Everybody dies
April 22, 2016 12:23 AM Subscribe
Pieter Hintjens is an author and programmer best known as the founder of the ZeroMQ project. He was recently diagnosed with a rare and aggressive form of cancer. A Protocol for Dying is his latest and final blog post in which he reflects on how to interact with the terminally ill.
Seems like good advice generally. I think the social stigma around death is awful, we should be able to talk freely about it without fear or embarrassment. I agree with the point on euthenasia too, it seems to have overwhelming public support (75% of Brits https://yougov.co.uk/news/2010/03/05/majority-would-support-more-compassionate-euthana/) and no reasonable counterarguments and yet remains illegal almost everywhere.
posted by Shikantaza at 1:42 AM on April 22, 2016 [1 favorite]
posted by Shikantaza at 1:42 AM on April 22, 2016 [1 favorite]
I didn't like the first half of this; describing yourself as "I was a disconnected and lonely young man. Somewhat autistic, perhaps." is at the least off base. But that's also off topic, and the second half was far more thoughtful.
As for no reasonable counterarguments for euthanasia however? I have to disagree- having it as an option puts implicit pressure on older people, or the chronically ill to die to save their children and grandchildren the effort of caring for them.
It also massively depends on culture for use. I've spoken about this before, but even in Belgium where it is legally it is not uniformly used across the country by those who aim to avoid a painful and drawn out death. It is very rare in the francophone south, compared to the flemish north, although the reasons are unclear. It may be that doctors and tribunals in the north are more willing to allow it, whereas in the south doctors would rather try more treatment. [link]
More disturbingly for me is the case of a young woman with very severe depression was "granted permission" to die in this way, although eventually she decided not to die.[RTL][De Morgen][English] The effect is that it allows patients and doctors to 'give up' on hopeless cases. This is especially galling with regards to people with severe and chronic mental health conditions who have been failed by treatment thus far.
You can have dignity in death without state-sanctioned euthanasia. In the UK right now, the CPS has published guidance [link] on when it will favour prosecution of those who assist in suicide.
I'm trying to avoid a slippery slope argument here; and there is room for nuance for those in truly end-of-life cases. However, in those situations death is so close that there would be little time for the appropriate safeguards.
posted by Braeburn at 2:18 AM on April 22, 2016 [12 favorites]
As for no reasonable counterarguments for euthanasia however? I have to disagree- having it as an option puts implicit pressure on older people, or the chronically ill to die to save their children and grandchildren the effort of caring for them.
It also massively depends on culture for use. I've spoken about this before, but even in Belgium where it is legally it is not uniformly used across the country by those who aim to avoid a painful and drawn out death. It is very rare in the francophone south, compared to the flemish north, although the reasons are unclear. It may be that doctors and tribunals in the north are more willing to allow it, whereas in the south doctors would rather try more treatment. [link]
More disturbingly for me is the case of a young woman with very severe depression was "granted permission" to die in this way, although eventually she decided not to die.[RTL][De Morgen][English] The effect is that it allows patients and doctors to 'give up' on hopeless cases. This is especially galling with regards to people with severe and chronic mental health conditions who have been failed by treatment thus far.
You can have dignity in death without state-sanctioned euthanasia. In the UK right now, the CPS has published guidance [link] on when it will favour prosecution of those who assist in suicide.
I'm trying to avoid a slippery slope argument here; and there is room for nuance for those in truly end-of-life cases. However, in those situations death is so close that there would be little time for the appropriate safeguards.
posted by Braeburn at 2:18 AM on April 22, 2016 [12 favorites]
I don't know this guy, and I've not come across his previous opinions, so maybe I'll give him a bit of undeserved leeway...
This is a difficult read. He's right on a number of things, I think. Minimising the impact on his children is a really important point that is often missed and I applaud that sentiment.
posted by trif at 2:27 AM on April 22, 2016
This is a difficult read. He's right on a number of things, I think. Minimising the impact on his children is a really important point that is often missed and I applaud that sentiment.
posted by trif at 2:27 AM on April 22, 2016
Per the first comment here, I read his previous post (about Twitter). Pretty bad get off the lawn stuff. I also thought this one was insightful and worth my time. A land of contrasts, I suppose.
Euthanasia makes me extremely leery because of the abuse potential - much as more dignity in death is needed, I can instantly see situations where people are pushing to get the inheritance money. I wonder if it will come from more hospice guidance.
posted by solarion at 2:39 AM on April 22, 2016 [2 favorites]
Euthanasia makes me extremely leery because of the abuse potential - much as more dignity in death is needed, I can instantly see situations where people are pushing to get the inheritance money. I wonder if it will come from more hospice guidance.
posted by solarion at 2:39 AM on April 22, 2016 [2 favorites]
Braeburn thanks for your response. You say you're trying to avoid a slippery slope argument but that's exactly what you're doing when you're using the example of depression. In that particular case it seems the Belgian authorities have failed to implement the correct safeguards. Clearly euthanasia should only be an option in cases where there is no chance of recovery such as the terminal cancer the author of the original article was suffering from. One reason why suicide of sufferers of depression is always a tragedy is precisely because there is always a chance for recovery, however small. While some people do suffer for their whole lives but there is no way of knowing who those people will be.
Your link to the CPS states that "A prosecution is less likely to be required if: the victim had reached a voluntary, clear, settled and informed decision to commit suicide; the suspect was wholly motivated by compassion[...]" I ask you if society is accepting the moral principle of euthanasia what argument can their be for preventing it from taking place in a painless, comfortable environment? And what kind of peace of mind can be taken from a prosecution being "less likely"? Very little I would suggest, the dying person dies with the fear that their loved one will be prosecuted and the loved one risks their freedom for granting the dying wish.
posted by Shikantaza at 2:46 AM on April 22, 2016 [3 favorites]
Your link to the CPS states that "A prosecution is less likely to be required if: the victim had reached a voluntary, clear, settled and informed decision to commit suicide; the suspect was wholly motivated by compassion[...]" I ask you if society is accepting the moral principle of euthanasia what argument can their be for preventing it from taking place in a painless, comfortable environment? And what kind of peace of mind can be taken from a prosecution being "less likely"? Very little I would suggest, the dying person dies with the fear that their loved one will be prosecuted and the loved one risks their freedom for granting the dying wish.
posted by Shikantaza at 2:46 AM on April 22, 2016 [3 favorites]
I like the way he's embracing what is true, but I wonder how much of this is good advice for dealing with dying people in general, and how much it's about what he personally wants.
posted by Nancy Lebovitz at 3:27 AM on April 22, 2016 [8 favorites]
posted by Nancy Lebovitz at 3:27 AM on April 22, 2016 [8 favorites]
Pratchett: I'm going out before I'm a drooling mess. In bed with my cat and my family. Oh yeah, I'm going to protest for my right (and others!) to choose this.
Bowie: I guess I'll express my emotions about this last bit like I usually do. By writing a kickass concept album. Tell anyone about it? Let it be a surprise!
This guy? I stopped at this:
"This is so tragic, I'm so sad, please don't die!" Which my daughter said to me once, and then I explained that you cannot argue with facts. Death is not an opinion. Being angry or sad at facts is a waste of time.
Eeesh. Your daughter loves you, sadness isn't an opinion either. Be glad she's not an emotionless robot that simply processes your demise as a data point or something. I was her age when my dad died. 26 years later I remember it like yesterday, the day I was told. If I were an actor and had to cry on cue, too easy, I just have to remember that moment.
crap I poked that nerve and now it's a bit dusty
posted by adept256 at 4:05 AM on April 22, 2016 [28 favorites]
Bowie: I guess I'll express my emotions about this last bit like I usually do. By writing a kickass concept album. Tell anyone about it? Let it be a surprise!
This guy? I stopped at this:
"This is so tragic, I'm so sad, please don't die!" Which my daughter said to me once, and then I explained that you cannot argue with facts. Death is not an opinion. Being angry or sad at facts is a waste of time.
Eeesh. Your daughter loves you, sadness isn't an opinion either. Be glad she's not an emotionless robot that simply processes your demise as a data point or something. I was her age when my dad died. 26 years later I remember it like yesterday, the day I was told. If I were an actor and had to cry on cue, too easy, I just have to remember that moment.
crap I poked that nerve and now it's a bit dusty
posted by adept256 at 4:05 AM on April 22, 2016 [28 favorites]
It's pretty clear to me he's generalising from his own preferences, but even so this is not bad advice, just somewhat engineeringly written. Other people's emotional breakdowns or sadness is hard to deal with if you need all your energy to keep yourself alive as long as possible, some things you're tempted to say would be more for your benefit than that of a dying person and the best thing you can do in a situation in which you know you won't have long to live is to minimise the mess you'll leave your loved ones with your death.
posted by MartinWisse at 4:09 AM on April 22, 2016 [7 favorites]
posted by MartinWisse at 4:09 AM on April 22, 2016 [7 favorites]
It's a shame that the tech world is losing one of its most unusual and iconoclastic voices.
His book on ZeroMQ has been a great reference for many (including me) for messaging applications and architectures.
posted by theorique at 5:05 AM on April 22, 2016 [1 favorite]
His book on ZeroMQ has been a great reference for many (including me) for messaging applications and architectures.
posted by theorique at 5:05 AM on April 22, 2016 [1 favorite]
This weekend I'm going home to say goodbye to a long-time older friend suffering from pancreatic cancer with death looming imminently. We're very sympatico, so I know what to do and say with her; reminisce, show her a photo of my office because one of her paintings is hung prominently, thank her for some key bits of wisdom she imparted to me, etc. But this friend has a daughter my age, whom I've known since we were 2, with serious mental health issues who clearly isn't ready for any of it and is still clinging to a miracle-is-just-around-the-corner narrative. And so now, although this sounds pretty arrogant, I think further responsibilities for me include modeling to the daughter how to have meaningful conversations with her mother when the end is near. And, maybe, reassuring the mother that I'll be part of the support system for her daughter, but I have to think about whether I can make that promise. Fuck cancer.
posted by carmicha at 6:04 AM on April 22, 2016 [4 favorites]
posted by carmicha at 6:04 AM on April 22, 2016 [4 favorites]
Wow, he's survived pancreatic and bile duct cancer for a long time-- he had the Whipple procedure in 2010!
Two of my family members have died of similarly pernicious forms of cancer. Through them, I observed how many demands-- often outrageous ones-- people make of you when you are in that situation. They were both very generous about tolerating that, and also very generous in putting relationships in order. But they held back a certain amount, except from people who could really understand, i.e. people who had been or were going through terminal illness. I hope as many people as possible will make statements like this and really give us a view of what can be like. (can be, because even with my limited observation it is so different from person to person.)
posted by BibiRose at 7:29 AM on April 22, 2016
Two of my family members have died of similarly pernicious forms of cancer. Through them, I observed how many demands-- often outrageous ones-- people make of you when you are in that situation. They were both very generous about tolerating that, and also very generous in putting relationships in order. But they held back a certain amount, except from people who could really understand, i.e. people who had been or were going through terminal illness. I hope as many people as possible will make statements like this and really give us a view of what can be like. (can be, because even with my limited observation it is so different from person to person.)
posted by BibiRose at 7:29 AM on April 22, 2016
To a large extent I know I'm coming at this from a fortunate (naive even!) position. So please tell me if something I say is wrong.
There could be far more done to ease end-of-life suffering, and to develop treatments in this area which would benefit both those near the end, and people who aren't. I absolutely agree with you that compassion says something must be done to help people in that position. However, the potential for abuse is very concerning. Thank-you for sharing your feelings.
posted by Braeburn at 8:42 AM on April 22, 2016
There could be far more done to ease end-of-life suffering, and to develop treatments in this area which would benefit both those near the end, and people who aren't. I absolutely agree with you that compassion says something must be done to help people in that position. However, the potential for abuse is very concerning. Thank-you for sharing your feelings.
posted by Braeburn at 8:42 AM on April 22, 2016
Instructions for Alice:
Above all, express no emotions except happiness, and don't give Bob new things to deal with.
Instructions for Bob:
Be happy. This may sound trite yet it's essential. If you are going to be gloomy and depressed, Alice will be miserable every time she talks to you.
I agree generally with some of what was said, but this just be happy stuff rubs me the wrong way. It is fine to suggest that visitors need to not impose on the dying person for emotional stuff that boils down to denial and "just get therapy," but happiness is not really something you can insist on.
posted by Michele in California at 8:47 AM on April 22, 2016 [9 favorites]
Above all, express no emotions except happiness, and don't give Bob new things to deal with.
Instructions for Bob:
Be happy. This may sound trite yet it's essential. If you are going to be gloomy and depressed, Alice will be miserable every time she talks to you.
I agree generally with some of what was said, but this just be happy stuff rubs me the wrong way. It is fine to suggest that visitors need to not impose on the dying person for emotional stuff that boils down to denial and "just get therapy," but happiness is not really something you can insist on.
posted by Michele in California at 8:47 AM on April 22, 2016 [9 favorites]
Instructions for Alice:
Above all, express no emotions except happiness, and don't give Bob new things to deal with.
I, too, don't really agree with this one. In fact, it's completely incongruent with his rule for Bob to be honest and transparent.
If I'm knocking on death's door and everyone who comes to visit me is nothing but cheerful I'm pretty sure I will quickly tire of the charade. Now, I'm not saying I want everyone to weep a bucket of tears at my bedside, but also, hey, guess what, we all know I'm dying, can we drop the bullshit happy face and just be honest with each other about our feelings?
posted by bologna on wry at 10:03 AM on April 22, 2016 [4 favorites]
Above all, express no emotions except happiness, and don't give Bob new things to deal with.
I, too, don't really agree with this one. In fact, it's completely incongruent with his rule for Bob to be honest and transparent.
If I'm knocking on death's door and everyone who comes to visit me is nothing but cheerful I'm pretty sure I will quickly tire of the charade. Now, I'm not saying I want everyone to weep a bucket of tears at my bedside, but also, hey, guess what, we all know I'm dying, can we drop the bullshit happy face and just be honest with each other about our feelings?
posted by bologna on wry at 10:03 AM on April 22, 2016 [4 favorites]
Yeah, I learned a lot about non-fiction / technical writing from the ZeroMQ Documentation.
posted by sixswitch at 11:26 AM on April 22, 2016 [2 favorites]
posted by sixswitch at 11:26 AM on April 22, 2016 [2 favorites]
""There's this experimental cure people are talking about," Which gets the ban hammer from me, and happily I only got a few of those. Even if there was a miracle cure, the cost and stress (to others) of seeking it is such a selfish and disproportionate act. With, as we know, lottery-style chances of success. We live, we die."
It is unfortunate (and short-sighted) that people see seeking out an experimental treatment as selfish. As someone who has worked on cancer treatments, I know that a lack of volunteers is one of the many, many reasons why we aren't seeing progress in cancer treatment. Some would say it is actually the main reason. More than 20% of the clinical trials sponsored by the National Cancer Institute (so these aren't quacks) won't enroll a single volunteer. Not one. Most trials won't get enough volunteers to be statistically significant. And the costs are usually fully covered (including a reimbursement for your time, in many cases) by the sponsoring entity.
Wanting to grasp on to the last thread of hope and the desire to do something to benefit mankind while you still can aren't mutually exclusive. Much to the contrary, actually.
posted by roquetuen at 1:15 PM on April 22, 2016 [11 favorites]
It is unfortunate (and short-sighted) that people see seeking out an experimental treatment as selfish. As someone who has worked on cancer treatments, I know that a lack of volunteers is one of the many, many reasons why we aren't seeing progress in cancer treatment. Some would say it is actually the main reason. More than 20% of the clinical trials sponsored by the National Cancer Institute (so these aren't quacks) won't enroll a single volunteer. Not one. Most trials won't get enough volunteers to be statistically significant. And the costs are usually fully covered (including a reimbursement for your time, in many cases) by the sponsoring entity.
Wanting to grasp on to the last thread of hope and the desire to do something to benefit mankind while you still can aren't mutually exclusive. Much to the contrary, actually.
posted by roquetuen at 1:15 PM on April 22, 2016 [11 favorites]
" Sorting out a life..."
Jesus, I'm not sure why or what or how, but that fucking just made me get emotional. I'm not sure what emotion. Maybe something existential, this idea of sorting a life. Fuck.
posted by symbioid at 10:00 PM on April 22, 2016
Jesus, I'm not sure why or what or how, but that fucking just made me get emotional. I'm not sure what emotion. Maybe something existential, this idea of sorting a life. Fuck.
posted by symbioid at 10:00 PM on April 22, 2016
The zeromq docs are a masterpiece of technical writing; I was cribbing great ideas from them just last month.
posted by kaibutsu at 12:12 AM on April 23, 2016
posted by kaibutsu at 12:12 AM on April 23, 2016
There are people who suffer from debilitating depression, and who have tried all possible treatments without any benefit.
I think if you think that chronic debilitating untreatable pain that prevents people from working or living is something people should be able to choose not to live with, then I have to feel that you should have the same view of psychic agony without end. I don't know what my view is, but it's not that people with mental issues are like children who shouldn't have any say in their own life or fate, which I think is what our culture tends to teach us. Agency over yourself and making your own decisions is not a reward for mental health, it is an essential component for mental health to exist.
posted by gryftir at 10:43 AM on April 26, 2016 [2 favorites]
I think if you think that chronic debilitating untreatable pain that prevents people from working or living is something people should be able to choose not to live with, then I have to feel that you should have the same view of psychic agony without end. I don't know what my view is, but it's not that people with mental issues are like children who shouldn't have any say in their own life or fate, which I think is what our culture tends to teach us. Agency over yourself and making your own decisions is not a reward for mental health, it is an essential component for mental health to exist.
posted by gryftir at 10:43 AM on April 26, 2016 [2 favorites]
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