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I wrote a small piece on planned death (hintjens.com)
405 points by okket on May 4, 2016 | hide | past | web | favorite | 104 comments

I've chatted with friends about my desires should I get a cancer that is more likely to kill and not be treatable, to refuse chemo, and to live what remains of my life qualitatively rather than quantitatively.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

There was an article recently agreeing with this point--that a mix of fear, selfishness, and guilt imposed by family and friends motivates many to "keep fighting," when they had previously and privately (away from loved ones) expressed their wish to die.

IIRC, the doctor in the article discussed how awful she felt at witnessing and being part of these prolonged treatments.

Can't find it now, but this seems to be a topic with a long history on NYT:




I remember reading this:


It moved me greatly, and also resonated because shortly after a friend of mine at the time, a cyclist with a wonderful personality and charisma, was diagnosed with a stomach cancer and within two weeks, on New Year's Eve, he died.

I remember him in hospital, he knew what was coming, had taken his last ride, had refused chemo, and was now in bed dying. I remember vividly how he comforted another friend who was crying, he was in bed, in pain, and told the other friend it would be alright. How the pain wasn't so bad now, and how he would be riding soon (when he knew full well he wouldn't and the pain was causing him to wince).

It occurred to me how much he, in those last days, did more to calm and comfort the people around him, how he took so little from them.

And it occurred to me how much joy he had in those last few rides, the sun on his skin as he glided around country lanes just South of London.

It reinforced what I'd read about how Doctors die. Reinforced my personal view that life is more than a number of days. Just as work is more than a salary alone.

My wife knows of this opinion and choice, she's very strongly communicated the same opinion, and even the manner and form of her funeral.

We choose to go when the time has come, and to live life fully until that moment. Some things we would live with, but other things, with a terminal prognosis, we would embrace as the striking of the final hour. Instead of spending that hour attempting to lengthen it, we choose to live and savour every moment of it.

>There are several middle-grounds that can help extend life without prolonging it.

This is a beautiful choice of words that sent a chill down my spine just now.

Thanks for taking the time to pick out these particular words.

Why would you let that pain even take over, why not gently increase Morphine as you go? That is how it's done here in the Netherlands and, I guess also in Canada now.

A friend of mine (then 24) went home to die even though doctors still wanted to treat him. But as everyone else he didn't want to die alone, in a hospital. He went home, had a cigarette, stared over the sea, drank a beer with his soccer mates. Within 2 weeks he died. His way. those two weeks were a lot more valuable than the 2 months just spend in isolation because of the absence of an immune system.

I'd definitely choose quality over quantity, it sounds bizarre to me that you yourself would not be the person allowed to make that choice in some countries.

My father died of liver cancer. He was under the care of Hospice. They gave my father enough drugs (Morphine, benzodiazepines, ect.) in the beginning.

He lived two months pretty happy. He liked the effects of the drugs.

My father was a pretty hardcore drinker, but very functional throughout his life. He was also very conservative, and would never take an drug that wasen't legal. Growing up, every once in awhile, he would tell me, "I think I would like the effect of heroin, but I would never take it." My father could never seem to relax, kinda like myself, and my brother.

Even as a kid, I knew my father needed to switch up his drugs, but I knew there wasen't much of a choice. As the years went by, I asked him to see a psychiatrist. Of course he said no. "But dad, you have this great union insurance--just see if the Dr. has anything for you." He never went, and I don't know if any doctor would give him anything--other than a detox program. What the doctor didn't know is my father stopped drinking for two months in his thirties. He felt better, but it was obvious he was nervous. He went right back to drinking.

The problem is, I really think, my father needed a drug like clonezepam before he went into detox. Anyway, he never went. My experience with Psychiatry is they gave me anti-anxiety medication, but it just was never enough. Years later, my doctor gave me a off-label drug that did the trick. I just wish the Dr. would have tried the harder drug years earlier.

Back to my father last two months. He was pretty functional, and liked the effects of the medication. In those two months, I thought my father would turn into a more compassionate person. He didn't. He spent his free time deciding who was going to get his money. My sister, and brother both tried to manipulate him, but my father seemed to like the attention? I stayed out of the drama--just because.

Well after two months, the drugs weren't enough. He needed more, but the hospice Dr. was way to prudent on the amounts. My father only saw the Dr. once, and every other communication was by phone. The hospice nurse arrived, I believe, a week before he died. We asked her for more drugs. She said, he just needs us around him. He was misserable that week. My greedy sister kept lessening his medication so he would wake up. He would wake up misserable. The nurse thought it was o.k.--like it was an act of love. I never told the nurse, but my sister wants him up to sign a trust. I got the feeling even if I told the nurse how manipulative my sister is, I don't think the nurse would have done anything. My sister has a way of gaining people's confidence quick. Never understood how people couldn't see through her?

My father was under medicated that final week. There was not enough meds on hand. My sister had the nurse under her spell. Plus, the nurse was projecting her own father's death over my father's. The nurse was always crying, and talking how difficult it was when her father died. I'm not questioning the nurse's emotions, and at first found them--honestly--I'm glad she cared enough to show emotion, but her crying made verything more stressful. My father didn't even know who this crying nurse was in the end. My biggest gripe is she let my sister cut back on his pain/anxiety medications.

The last three days of my father's life were hell. He would wake up frightened. He was always in intence pain. He was skin and bones. My sister once lifted the sheets and said, "In a way it's interesting? I said, "What?" She said, "Oh, the way the body breaks down." Yea--I was floored. While I knew she loved her father, I didn't say anything. Plus, I knew a death like my father's would be terrible.

My father's last words to me were, "Son--when will this end?". I didn't know what to say. I wanted to say, you need more medication, but didn't. He wasen't conscious enough for me to answer his last question.

He died two days later. All the family, and nurse were there. The nurse was saying all these new age beliefs, like he knows his loved ones are here. He wants you to talk to him. My sister had her indifferent kids saying kids things into his ears. He was never fond of kids--even his grandkids, so their voices didn't sooth him. I don't even know if he knew who was trying to talk to him? He kinda rswatted them away from the bed.

The last two days where horrid. He wasen't conscious, but he felt pain. So much pain. Pain! He was back to full doses of medication, but it wasn't enough. I called the doctor, and said he needs more. The Doctor said any more, and he might die. I didn't argue. I was an emotional mess. I was just thinking what's wrong with dying at this point?

I left an hour before my father passed. The rest of the family was there. I just didn't want to see him die like this. I knew he wasen't responding to us, but still had that horrid pain. There's a part of me that feels guilty for not being there. I figured what's the point of watching my father in so much pain. I found the professionals really had no answers in my father's death.

I got home and had a few glasses of wine, and got a call an hour later. "He died." I told my sister I'm sorry. She called back a month later, and wondered why her mother, nor myself weren't calling her. I made up some excuse.

When my father died, It was so painful--I'm still not quite over it. It has been 11 years and 5 months. Even though we didn't get along; the way he died greatly affected my life. In a weird way, part of me died that day.

(I hate to say this, but when my time comes, I don't want to go the way my father did. If I'm well enough, and have the money I will go and buy drugs off the streets. I've never even bought drugs before, but I think if I have the energy I will try it? Maybe? If I'm still in CA, and we have a Right to Die bill that just passed. Sorry, I went on. The man who's writing these brave posts is hitting me hard. I'm glad he's bringing death out in the open though.)

Side note - good example of why if you have kids get all the will stuff taken care of before you get sick. Dying sucks enough to not mix kids fighting for your stuff in it.

Thanks for sharing that, in all it's gritty detail.

Thank you for sharing your story. I'm sorry that this was such a painful experience.

I've had chemo twice now, the first time I got this cancer and now a different mix (folfox). The negative effects are painful yet really minor compared to the potential of getting rid of your tumor or cancer.

The first chemo (gemcytabin) was once per week, three weeks, then pause, then again, over six months. This one is two days every fortnight, for six months. The first time I was tired and a little nauseous. This time I was pretty bad for two days after the drugs, and ended up on small doses of stuff I suspect they give to psychiatric patients, to calm my vomiting.

It is still worth doing, for two reasons. One, the chemo can and does work even when the chances are low. A day or two of feeling shit is minor, compared to the chance of not dying. This notion that chemo somehow ruins your life is not accurate, generally.

Secondly, the data goes back to medical research. This is the only reason I did the chemo both times because we all know bile duct cancer just doesn't respond to chemo. But they have to keep trying different things, and one day something will work, and then they'll refine it, and it'll save lives down the line.

I'm going to write another article, about how to be happy and "life as much as possible" even with chemo. It is about simple things like having lots of company and talking openly about your situation.

Everyone's choice is personal, and while it is not fair for people to say your hypothetical choice would be selfish, I would also ask you to be careful about your judgements on others who are actually facing this and have made a different choice.

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

I totally agree with this, but I have a hard time seeing why this logic shouldn't also be applied to people with extreme chronic depression that doesn't respond to treatment. How can we demand that someone live in for a decade or more while the very chemical structure of their brain won't let them be happy?

Of course, suicide shouldn't be chosen lightly or irrationally, and it's hard for a depressed person to rationally know when they've exhausted all their options. It may be outside the capabilities of a depressed person to rationally choose suicide.

But I have my doubts that suicide is always irrational. If I were considering committing suicide, I'd want to be able to approach my friends with that decision and know they would help me make the right decision for my situation, not repeat positivist rhetoric and call me selfish. Even if suicide really is the wrong choice for someone, I'm not convinced that the "suicide is always selfish" narrative helps that person. Instead, I think it might discourage them from talking about it, which makes everything worse.

EDIT: I'm not suicidal, not depressed, not even temporarily sad. I've just been close to some people who have been depressed for decades, and I feel like the usual narrative around often does them more harm than good.

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

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

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

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

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

Thanks so much for sharing this and congratulations on your recovery.

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



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

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

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

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

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

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

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

I think he's had a while to come to terms with it. He first got cancer in 2010 according to a blog post last year:


If you read my book The Psychopath Code you'll see my discussion on "grounding", which is a simple (yet hard) technique for keeping yourself free of destructive emotions.

That book, BTW was absolutely panned on Reddit since I'm not a psychologist. I watched hundreds of comments telling me to fuck off, to kill myself, how did I dare discuss such things without credentials.

And at the same time I watched my book sales spike up to 10 times more than ever before, and I chortled like a gleeful madman...

Sometimes it's really just a matter of perspective and I'm usually good at finding the right perspective on things.

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

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

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

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

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

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

"Internet hugs..."

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

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

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

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

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

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

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

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

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

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

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

We absolutely treat pain and air hunger with opioids in the US, if it is consistent with the patient's wishes.

That's not actually true in practice in the US: the morphine dosage used to treat pain for advanced cancers is given knowing full well it's a fatal dose. That it hastens death in addition to numbing the pain is something not much talked about outside the medical profession, but that is what is going on.

"lijfarts" (body doctor) actually ;-)

No, actually, it is LEIFarts. Because the euthanasia forum is called LEIF (Life Ending Information Forum).

no ;-) leif.be

Well, I stand corrected.

Hey, high five to fellow Belgian Pieter! :)

Yes, I was with my dad a month or so ago, same thing. One small injection to make him sleep, then after 5 minutes, one to stop his heart. It was instant, like switching off a light.

I'm in the metro, crying. Fuck.

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

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

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

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

In my case, my lungs are filling up with something that is slowly choking me. I take oxygen and have bad coughing spells, and that's it. No pain yet. When the cancer grows into my stomach it'll be worse. I've no timetable so am guessing a month or two before I need permanent pain killers and am effectively out of action.

(If I can't think and write clearly, I'm finished.)

I'm organizing a party/wake/meetup/barbeque at my place on 5th June, no matter what state I'm in. :)

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

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

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

If collective survival was the driving influence, we would have been in favor of suicide for people who were a "burden", like cancer patients.


Assisted suicide isn't a new freedom - we had it in the past, it went out of favor, and now it's favorable again. Ancient Greece had radical and crazy practices (infanticide, certain sexual pairings) that are revolting "right now". Having to come to terms with those particular practices isn't something that I look forward to doing in the future.

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

I don't know the details on nazis (national socialists), but what you're describing was actually was a goal communism - to produce totally atomized units which for everything depend only on the state (that included a totally dystopian dissasembling of families, ex. https://en.wikipedia.org/wiki/Pavlik_Morozov)

> collectivist ideologies like communism and national socialism

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

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

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

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

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

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

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

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

"It's a simplification, but historically warranted, in the sense that the USSR was created explicitly with the end-goal of leading to a communist society as described by Marx/Engels..."

IMO, it's not very fruitful to study the ideas of Marx/Engels together with the soviet union. Soviet union was a military dictatorship that used the communist story as the replacement theology for their domain.

Sure, there were the true believers who ate up the dogma but I'm pretty sure most of the soviet leadership were pragmatic revolutionaries who just wanted power. They needed to replace "the story of the czar as a loving father" with the story of the communist agenda in peoples minds.

"in the sense that the USSR was created explicitly with the end-goal of leading to a communist society"

That startup failed almost immediately and pivoted as a dictatorship. Calling the USSR communist is like calling Nintendo a playing card company.

Communism seems to work better for ants, bees, and termites. It also might, sort of, work for small groups of humans (extended families)

I think that explains why all communist 'startups' with over, say, 1000 people fail very soon.

Socialism has the same problem to a lesser extent. "Everybody has the right to get something" scales to larger populations than "everybody should get the same". Very few people would knowingly let their neighbors die of hunger, for example, but extending that to "come and have what we eat" is a step too far.

> the USSR was created explicitly with the end-goal of leading to a communist society […]

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

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

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

   wouldn't be the first time
That's why revolutionary political movements continue having a bad name.

> We cannot look into people's head. We have to take into account what they say they do.

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

I didn't mean to conflate things; imagine a benevolent communist leadership, or compassionate national socialism: you would still be under a massive ideologically influence. They might not burn your book, but expect massive resistance to anything that does not conform to the collectivist mainstream. To any human from before WW2 we are all crazy weirdos and live a life of an eccentric dreamer.

Possibly. But we do have our own conformism too. We do live under our own ideology.

There is no escaping ideology: we humans have values that go beyond our own self anyway. Good luck finding the "right" (whatever that means) ideology, though.

Could you elaborate on the radical and crazy changes ahead?

I am hesitating since that would put things that were just accepted very recently, wounds still healing, in a relation to things that are currently way out of bounds. Not my intention.

But just to illustrate, recently a court in Germany supposedly denied someone the right to marry their pet. Why? Ah and there was a promient case of cannibalism between consenting adults a few years ago.

Got moral, ethical concerns about it? Or just caught some phobia? Either way, the society-transforming force of Individualism will ensure that the individual will get their way and get to do whatever they want.

The Internet (find likeminded people, get crazy ideas, be happy alone) and the declining birth rates (more focus on individual uniqueness and development) have only accelerated this trend.

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

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

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

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

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

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

I see two large differences:

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

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

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

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

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

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


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

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

What are the downvotes for? The questions aren't rhetorical, if that's the issue - I really do want to know what distinction people see between this and suicide, which periodically comes up as a topic here, and people are so much against.

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

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

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

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

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

Memento mori, everyone.

Are you living like you're going to die?

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

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

Wonder how many people read this and think...

"I'm not going to die."

Or, a more productive thought: "We shall have to work faster." (From http://www.yudkowsky.net/other/yehuda)

Ray Kurzweil, perhaps.

(Sam & Elon too.)

thank you for writing this. #respect

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

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

edited for spelling

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

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

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

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

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

Just out of curiosity, why not?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Says who? You? When did you get elected my keeper? Stay alive all you want but keep your morality to yourself.

My answer actually didn't mention anything about watching over you to ensure that you don't inject lethal poison. I was talking about why I personally would not kill myself or ask anyone else to.

But yes, if I think it's wrong to intentionally kill a human, it follows that I neither want my government supporting it, nor for others to mistakenly think it's fine. Morality isn't something to "keep to yourself".

Presumably you think it's fine to intentionally kill, in certain special cases? Could you do the opposite of keeping your morality to yourself, and tell me what your exceptions are? (I'm wondering, for example, if it is just consent? If so, can someone buy that consent?)

Choking to death on your own vomit is what you consider a painless death? I hope you have a painless death.

> A DNR is not an order to cease basic life-support post-resuscitation.

And no one said it was; no one even hinted at it.

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

The first, the violation of her express written wishes that led to her "painless death".

Sadly, he's dead, which means his suffering has ended. The rest of us get to continue remembering until we too pass.

Suffocating while "semi-vegetative" is assumed to be painless, much like we assume euthanasia to be painless.

In any case, I'm sorry about your mother. There's not much I can say about your stepfather, except that you probably shouldn't hate him for trying to hold on to someone he loved.

This is very sad.

If you're reading this and don't have a "Living Will," know that this is exactly the sort of thing they are for.

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

I don't see anything wrong with that comment.

We detached this subthread from https://news.ycombinator.com/item?id=11627005 and marked it off-topic.

This is signal. What is written, how it's written and what's not written because writing was overwhelming are all part of it.

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

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

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

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

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

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

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

Yeah, sorry, you are right, but that was probably the most sincere reply I could post, put in a very straight form. I had to stop reading, because it was too much.

Hey its all good mate. I realized I was a bit abrasive too. Maybe I was wrong, people seem to have some strong commentary some agreeing, others disagreeing.

There are times when subduing our emotions is important for quality communication. We should rise above our instincts.

There are other times when the emotion is what needs to be communicated. When our instinct is to empathy, not tribalism. Subduing emotion at that point is inhuman.

I can't help but point out how ironic comments like this are.

If you think that's ironic, consider how ironic it is that I'm now posting about how ironic I find your post to be about responding to an ironic post.

What's ironic about my post? I never implied that I agreed with goldenkey.

I'd even argue that I was a prick. But since we are having the discussion anyhow, it would have been more academic or well..open, to see more entropy in his post. Less a vote with an emotion and more that plus a few lines of profession? But either way I skirt the line of freedom vs censorship..what makes some bytes of text inherently have more meaning than others if in basic english and comprehensible. I don't think theres much that we want to do about this except for practical reasons we need to arrange and display results for the user who only has so much time and of course we will show them the most relevant comments..by votes. Democracy usually works except when bots take over and waste peoples time detecting em

Wish I know the cure for cancer

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