimuvPR
How would you accurately explain death to a toddler? It is a good analogy that
takes the toddler's feelings into account. Daddy ran out of Legos but he loves
you. Quite beautiful actually.

~~~
anexprogrammer
_downvotes?_ I'm not sure how this rates those. Accuracy isn't really helpful
to a five year old who doesn't yet have all the concepts needed. The tooth
fairy isn't accurate either. Accuracy will get you an endless cycle of "but
why dad?"

~~~
aninhumer
> Accuracy will get you an endless cycle of "but why dad?"

So keep answering until you can't, and then say "I don't know". Curiosity is
something to be fostered, not shutdown with lies.

~~~
anexprogrammer
Have you had an inconsolable five year old who lost a close relative or even
pet? I prefer to use analogies and explanations they can understand and accept
to help them understand the reality. It's not the same as presuming they have
no concept of death. That's a very long way from shutting them down with lies,
avoiding the topic, or "protecting" them from it. It's trying to be age-
appropriate. I make no claims to be a perfect parent however.

When they're a little older and have more capacity to understand a fuller,
more accurate, discussion is possible.

~~~
asimuvPR
I lost a brother who has two girls. They were very young when it happened. It
was a sudden death. Gone in less than a day. You never get an answer to the
why. The Lego analogy works because it tells the child that life ends. It
doesn't explain why. Just the fact. And that's ok. Why did my brother die?
Everyday I ask myself that very same question and have yet come to an answer.
His daughters have asked me why too. I never answer and hug them. Life is but
a gift. It's not logical. But makes sense in a way. Worth living and worth
dying for.

Only thing I can come up with is to wish everybody health and a long life.

~~~
aninhumer
>It doesn't explain why.

The aspect of it that people are objecting to is that it does try to explain
why. It says "Your father needs to go back in the box so we can make other
people", which simply isn't true.

~~~
asimuvPR
I do understand that and I'm not making a religious statement. Merely stating
facts with Legos. The matter we are made up of are the Legos. We are the sum
of the parts. When we die those parts go on to be part of other things. Now
why that happens is that science has not yet caught up :)

------
marincounty
This is the most altruistic, caring piece of communicating I have ever read.

I don't know this man, but I love him. I will remember this to my own demise.

I will look for a political group that is for a humane way of dying, and ask
what needs to be done.

My father died in extreme pain. For three days he was in hell. His last words
he spoke to me, "when will it end?". I didn't have an answer. My father's
death kinda ruined my life. Even though we had our differences; every day
since that day in January, 11 years ago, I think about how he suffered, and
part of me died with him.

~~~
PieterH
It's easy to love a person who will never turn up on your doorstep with a dog
and a bottle of whiskey and ask to sleep on your couch for a week. :)

I think euthanasia rights are worth fighting for. People will argue that it's
a "death panel". Show them my article.

------
nikolay
As an Eastern Orthodox Christian, euthanasia would not be an option to me, but
I really hope I'd never have to think about it as a choice. I had an early
stage melanoma in 2004 and I know I "beat it", but I also know it's all a
matter of time and I made some important lifestyle changes and most
importantly - switching to a ketogenic diet and intermittent fasting. (Well,
also as an Eastern Orthodox Christian, I'm currently undergoing Great Lent,
and I know for a fact that carbs are terrible in the long run.)

It's so pathetic that we as a society waste so much time and energy on non-
essential stuff instead of curing major killers. Yes, cancer is a hard one to
beat (each cancer being different, too), but we've done even more complex
things as humanity. I really don't think curing major diseases has ever been a
top priority of our society! I hope one day soon people finally realize that
diseases are not what other people get (the arrogance of the healthy), but
what we all will eventually!

~~~
tomp
I'm really curious, what makes you choose and follow rules that other people
set up (i.e. whatever part of being an Eastern Orthodox Christian forbids
euthanasia), instead of making choices yourself, whatever you believe is the
best for your life? Even if you agree with _most_ of what your religion
prescribes or suggests, couldn't you just pick and choose the parts that you
like and that influence your life positively, and throw away the rest?

~~~
nemo1618
I'm hesitant to answer for nikolay, but my guess is that he has indeed made
such choices -- one of them being to live according to the doctrines
prescribed by his religion.

Rigidly adhering to dogma is something that many people take pride in. When
done consciously, it's not blind obedience; it's a sort of trust in the
groundwork that has been laid by your ancestors.

In other words, to simply "pick and choose" would denigrate the tradition that
nikolay has decided to uphold. For some people, death is preferable to the
dissolution of one's identity.

~~~
tomp
> In other words, to simply "pick and choose" would denigrate the tradition
> that nikolay has decided to uphold.

I guess what I'm missing here, is how does one come to such a decision. After
all, the "tradition" is just an arbitrary set of rules that was made up by
someone sometime in the past. I mean, even the name "Eastern Orthodox
Christian" reveals that it's a refinement of Christianity, which is itself a
refinement of Judaism, which is itself probably a refinement of something else
that just wasn't written down. And all refinements keep changing; e.g. Jews
shouldn't use "fire" on Sabbath (originally, AFAIK), but they adapted that to
modern times to include "electricity" as well.

So my question (or failure to understand) is exactly this conscious choice -
what makes one consciously decide that a set of rules made up by someone else,
which may or may not still be relevant, is the best way to conduct one's life?
I guess uprbringing has a lot to do with this - religious people rarely go
window-shopping to see which religion is "the best" \- but IMO the idea of
growing up is that you make independent decisions about your life (which
ideally includes learning from others - adopting other people's rules - and
learning from experience - changing your rules), possibly contrary to what
your parents though and taught you were the best choices.

Edit: also, I would like to point out that I see the following as distinct
choices that one can make more-or-less independently: belief (into the general
framework your religion describes, e.g. how the world was created),
obedience/following (of religious rules, e.g. Muslims shouldn't eat pork), and
belonging to community (e.g. you might not eat pork just because you don't
want to be excluded from the Jewish community).

~~~
TeMPOraL
There's no such thing as "faith" as separate to "knowing something is true".
Many people who even call themselves religious miss that. If you really
believe that the doctrines of your faith are God's prescriptions (and there
are ways to make that as a logical inference of some basic axioms within the
system of a religion), then it's not "arbitrary set of rules" \- it's _the_
set of rules God wants you to follow. That's how actual faith works.

(Speaking from experience; I used to be a true believer.)

~~~
emodendroket
Well, do they "not understand it" or do they just have a different way of
being religious?

~~~
TeMPOraL
That "different way of being religious" is stretching the meaning of the word
"religious" quite a lot. Kind of like calling yourself a 2nd-level vegetarian
- "cows eat grass, I eat cows...".

~~~
emodendroket
I don't know; a lot of churches emphasize the role of reason in interpreting
doctrines and scripture and I don't think they should all be considered false
churches for failing to just unswervingly adhere to whatever is handed down
without consideration for what has changed since it was written.

------
skylan_q
Some other reading on the topic for those who are interested:
[https://en.wikipedia.org/wiki/Ars_moriendi](https://en.wikipedia.org/wiki/Ars_moriendi)
"The Art of Dying"

------
simplemath
I hope to muster the level of clarity and pragmatism you show here if I have
time to reflect upon it when my number is called.

Inspiring.

------
anonymous777
This whole thread reeks of death acceptance culture. HN readers show off how
cool they are for accepting death instead of discussing how we as a tech
community could help cure these diseases or at least give more people an
option of being cryopreserved.

The really unpleasant truth is that if we as a society began doing serious
focused R&D on these life-threatening diseases earlier, the OP and many others
wouldn't have to die.

But we didn't. Enjoy marketing your mobile apps until cancer suddenly makes
you rot away.

~~~
adaml_623
Well I'm sure you'll be down-voted but in case you come back to check the
replies I'll just say I'm sorry that you can't accept the world at the moment.

Unless the singularity happens really soon and someone bootstraps a benign
godlike AI to take us under it's wing I think we're stuck with a very high
(five 9s ?) probability of dying.

It's fine to rail against it but sometimes you have to accept that you were
born in the dark ages and life is short.

~~~
TeMPOraL
It's not either/or. We could accept that _and_ fight it, so that our children,
or our children's children won't have to die anymore.

------
samio
Edit: the date has been fixed in the artice. Also: I'm sorry.

So, what's up with the dates?

First, the article date:

> wrote on 22 Apr, 05:43 (4 hours ago)

Then later in the text:

> and on 25 April my oncologist confirmed it was cancer.

Seems like someone is a secret time traveler...?

~~~
bsandert
Or he may have been diagnosed one or more years ago.

~~~
tomp
No.

[https://news.ycombinator.com/item?id=11520979](https://news.ycombinator.com/item?id=11520979)

> PieterH 3 days ago | parent | flag

> Just found out today, after a week of tests and six weeks of feeling
> gradually worse. I'll try to answer your questions. I'm on my phone.

~~~
bsandert
I stand corrected.

------
drivebyops
Thought this was something for killing processes judging by the title and it
being hacker news

