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 ?
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...
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..
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.
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.
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.
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.
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.
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.
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.
I am from the Netherlands. Euthanasia is legal here, although strictly regulated (as I think it should be by the way, this is not the sort of choice that should be taken or approved lightly by anyone involved). Several doctors had to sign off on it, and they were thorough in making sure that this was his decision alone and that nobody around him was "pushing" him into it. Fortunately (if you can call it that), his medical situation was a textbook case of unbearable and hopeless suffering, and also he still had a clear enough mind to express his wishes. That made the approval process fairly straightforward in his case.
For those wondering what the typical regulations consist of, I found the following article doing a quick google search:
>> In all jurisdictions, the request for euthanasia or pas has to be voluntary, well-considered, informed, and persistent over time. The requesting person must provide explicit written consent and must be competent at the time the request is made. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3070710/
This is fairly comprehensive, which is reassuring. However, the article goes on to say:
>> Despite those safeguards, more than 500 people in the Netherlands are euthanized involuntarily every year. In 2005, a total of 2410 deaths by euthanasia or pas [physician assisted suicide] were reported, representing 1.7% of all deaths in the Netherlands. More than 560 people (0.4% of all deaths) were administered lethal substances without having given explicit consent. For every 5 people euthanized, 1 is euthanized without having given explicit consent.
Just because regulations are strict, does not mean that they are strictly followed, or enforced.
It would be relevant to know, of the 'involuntary' numbers, how many of those were statutory involuntary and for what reasons.
My hope is that in the majority of those cases the paperwork either just didn't get finished in time, or that the subject in some way did actually want this but started the process too late to be clearly of their own decision.
So you're essentially hoping that these people, who did not give explicit consent, actually (and perhaps secretly) did want to be killed?
My hope is that where paperwork did go through, no person was uncertain or regretted their life-altering decision (which, for example, increases suicide risk in one's family twofold). But I doubt that either of our hopes lives up to reality.
"When life was ended without the explicit request of the patient, there had been discussion about the act or a previous wish of the patient for the act in 60.0% of patients, as compared with 26.5% in 2001. In 2005, the ending of life was not discussed with patients because they were unconscious (10.4%) or incompetent owing to young age (14.4%) or because of other factors (15.3%). Of all cases of the ending of life in 2005 without an explicit request by the patient, 80.9% had been discussed with relatives. In 65.3% of cases, the physician had discussed the decision with one or more colleagues"
So, part of this is due to the fact that the law states that doctors must check that the patient consents _now_ with the choice. A written statement that, for example, one doesn't want to live on with Alzheimer's when one has reached a well-described state is not sufficient.
I just spent over a year with someone who died of cancer on Tuesday. I don't know if she would have opted for suicide if it had been legal here, but I do know that the last few weeks were extremely difficult for everyone involved. I have a very clear image of how cancer kills a person now. We did our best to maintain her dignity, but the body is not on your side. It's humbling, to say the least, which is a profound lesson in and of itself.
I think that euthanasia is very different from suicide. Euthanasia is an acceptance of very probable death in a way that reduces both the person's suffering, but also the suffering of those who love them (much as the beautifully written articles talks about). Suicide in contrast can devastate the lives of the people who loved them.
No, that's not euthanasia. On that account, sedation without death would count. Euthanasia is when you ask (or in some cases, force, against their conscience) someone to kill you. Compare with "suicide by cop".
We are going to die. Some of us are going to die on the street after decades of physical pain, alienation, emotional abandonment, mental illness, and alcoholism/drug abuse. Many of these have less true hope for a good life than a cancer patient like Pieter, but it would be insane if there were dozens of comments lamenting the lack of voluntary suicide services in homeless shelters (though maybe we're a bit sensitive about that sort of thing not working out too well the last time we tried it).
Humans have something that puts us above being put down like an animal. And we have to suffer for it - like we do for many of the other things that make us human.
This is not accurate. Euthanasia in Belgium (as in all countries where it's a legal act) has nothing to do with suicide and everything to do with removing pain and criminality from what is a fairly widespread act.
* Doctors who wish to help their suffering patients can do so without fear of criminal prosecution.
* Terminal patients can control their own deaths without family demanding expensive, painful treatments that have little or no chance of success.
* Such patients are protected from punishments such as loss of insurance.
* Family and friends can be shielded from extended stress and trauma.
Given that cancer is a majority cause of death in the West, and tends to be incurable in most cases, and tends to lead to massive suffering, euthanasia is IMO one of the most fundamental human rights.
You are of course free to reject such a course based on your own beliefs. However to argue that suffering and pain are the cost of being human is... invalid.
I think we at least agree on suicide. Suicide is a desperate act: we must feel deep sympathy for its victims and contempt for its promotion. But what you plan to undertake - euthanasia - is not suicide, but just something that reduces pain, stress, and financial loss.
Those are the goals, but to attain them you plan to ask someone to sedate you and then kill you by stopping your heart. The evil of suicide isn't that it's a violent or unexpected death, but that it is a planned death, the victim trading her life for benefits like reduced suffering (or in even sadder cases, life insurance payoffs, a ufo trip, honor for the emperor, whatever). The person's remaining life seems worthless, so they plan, make their decision, feel at peace and begin to put their affairs in order - I read this in a "suicide prevention" pamphlet. Please tell me what the difference is to you, since I no longer have the opportunity to ask someone in that position. I see the following answers:
* It is not suicide because I really am better off dead.
* It is not suicide because numerous doctors judge that I really am better off dead.
* It is not suicide because cancer is worse than depression and an injection is better than a rope.
* It is not suicide because my loved ones also feel at peace with my decision.
Can you tell me plainly how what you plan is different from suicide?
And sure, I agree that humans are rational animals, not suffering animals. But the world is not perfect, so there are still some times where we must endure even intense suffering to maintain our human dignity. You are fortunate enough to have access to sedation until natural death, why not take advantage of that instead?
I suspect you vastly underestimate the suffering in the last few weeks of cancer. you are literally being slowly eaten alive until there is not enough left to keep up basic bodily functions and pain medications generally stop being effective. You can be in chemical induced sleep or unimaginable pain.
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.
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?
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.
"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.
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.
I agree with some of these. Further, I found the stuff people said about him in the parent comments even more fun to read. Just goes to show how powerful his work is and how thoughtful is his style.
He said that chemo was the only thing he was trying. Does that mean we can't discuss immunotherapy here? Perhaps there are other people reading in a similar situation, or who will be in a few short years. Time and knowledge could make a difference.
Anecdotal, but my cousin was stage 4 skin and throat cancer (2 separate origin cancers), tumor ridden, on the way out. His doctor somehow got him in on a clincial trial (immunotherapy) at the Dana Farber cancer institute in Boston, MA.
That point-blank saved his life. The cancer was gone within 4 months; he's been cancer free for 5 years. His younger brother was not so lucky, lung cancer (heavy smoker), he didn't last long after diagnosis.
Anyway, the OP isn't looking for miracles, he's preparing for his departure, in a beautiful and dignified manner -- totally respect the choice, but longshots are not the same odds they used to be wrt to cancer treatments, even stage 4.
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
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.
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.
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.
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!
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?
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.
There's no such thing as a half-Christian - you either accept it all or none; there's no cherry-picking. A suicide of any form is a sin - among Catholics as well and in some other religions, too. People had been terminally ill in the past as well, but there's always a chance - even a minuscule one.
There's a massive variation in belief and practices amongst people who call themselves Christian. And I don't recall Jesus saying that you shouldn't do euthanasia for terminal cancer. He was generally a caring guy. Most of the anti stuff comes from right wing nutters born long after Jesus's death who I'd be happy to disregard.
>I don't recall Jesus saying that you shouldn't do euthanasia for terminal cancer
Jesus didn't speak about how to reply to comments on Hacker News either, but that doesn't mean that Christians are given no insight on how he or she should conduct himself or herself here.
>Most of the anti stuff comes from right wing nutters
I do hope you will evaluate this opinion more critically. I mean, I'm pretty sure Aquinas was against euthanasia, and that would have been well in line with the Judeo-Christian views on the issue throughout history.
"Throughout history" is such a funny phase. Imagine if Christians are around in another 2000 years and look back and say, "Well in the early years, for a few thousand years, Christians thought this but gradually it changed to this". Their opinion of X might be a bit difficult.
Actually I suspect that there were a few changes in the the first first centuries AD that make the 'averaging' of history quite an interesting topic.
I've seen orthodox religious people get into serious psychological problems after someone they loved died prematurely and unexpectedly. When you really believe that God has its hand in everything, death of a loved one is a hard thing to swallow: it must be some punishment or lesson, but why?
Orthodox christian religion is i.m.o. not helpful at all when coping with death.
Christianity has never been about not suffering. Many early disciples had painful endings to their lives and went through many hardships. God was with them in their pain, not their ticket to a problem-free life, on their journey to heaven where "He will wipe away every tear from their eyes, and death shall be no more" [Revelation 21:4].
One women I know that was sick in cancer said it like this to a friend of mine: I have been with him [Jesus] too long to leave Him now.
So if a parent does something their child doesn't like, but for a good reason, they must be one of 1) a bad parent, 2) incapable of doing anything better, or 3) unaware that the child won't like it?
Given a deity and an afterlife, I don't think that argument holds up. Generally the idea of God is that they understand a lot more than humans do or can. (Whether that's true or not is a different question, of course.)
Most people grieve after someone dies. Some have a harder time than others. Being religious or not has hardly to do with it.
Being Christian has nothing to do with either believing that God has its hand in everything that governs your one personal life, or that it will actively intervene in a perceptible way, either believing that death is a punishment or a lesson or easy stuff or anything of this sort.
Although one may always add such opinions, or bigotry, to any kind of faith (be it Christian or not).
I mean, you may believe in God, or not, that won't stop the world. That won't make life different than what it is: you live, you die, shit happens, for some reason, or just because of no reason particular to you.
The core of being Christian is believing in the Credo (which is sort of crazy, indeed, and that's totally accepted) and following Jesus way (and even Brian's one - you know: always look at the bright side of life) and spirit. Which requires some sort of introspection, observation, patience, love, etc. Not to say it's easy either.
Then you add what tradition (catholic, eastern, orthodox, protestant, or so many others) you're in, or you've chosen.
What you believe is one thing. That should logically not prevent you from living and seeking.
> 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).
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.)
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...".
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.
> 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?
That may not be the best. But good enough given the circumstances (time, community, energy, freedom, incentives, capacity, will, goals)?
Analogy: what makes you decide that using a fork is (not) the best way to eat some sorts of food? What makes you decide that a pair of trousers is (not) the most appropriate dress for a person? What makes you decide that nudity is (not) appropriate in a given context?
That's a piece of practical, ornemental, societal, cultural refinements made by a set of people, over centuries. And it IS practical/ornemental/societal/cultural. But what if there was an other, universal, better way? What if not? Or what if, but not (yet) in our reach?
This is exactly the point - I use forks because I was brought up that way, but I am open to the possibility that they're not the best, and in fact, I'm actively experimenting (in many areas of my life) to find "better" ways.
I don't think Orthodox Christians see their traditions as "an arbitrary set of rules made up by someone" so much as a way of living prescribed by God himself through his emissaries on Earth (well, at least I'd figure many of them do hold this view).
I think there are a few things going on here. First, while there's a great variety in the outward practices of many non-Protestant Christian Churches (e.g., the Greek Orthodox, Russian Orthodox, Roman Catholic, Coptic Christian, etc.), theologically the differences are actually fairly minor, and many of them are in communion with one another. So, for instance, the fact that the Russian and Greek Orthodox Churches are in communion with each other (or the Roman Catholic and Byzantine Catholic) means that both accept that the other is a valid expression of the Christian faith.
Now, of course, if you visit a Roman Catholic mass and a Byzantine Catholic liturgy, many aspects will be different (although there will also be many similarities). The churches will celebrate different feast days, they will fast on different days and in different manners, there will be different saints venerated, etc.
So does this mean that these traditions are arbitrary? I don't think so. How and when one fasts will vary, but the fact that one should fast does not. And the dates of a fast are not picked randomly --- in fact, if you look at any tradition of any of these churches, you will find very deep reasons for that particular tradition. It's just that there's not one right answer, so different churches have evolved their own unique answers (and in doing so, have emphasized slightly different aspects of the underlying theological truths).
So then why shouldn't a Roman Catholic like myself try out all the different churches until I find one that I like the best for myself? Living in a multicultural country like the United States, this part is harder to convey. But there is, I think, a great value in living in a society that practices its religion in a similar way. As an analogy, I could just decide that I would rather celebrate Thanksgiving on May 21 every year. But there's some value in living in a society where everyone, collectively, celebrates Thanksgiving on the same day so that families can get together and we can watch football and eat turkey. So while I could come up with my own way of practicing Christianity that would, in some sense, be valid, there is enormous value in accepting the traditions of my community that have evolved over centuries.
This all gets to a larger point in the Orthodox and Catholic faiths about hubris and respect for tradition. The idea is that, in general, practices don't stick around for centuries unless there's a good reason for it. You or I might not immediately understand what that reason is, but that doesn't mean that there isn't one. Moreover, and this is in contrast to many Protestant faiths, there is an idea in Catholicism and Orthodoxy that many truths come to us through Tradition rather than through Scripture. That is, Christ taught certain things to his Apostles, who taught them to the earliest Christians, who continued to pass them down the centuries. Some of these things were written down in Scripture, but not all. So, for instance, you won't find a passage in the Bible that forbids bishops from being married. But no Catholic or Orthodox bishops are married because this is a part of our tradition. But respect for tradition doesn't mean that the tradition is static. It just means that it changes only gradually and deliberately.
Taking your own life is seen as a mortal sin by most Christian traditions, mortal sin as in there is no forgiveness for this and you go straight to Hell. Not sure about other traditions but in the case of Orthodox and Catholic Church you are, for example, forbidden to be buried in sacred ground if you take your own life.
If you are curious you should read a bit about the history of Christianity, e.g. a Eastern Orthodox Christianity tends to be more entrenched in tradition than modern Catholic Christianity. You don't have to be a believer to read about history.
Catholic here so I have the same position on euthanasia. The thing is, there is an alternative: good palliative care, which revolves around good pain management and promoting the best quality of life in the end days. The US hasn't been very good at that type of care but there are some improvements, and more and more are getting into it.
The irony, is that sometimes, someone in palliative care might live longer than someone being actively treated. Here[1] is an extreme example. Less extreme examples ocurr every day as people undergo tests and treatments which end up precipitating the general condition of the person. 70 years old and heart arteries fully blocked and only auxiliary perfusion? DON'T go get a stress test, you already know the outcome and no significant difference will be occur in treatment.
Ask any health professional how they want to die, and almost none of them will want to "do everything possible to treat". They've seen it and it sucks: doing chest compressions, thus breaking ribs of frail elders, all because their children refuse to see them let go; seeing people with tubes up every orifice and yet still in pain, away from loved ones and surrounded by strangers… no thanks!
Public Service Announcement: if you don't have any yet, make some Adcanced Directives to document what should be done to you should you become incapacitated. You can always revise them on a yearly basis.
St Robert Bellarmine wrote "The Art of Dying Well"; for non-Catholics there are other similar writings about how to live a full life without pretending that death will never happen.
"It's so pathetic that we as a society waste so much time and energy on non-essential stuff instead of curing major killers"
Non-essential stuff like what? Fast Cars? Games? Music? You tube? maybe Religion?
Imagine all the money/smart people that are currently involved in religions because of some random reason and could be working on meaningful things... The Catholic church alone could pay for cancer research for a 100 years.
My point is what is essential to you, is not for me.
346 comments
[ 4.1 ms ] story [ 278 ms ] threadhttps://news.ycombinator.com/item?id=11528967
Godspeed Pieter.
Take care /u/PieterH.
1. https://en.wikipedia.org/wiki/Pieter_Hintjens 2. https://news.ycombinator.com/item?id=11520888 3. https://twitter.com/hintjens
Thanks for mentioning this. (The article was by itself also interesting though.)
https://news.ycombinator.com/item?id=11558468
Plenty links so you can all learn from and enjoy his work. :)
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.
What a legend.
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.
I think euthanasia rights are worth fighting for. People will argue that it's a "death panel". Show them my article.
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.
>> In all jurisdictions, the request for euthanasia or pas has to be voluntary, well-considered, informed, and persistent over time. The requesting person must provide explicit written consent and must be competent at the time the request is made. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3070710/
This is fairly comprehensive, which is reassuring. However, the article goes on to say:
>> Despite those safeguards, more than 500 people in the Netherlands are euthanized involuntarily every year. In 2005, a total of 2410 deaths by euthanasia or pas [physician assisted suicide] were reported, representing 1.7% of all deaths in the Netherlands. More than 560 people (0.4% of all deaths) were administered lethal substances without having given explicit consent. For every 5 people euthanized, 1 is euthanized without having given explicit consent.
Just because regulations are strict, does not mean that they are strictly followed, or enforced.
My hope is that in the majority of those cases the paperwork either just didn't get finished in time, or that the subject in some way did actually want this but started the process too late to be clearly of their own decision.
My hope is that where paperwork did go through, no person was uncertain or regretted their life-altering decision (which, for example, increases suicide risk in one's family twofold). But I doubt that either of our hopes lives up to reality.
Euthanasia increases suicide risks as opposed to dying painfully of natural causes?
What is the baseline here? Could you provide a source?
"When life was ended without the explicit request of the patient, there had been discussion about the act or a previous wish of the patient for the act in 60.0% of patients, as compared with 26.5% in 2001. In 2005, the ending of life was not discussed with patients because they were unconscious (10.4%) or incompetent owing to young age (14.4%) or because of other factors (15.3%). Of all cases of the ending of life in 2005 without an explicit request by the patient, 80.9% had been discussed with relatives. In 65.3% of cases, the physician had discussed the decision with one or more colleagues"
So, part of this is due to the fact that the law states that doctors must check that the patient consents _now_ with the choice. A written statement that, for example, one doesn't want to live on with Alzheimer's when one has reached a well-described state is not sufficient.
We are going to die. Some of us are going to die on the street after decades of physical pain, alienation, emotional abandonment, mental illness, and alcoholism/drug abuse. Many of these have less true hope for a good life than a cancer patient like Pieter, but it would be insane if there were dozens of comments lamenting the lack of voluntary suicide services in homeless shelters (though maybe we're a bit sensitive about that sort of thing not working out too well the last time we tried it).
Humans have something that puts us above being put down like an animal. And we have to suffer for it - like we do for many of the other things that make us human.
* Doctors who wish to help their suffering patients can do so without fear of criminal prosecution.
* Terminal patients can control their own deaths without family demanding expensive, painful treatments that have little or no chance of success.
* Such patients are protected from punishments such as loss of insurance.
* Family and friends can be shielded from extended stress and trauma.
Given that cancer is a majority cause of death in the West, and tends to be incurable in most cases, and tends to lead to massive suffering, euthanasia is IMO one of the most fundamental human rights.
You are of course free to reject such a course based on your own beliefs. However to argue that suffering and pain are the cost of being human is... invalid.
Those are the goals, but to attain them you plan to ask someone to sedate you and then kill you by stopping your heart. The evil of suicide isn't that it's a violent or unexpected death, but that it is a planned death, the victim trading her life for benefits like reduced suffering (or in even sadder cases, life insurance payoffs, a ufo trip, honor for the emperor, whatever). The person's remaining life seems worthless, so they plan, make their decision, feel at peace and begin to put their affairs in order - I read this in a "suicide prevention" pamphlet. Please tell me what the difference is to you, since I no longer have the opportunity to ask someone in that position. I see the following answers:
* It is not suicide because I really am better off dead.
* It is not suicide because numerous doctors judge that I really am better off dead.
* It is not suicide because cancer is worse than depression and an injection is better than a rope.
* It is not suicide because my loved ones also feel at peace with my decision.
Can you tell me plainly how what you plan is different from suicide?
And sure, I agree that humans are rational animals, not suffering animals. But the world is not perfect, so there are still some times where we must endure even intense suffering to maintain our human dignity. You are fortunate enough to have access to sedation until natural death, why not take advantage of that instead?
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.
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?
> 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
"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.
http://hintjens.com/books
https://news.ycombinator.com/item?id=11520888
https://www.nih.gov/news-events/nih-research-matters/persona...
91 year old former President Jimmy Carter had brain cancer and was recently treated with it and he was cured.
https://www.mskcc.org/blog/understanding-jimmy-carter-s-surp...
https://www.washingtonpost.com/news/to-your-health/wp/2016/0...
http://www.ucsd.tv/search-details.aspx?showID=25970
He said that chemo was the only thing he was trying. Does that mean we can't discuss immunotherapy here? Perhaps there are other people reading in a similar situation, or who will be in a few short years. Time and knowledge could make a difference.
In the context of this article, no, I don't have to wonder. He expresses very well why he doesn't want to entertain such longshots.
That point-blank saved his life. The cancer was gone within 4 months; he's been cancer free for 5 years. His younger brother was not so lucky, lung cancer (heavy smoker), he didn't last long after diagnosis.
Anyway, the OP isn't looking for miracles, he's preparing for his departure, in a beautiful and dignified manner -- totally respect the choice, but longshots are not the same odds they used to be wrt to cancer treatments, even stage 4.
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
Thank you for everything you've done as a blog writer and as a member of the open source community.
Knowing how to die is as important as knowing how to live, perhaps more. As he leaves us, he is giving us all an important lesson.
If I ever have to die of some horrible disease I want to go on my terms and do exactly like op.
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...?
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.
Edit: Ah, it must have been a typo, now it's fixed.
> I was checked in and put on antibiotics, which fixed the pain, and on 18 April my oncologist confirmed it was cancer.
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!
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.
What about all the other different branches of Christianity then? Catholicism, anglicans? adventists etc
Are they not Christian?
There's a massive variation in belief and practices amongst people who call themselves Christian. And I don't recall Jesus saying that you shouldn't do euthanasia for terminal cancer. He was generally a caring guy. Most of the anti stuff comes from right wing nutters born long after Jesus's death who I'd be happy to disregard.
Jesus didn't speak about how to reply to comments on Hacker News either, but that doesn't mean that Christians are given no insight on how he or she should conduct himself or herself here.
>Most of the anti stuff comes from right wing nutters
I do hope you will evaluate this opinion more critically. I mean, I'm pretty sure Aquinas was against euthanasia, and that would have been well in line with the Judeo-Christian views on the issue throughout history.
Actually I suspect that there were a few changes in the the first first centuries AD that make the 'averaging' of history quite an interesting topic.
Orthodox christian religion is i.m.o. not helpful at all when coping with death.
One women I know that was sick in cancer said it like this to a friend of mine: I have been with him [Jesus] too long to leave Him now.
Given a deity and an afterlife, I don't think that argument holds up. Generally the idea of God is that they understand a lot more than humans do or can. (Whether that's true or not is a different question, of course.)
Being Christian has nothing to do with either believing that God has its hand in everything that governs your one personal life, or that it will actively intervene in a perceptible way, either believing that death is a punishment or a lesson or easy stuff or anything of this sort.
Although one may always add such opinions, or bigotry, to any kind of faith (be it Christian or not).
I mean, you may believe in God, or not, that won't stop the world. That won't make life different than what it is: you live, you die, shit happens, for some reason, or just because of no reason particular to you.
The core of being Christian is believing in the Credo (which is sort of crazy, indeed, and that's totally accepted) and following Jesus way (and even Brian's one - you know: always look at the bright side of life) and spirit. Which requires some sort of introspection, observation, patience, love, etc. Not to say it's easy either.
Then you add what tradition (catholic, eastern, orthodox, protestant, or so many others) you're in, or you've chosen.
What you believe is one thing. That should logically not prevent you from living and seeking.
(Catholic writing here)
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).
(Speaking from experience; I used to be a true believer.)
That may not be the best. But good enough given the circumstances (time, community, energy, freedom, incentives, capacity, will, goals)?
Analogy: what makes you decide that using a fork is (not) the best way to eat some sorts of food? What makes you decide that a pair of trousers is (not) the most appropriate dress for a person? What makes you decide that nudity is (not) appropriate in a given context?
That's a piece of practical, ornemental, societal, cultural refinements made by a set of people, over centuries. And it IS practical/ornemental/societal/cultural. But what if there was an other, universal, better way? What if not? Or what if, but not (yet) in our reach?
Now, of course, if you visit a Roman Catholic mass and a Byzantine Catholic liturgy, many aspects will be different (although there will also be many similarities). The churches will celebrate different feast days, they will fast on different days and in different manners, there will be different saints venerated, etc.
So does this mean that these traditions are arbitrary? I don't think so. How and when one fasts will vary, but the fact that one should fast does not. And the dates of a fast are not picked randomly --- in fact, if you look at any tradition of any of these churches, you will find very deep reasons for that particular tradition. It's just that there's not one right answer, so different churches have evolved their own unique answers (and in doing so, have emphasized slightly different aspects of the underlying theological truths).
So then why shouldn't a Roman Catholic like myself try out all the different churches until I find one that I like the best for myself? Living in a multicultural country like the United States, this part is harder to convey. But there is, I think, a great value in living in a society that practices its religion in a similar way. As an analogy, I could just decide that I would rather celebrate Thanksgiving on May 21 every year. But there's some value in living in a society where everyone, collectively, celebrates Thanksgiving on the same day so that families can get together and we can watch football and eat turkey. So while I could come up with my own way of practicing Christianity that would, in some sense, be valid, there is enormous value in accepting the traditions of my community that have evolved over centuries.
This all gets to a larger point in the Orthodox and Catholic faiths about hubris and respect for tradition. The idea is that, in general, practices don't stick around for centuries unless there's a good reason for it. You or I might not immediately understand what that reason is, but that doesn't mean that there isn't one. Moreover, and this is in contrast to many Protestant faiths, there is an idea in Catholicism and Orthodoxy that many truths come to us through Tradition rather than through Scripture. That is, Christ taught certain things to his Apostles, who taught them to the earliest Christians, who continued to pass them down the centuries. Some of these things were written down in Scripture, but not all. So, for instance, you won't find a passage in the Bible that forbids bishops from being married. But no Catholic or Orthodox bishops are married because this is a part of our tradition. But respect for tradition doesn't mean that the tradition is static. It just means that it changes only gradually and deliberately.
why?
If you are curious you should read a bit about the history of Christianity, e.g. a Eastern Orthodox Christianity tends to be more entrenched in tradition than modern Catholic Christianity. You don't have to be a believer to read about history.
It's just as important to live as it is to not die.
The irony, is that sometimes, someone in palliative care might live longer than someone being actively treated. Here[1] is an extreme example. Less extreme examples ocurr every day as people undergo tests and treatments which end up precipitating the general condition of the person. 70 years old and heart arteries fully blocked and only auxiliary perfusion? DON'T go get a stress test, you already know the outcome and no significant difference will be occur in treatment.
Ask any health professional how they want to die, and almost none of them will want to "do everything possible to treat". They've seen it and it sucks: doing chest compressions, thus breaking ribs of frail elders, all because their children refuse to see them let go; seeing people with tubes up every orifice and yet still in pain, away from loved ones and surrounded by strangers… no thanks!
Public Service Announcement: if you don't have any yet, make some Adcanced Directives to document what should be done to you should you become incapacitated. You can always revise them on a yearly basis.
St Robert Bellarmine wrote "The Art of Dying Well"; for non-Catholics there are other similar writings about how to live a full life without pretending that death will never happen.
[1] A terminal phase Greek cancer patient leaves NY to die in peace in his Greek island and outlives all his doctors. http://www.nytimes.com/2012/10/28/magazine/the-island-where-...
Non-essential stuff like what? Fast Cars? Games? Music? You tube? maybe Religion?
Imagine all the money/smart people that are currently involved in religions because of some random reason and could be working on meaningful things... The Catholic church alone could pay for cancer research for a 100 years.
My point is what is essential to you, is not for me.