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A Protocol for Dying

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pieterh wrote on 22 Apr, 05:43 (202 days ago)

Time for my last article (as it turns out, not really). I could probably write more,
yet there are times for everything and after this, my attention will be focused on
the most comfortable position for my bed, the schedule for pain killers, and the
people around me.

Yesterday I had twelve visitors, including my lovely young children. You'd think it's
exhausting, yet the non-stop flow of friends and family was like being in a luxurious hot
bath with an infinite supply of fresh water.

I was a disconnected and lonely young man. Somewhat autistic, perhaps. I thought only of
work, swimming, my pet cats, work. The notion that people could enjoy my company was
alien to me. At least my work, I felt, had value. We wrote code generators in Cobol. I
wrote a code editor that staff loved because it worked elegantly and ran on everything. I
taught myself C and 8086 assembler and wrote shareware tools. The 1990's slowly
happened.

Over time I learned that if you chat with a stranger, in the course of any kind of interaction
(like buying a hot dog, or groceries) they'll chat back with a beam of pleasure. Slowly, like
a creeping addiction to coffee, this became my drug of choice.

In time it became the basis, and then the goal of my work: to go to strange places and
meet new people. I love the conferences because you don't need an excuse. Everyone
there wants, and expects, to talk. I rarely talk about technical issues. Read the code, if
you want that.

And so I'm proud of my real work, which has been for decades, to talk with people, listen
and exchange knowledge, and then synthesize this and share it on with others. Thousands
of conversations across Europe, America, Africa, Asia. I'll take whatever credit people want
to give me for being creative, brilliant, etc. Yet the models and theories I've shaped and
documented are consistently drawn from real-life experience with other people.

Thank you, my friends, for that. When I say "I love you" it's not some gesture. You literally
kept me fed, professionally and intellectually.

So I wanted to document one last model, which is how to die, given some upfront
knowledge and time. I'm not going to write an RFC this time. :)

How it Happened

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Technically, I have metastasis of bile duct cancer, in both lungs. Since February I've had
this dry cough, and been increasingly tired and unfocused on work. In March my Father
died and we rushed around arranging that. My cough took a back seat. On April 8 I went
to my oncologist to say that I was really not well. She organized a rush CAT scan and
blood tests.

On 13 April, a horrific bronchoscopy and biopsies. On 15 April, a PET

scan. On 16 April I was meant to drive to Eindhoven to keynote at
NextBuild. Instead I went to the emergency room with explosive
pains in my side, where they'd done the biopsies. I was checked in
and put on antibiotics, which fixed the pain, and on 18 April my
oncologist confirmed it was cancer. I'm still here, and my doctors are
thinking what chemo to try on me. It is an exotic cancer in Europe
with little solid data.

What we do know is that cholangiocarcinoma does not respond well to chemotherapy.

Further, that my cancer is aggressive and fast moving. Third, I've already some clusters in
other parts of my body. All this is clear and solid data.

So that day I told the world about it, and prepared to die.

Talking to a Dying Person

It can be horribly awkward to talk to a dying person (let's say "Bob"). Here are the main
things the other person (let's say "Alice") should not say to Bob:

"Hang in there! You must have hope, you must fight!" It's safe to assume that Bob is
fighting as hard as possible. And if not, that's entirely Bob's choice.

"This is so tragic, I'm so sad, please don't die!" Which my daughter said to me one
time. I explained softly that you cannot argue with facts. Death is not an opinion.
Being angry or sad at facts is a waste of time.

"You can beat this! You never know!" Which is Alice expressing her hope. False hope is
not a medicine. A good chemotherapy drug, or a relaxing painkiller, that's medicine.

"There's this alternative cure people are talking about," Which 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.

"Read this chapter in the Bible, it'll help you." Which is both rude and offensive, as
well as being clumsy and arrogant. If Bob wants religious advice he'll speak to his
priest. And if not, just do not go there. It's another ban hammer offense.

Engage in slow questioning. This is passive-predatory, asking Bob to respond over and
over to small, silly things like "did I wake you?" Bob is unlikely to be a mood for idle

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chitchat. He either wants people close to him, physically, or interesting stuff (see
below).

Above all, do not call and then cry on the phone. If you feel weepy, cut the phone, wait
ten minutes, then call back. Tears are fine, yet for Bob, the threat of self-pity looms darker
than anything. I've learned to master my emotions yet most Bobs will be vulnerable.

Here are the things that Alice can talk about that will make Bob happy:

Stories of old adventures they had together. Remember that time? Oh boy, yes I do
it was awesome!

Clinical details. Bob, stuck in his bed, is probably obsessed by the rituals of care, the
staff, the medicines, and above all, his disease. I'll come to Bob's duty to share, in a
second.

Helping Bob with technical details. Sorting out a life is complex and needs many hands
and minds.

"I bought your book," assuming Bob is an author like me. It may be flattery, or
sincere, either way it'll make Bob smile.

Above all, express no emotions except happiness, and don't give Bob new things to deal
with.

Bob's Duties
It's not all Alice's work. Bob too has obligations under this protocol. They are, at least:

Be happy. This may sound trite yet it's essential. If you are going to be gloomy and
depressed, Alice will be miserable every time she talks to you.

Obviously, put your affairs in order. I've been expecting death for years now, so had
been making myself disposable wherever I could. For family, that is not possible. For
work, yes, and over the years I've removed myself as a critical actor from the ZeroMQ
community.

Remove all stress and cost that you can. For example Belgium permits euthanasia.
I've already asked my doctors to prepare for that. (Not yet!, when it's time) I've
asked people to come say goodbye before I die, not after. No funeral. I'll give my
remains to the university here, if they want them.

Be realistic. Hope is not medicine, as I explained. If you are going to negotiate with
your doctors, let it be pragmatic and in everyone's interests. I've told mine they can
try whatever experimental chemotherapy they wish to. It's data for them, and the
least I can do for a system that's given me five+ years of extra life.

Assume the brutal worst. When my oncologist saw my scan she immediately called me

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and told me, in her opinion, it was cancer. In both lungs, all over the place. I put the
phone down, and told the children. The next day I told their schools to expect the
worst, then my lawyer, then my notary. Ten days later the biopsies confirmed it. That
gave us ten more days of grieving and time to prepare.

Be honest and transparent with others. It takes time to grieve and it is far easier to
process Bob's death when you can talk about it with Bob. There is no shame in dying,
it is not a failure.

Explaining to the Children

My kids are twelve, nine, five. Tragic, etc. etc. Growing up without a father. It is a fact.
They will grow up with me in their DNA, on Youtube as endless conference talks, and in
writing.

I've explained it to them slowly, and many times over the years, like this. One day, I will
be gone. It may be long away, it may be soon. We all die, yes, even you little Gregor. It is
part of life.

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.

But mostly I think seeing their parent happy and relaxed (not due to pain killers), and
saying goodbye over weeks feels right. I am so grateful not to have died suddenly. I'm so
grateful I won't lose my mind.

And I've taught my children, to swim and bike and skate and shoot. To cook, to travel and
to camp. To use technology without fear. At three, Gregor was on Minecraft, keyboard in
left hand, mouse in right. At seven, Noemie learned to shoot a pistol. They speak several
languages. They are confident and quick learners, like their dad.

And everyone needs to learn what it means to die. It is a core part of being a full human,
the embrace of one's mortality. We fight to live, of course. And when it's over, we embrace
the end. I'm happy that I can teach this lesson to my children, it is one that I never had.

Euthanasia
I am, finally, so glad I never quit Belgium. This country allows for death on demand, for
patients who are terminal or have a bad enough quality of life. It takes three doctors and a
psychiatrist, in the second case, and four weeks' waiting period. In the first case, it takes
one doctor's opinion.

My dad chose this, and died on Easter Tuesday. Several of us his family were with him. It

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is a simple and peaceful process. One injection sent him to sleep, into a coma. The second
stopped his heart. It was a good way to die, and though I didn't know I was sick then, one
I already wanted.

I'm shocked that in 2016 few countries allow this, and enforce the barbaric torture of
decay and failure. It's especially relevant for cancer, which is a primary cause of death.
Find a moment in your own jurisdiction, if it bans euthanasia, to lobby for the right to die
in dignity.

My Feelings on All This

I've never been a fearful person. My last brush with death left me so casual about the
whole concept of professional and social risk that I became the predatory character Allen
Ding so nicely describes. That calmed down after our Game of Thrones project ended. It
was never really me, just the person I became to make things work, in that place and
time.

Having had years to prepare for this, and having seen a great many delicate plans come
together over those years, leaves me deeply satisfied. Since 2011 I've become an expert
pistol shot, taught myself to play piano (and composed many small pieces), seen my
children grow into happy, bubbling characters, written three books, coached the ZeroMQ
community into serene self-reliability. What more can a Bob ask for?

The staff here are lovely. I've no complaints, only gratitude to all my friends for the years
of pleasure you've given me, my drug, which kept me alive and driven.

Thank you! :)

Think of the Children

Please use this article to add your stories. If you have them elsewhere, or you emailed
me, copy/paste as a comment. Feel free to write in Dutch or French if that's your
language. I'd really like a single place where my kids can come and read what other
people say about their dad.

Many people have asked my PayPal address ph@imatix.com, to send a donation for my
children.

Living Obituaries
Thank you to the following people for their articles:Ewen McNeill, Allen Ding, Meredith L.
Patterson, Dylan Beattie, Jef Claes, Josh Long, Brian Knox, Yves, Alan Yorinks, Stijn
Volders.

Translations and Reproductions

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This article or parts of it have been reproduced in Chinese, Facebook, Russian, Geek times,
Italian, Il Post, The Guardian, Dutch, RTL Nieuws, N.TV in Germany, and French,
Romanian, and was much discussed on Hacker News.

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Thank you Fold

NuLL3rr0r 10 Oct 2016, 08:45

R.I.P. Pieter Hintjens!

Thank you so much for the great projects, books and your protocol for dying that you left
behind. It's a very solid and thoughtful read. Recently, I've experienced loss of a friend and
also my grandfather which despite the negative psychological impact as a whole affected me
in a better way. I must go through it again cause I think it will help me put it all together.

Your kids must be grateful and proud to have such a father.

Thank you!

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A Protocol for Living Fold

jedmedgrey 7 Oct 2016, 16:51

To Pieter's children: you had an extraordinary Father. Because of that, you still have, and will
continue to have, his strong positive influence in your lives. His words will be available when
you need them, and his wisdom and humor will help you through the trials you will face as
you grow up, become adults, and as you face your own, inevitable, deaths.

Pieter's words apply to Life - to living it well, openly, honestly, and without denying a basic
fact: we will all die. We may not know how or when, but every one of us will die.

We can accept that fact and live our lives well, being kind and generous to those around us,
contributing in our chosen professions, and helping the world be a better place in ways both
small and large. The gifts we receive, as Pieter learned, are immeasurable, full of love, joy,
friends and family.

Or we can be mean, petty, selfish, jealous, greedy, grabbing only for ourselves. We might

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wind up with more monetary wealth and material goods than we ever thought possible. It
doesn't matter in the end: we still die, and we cannot take money or goods with us when we
do.

How much better to be surrounded by loved ones, both family and friends, during our last
months, weeks, days, hours. What a gift to be able to decide exactly when that last moment
will be, so we can ensure that we have the love, support, and comfort to face the end calmly
and yes, joyously, but also to give those we care about the chance to help us through those
last minutes. We don't have to die alone, and our loved ones don't have to regret that they
were not there, that they "let" us go alone, perhaps afraid and sad, without someone there
saying "We love you, and it is okay for you to leave us now."

Please check on the laws where you live and add your voice to those that support "Right to
Die" and "Death with Dignity" legislation. Volunteer for Hospice, visit people in long-term care
facilities and hospitals who do not have family and friends to do so. Your lives will be richer
for it, and who knows, you may reap the benefits when it is your time to pass from this
beautiful blue and green world.

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I loved Social Architecture Fold

omidfi 11 Aug 2016, 06:06

I loved social architecture, and now I'm reading the psychpath code.

Have you read Marcel Proust? Your writing reads on itself so smoothly, to me it seems like I'm
reading Proust.

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Thank you Fold

santhoshknn 25 Jun 2016, 23:54

Dear Pieter,

I wanted to drop a note sincerely thank you for the book The Psychopath code. Having had
the misfortune of working with people who are pure evil, your book was really helpful. I hope
to read it again (just bought the Kindle edition). Thank you again for your writing. Your
children are truly lucky to have a father like you and I am sure they will be happy to read all
the comments from strangers whose lives you have touched.

Thank you again.

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Things I relate to Fold

Dieter Gillis 27 May 2016, 02:01

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Hi Pieter

I just saw your 'Trick-better-software'.

Mainly to hear your voice. I don't understand 90% of what you're saying. But I connect when
you talk about Minecraft. My boys (5 and 6y.) play it at a basic level. And I love that it is that
basic for learning programming. I hope it gives my boys a basis for working with computers
and programming later on.
I got even more thrilled when you explain why working together is important and especially
with young kids. You adress a topic I don't hear a lot. Please, learn from kids. Copy their open
view on the world and respect and prize their contribution.
Thank you.

Last edited on 27 May 2016, 02:02 by Dieter Gillis Show more

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Bedankt! Fold
Sofie76 26 May 2016, 12:05

Beste Pieter

Ik was 17 en een ramp op de weg en bovendien zag ik het nut van te leren rijden helemaal
niet in. Iedereen die mij wou leren rijden, werd na een tijdje zenuwachtig omdat ik er echt
niets van bakte. Zelfs de lessen in de rijschool hadden tot niet veel resultaat geleid.

Toen bood jij aan om mij te leren rijden. Je rustige persoonlijkheid, je vragen (wie rijdt er nu
achter jou? Welke kleur heeft de auto achter jou?), je motiverende woorden, enz. zorgden
ervoor dat ik in amper 2 uur zelfzekerheid en zin om te rijden kreeg!

Ik krijg vaak complimenten over mijn rijstijl en over mijn parkeertechniek en elke keer vertel
ik aan de complimentengever dat het dankzij jou is dat ik dat alles kan, dat het dankzij jou is
dat ik kan rijden :)

Heel erg bedankt daarvoor! Jij was het misschien al vergeten, maar ik denk nog bijna
dagelijks "en wie rijdt er nu achter mij en welke kleur heeft de auto?" :)

Heel veel liefs!

Sofie

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uhlmann 23 May 2016, 03:39 Fold

Hi Pieter,

I like your protocol, such a great piece of humanism.

We met in FFII some years ago. It was quite a ride. :)
Just want to wish you and your family all the best.

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Stephan

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...read what other people say about their dad Fold

ultrabug 16 May 2016, 09:39

Ok Pieter, being a dad since a few months it took me some time to actually start writing this
down as I relate strongly with you and your loved ones.

Since I've had the chance to meet you and your kids at EuroPython 2014 in Berlin, I'll
address to them in their mother's tongue.

Cela fait bientt deux ans que j'ai rencontr votre pre, dans l'une de ces nombreuses
confrences auxquelles il participe et o il vous avait amen.

Je garde de lui l'image d'une personne inspire et source d'inspiration qui a parl des
centaines de personnes pendant une heure sans une forme apparante de prparation. C'tait
la premire fois que je voyais cela et ses ides et points de vue m'ont beaucoup intress.

J'utilisais l'poque une des technologies dont votre pre est l'origine et je rencontrais
quelques difficults avec son utilisation dans des cas assez particuliers. J'ai alors particip la
formation qu'il donnait durant la confrence afin d'avoir l'occasion de lui parler pour qu'il
m'aide et me convainc de continuer utiliser cette technologie que j'aime tant.

Cela ne va srement pas vous surprendre, mais rien ne s'est pass comme je l'avais prvu :)

J'ai en ralit particip une formation moins technique que philosophique et

mthodologique sur le "comment travailler efficacement ensemble dans le monde de l'Open
Source". J'y ai vu de jeunes enfants (vous!) y dambuler et se faire embrasser par leur pre
qui ( ma grande surprise) leur parlait Franais.

M'a-t-il convaincu de continuer utiliser la technologie en question ? Non, il m'a lui-mme

convaincu du contraire !

Ce que je retiens de votre pre ? Un grand Hollandais, sourire aux lvres, super accessible et
doux avec ses enfants m'ayant donn une forte impression de libert et de bonheur. Je
n'oublierai pas la lueur dans ses yeux quand ils se posaient sur vous : vivez libres et heureux
!

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Re: ...read what other people say about their dad Fold
pieterh 16 May 2016, 11:42

Belge, on es des belges pas des Hollandais :) C'est vrai qu'on parl Neerlandais aussi a

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la maison.

Portfolio

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Re: ...read what other people say about their dad Fold
ultrabug 16 May 2016, 15:08

Ahah oui, j'ai pens Belge et cris Hollandais cause de cette langue bizarre !
dsol :)

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Thanks for ZeroMQ and 'The Psycopath Code' Fold

evadeflow 15 May 2016, 22:58

Hi, Pieter. We've not met, but I'm a big fan of your work. I'd like to share an anecdote about
how ZeroMQ helped me get past a rough patch in my career.

In the summer of 2013, a friend of minewho I'd done some freelance work for in the
pastasked me if I had time to help him get a new business venture going. He was pursuing
a contract with another company to deliver realtime location data for professional athletes
during games. The idea was to sew RFID tags into the jerseys of every player, and use an
array of sensors arranged around the periphery of each stadium to receive the data. My
friend had just received sample hardware from his customer, and needed somebody to write a
proof-of-concept C++ application that would collect data from the hardware and disseminate
it to various downstream processing nodes.

I was pretty busy with my 'real' job at the time, but it was an interesting enough project that
I told him I'd find time for it. Somehow. The comm to the hardware was via a standard TCP
socket, so we thought it should be pretty easy to just read data from this socket, convert it to
a more efficient/user-friendly encoding (think: msgpack, Protobuf, Thrift, etc) and ship it
downstream using a ZMQ_PUB socket. And it was. In the end, I delivered a few hundred lines
of code structured as two nested loops inside a single main() function. I wrote this code in a
single weekend, and billed my friend for a total of 20 hours. It maybe wasn't the best code
I've written, but my friend only needed some 'seed' code to use in early demos, and said he
would hire somebody to punch it into shape later.

Fast-forwarding 18 months: my employer laid off my entire development team! I'd never
been laid off before, but before I could work myself into a panic about what to do next, my
friend got word about my situation and contacted me. The sports project had been a huge
success. My friend offered me a job immediately!

So, I'm grateful that the tiny bit of ZMQ work I did in 2013 helped me weather what could
have been a difficult situation almost two years later. But the biggest surprise was seeing the

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nature of the changes my new team had been forced to make to my code in the interim. I
expected the code to look quite different, but, to my shock/delight, the only changes were
the addition of a few command line arguments for diagnostics/debugging, and some code to
read settings from a config file. For the most part, the code I wrote in a single weekend was
the same code my new employer had used to ship some 10 billion location data packets
during 130 sporting events in 2014!

Had I not used ZeroMQ for this, I don't believe such a feat would have been possible. The
semantics of ZMQ_PUB were just such a perfect fit that I only needed a tiny bit of glue code to
tie everything together. I've since teased apart the single main() function so I could get tests
around the message-parsing/conversion bits, but ZMQ is still doing most of the heavy lifting
for us. And it Just Works. So thanks to you and the community you've built for that.

Thanks, too, for writing 'The Psycopath Code'. I happened across it on Amazon about 6 weeks
ago and was intrigued when I recognized your name. I couldn't put my Kindle down until I'd
completed itreally fascinating stuff. My brain is still processing it. One of the main things I
took from it is just how taxing it is for me, personally, to get angry. Guilt, Shame and
Remorse always come hard on the heels of Anger, so I really don't like to go there. I've
noticed before that not everybody seems to pay this same cost, and dealing with those
people is exhausting. Your book, more than anything, has helped me become aware of my
own 'emotional chains', so I don't have to expend as much of my own energy to process
encounters with people that are able to wield anger as a weapon with (seemingly) zero
personal cost. I've always just referred to those people as 'assholes', but you've made me
realize that the damage they do is: 1) very real, and 2) much more pernicious than I'd
imagined. I don't have any psycopaths trying to feed on me at the moment, but I'll be ready
for the next one that tries to chew on me.

The 'ZMQ Guide' and 'The Pyscopath Code' were such great reads that I picked up 'Culture &
Empire' yesterday. I haven't read much of it yet, but it, too, seems fascinating. I'm going to
get back to reading it now, in fact. Just wanted to leave you this note saying how helpful your
work has been to me

Last edited on 16 May 2016, 13:56 by evadeflow Show more

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Re: Thanks for ZeroMQ and 'The Psycopath Code' Fold

pieterh 16 May 2016, 05:30

Wow, thank you for the story. It's rare that people tell us what they do with ZeroMQ. You
did a good job it's not the code you write that matters as much as all the complexity
you don't introduce that does.

And I'm so glad you like the books.

Portfolio

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Dag Pieter Fold

Geert Hintjens 14 May 2016, 14:21

Dag Pieter,

Katelijne zond het bericht uit De Standaard door, waarmee ik in n klap genformeerd werd
over jouw verdere leven en nakende dood. Plots schiet de knop op de tijdlijn heen en weer.
Wat gisteren toekomst was, is vandaag voorbije tijd. Wat lang geleden was, is nu een
levendig beeld.

Jij leerde ons Swahili. Een mini-woordenboekje in kinderhandschrift lag jaren later nog in ons
huis. Wij leerden jou verkeersregels op de fiets. Na enkele angstige momenten in de straten
van Schoten.

Van jouw vader is er het beeld hoe hij, eindelijk even terug in Belgi, plots bij de keukendeur
stond, en mijn moeder in droefheid omhelsde. Mijn kindergedachten van toen: Zoveel tranen
nog? Mijn vader is toch lang dood?

Dag lieve familie.

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