The Death of Ivan Ilyich and pain relief at the end of life
July 5, 2012 9:45 AM Subscribe
Such guidelines, allied to improved public knowledge of the issue and the ever-increasing drug and surgical armamentarium available to physicians, has led to effective medical control of pain and other end-of-life symptoms. For the conscious, competent patient, this may well be a boon, because there is less reason for a patient to die with pain he or she wants alleviated. But, more generally, when a suffering-less death becomes the medical summum bonum, morphine and other drugs become our sacraments. This is not necessarily good. Pharmaceuticals are the wrong treatment for certain kinds of suffering. In his Diaries, Tolstoy tells of how his brother's suffering after a stroke is so much more serious for his not accepting his plight. He writes: “In such a condition there are only two solutions: defiance, irritability and an increase of suffering, as with him, or, on the contrary: submission, gentleness and a decrease of suffering, even to the extent of eliminating it altogether.” Tolstoy's observation is perhaps pertinent in some clinical contexts.
What would happen if Ivan Ilyich—a modern day “John Doe” or “Everyman”—were dying in the USA now? At home or in the hospital, it could be the same story: when he became unable to speak coherently for himself, his wife or perhaps the ward or hospice nurse, seeing him flail and hearing him scream, would request morphine and ever-more morphine. And, if that did not work, something would be found that would work to extinguish the visible signs of discomfort: lorazepam, haloperidol, phenobarbital. Drugged, but without “pain”, what would become of Ivan Ilyich's inner experience? Would it be transformed? Would it go away?
I hope these people are not put in charge of my own last days, especially if I'm dying of cancer or something similarly excruciating in a semi-conscious haze of agony. "Sorry, Frowner, now is the time to get right with God - er, Life - so we're putting you on a reduced dose of morphine!" "Gurglegurglegurglegroan."
posted by Frowner at 9:53 AM on July 5, 2012 [16 favorites]
What would happen if Ivan Ilyich—a modern day “John Doe” or “Everyman”—were dying in the USA now? At home or in the hospital, it could be the same story: when he became unable to speak coherently for himself, his wife or perhaps the ward or hospice nurse, seeing him flail and hearing him scream, would request morphine and ever-more morphine. And, if that did not work, something would be found that would work to extinguish the visible signs of discomfort: lorazepam, haloperidol, phenobarbital. Drugged, but without “pain”, what would become of Ivan Ilyich's inner experience? Would it be transformed? Would it go away?
I hope these people are not put in charge of my own last days, especially if I'm dying of cancer or something similarly excruciating in a semi-conscious haze of agony. "Sorry, Frowner, now is the time to get right with God - er, Life - so we're putting you on a reduced dose of morphine!" "Gurglegurglegurglegroan."
posted by Frowner at 9:53 AM on July 5, 2012 [16 favorites]
This notion that pain is what makes you a good person and taking pharmaceuticals to alleviate it is somehow cheating, combined with the terror of giving out the good drugs to addicts, makes just going to or being in the hospital with something that hurts terrifying.
Let me see, dying in agony like a "good person" for the sake of a doctor's vague notion of what is proper or floating away on an opium-induced cloud? Give me the opiates, please.
posted by Ghostride The Whip at 10:01 AM on July 5, 2012 [27 favorites]
Let me see, dying in agony like a "good person" for the sake of a doctor's vague notion of what is proper or floating away on an opium-induced cloud? Give me the opiates, please.
posted by Ghostride The Whip at 10:01 AM on July 5, 2012 [27 favorites]
This notion that pain is what makes you a good person and taking pharmaceuticals to alleviate it is somehow cheating, combined with the terror of giving out the good drugs to addicts, makes just going to or being in the hospital with something that hurts terrifying.
Especially when the notion is based on a nineteenth century novel and promulgated by people who do not themselves seem to have any experience with major, chronic pain. (I mean, I like Tolstoy and all but I am skeptical of making medical decisions for others based on my understanding of how he would apply his beliefs should he be living in 2012.)
posted by Frowner at 10:04 AM on July 5, 2012 [4 favorites]
Especially when the notion is based on a nineteenth century novel and promulgated by people who do not themselves seem to have any experience with major, chronic pain. (I mean, I like Tolstoy and all but I am skeptical of making medical decisions for others based on my understanding of how he would apply his beliefs should he be living in 2012.)
posted by Frowner at 10:04 AM on July 5, 2012 [4 favorites]
MeFi favourite Roger Ebert began his review of The Barbarian Invasions (about a cancer-riddled college professor who dies peacefully of a heroin overdose at his lakeside cottage, surrounded by friends, family, and lovers) with the fine line: "Dying is not this cheerful, but we need to think it is."
posted by ricochet biscuit at 10:10 AM on July 5, 2012 [4 favorites]
posted by ricochet biscuit at 10:10 AM on July 5, 2012 [4 favorites]
If you are late stage terminal cancer in terrible pain, you can go home with a script for as much morphine as you want, they won't OD you in the hospital but nothing prevents it at home. It's not uncommon. The terrible part though is you're usually too sick to self-administrator so a family member has to be involved.
posted by stbalbach at 10:10 AM on July 5, 2012 [3 favorites]
posted by stbalbach at 10:10 AM on July 5, 2012 [3 favorites]
Hey, I've got an idea! Let's ask the person who is suffering.
posted by Mental Wimp at 10:17 AM on July 5, 2012 [11 favorites]
posted by Mental Wimp at 10:17 AM on July 5, 2012 [11 favorites]
I think dismissing this existential question as merely some kind of backwards puritanism or whatever is unfortunate (the authors explicitly reject the notion that pain is intrinsically positive in any way, for example). Conflating it with the ethical issue of euthanasia which the authors clearly don't mean to address muddies the waters too.
But the authors don't really grapple with the intractable issue here, which is how on earth you are supposed to grapple with the notion of acceptable pain versus the value of self-consciousness at the end of life when you are dealing with someone who can't communicate. Both the fictional (Ilyich) and nonficitional (Suzuki) examples the authors put forth are in command of their faculties and of course they have the right to pick the balance of pain and coherence that they wish. For a patient without the ability to communicate who else is supposed to decide other than whoever has their medical power of attorney or whatever equivalent?
I'm not convinced the article does anything other than say "here's an interesting philosophical consideration", and it is. I would be interested in listening to someone with medical competence and experience in end-of-life care seriously try to suggest how this issue of the value of ameliorating pain versus the value of individual coherence could be reasonably addressed outside of a communicative patient.
posted by nanojath at 10:17 AM on July 5, 2012 [10 favorites]
But the authors don't really grapple with the intractable issue here, which is how on earth you are supposed to grapple with the notion of acceptable pain versus the value of self-consciousness at the end of life when you are dealing with someone who can't communicate. Both the fictional (Ilyich) and nonficitional (Suzuki) examples the authors put forth are in command of their faculties and of course they have the right to pick the balance of pain and coherence that they wish. For a patient without the ability to communicate who else is supposed to decide other than whoever has their medical power of attorney or whatever equivalent?
I'm not convinced the article does anything other than say "here's an interesting philosophical consideration", and it is. I would be interested in listening to someone with medical competence and experience in end-of-life care seriously try to suggest how this issue of the value of ameliorating pain versus the value of individual coherence could be reasonably addressed outside of a communicative patient.
posted by nanojath at 10:17 AM on July 5, 2012 [10 favorites]
When I was younger, I has a hernia operation and got approval to be given a local anaesthetic rather than a general one (with all sorts of conditions, of course) so that I could remain conscious during the operation and observe it. I don't think there's anything unusual with wanting to be conscious rather than in a narcotic haze - you get far more interesting experiences that way.
That might be an extreme example, but consider this analogy - you can "medicate" yourself with religion, sports broadcasts, reality TV shows, and go through life with very little self-awareness. While that might be an easier and less challenging existence, I'm sure most people here would be skeptical that it is a reqarding one. Is there really such a big difference between that example and this one? The only difference is the intensity of how much one denies that self-awareness and the challenges that said consciousness encompasses.
posted by wolfdreams01 at 10:19 AM on July 5, 2012 [1 favorite]
That might be an extreme example, but consider this analogy - you can "medicate" yourself with religion, sports broadcasts, reality TV shows, and go through life with very little self-awareness. While that might be an easier and less challenging existence, I'm sure most people here would be skeptical that it is a reqarding one. Is there really such a big difference between that example and this one? The only difference is the intensity of how much one denies that self-awareness and the challenges that said consciousness encompasses.
posted by wolfdreams01 at 10:19 AM on July 5, 2012 [1 favorite]
Pain relief should never be withheld when it is desirable. Nor do we think that physical or existential suffering is, necessarily, redemptive or edifying in any way. But, it might be for some people; there might be someone for whom, as for Ivan Ilyich, the suffering of dying is a path to self-understanding or spiritual awakening. Should this be something that matters to the physician? Physicians and nurses need to be sensitive to the suffering of those they care for, but, does this mean a sensitivity to, or a sympathetic understanding of, more than just a patient's physical pain and symptoms, important as those are? Although many people would prefer a painless, instant death—no suffering, just lights out, quickly, permanently—others would have some variation of what seems to be Tolstoy's version of the good death: a conscious one, with acceptance of whatever comes. For example, the Zen teacher, Shunryu Suzuki, took opioids for his painful cancer for a while—to please his doctor, he said—then stopped because he wanted his mind clear. (Emphasis mine)
The main idea here is NOT "Thou shalt end thy life writhing and convulsing in bone-shattering pain and screw you if you or your family tries to enlist the help of medical professionals to alleviate it."
Unfortunately, many medical professionals are actively indifferent to what it means to have a "sympathetic understanding" of chronic pain at all, other than to dismiss its existence or to throw pills and narcotics at it to get you out of their offices and off their backs, let alone a "sympathetic understanding" of the end of life.
posted by blucevalo at 10:20 AM on July 5, 2012 [1 favorite]
The main idea here is NOT "Thou shalt end thy life writhing and convulsing in bone-shattering pain and screw you if you or your family tries to enlist the help of medical professionals to alleviate it."
Unfortunately, many medical professionals are actively indifferent to what it means to have a "sympathetic understanding" of chronic pain at all, other than to dismiss its existence or to throw pills and narcotics at it to get you out of their offices and off their backs, let alone a "sympathetic understanding" of the end of life.
posted by blucevalo at 10:20 AM on July 5, 2012 [1 favorite]
(Apologies for typos, BTW)
posted by wolfdreams01 at 10:20 AM on July 5, 2012
posted by wolfdreams01 at 10:20 AM on July 5, 2012
CTRL-F "living will" : 0 results
If you don't want professionals and loved ones guessing at how you want to die, tell them in advance while you still have control of your mental faculties. Preferably with a living will, but at least give the gist of it to someone who will have decision making powers.
Maybe you wanted to stretch out any bit of lucid consciousness for as long as possible, despite the pain. Or perhaps you wanted to go out riding a magic carpet of morphine and sedatives.
Who knows? The people you told while you still had your mental faculties.
posted by justkevin at 10:24 AM on July 5, 2012 [7 favorites]
If you don't want professionals and loved ones guessing at how you want to die, tell them in advance while you still have control of your mental faculties. Preferably with a living will, but at least give the gist of it to someone who will have decision making powers.
Maybe you wanted to stretch out any bit of lucid consciousness for as long as possible, despite the pain. Or perhaps you wanted to go out riding a magic carpet of morphine and sedatives.
Who knows? The people you told while you still had your mental faculties.
posted by justkevin at 10:24 AM on July 5, 2012 [7 favorites]
We will all know more about this sort of thing at some time in the future.
posted by Postroad at 10:27 AM on July 5, 2012 [3 favorites]
posted by Postroad at 10:27 AM on July 5, 2012 [3 favorites]
Not all pain is equal: it's not only intensity, but some kinds are more bearable. Not all pain can be eliminated while the patient is conscious. Not all end of life scenarious are equal. Some folks don't get the opportunity to face the impending ultimate statement of their mortality--for example, a car wreck propels them out this world before they have a chance even to say C-ya. Some people get a clear vision of how this works--many soldiers, or others who work in dangerous jobs, understand on a visceral level that their life could flicker out after the next heartbeat. This knowledge, generally, is only an intellectual exercise to most people.
Dying well is a lot like doing shrooms. Everything depends on the setting, your expectations, and your mindset about how the Cosmic Muffin intends to deal with your transition from here to there.
I have an incurable cancer. I'm supposed to be dead now, but a stem cell transplant has somehow taken me off the steep end of the mortality curve. That could change any day, but as far as I'm concerned every day is a gift. When I was an infantryman, I went to the edge of the pit enough to know that the candle is weak, and its light shouldn't be taken as a given. When I found out about my cancer a few years ago, I made an adjustment from the uncertainty of "someday" to the more well-defined survival stats associated with Multiple Myeloma. My decision tree was short and simple. I would be dead in three years. I've been alive for almost eight, so I'm back to square one on the uncertainty chart, so to speak. I am the poster boy now. Hoorah. Somehow it was a bit more of a comfort to think I was on my last lap, but I am not displeased with this turn of events.
Anyhow, the operative notions I work with are this: I made out an End-of-Life Statement, that describes how I want to be handled (medically) if I'm incapable of dealing with it, and I finally got around to working up Dave VanRonk's treatment of Cocaine Blues--I've been trying to get that one right for forty years, but I'd never put the time into it to make his goddam bass runs work out. I will die content.
In dealing with the of loose threads of my life, I realized that I'm not going to trim them all, so I just had to accept that. It was hard to quantify these, so called, end of life decisions at first, but I gained some perspective, and then it got very simple. I did what I could, now the rest is up to my survivors. That was a load off my mind.
My version of dying seems to be in a hospice, where drugs will beat cancer in the race to kick me out of the mortal coil. That could happen next year, or in ten years. I'm pretty sure I'll get a heads up, so I'm fine with it. I'll decide how much pain I want to deal with. When I was young I fought against the image of getting old: sitting in a rocker on the porch, blanket on my lap, while the morning sun glistened off the thin line of drool on my chin--I'm smiling a faint smile while I re-run favorite scenes from my life. I was absolutely repelled by this image.
Not so much any more. Actually, compared to oblivion, it sounds okay. Anyhow, I'm not in that much of a hurry to get to Hell. I'm pretty sure I'll be in one of the upper circles, and not chin deep in boiling shit, but, still...
I'm glad I had time to go through this process. On the other hand, a sniper's bullet 45 years ago could have saved me the trouble, so I guess you can't balance any of this stuff out. Physics wins: when the universe vanishes, it takes everything with it. Whew. Zero is a lot to know, eh?
posted by mule98J at 10:33 AM on July 5, 2012 [45 favorites]
Dying well is a lot like doing shrooms. Everything depends on the setting, your expectations, and your mindset about how the Cosmic Muffin intends to deal with your transition from here to there.
I have an incurable cancer. I'm supposed to be dead now, but a stem cell transplant has somehow taken me off the steep end of the mortality curve. That could change any day, but as far as I'm concerned every day is a gift. When I was an infantryman, I went to the edge of the pit enough to know that the candle is weak, and its light shouldn't be taken as a given. When I found out about my cancer a few years ago, I made an adjustment from the uncertainty of "someday" to the more well-defined survival stats associated with Multiple Myeloma. My decision tree was short and simple. I would be dead in three years. I've been alive for almost eight, so I'm back to square one on the uncertainty chart, so to speak. I am the poster boy now. Hoorah. Somehow it was a bit more of a comfort to think I was on my last lap, but I am not displeased with this turn of events.
Anyhow, the operative notions I work with are this: I made out an End-of-Life Statement, that describes how I want to be handled (medically) if I'm incapable of dealing with it, and I finally got around to working up Dave VanRonk's treatment of Cocaine Blues--I've been trying to get that one right for forty years, but I'd never put the time into it to make his goddam bass runs work out. I will die content.
In dealing with the of loose threads of my life, I realized that I'm not going to trim them all, so I just had to accept that. It was hard to quantify these, so called, end of life decisions at first, but I gained some perspective, and then it got very simple. I did what I could, now the rest is up to my survivors. That was a load off my mind.
My version of dying seems to be in a hospice, where drugs will beat cancer in the race to kick me out of the mortal coil. That could happen next year, or in ten years. I'm pretty sure I'll get a heads up, so I'm fine with it. I'll decide how much pain I want to deal with. When I was young I fought against the image of getting old: sitting in a rocker on the porch, blanket on my lap, while the morning sun glistened off the thin line of drool on my chin--I'm smiling a faint smile while I re-run favorite scenes from my life. I was absolutely repelled by this image.
Not so much any more. Actually, compared to oblivion, it sounds okay. Anyhow, I'm not in that much of a hurry to get to Hell. I'm pretty sure I'll be in one of the upper circles, and not chin deep in boiling shit, but, still...
I'm glad I had time to go through this process. On the other hand, a sniper's bullet 45 years ago could have saved me the trouble, so I guess you can't balance any of this stuff out. Physics wins: when the universe vanishes, it takes everything with it. Whew. Zero is a lot to know, eh?
posted by mule98J at 10:33 AM on July 5, 2012 [45 favorites]
Who says you can't have both an instant, painless death and a conscious, accepting one? "Well, here comes the unstoppable wall of flame. Guess it's been a pretty good run. Okay, then. G'bye!"
posted by echo target at 10:34 AM on July 5, 2012 [2 favorites]
posted by echo target at 10:34 AM on July 5, 2012 [2 favorites]
I'm not sure The Death of Ivan Ilyich is a good example for the author's ethical quandaries. Tolstoi had obvious opinions on what constitutes the moral life but another way of looking at it is that he was criticising the higher classes for denying the existence of death - a major point in the story is that the only person to speak frankly about Ivan's impending death with him is a peasant. He had done so in another short story ("Three Deaths") where the high class lady is in denial about her death while the coachman accepts death with peasant simplicity.
Instead of seeing Ivan Ilyich's dying hours as a spiritual awakening, what you have is only a man's horrible doubts about something he isn't prepared for since nobody would discuss it with him because nobody would admit he was dying.
The lesson to this doctor, as far as I see it, in reading Tolstoi should be that it is his responsibility to make his patients know that they are dying and give them the support to deal with it. He mentions psychological and spiritual support for the lady, so what is the big doubt? Doesn't he imply she was ready for death?
So, another parallel with Tolstoy's story would be that the person who knows she is dying might ask to be put in a coma until it's over because it has come to acceptance while on the opposite end of the spectrum there might be someone in denial and refusing pain killers or treatment because she has failed to accept it's the end.
posted by lucia__is__dada at 10:47 AM on July 5, 2012 [1 favorite]
Instead of seeing Ivan Ilyich's dying hours as a spiritual awakening, what you have is only a man's horrible doubts about something he isn't prepared for since nobody would discuss it with him because nobody would admit he was dying.
The lesson to this doctor, as far as I see it, in reading Tolstoi should be that it is his responsibility to make his patients know that they are dying and give them the support to deal with it. He mentions psychological and spiritual support for the lady, so what is the big doubt? Doesn't he imply she was ready for death?
So, another parallel with Tolstoy's story would be that the person who knows she is dying might ask to be put in a coma until it's over because it has come to acceptance while on the opposite end of the spectrum there might be someone in denial and refusing pain killers or treatment because she has failed to accept it's the end.
posted by lucia__is__dada at 10:47 AM on July 5, 2012 [1 favorite]
I've been with two family members dying in hospice care. One at home, one in a hospital unit.
Both times, during a crisis, a new hospice worker we'd never met came in, gave the person a pill described as an 'antianxiety' medicine, did not note what it was in the chart, and left.
Both people died within a couple of hours thereafter.
One -- at home -- could well have lived hours or days longer, in some distress but knowing family would be arriving soon, would have gladly done so. The new hospice worker came in midafternoon, gave the pill and left. Neither family who were on the road, nor the family priest, got to the bedside in time. She tried hard to stay awake and couldn't do it. This was not right.
The other -- in a hospital hospice unit -- was ready to die and had been saying "just let me die" for days; the new hospice worker came in the predawn hours, chased me out of the room "to change the sheets and give an anxiety pill" -- and by morning nobody was able to tell me who that was or what the pill was, it hadn't been charted. This was what the patient wanted.
I concluded the hospice workers made the decision --- in the first instance without asking, taking away time conscious everyone wanted; in the second instance against the hospital's rules, doing what the patient clearly wanted done, and working around me without telling me.
If I'm in a state I can't recover from, for sure, I'd prefer home/hospice care.
But I want a locked gate between me and that last, unknown, hospice worker -- until I say it's time to let her come to help me out.
posted by hank at 10:54 AM on July 5, 2012 [3 favorites]
Both times, during a crisis, a new hospice worker we'd never met came in, gave the person a pill described as an 'antianxiety' medicine, did not note what it was in the chart, and left.
Both people died within a couple of hours thereafter.
One -- at home -- could well have lived hours or days longer, in some distress but knowing family would be arriving soon, would have gladly done so. The new hospice worker came in midafternoon, gave the pill and left. Neither family who were on the road, nor the family priest, got to the bedside in time. She tried hard to stay awake and couldn't do it. This was not right.
The other -- in a hospital hospice unit -- was ready to die and had been saying "just let me die" for days; the new hospice worker came in the predawn hours, chased me out of the room "to change the sheets and give an anxiety pill" -- and by morning nobody was able to tell me who that was or what the pill was, it hadn't been charted. This was what the patient wanted.
I concluded the hospice workers made the decision --- in the first instance without asking, taking away time conscious everyone wanted; in the second instance against the hospital's rules, doing what the patient clearly wanted done, and working around me without telling me.
If I'm in a state I can't recover from, for sure, I'd prefer home/hospice care.
But I want a locked gate between me and that last, unknown, hospice worker -- until I say it's time to let her come to help me out.
posted by hank at 10:54 AM on July 5, 2012 [3 favorites]
I think what actually bugs me about this essay is how it implies that there is and ought to be some particular kind of consciousness - that there is inherent virtue in reflection. It also implies that if you do it right you get something out of death. Like there's this tidy, correct ending if you can just figure out how to have the kind of consciousness you should have.
When they write: "Drugged, but without “pain”, what would become of Ivan Ilyich's inner experience? Would it be transformed? Would it go away?" they are very clearly implying that there is a loss of the meaningful kind of inner experience and that it is regrettable. I'd say that there are different kinds of inner experiences, that in the last days before death there are only differences in kind and not differences in value and that there probably is not a way to safely make sure that a semi-conscious dying person in great pain has just enough pain killers not to be writhing in excruciating torment and not so many pain killers that their inner life is impeded. I think this particular line of inquiry puts the emphasis on the wrong syLLAble, as my dad used to say.
I wonder if these writers are religious and thus are thinking about some kind of Ultimately Right Consciousness.
I want people who are in pain to have whatever meds they want; absent expressed or clearly understood wishes, I want them not to be in pain. I recognize that this isn't a perfect situation, but I think it's the best of a muddy set of choices and muddy choices don't worry me because I don't think there's any other kind.
I also worry that ideas like this (meds can get in the way of important spiritual processes at the time of death) may predispose these folks to undermedicate and to discourage patients from asking for medication. I was recently the advocate for a family member in the hospital and it was so hard to get enough meds - the person wanted them but was not coherent enough to stay focused through "push the call button, wait and wait for the nurse, explain to the nurse, follow up with the nurse when the nurse doesn't get back to you, get meds"...and god knows, the staff was not proactive about my family member's comfort and wellbeing - this at a good hospital when we had good insurance, no less!
posted by Frowner at 10:59 AM on July 5, 2012 [4 favorites]
When they write: "Drugged, but without “pain”, what would become of Ivan Ilyich's inner experience? Would it be transformed? Would it go away?" they are very clearly implying that there is a loss of the meaningful kind of inner experience and that it is regrettable. I'd say that there are different kinds of inner experiences, that in the last days before death there are only differences in kind and not differences in value and that there probably is not a way to safely make sure that a semi-conscious dying person in great pain has just enough pain killers not to be writhing in excruciating torment and not so many pain killers that their inner life is impeded. I think this particular line of inquiry puts the emphasis on the wrong syLLAble, as my dad used to say.
I wonder if these writers are religious and thus are thinking about some kind of Ultimately Right Consciousness.
I want people who are in pain to have whatever meds they want; absent expressed or clearly understood wishes, I want them not to be in pain. I recognize that this isn't a perfect situation, but I think it's the best of a muddy set of choices and muddy choices don't worry me because I don't think there's any other kind.
I also worry that ideas like this (meds can get in the way of important spiritual processes at the time of death) may predispose these folks to undermedicate and to discourage patients from asking for medication. I was recently the advocate for a family member in the hospital and it was so hard to get enough meds - the person wanted them but was not coherent enough to stay focused through "push the call button, wait and wait for the nurse, explain to the nurse, follow up with the nurse when the nurse doesn't get back to you, get meds"...and god knows, the staff was not proactive about my family member's comfort and wellbeing - this at a good hospital when we had good insurance, no less!
posted by Frowner at 10:59 AM on July 5, 2012 [4 favorites]
I also worry that ideas like this (meds can get in the way of important spiritual processes at the time of death) may predispose these folks to undermedicate and to discourage patients from asking for medication.
This is already the norm in most places. It has been a long time in the making, but some places actually focus on making the patient comfortable in end-of-life situations.
posted by Mental Wimp at 11:11 AM on July 5, 2012
This is already the norm in most places. It has been a long time in the making, but some places actually focus on making the patient comfortable in end-of-life situations.
posted by Mental Wimp at 11:11 AM on July 5, 2012
My experience with dying people is pretty limited, but what attracted me to this article was the idea that suffering - physical and emotional suffering - has value, and that doctors and nurses should take that seriously just as they are (rightfully) now taught to take pain management seriously.
I gave birth at home without meds and it hurt a lot. Again, I believe it is correct that women should not be told they are doing it wrong if they have an epidural, but for me I found the experience of pain and suffering to give birth to connect me to my child. I found it personally transformative. In my life in general, looking back, I can see how suffering and struggling, and trying to be fully present for that suffering, has helped me grow in ways I wouldn't have otherwise. I think this is important - for me. Even while I can recognize that extreme suffering can be debilitating, and that the pain of dying from cancer is extreme beyond my own imagining, I believe pain can be transformative and can play an important role in spiritual development. For me it's an essential role.
In general, the goal of medicine is now to alleviate suffering, as much as possible, whenever possible. This article asked some questions I found provocative about whether alleviating suffering should always be the role of a healer. Or whether there is a way that healers can facilitate people's presence for their own pain - for those who want that.
posted by latkes at 11:14 AM on July 5, 2012 [3 favorites]
I gave birth at home without meds and it hurt a lot. Again, I believe it is correct that women should not be told they are doing it wrong if they have an epidural, but for me I found the experience of pain and suffering to give birth to connect me to my child. I found it personally transformative. In my life in general, looking back, I can see how suffering and struggling, and trying to be fully present for that suffering, has helped me grow in ways I wouldn't have otherwise. I think this is important - for me. Even while I can recognize that extreme suffering can be debilitating, and that the pain of dying from cancer is extreme beyond my own imagining, I believe pain can be transformative and can play an important role in spiritual development. For me it's an essential role.
In general, the goal of medicine is now to alleviate suffering, as much as possible, whenever possible. This article asked some questions I found provocative about whether alleviating suffering should always be the role of a healer. Or whether there is a way that healers can facilitate people's presence for their own pain - for those who want that.
posted by latkes at 11:14 AM on July 5, 2012 [3 favorites]
This is really interesting. I agree that a medication fog is a horrifying way to spend your last moments on Earth in. I also agree that intractable pain is a horrifying way to spend your last moments on Earth in.
The article kind of goes from there where I think it should: that each person should be able to decide (in advance) what kind of death will be most acceptable for them, and that thinking about dying and having the horrible realization that the life you lived wasn't real life will help guide you in the finite time that you have toward real life.
A few issues spring up around this. First, for those of us who struggle with belief in an afterlife or metaphysical realms, death is frightening and I think the terrible truth there is that one's last moments don't matter, if oblivion is all that awaits. So thinking about dying, and evaluating your present life for any possibility of future regrets, is hard.
It is also worth considering whether indefinite prolonging of the dying state is a valuable goal. It's a little different in hospice care specifically, but in most health care it's just assumed that more time alive is automatically good. If the individual spends that time in agony, or undergoes a slow decline in health, cognition and personhood, I don't know.
Basically I want humane euthanasia.
posted by byanyothername at 11:18 AM on July 5, 2012 [1 favorite]
The article kind of goes from there where I think it should: that each person should be able to decide (in advance) what kind of death will be most acceptable for them, and that thinking about dying and having the horrible realization that the life you lived wasn't real life will help guide you in the finite time that you have toward real life.
A few issues spring up around this. First, for those of us who struggle with belief in an afterlife or metaphysical realms, death is frightening and I think the terrible truth there is that one's last moments don't matter, if oblivion is all that awaits. So thinking about dying, and evaluating your present life for any possibility of future regrets, is hard.
It is also worth considering whether indefinite prolonging of the dying state is a valuable goal. It's a little different in hospice care specifically, but in most health care it's just assumed that more time alive is automatically good. If the individual spends that time in agony, or undergoes a slow decline in health, cognition and personhood, I don't know.
Basically I want humane euthanasia.
posted by byanyothername at 11:18 AM on July 5, 2012 [1 favorite]
At the risk of self-quoting my blog and a book I am co-author of:
Based on that experience, let me second the recommendation to have a living will and letting your loved ones know your preferences. I sure as hell have.
posted by Shadan7 at 11:25 AM on July 5, 2012 [3 favorites]
They usually won’t tell you this beforehand, but there comes a point in hospice care where the usual restrictions about medicine dosage and usage becomes, let us say, somewhat more casual. The rules are in place to control the abuse of very dangerous and addicting drugs, after all. But when the end comes, no one in their right mind is going to be worrying about addiction, when there is comfort to be given.That's from a passage about the end of my mother-in-law's life, as she was dying from Alzheimer's (my wife and I cared for her until the end). As it turned out, my MIL died a natural death about a week later, without being 'assisted' by over-medication. We knew this to be her preference, but all through the closing months of her care we wrestled with the trade-offs made in keeping her comfortable and extending her life.
We’ve reached this point. My wife and I had realized it last week, but were reluctant to act too much on this knowledge without confirmation from our nurse. No, she didn’t tell us to exceed any prescriptions, but was willing to answer our questions about what medicines were suitable for what problems.
Based on that experience, let me second the recommendation to have a living will and letting your loved ones know your preferences. I sure as hell have.
posted by Shadan7 at 11:25 AM on July 5, 2012 [3 favorites]
If we're allowed to order in advance, I'll take a hail of machine gun fire, please.
posted by the bricabrac man at 11:55 AM on July 5, 2012
posted by the bricabrac man at 11:55 AM on July 5, 2012
The terrible part though is you're usually too sick to self-administrator so a family member has to be involved.
Isn't this technically murder? Or manslaughter perhaps? I'm not judging anyone here, just wondering about the legal ramifications of this and how tricksy it is for the family member in question.
*I have no other reason for asking this than general curiosity, thank heavens.
posted by RolandOfEld at 12:03 PM on July 5, 2012
Isn't this technically murder? Or manslaughter perhaps? I'm not judging anyone here, just wondering about the legal ramifications of this and how tricksy it is for the family member in question.
*I have no other reason for asking this than general curiosity, thank heavens.
posted by RolandOfEld at 12:03 PM on July 5, 2012
How about going out like Aldous Huxley: 100 mics of LSD intramuscularly.
posted by nfg at 12:12 PM on July 5, 2012 [2 favorites]
posted by nfg at 12:12 PM on July 5, 2012 [2 favorites]
I've often wondered how I'd like to die, and I keep returning to two very different scenarios.
1: being administered a high dose of morphine
2: being put in a UFC cage with a tiger, preferably after a few hours of meditation
Both would almost certainly kill me, and there would be much less physical pain in the morphine scenario.
But the visceral experience and LIFE I'd experience in the tiger scenario would be mind blowing.
posted by spacediver at 12:43 PM on July 5, 2012 [2 favorites]
1: being administered a high dose of morphine
2: being put in a UFC cage with a tiger, preferably after a few hours of meditation
Both would almost certainly kill me, and there would be much less physical pain in the morphine scenario.
But the visceral experience and LIFE I'd experience in the tiger scenario would be mind blowing.
posted by spacediver at 12:43 PM on July 5, 2012 [2 favorites]
But the visceral experience and LIFE I'd experience in the tiger scenario would be mind blowing.
I'd call that experiencing DEATH, but YMMV.
posted by Mental Wimp at 3:22 PM on July 5, 2012
I'd call that experiencing DEATH, but YMMV.
posted by Mental Wimp at 3:22 PM on July 5, 2012
Dying in a naked-lady avalanche doesn't seem to be one of the options, does it?
Damn.
posted by John of Michigan at 7:40 PM on July 5, 2012 [1 favorite]
Damn.
posted by John of Michigan at 7:40 PM on July 5, 2012 [1 favorite]
That's funny, I've never read Tolstoy - I thought the FPP was referencing the death of Ivan Illich, a philosopher who had a lot to say about coping with pain and death under modern medicine in his book Medical Nemesis, a condensed essay from which is here.
posted by BinGregory at 9:23 PM on July 5, 2012 [1 favorite]
Each culture is the sum of rules with which the individual could come to terms with pain, sickness, and death—could interpret them and practise compassion amongst others faced by the same threats. Each culture set the myth, the rituals, the taboos, and the ethical standards needed to deal with the fragility of life—to explain the reason for pain, the dignity of the sick, and the role of dying or death.He wound up dying of a cancerous growth on his face that he managed through with bit of opium.
posted by BinGregory at 9:23 PM on July 5, 2012 [1 favorite]
If we're allowed to order in advance, I'll take a hail of machine gun fire, please.
I'd just as soon take a raincheck, thanks.
This is really interesting. I agree that a medication fog is a horrifying way to spend your last moments on Earth in. I also agree that intractable pain is a horrifying way to spend your last moments on Earth in.
Not really. What better way to die than to be not so much aware of that you're dying anymore and without pain? That's really all that matters, to alliviate the pain that comes with dying, to make those last moments as peaceful and easy as possible. Everything else is just displaced masochism.
There are very few situations in which it's better to be in pain and fully conscious of this pain than to be sedated to a greater or large extent, for example when the person dying feels they have to make sure they've fullfilled all their obligations towards those that will survive them.
That's what happened when my wife died: she kept up with the pain and suffering until she was sure her funeral was arranged, she'd seen her youngest son, spoken to the eldest, and had said her farewells. Then, in her last few days, she was content to just let nature take its course, made sure she wasn't in pain anymroe and waited for the end. Died in her sleep with her son holdign her end, about as perfect a death as she could've hoped for in the circumstances.
To think that you cannot have a full acceptance of your death if you chose to relief your pain is idiotic at best, actively harmfull at worst. Nobody is keeping score on how well you die.
posted by MartinWisse at 4:13 AM on July 6, 2012 [1 favorite]
I'd just as soon take a raincheck, thanks.
This is really interesting. I agree that a medication fog is a horrifying way to spend your last moments on Earth in. I also agree that intractable pain is a horrifying way to spend your last moments on Earth in.
Not really. What better way to die than to be not so much aware of that you're dying anymore and without pain? That's really all that matters, to alliviate the pain that comes with dying, to make those last moments as peaceful and easy as possible. Everything else is just displaced masochism.
There are very few situations in which it's better to be in pain and fully conscious of this pain than to be sedated to a greater or large extent, for example when the person dying feels they have to make sure they've fullfilled all their obligations towards those that will survive them.
That's what happened when my wife died: she kept up with the pain and suffering until she was sure her funeral was arranged, she'd seen her youngest son, spoken to the eldest, and had said her farewells. Then, in her last few days, she was content to just let nature take its course, made sure she wasn't in pain anymroe and waited for the end. Died in her sleep with her son holdign her end, about as perfect a death as she could've hoped for in the circumstances.
To think that you cannot have a full acceptance of your death if you chose to relief your pain is idiotic at best, actively harmfull at worst. Nobody is keeping score on how well you die.
posted by MartinWisse at 4:13 AM on July 6, 2012 [1 favorite]
I've often wondered how I'd like to die, and I keep returning to two very different scenarios.
1: being administered a high dose of morphine
2: being put in a UFC cage with a tiger, preferably after a few hours of meditation
Both would almost certainly kill me, and there would be much less physical pain in the morphine scenario.
But the visceral experience and LIFE I'd experience in the tiger scenario would be mind blowing.
As some of my favourite 4chan advice ever on methods of suicide went (paraphrased):
Wrestle a bear. You'll probably lose and die. But maybe you'll win and then you won't want to commit suicide as you'll be the awesome guy who survived wrestling a bear.
posted by jaduncan at 5:50 AM on July 6, 2012
1: being administered a high dose of morphine
2: being put in a UFC cage with a tiger, preferably after a few hours of meditation
Both would almost certainly kill me, and there would be much less physical pain in the morphine scenario.
But the visceral experience and LIFE I'd experience in the tiger scenario would be mind blowing.
As some of my favourite 4chan advice ever on methods of suicide went (paraphrased):
Wrestle a bear. You'll probably lose and die. But maybe you'll win and then you won't want to commit suicide as you'll be the awesome guy who survived wrestling a bear.
posted by jaduncan at 5:50 AM on July 6, 2012
I do think I would like to be an active participant in my death, to be aware of what was going on during the shutdown and if some pain is the pay-off, I would happily accept that. (Obviously, I'm typing this sat here pain-free and in the prime of health....)
I don't buy into the undertones of redemption and/or spiritual release through suffering that the authors seem to be skirting around, but death is going to be the last interesting experience you have and it would be a shame to miss out on it.
posted by fatfrank at 6:05 AM on July 6, 2012 [1 favorite]
I don't buy into the undertones of redemption and/or spiritual release through suffering that the authors seem to be skirting around, but death is going to be the last interesting experience you have and it would be a shame to miss out on it.
posted by fatfrank at 6:05 AM on July 6, 2012 [1 favorite]
"How would you like to die, Tyrion son of Tywin?" (NSFW)
posted by Pirate-Bartender-Zombie-Monkey at 7:57 AM on July 6, 2012
posted by Pirate-Bartender-Zombie-Monkey at 7:57 AM on July 6, 2012
@jaduncan,
I would be terrified of facing a bear. I've heard horror stories of bears eating their victims alive, limb by limb. From what I understand, tigers go straight for the kill by biting you neck.
And yes, if I survived a battle with a tiger OR bear, I might change my mind on suicide :)
posted by spacediver at 10:13 AM on July 6, 2012
I would be terrified of facing a bear. I've heard horror stories of bears eating their victims alive, limb by limb. From what I understand, tigers go straight for the kill by biting you neck.
And yes, if I survived a battle with a tiger OR bear, I might change my mind on suicide :)
posted by spacediver at 10:13 AM on July 6, 2012
there also was a third scenario that I have envisioned, but I don't have the courage to share it here.
Suffice it to say it involves a death squad of five very fit women, one of whom has very muscular thighs.
posted by spacediver at 10:14 AM on July 6, 2012
Suffice it to say it involves a death squad of five very fit women, one of whom has very muscular thighs.
posted by spacediver at 10:14 AM on July 6, 2012
Let me advise, that you make sure you and your family know about terminal agitation and the effects of the drugs used to treat it, ideally, before you or a loved one gets hospice care.
I suspect story of someone's death is usually more important than facts of it. I think most of us would rather hear and tell the tale of "at peace and without pain" than the "in fear and agony" story. At some level, Hospice is there to help that first story get told. The whole family has to be on board with that going in.
posted by wobh at 10:08 PM on July 6, 2012 [1 favorite]
I suspect story of someone's death is usually more important than facts of it. I think most of us would rather hear and tell the tale of "at peace and without pain" than the "in fear and agony" story. At some level, Hospice is there to help that first story get told. The whole family has to be on board with that going in.
posted by wobh at 10:08 PM on July 6, 2012 [1 favorite]
My wife's father died holding her hand, in his sleep. He lived a long time, then got old and faded away. He needed care during his last few weeks, but up until nearly the very end he was lucid and communicative. As his old body began to shut down he drew into himself, and became less and less interested in communicating with us, the survivors. One night he went to sleep and didn't bother to come back.
A lot is said about the sensibilities of the dying, how they may or may not come to terms with their passing. Not much has been explicitely offered about the living, what witnessing a loved one's death might mean to them. I want my survivors to see me go the way RedBud watched her father go: in peace, with dignity. After all, it's going to be harder on them than it is on me. I see me trying to make it easier for them: toodle doo, folks, y'all be good now.
I have a favorite line from a movie, can't remember the movie, just the line. Our hero has taken a mortal bullet, and his longtime ladyfriend is holding his hand. He smiles at her and says: "I thought coming was great, but going beats it hands down, cough cough." Then he dies.
I have not come to terms with dying. I am not afraid of it--it simply pisses me off, but it helps to keep in mind that I won't be holding a grudge.
posted by mule98J at 11:18 PM on July 6, 2012
A lot is said about the sensibilities of the dying, how they may or may not come to terms with their passing. Not much has been explicitely offered about the living, what witnessing a loved one's death might mean to them. I want my survivors to see me go the way RedBud watched her father go: in peace, with dignity. After all, it's going to be harder on them than it is on me. I see me trying to make it easier for them: toodle doo, folks, y'all be good now.
I have a favorite line from a movie, can't remember the movie, just the line. Our hero has taken a mortal bullet, and his longtime ladyfriend is holding his hand. He smiles at her and says: "I thought coming was great, but going beats it hands down, cough cough." Then he dies.
I have not come to terms with dying. I am not afraid of it--it simply pisses me off, but it helps to keep in mind that I won't be holding a grudge.
posted by mule98J at 11:18 PM on July 6, 2012
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posted by Ironmouth at 9:50 AM on July 5, 2012 [1 favorite]