[Trigger warning: Death, pain, suffering, sadness]
Some people, having completed the traditional forms of empty speculation – “What do you want to be when you grow up?”, “If you could bang any celebrity who would it be?” – turn to “What will you say as your last words?”
Sounds like a valid question. You can go out with a wisecrack, like Oscar Wilde (“Either this wallpaper goes or I do”). Or with piety and humility, like Jesus (“Into thy hands, o Father, I commend my spirit.”) Or burning with defiance, like Karl Marx (“Last words are for fools who haven’t said enough.”)
Let me puncture all your pleasant dreams. You’ll probably never become an astronaut. You’re not going to bang Emma Watson. And your last words will probably be something like “mmmrrrgggg graaaaaaaaaaaHAAACK!”
I guess I always pictured dying as – unless you got hit by a truck or something – a bittersweet and strangely beautiful process. You’d grow older and weaker and gradually get some disease and feel your time was upon you. You’d be in a nice big bed at home with all your friends and family gathered around. You’d gradually feel the darkness closing in. You’d tell them all how much you loved them, there would be tears, you would say something witty or pious or defiant, and then you would close your eyes and drift away into a dreamless sleep.
And I think this happens sometimes. For all I know, maybe it happens quite a lot. If it does, I never see these people. They very wisely stay far away from hospitals and the medical system in general. I see the other kind of people.
If you are like the patients I see dying, then here is how you will go.
You will grow old. When you were young, you would go to institutions and gradually gather letters after your name: BA, MD, PhD. Now that you are old, you do the same thing, but they are different institutions and different letters. Your doctors will introduce you to their colleagues as “Mary Smith, COPD, PVD, ESRD, IDDM”. With each set of letters comes another decrease in quality of life.
At first these sacrifices will be minor. The COPD means you have to breathe from an oxygen tank you carry around wherever you go. The PVD will prevent you from walking more than a few feet at a time. The ESRD will require three hours dialysis in a hospital or outpatient dialysis center three times a week. The IDDM will require insulin shots after every meal. Not fun, but hardly inconsistent with a life worth living.
Eventually these will add up beyond your ability to manage them on your own, and you will be sent off to a nursing home. This will seem like a reasonable enough idea, and sometimes it goes well. Other times it gives you freedom to develop a completely new set of morbidities totally unconstrained by what a person in any other situation could possibly be expected to survive.
You will become bedridden, unable to walk or even to turn yourself over. You will become completely dependent on nurse assistants to intermittently shift your position to avoid pressure ulcers. When they inevitably slip up, your skin develops huge incurable sores that can sometimes erode all the way to the bone, and which are perpetually infected with foul-smelling bacteria. Your limbs will become practically vestigial organs, like the appendix, and when your vascular disease gets too bad, one or more will be amputated, sacrifices to save the host. Urinary and fecal continence disappear somewhere in the process, so you’re either connected to catheters or else spend a while every day lying in a puddle of your own wastes until the nurses can help you out. The digestive system isn’t too happy either by this point, so you can either have a tube plugged directly into your stomach or just skip the middleman and have an IV line feeding nutrients into your bloodstream.
Somewhere in the process your mind very quietly and without fanfare gives up the ghost. It starts with forgetting a couple of little things, and progresses until you have no idea what’s going on ever. In medical jargon, healthy people are “alert and oriented x 3”, which means oriented to person (you know your name), oriented to time (you know what day/month/year it is), and oriented to place (you know you’re in a hospital). My patients who have the sorts of issues I mentioned in the last paragraph are generally alert and oriented x0. They don’t remember their own names, they don’t know where they are or what they’re doing there, and they think it’s the 1930s or the 1950s or don’t even have a concept of years at all. When you’re alert and oriented x0, the world becomes this terrifying place where you are stuck in some kind of bed and can’t move and people are sticking you with very large needles and forcing tubes down your throat and you have no idea why or what’s going on.
So of course you start screaming and trying to attack people and trying to pull the tubes and IV lines out. Every morning when I come in to work I have to check the nurses’ notes for what happened the previous night, and every morning a couple of my patients have tried to pull all of their tubes and lines out. If it’s especially bad they try to attack the staff, and although the extremely elderly are really bad at attacking people this is nevertheless Unacceptable Behavior and they have to be restrained ie tied down to the bed. A presumably more humane alternative sometimes used instead or in addition is to just drug you up on all of those old-timey psychiatric medications that actual psychiatrists don’t use anymore because of their bad reputation.
After a while of this, your doctors will call a meeting with your family and very gingerly raise the possibility of going to “comfort care only”, which means they disconnect the machines and stop the treatments and put you on painkillers so that you die peacefully. Your family will start yelling at the doctors, asking how the hell these quacks were ever allowed to practice when for God’s sake they’re trying to kill off Grandma just so they can avoid doing a tiny bit of work. They will demand the doctors find some kind of complicated surgery that will fix all your problems, add on new pills to the thirteen you’re already being force-fed every day, call in the most expensive consultants from Europe, figure out some extraordinary effort that can keep you living another few days.
Robin Hanson sometimes writes about how health care is a form of signaling, trying to spend money to show you care about someone else. I think he’s wrong in the general case – most people pay their own health insurance – but I think he’s spot on in the case of families caring for their elderly relatives. The hospital lawyer mentioned during orientation that it never fails that the family members who live in the area and have spent lots of time with their mother/father/grandparent over the past few years are willing to let them go, but someone from 2000 miles away flies in at the last second and makes ostentatious demands that EVERYTHING POSSIBLE must be done for the patient.
Your doctors will nod their heads and tell your family they respect their wishes. It will be a lie. Oh, sure, they will carry out the family’s wishes, in terms of continuing to provide the care. But respect? In the cafeteria at lunch, they will – despite medical confidentiality laws that totally prohibit this – compare stories of the most ridiculous families. “I have a blind 90 year old patient with stage 4 lung cancer with brain mets and no kidney function, and the family is demanding I enroll her in a clinical trial from Sri Lanka.” “Oh, that’s nothing. I have a patient who can’t walk or speak who’s breathing from a ventilator and has anoxic brain injury, and the family is insisting I try to get him a liver transplant.”
Every day, your doctors will meet with your family another time, and eventually, as your condition worsens and your family has more time to be hit on the head with a big club marked ‘REALITY’, they will start to relent. Finally, they will allow your doctors to take you off of the machines, and you will be transferred to Palliative Care, whose job I do not envy even though every single palliative care doctor I have ever met is relentlessly cheerful and upbeat and this is a total mystery to me.
And you will die, but not quickly. It takes time for the heart to give up, for the lungs to fill with water and stop breathing, for the toxic wastes to build up. It is generally considered wise for the patient to be on epic doses of morphine throughout the process, both to spare them the inevitable pain as their disease takes their course and to spare their family from having to watch them.
…not that they always do. It can take anywhere from a day to several weeks for someone to die. Sometimes your family wants to wait at the bedside for a week. But a lot of the time they have work and things to do. Maybe they live thousands of miles away. You haven’t recognized them in years, you haven’t spoken a coherent word in months, and even if for some reason your brain chose this moment to recover lucidity you’re on enough morphine to be well inside the borders of la-la-land. A lot of families, faced with the prospect of missing work and school to sit by what’s basically a living corpse day in and day out for weeks just to watch it turn into a non-living corpse, politely decline. I absolutely 100% cannot blame them.
There is a national volunteer program called No One Dies Alone. Nice people from the community go into hospitals to spend time with dying people who don’t have anyone else there for them. It makes me happy that this program exists.
Nevertheless, this is the way many of my patients die. Old, limbless, bedridden, ulcerated, in a puddle of waste, gasping for breath, loopy on morphine, hopelessly demented, in a sterile hospital room with someone from a volunteer program who just met them sitting by their bed.
And let me just emphasize again, not everyone dies this way. I am hugely selection biased by my position in a hospital. But enough people die this way. I’m in a small community. There can’t be too many deaths here. Of the ones there are, I see a lot of them. And they’re not pretty.
[EDIT: Just looked up statistics. Only about a quarter of old people die at home. The rest are split between hospitals (disproportionately ICUs), nursing homes, and hospices.]
Hospital poetry is notoriously bad.
I mean, practically all modern poetry is bad. Modern poetry by complete amateurs could be expected to be even worse. But hospital poetry is in a league all of its own as far as badness goes.
When I search “hospital poetry”, Google brings up examples like the following:
There is no baby.
There will be no baby.
I feel bad making fun of it, because it is clearly heartfelt. This is part of the problem with hospital poetry. It is very heartfelt, whereas I think most popular poetry comes from people who have strong emotions but also some distance from them and a little bit of post-processing. And unfortunately doctors, who are on this decades-long quest to prove they are actual people with real feelings and not just arrogant robot-like people in white coats who know a very large number of facts about thyroiditis, just eat this sort of thing up.
But I’m not really complaining about those sorts of endometriosis poems. The ones I’m really complaining about are worse. The epitome of the genre I can’t find on Google, because it was presented as some kind of event at the hospital where I trained in Ireland. I don’t remember it, but let me just make up some doggerel approximately faithful to the spirit of the original:
When my doctor told me that I had cancer
I knew that despair was not the answer
It felt like the darkness was closing in
But to give up would have been a sin
Everyone here helped me so much
And nothing is like a helping hand’s touch
Thanks, Dr. Connell, and everyone in Cork
I really appreciate all your hard work
Doctors and nurses eat this kind of thing up and put it on shiny plaques that go on the walls of the hospital. (I suggest a wall near the gastroenterology unit, to expedite care for people who start vomiting.)
Wittgenstein said that “if anyone ever wrote a book of ethics, that really was a book of ethics, it would destroy all the other books in the world with a bang.” I’m not really sure what he meant. But if anyone ever wrote a book of hospital poetry, that really was a book of hospital poetry…well, I don’t know what would happen, but I bet it would be loud and angry, and that it wouldn’t be put on shiny plaques on anybody’s walls, except maybe the same people who hang Hieronymous Bosch paintings on their walls.
Am I calling hospitals hellish? Sure am. It has nothing to do with the decor, which has actually gotten much nicer in your newer hospitals until it’s hard to tell them apart from a stylish office building. It’s nothing to do with the staff, either – most doctors and some nurses seem pretty happy and trade banter around the water coolers like everyone else. It’s mostly the screams.
The screams are coming about 33% from the confused demented old people I mentioned, 33% from people having minor procedures performed without anaesthetics for one or another good reason, and 33% from people who just have very painful diseases (plus 1% from me sitting in the break room looking up examples of hospital poetry for this post). They run the gamut of human screams. There are wordless shrieks. There are some angry screams, like “$#%! YOU GET ME OUT OF HERE!”. There are a lot of people screaming “SOMEBODY HELP ME!” And there are some religious screams, like “OH GOD!” or “JESUS HELP ME!” or “CHRIST NO!”.
When I first started working in hospitals, I would not only inevitably run over to these screams, but I would feel contempt and anger at the rest of the hospital staff who would just continue their daily routine. I soon learned better. Not only would I be unable to do anything – I can’t single-handedly cure their painful illness, or make their procedure go any faster, or explain to them that the year is 2013 and they’re no longer on their childhood farm in Oklahoma – but as soon as they saw me I would be the one they started screaming at and expecting to save them. The bystander effect, my last defense, disappeared. Sometimes I would make a stand by asking the nurse to increase their pain medication or something, and be politely told all the reasons why that was a bad idea from a medical perspective (pain medication has lots of side effects which doctors monitor carefully). In the end I would just slink out of the room, wishing I had never come in.
So the constant screams being completely ignored by a bunch of happy people going through their day is pretty hellish. But there’s also the bodies. Usually we are able to avoid thinking about people as bodies except to briefly note that certain people like Emma Watson are really hot. In a hospital, this filter disappears. Some people have gigantic swollen legs the size of your waist. Others have huge ulcerated sores all over. Still others have skin covered with the sorts of bacterial colonies you usually only see on a petri dish. And body sizes range from so thin that you can see their organs bulging out of their skin and use them as a grisly impromptu anatomy lesson, to so morbidly obese that you have to search through the fat folds to find body part you’re looking for.
The senses are under constant assault. Smell is the worst. There are some people who can identify different infections by smell. Pseudomonas aeruginosa is supposed to smell fruity. Gardnerella is supposed to smell fishy. Clostridium is supposed to smell like the worst thing you can possibly imagine covered in feces and left to rot on a warm summer day.
But the other senses get their time too. The sight is vexed by flashing call lights. And the hearing is battered with incessant beeping from IV lines which have hard-coded alarms to alert doctors of critically important events such as “Look at me! I am an IV line!” The end result is something it would take a first-rate poet to describe. I’m tempted to nominate Oscar Wilde. He did a good job on prisons in Ballad of Reading Gaol, and I feel like the skill would transfer:
He does not rise in piteous haste
To put on convict-clothes,
While some coarse-mouthed doctor gloats,
and notes each new and nerve-twitched pose,
Fingering a watch whose little ticks
Are like horrible hammer-blows […]
He does not stare upon the air
Through a little roof of glass;
He does not pray with lips of clay
For his agony to pass;
Nor feel upon his shuddering cheek
The kiss of Caiaphas.
But after some more thought, I think I’m going to go with Wilfred Owen:
If in some smothering dreams you too could pace
Behind the wagon that we flung him in,
And watch the white eyes writhing in his face,
His hanging face, like a devil’s sack of sin;
If you could hear, at every jolt, the blood
Come gargling from the froth-corrupted lungs,
Obscene as cancer, bitter as the cud
Of vile, incurable sores on innocent tongues […]
Or better yet, if Oscar Wilde’s muse when he was writing Reading Gaol were to bear Wilfred Owen’s children, then those kids would be competent to write hospital poetry that was actually hospital poetry.
Dante would also be an acceptable choice.
You may have read the excellent article How Doctors Die. If you haven’t, do it now. It says that most doctors, knowing everything I’ve just mentioned above, choose to die quickly and with very limited engagement with the health system.
I (and the doctors in my family whom I’ve asked) am pretty much like the doctors in the article. If I get a terminal disease, I want to wring what I can out of the few months of life I have left and totally avoid any surgery, chemotherapy, amputations, ventilators, and the like. It would be a clean death. It would be okay.
My big fear, though, is that I won’t get a terminal disease.
If I just start accumulating damage, growing more and more bedridden and demented and pain-riddling until I want out – well, there won’t be a way out. If there’s not some very specific life-saving treatment that can be withdrawn, I’m stuck above ground, not just in the “unless I want to risk the danger and shame of suicide” way I am now, but – if I’m too debilitated to access means of suicide on my own – in an absolute way.
Even if my doctors and nurses and caretakers are sympathetic, my only legal option, without exposing them to jail time, is to starve myself to death – something both painful and difficult, and itself not really the way I want to go.
I was sitting in an ICU room yesterday where a patient’s body had just been brought out after their death. My attending was taking care of the paperwork in the other room, and I was sitting there reflecting, and I started thinking about what it would be like to die in that room. There was a big window, and it was a sunny day, and although I mostly had a spectacular view of the hospital parking lot, a bit further in the distance I could see a park full of really big trees. And I knew that if I were dying in that room my last thought would be that I wanted to be outside.
I think if I were very debilitated and knew I would die soon, I would want to go to that park or one like it on a very sunny day, surround myself with my friends and family, say some last words, and give myself an injection of potassium chloride.
(this originally read “morphine”, but just today the palliative care doctor at my hospital gave an impassioned lecture about how people need to stop auto-associating morphine with euthanasia, because it makes it really hard for him to offer morphine painkillers to patients who need them without them freaking out. So potassium chloride it is.)
This will never happen. Or if it did, it would be some kind of huge scandal, and whoever gave me the potassium chloride would be fired or something. But the people dying demented and hopeless connected to half a dozen tubes in ICU rooms aren’t considered scandals by anybody. That’s just “the natural way of things”.
I work in a Catholic hospital. People here say the phrase “culture of life” a lot, as in “we need to cultivate a culture of life.” They say it almost as often as they say “patient-centered”. At my hospital orientation, a whole bunch of nuns and executives and people like that got up and told us how we had to do our part to “cultivate a culture of life.”
And now every time I hear that phrase I want to scream. 21st century American hospitals do not need to “cultivate a culture of life”. We have enough life. We have life up the wazoo. We have more life than we know what to do with. We have life far beyond the point where it becomes a sick caricature of itself. We prolong life until it becomes a sickness, an abomination, a miserable and pathetic flight from death that saps out and mocks everything that made life desirable in the first place. 21st century American hospitals need to cultivate a culture of life the same way that Newcastle needs to cultivate a culture of coal, the same way a man who is burning to death needs to cultivate a culture of fire.
And so every time I hear that phrase I want to scream, or if I cannot scream, to find some book of hospital poetry that really is a book of hospital poetry and shove it at them, make them read it until they understand.
There is no such book, so I hope it will be acceptable if I just rip off of Wilfred Owen directly:
If in some smothering dreams you too could pace
Behind the gurney that we flung him in,
And watch the white eyes writhing in his face,
His hanging face, like a devil’s sack of sin;
If you could hear, at every jolt, the blood
Come gargling from the froth-corrupted lungs,
Obscene with cancer, bitter with the cud
Of vile, incurable sores on innocent tongues
My friend, you would not so pontificate
To reasoners beset by moral strife
The old lie: we must try to cultivate
A culture of life.
I can see you probably have more reasons than just medical confidentiality to try to maintain anonymity.
Last scene of all,
That ends this strange eventful history,
Is second childishness and mere oblivion,
Sans teeth, sans eyes, sans taste, sans everything.
(Shakespeare, on old age)
This is a horror, but in part at least, it is of human making.
We transhumanists must make individual vows never to die like this! This abomination we cannot let pass. Are we not members of a high and most ancient order?
If worse comes to worst, verily do we vow:
Hackers Maxim #7
‘Live free or die: Death is not the worst of evils’
“every single palliative care doctor I have ever met is relentlessly cheerful and upbeat and this is a total mystery to me.”
No pressure, maybe? They can’t save anyone. (Alternatively, selection effects- if you aren’t that sort of cheerful for genetic reasons, you don’t survive long.)
I suggest asking the palliative doctors how they remain cheerful. I’m tempted to believe it’s because they know they’re doing less damage than most, but this is just a just.
Meanwhile, in a desperate attempt to dissociate…. how do they handle these matters in Raikoth?
THere was a mention of suicide being an extremely common way to die.
I think it is for the same reason I finally became insanely happy- because I found a way to help even if it meant never having a success.
Excuse me, I meant “this is just a guess”, not “this is just a just”.
Also (sorry to add to the depression) in the UK at least the statistics for ‘home death’ include old people’s residential homes, as distinct from ‘nursing homes’ where a higher level of nursing care is provided. The definition of ‘home’ for the very elderly who die at home is not necessarily what we first imagine.
A question – you say you wouldn’t want surgery etc if you had a ‘terminal disease’. But there are lots of cancers with good (ie over 50%) survival rates, where surgery and chemo have a chance of something-that-looks-more-like-cure rather than a-few-months-of-delay. Presumably you’d want radical treatment in that situation?
I’m assuming you have to look at the initial condition of the patient, not just the type of cancer.
I vote that Scott be given all the jobs so he can write about all of them.
I concur, though of course we need to restrict the amount of jobs he holds at a time so that he actually has the time to write. (Plus I imagine he might also appreciate having a chance to sleep every now and then.)
White white walls,
All of us feel trivial
I worked at a service home for the elderly for a while. I never saw anything quite this bad, but it was still enough to convince me that age-related decline is one of the worst causes of suffering that Western society has. While I’m not very big on the standard transhumanist claim of “death is the ultimate worst thing” anymore, I do think that old age in its current form is really, really bad for a lot of people.
If people just spoke framed their support of things like SENS more in terms of extending our healthspan rather than eliminating death, those projects might get a lot more popular.
Reading Scott’s post, I realized that this kind of scenario is what I always imagine when people talk about cryonics and the need to “cure death”. When people describe death as an absolute evil that must be prevented at all costs, or when they speak of the death of any single person as an irreversible scar on the fabric of the universe, I think of this kind of situation where people are desperately clinging to life (their own or someone else’s) even when it has ceased to contain any of the qualities that make life worthwhile.
Whereas it sounds like you’re saying that the “want to cure death” people are thinking about how terrible this dying process is, and their solution is not “just kill people faster”, but “get rid of death altogether”.
I guess you start by using the word “healthspan” a lot so people have it available as a concept?
A person’s healthspan is the number of years he can expect to spend healthy. In america it’s around 55.
I am so very glad that there is euthanasia in the Netherlands, and that my parents didn’t have to go through what you describe. Dying of cancer fucking sucks enough already by itself, and I will definitely choose euthanasia myself too, when the time comes.
My experience with people who have believed in euthanasia all their lives, is they don’t get to it for some reason or another.
Arthur Hugh Clough, “The Latest Decalogue“:
(In the original this is a satire on selfishness and lack of charity, not on end-of-life care; it would have been hard for Clough to foresee that officious striving to keep people alive would become a problem.)
All the stuff in this post, the extended suffering, the dying by inches. They don’t deal with that. They get to do some good; not save lives, but ease suffering. They can do some unequivocal good: easing suffering on the way to the inevitable death. They don’t deal with the hellish trade-off between making the patients life progressively worse in order to extend that life another few months.
They get to deal with death more like you originally pictured it. Not exactly, presumably. But all the stuff you talk about here that’s making YOU miserable, they don’t deal with that and indeed get to explicitly reject it.
Who is financing this extended suffering? The Catholic church? Dare we hope it’s not quite so bad in non-Catholic-related hospitals? Does this one honor “Living Wills” at all?
“Dare we hope it’s not quite so bad in non-Catholic-related hospitals?”
Nope, the same laws apply. The cultural buzzwords may be somewhat different, but what people actually do, and the way that docs counsel patients’ families, is pretty much the same as what Scott describes here.
(I think the specific phrase “culture of life,” as associated with the religious right, is a sort of red herring in this post. This dysfuncionality isn’t associated with “a side,” because that would imply that there’s *another* side trying to forestall this pathological culture of care.)
Most Catholic hospitals, to the total consternation of those on the conservative side of the actual faith, are currently funded by your tax dollars through medicaid, medicare, and the private industry tax known as health insurance premiums.
Your tax dollars, via Medicare.
Did you actually picture death this way? I ask, because I read a book called “How we Die” written by a surgeon who uttered essentially the thoughts you just did. I don’t think that I thought about death much before reading that book and if I did it was usually restricted to very quick deaths (accidents or heart attacks) or very slow deaths (fading away through dementia). Then again, perhaps my lack of that idealistic vision of death is a result of me not watching much television or movies.
Also, I take it from this that you aren’t signed up for cryonics? I ask in ernest because I have been sort of convinced that it won’t work
There remains the option of timely and deliberately taking the sleep of liquid nitrogen.
Unfortunately, in the eyes of the state, that would be suicide, and thus illegal =(
Hell, if you managed it, I suspect there’s a decent chance they’d autopsy you.
I think you put in the wrong link. It points to this very blog post. I want to see what convinced you that cryonics won’t work.
I don’t know about Alex, but it was the economic argument that convinced me cryonics won’t work.
You see, our technological culture, in addition to extending life far beyond any useful level of health, ALSO has used automation to put a ridiculous percentage of the human species out of work.
I could easily imagine a day when thawing out the cyonically preserved may be possible, but that nobody will want to do it because the population pressure on available jobs will be so bad that the popsicles will be looked at as a lower form of life than illegal aliens.
That, and the economics of getting to that time aren’t terribly good either- several cyronics companies have now gone into bankruptcy, and the courts just quietly turn off the freezers and rebury the bodies.
I… doubt that is going to happen just that way. Culture is going to *have* to adapt to not requiring labor of everyone, even if it’s slow and difficult, and when adaptation is finished we should have a very wealthy world that wouldn’t be so sensitive to that sort of thing.
Of course, the interim time is going to be a problem…
Ok, so? Why was “smash capitalism” not a subgoal of yours anyway?
Whoops I meant to link to this.
I agree about the last words thing; the fantasy notion of slipping away after resolving all your regrets and with meaningful last interactions is a fantasy. The deaths I know of have either been sudden (an aunt who was alive but ill in bed when her family went to Sunday Mass, and found dead when they came back an hour or so later; neighbours who literally ‘dropped dead’ or were sitting at home talking with their family who then just keeled over and died) or death in hospital (and yes, it is as long-drawn out as you say, and you get to a point where they and you are just waiting for it to be ‘time to go’).
On the other hand, there were two times when doctors asked us “Do you want us to let your father go?”. The first time, we insisted he be resuscitated and although I know the doctors thought they were just sending him home to die, he recovered, and had another fifteen years of life, despite needing to go on dialysis (believe me, it was a real surprise, and his consultant liked to introduce him as “Here’s my miracle man!” while we quietly scoffed in the background “Yeah, if it wasn’t for us, you lot would have let him die!”
Second time, he suffered a stroke and this time we agreed. No point in making him suffer on when it was only likely that he’d have a series of strokes until the last one.
So I’m betwixt and between on this, but I agree (and Catholic theology agrees): ‘extraordinary measures’ are not obligatory.
“(H)ealthy people are “alert and oriented x 3″, which means oriented to person (you know your name), oriented to time (you know what day/month/year it is), and oriented to place (you know you’re in a hospital).”
I’m in trouble so, because I’m always getting stuck on No. 2 (oriented to time): I’ve woken up in mad panics, dashed out the door, and ended up arriving at school/work an hour or more before it opens because I’ve thought it was later than it was; I frequently go around (and have done for years) saying “Wait – today’s Tuesday? I was sure it was Wednesday!” (and vice versa) and yes, I’ve even gotten tangled up on what year it was (in my defence, this is usually at the start of the year, when I’m still getting used to writing ‘2013’ instead of ‘2012’ as I had been doing).
I have trouble with the last one, I hardly even know I’m in a hospital
I took care of an elderly lady who died at home. She had dementia. She didn’t die in a gentle watercolor either, nor were there any “last words” that anyone would want to repeat. Death just kinda sucks. This is not to say that all deaths suck equally, though.
I once cared for a 40-year-old man who had had a pulmonary embolism and hypoxic brain injury while hospitalized for a minor elective surgery months before. He didn’t know where he was, had to be restrained often, had incurable chronic diarrhea, was fed through a G tube, and screamed during dialysis, and there was no end in sight. He could live for years that way.
So, since Scott somehow didn’t say it, I will: ADVANCE DIRECTIVES PEOPLE. Before you get ANYWHERE NEAR A HOSPITAL. For EVERYONE.
“I once cared for a 40-year-old man who had had a pulmonary embolism and hypoxic brain injury while hospitalized for a minor elective surgery months before. ”
I don’t know what this is–was it a consequence of the elective surgery, or chance that it occured the same time?
A pulmonary embolism can happen to anyone, but they are much more common in people lying immobile in the hospital, during and after surgery: http://en.wikipedia.org/wiki/Pulmonary_embolism
There are things that can be done to reduce the risk (leg exercises, compression stockings, pneumatic massaging devices), and sometimes the nurses even have time to make sure they happen.
Also, I hate to say this, but I’m afraid it may be unwise for you to be posting this much uncomfortable honesty with such a thin veil of anonymity. You can be identified and so can your institution. Please think things through.
Isn’t the case that a lot of patients, even in the horrible posistions they’re in, subjectively don’t want to die? I’d guess if I were in that posistion, even if I looked horrible and knew it survival instinct would kick in in most possible scenarios.
Of course there would be some exceptions even factorign for drugs- even then, however, that doesn’t change the fact that your arguments here go a little too far.
It comes with the culture. The overwhelming fear of death may not be unique to Western liberal society, but its absence is probably more common than otherwise.
Even if it does come with the culture, were I the one making the choice I would be inclined to respect it, I would nonetheless make it myself, and I don’t see why that’s an ethical argument for not doing as much to keep the patient alive as the patient themselves desires.
Regarding Lasch, I agree that that’s his choice and see no reason to consider it morally wrong in any way. But I don’t see how it’s relevant to those who choose to live longer for the sake of it- if making the policy I would treat it as a personal choice.
As a part of that culture of life, I think atheists like you need less Catholicism and more Buddhism. And that you specifically, might need to rethink if a career in medicine where you’re dealing with demented old people in pain, is the right place for you at all.
Buddhism, you see, is what I ended up turning to in my years wandering away from the faith- as all Cradle Catholics seem to do in their late teens and early 20s. Some return. Many, many, many do not. I returned because I learned the one secret that Zen Buddhism has that Catholicism does not, that atheism does not:
Expecting miracles leads to disappointment. Our own desires for something we cannot have, is what creates suffering.
As a good Catholic I’d call that bad theology- but absolutely vital PHILOSOPHY. Until you change your desires and myths to match closer to reality, you’re in for a hellish time.
Implicit assumption- that happiness matters enough that it justifies changing a system of priorities around, relative to other things prioritised by said system.
Pingback: Link blog: lindy, death, aging, intensive-care | Name and Nature
My husband’s grandfather had a pretty nice death. His health declined quickly over a few months, but he was staying in his own house with round-the-clock care. He had been widowed years before but hated sleeping alone. On his last night, he asked the home health aide to get into the bed with him, and, bless her, she did. He fell asleep next to her and didn’t wake up in the morning.
I’m still kind of amazed that the aide had the compassion to 1) lie down on the bed to comfort an old sick person, and 2) tell his children about it after he died. Awkward. But she did the right thing. Maybe she did it regularly, and she only told the family about the last night.
This is so, so true. In the last few years of nursing school, I’ve acquired an attitude of “yeah, I guess death is bad, but the alternatives are frequently worse.” I’ve seen a few “good” deaths, in the sense that the family was all there and no one was screaming and the patient was comfortable and it didn’t take 2 weeks. I’ve also seen a lot of families who were so unreasonable about the “do everything!” that they made all the staff want to tear our hair out.
All in all, though, I think the “culture of life” think is less of an issue in Canada. Comfort care gets brought up early on, and it’s enough in the media that people have a non-awful reference frame for it, and there aren’t *that* many screamingly unreasonable families.
This is a very sad post Scott. I will be praying for you to St. Damian of Molokai. I thought this was a beautiful poem by Robert Lewis Stevenson.
To see the infinite pity of this place,
The mangled limb, the devastated face,
The innocent sufferers smiling at the rod,
A fool were tempted to deny his God.
He sees, and shrinks; but if he look again,
Lo, beauty springing from the breast of pain!—
He marks the sisters on the painful shores,
And even a fool is silent and adores.
Robert Louis Stevenson
Kalawao, May 22, 1889
Can I share this on Facebook?
Also, tell me when you’re ready to leave, bringing the most respectable remnant of your co-workers to MetaMed full time. I think we’ll be ready to have you pretty soon. I think you’ll be ready to leave pretty soon. If you make it a year and you need that to get your license, great, but don’t stay if that means letting it break you. Don’t stay if it means that this outrage might die and leave only dull despair.
We want you as a doctor, but hell, we need you as an orator. I read this, I read internal emails expressing fear and uncertainty about condemning the system, honestly and on its own terms, and I’m left wanting to end my blog post with “Carthago delenda est”.
Speaking of Metamed, I was curious if you guys marketed yourself to insurance companies (life & health, mainly). No doubt they do the same sorts of things, but it may be good for them to have an outside company look at, for example, the chances of survival from disease x with the best treatment and so forth.
Or is there too much liability for them to venture away from what the actual attending physicians recommend?
(Apologies for only now joining the dialogue five months later. Michael Vassar referred me to this post today.) Medical malpractice insurance companies should use Metamed (but don’t) to double check diagostic accuracy. This would be analogous to the initial use of LexisNexus about 25 years ago for double checking the manual background checks and litigation histories assembled by junior ligitation attorneys. Over the course of time, LexisNexis moved from being that secondary check for quality control purposes to being the primary tool for background checks. If MetaMed succeeds, a similar transformation might occur in the medical industry.
How is all this related to MetaMed?
Reading this felt like being repeatedly punched in the gut, and it’s tremendous.
This post is beautiful and terrible. It breaks my heart what is happening to people every day. I grew up in a family of doctors and I know that the cruel ways in which end of life treatments are handled by the system are tragic for everyone involved. I’ve spent a lot of time personally cultivating mindfulness and meditation practices that have helped me through extremely traumatic times. I’d be honored by the opportunity to share some of that with you if you are interested in discussing some ways in which such techniques might be helpful for you as you engage in this work.
Oh Christ. Just… yeah. I’m really, really glad that I decided to read this just before going out and getting higher than Hitler’s gas bill. This is so close to some of my obsessive thoughts. Both of my grandfathers died slowly and painfully.
Scott, please please take care of your mental health. I don’t even want to dwell on what it must be like for you now.
Brb, seriously fucking need a break from this reality.
You retyped it instead of just copying and pasting; maybe because you wanted to feel it and remember it? Which is cool; but it’s “like a devil’s sick of sin,” not “sack of sin.”
Aside from that most minor of errors, I wholly agree with Michael Vassar (like I pretty much always do), you’re quite an orator.
Thansk for the observations and reflections. I occasionally repost your articles to facebook (extending your potential readership my nearly a dozen!); this time I had to reiterate the trigger warning, recalling my wife’s Grandma who some years ago was lucky to pass at home with family but did have several painful, only occasionally lucid, days at the end.
Some people say things like “If I can’t X, I don’t want to live.” I usually find I have a higher threshhold for what would be worth retaining a hold on life for. Not being able to move or eat, etc., would take out most joy from life, but so long as I can retain some coherance and follow the exploits of my offspring for awhile, I think I’d like to do whatever is in my power to hang on. At the stage of unrecognizing friends and family and being unable to move, I’ll take starving.
Though the lengths hospitals go to prolong the last few moments is probably wildly unsustainable, barring some sort of singularity, and I would hope to undertake such efforts at surviving–or not–at home.
Oi, poetry critic: “like a devil’s sick of sin,” not sack of sin. Changes the meaning.
Speaking of hospital poetry, I’m rather surprised you never heard of Dannie Abse:
Pathology of Colours
I know the colour rose, and it is lovely,
but not when it ripens in a tumour;
and healing greens, leaves and grass, so springlike,
in limbs that fester are not springlike.
I have seen red-blue tinged with hirsute mauve
in the plum-skin face of a suicide.
I have seen white, china white almost, stare
from behind the smashed windscreen of a car.
And the criminal, multi-coloured flash
of an H-bomb is no more beautiful
than an autopsy when the belly’s opened –
to show cathedral windows never opened.
So in the simple blessing of a rainbow,
in the bevelled edge of a sunlit mirror,
I have seen, visible, Death’s artifact
like a soldier’s ribbon on a tunic tacked.
Pingback: Friday Night Linkdump | Gerry Canavan
This entire blog, perhaps intentionally, or, at best, unavoidably, is like an unrelieved, never ending retch. The mind can do better, (no internal rhyme intended here), in overturning (or overcoming, or whatever) matter. Oh dear, what can the matter be? Sorry for this seemingly facile comment, but whatever is anyone to do under the dire circumstances? Poet Thomas, said ” Do Not Go Gentle Into That Good Night – Rage rage against the dying of the light”
Probably hopelessly romantic.
Medical don’t want end-of-life medical care, but how do they define it? What do they put into their advance directives? What indicators do they use (if sufficiently conscious) to say enough is enough?
“Robin Hanson sometimes writes about how health care is a form of signaling, trying to spend money to show you care about someone else. I think he’s wrong in the general case – most people pay their own health insurance – but I think he’s spot on in the case of families caring for their elderly relatives. The hospital lawyer mentioned during orientation that it never fails that the family members who live in the area and have spent lots of time with their mother/father/grandparent over the past few years are willing to let them go, but someone from 2000 miles away flies in at the last second and makes ostentatious demands that EVERYTHING POSSIBLE must be done for the patient.”
This is probably one of the most fucked up examples of signaling/hypocrisy I’m aware of, and I completely believe that it’s true.
I feel like the way America treats old people is kind of shitty compared to say, Asian countries. Over there (if my understanding is correct), they move back in with their kids once they can no longer function on their own. Over here, the kids put them far away in a home so they don’t have to deal with them.
My grandma lives in a retirement community only an hour away, but my family only goes and visits her four times every year or so. On the one hand, it really does feel like we should be spending more time with her, especially because she’s probably going to die soon. On the other, visiting her just isn’t really very fun. We go over there, we take her out to a restaurant, we talk a little about what we’ve done since we last saw her, she asks us the same questions five times in a row, we go back to her house, we sit around and have a little more idle discussion, we go home. It’s kind of an unspoken agreement that we don’t want to do it any more than we have to.
It feels like having her live with us would be a vastly better solution. What does she do all day over there by herself? I think she has some friends, but still. If she lived with us we could actually enjoy spending time with her… we could sit around and watch TV with her – we could just hang out with her without it having to be this big thing that we do. And she could get to feel connected to humanity as she neared death, instead of isolated and forgotten.
On the other hand, I can imagine that my parents might not be a big fan of having to deal with her constantly. And you could potentially end up having to take care of four grandparents, which would be difficult. I guess there are trade-offs.
To an extent it depends on how you look at it. Out of curiousity, though I’m not a libertarian myself strictly speaking why do you reject the libertarian idea that given there was no contract (except perhaps implicitly) the understanding could be whatever the parties liked?
Thank you for expressing what I feel. Geriatric nurse am I. All I can add is that the deaths of the persons I care for is such a blessed relief for my old patients–I see their faces after death–no pain of any kind anymore. Like birth–death is a struggle too–but at the moment of their death–instead of grieving–I celebrate while wrapping their bodies and filling out paperwork. It is the end of their suffering–which medical care and me carried out and yes–may have prolonged.
All health care providers can do is facilitate their dying under present laws.
But how harsh my words of welcoming death will be for parents who lose a child to illness or accident, or peoples who are lost too soon– in evil and war and famine –to read my selfish words saying death is a welcome thing.
So much work to be done as we live today.
If they actually WANT to die, your attitude is understandable. If they don’t, I trust that’s a case where you make an exception?
I Googled the title of the post. It’s from a Leonard Cohen song, which itself comes from an old Jewish prayer traditionally said on Yom Kippur.
Excerpt from the translated version of the prayer:
And the Cohen version:
Thank you very much for this. It’s given me a lot to think about.
This is the best blog post I’ve read in months. Which means that either I have a terrible list of RSS feeds, or you are becoming quite an impressive writer.
This too we shall conquer; here too shall we rescue.
What advise would you give someone in their mid-thirties who has a normal BMI? What are the most important measures one can take to better ones chances to not end up in a nursing home bed somehere in need of someone to turn them over?
Invest extra time and energy in your husband and children (Dunbar group of friends is helpful too but not essential) and inculcate in them respect for elders and the importance of family.
Yes of course diet and exercise and avoid smoking, but most folks in this blog’s demographic would get more health benefits in their old age by having a strong nuclear family than from fine tuning their micronutrient ratios.
Spot on. I am a respiratory therapist. My fantasy is to have skilled nursing facility that does not send anyone to a hospital. What is treatable at the SNF is treated. Everything else is comfort care.
Pingback: Tea With Chris: The Same Red Event Perpetually | Back to the World
95 year old man killed by police for refusing medical care.
Pingback: [Turing 2013] Atheist Entry #2
Coming late to this discussion, but you might appreciate the hospital poetry of Gottfried Benn
Again, comming late to this discussion but agree with Michael Vassar that you are wonderfully articulate in your outrage. Hold onto it and turn it toward what is possible. Something always is possible even if you have to invent it for the rest of us.
Pingback: When discussion of exceptions is taboo | N=1
I feel like I have to respond to the opinion that dying at home is the best thing. For a very few it can be. For most, it places too much of a burden on the family or staff of the residence. Most families and for that matter, small, light-care care homes are not equipped or qualified to provide the necessary care and comfort to a dying patient.
I had the nightmare of caring for such a patient. He was in the final stages of prostate cancer and was in a large amount of pain. He was housed in a small, light-care care home with 15 beds. During the night shift, there was only one staff member. This particular night I was that staff member. This patient had a doctor’s order for oxycontin but a limit of every two hours. This was not sufficient pain control. We did not have the training to give IV’s and there was not an arrangement for anyone to come in in the middle of the night and do it. So the oxy would be given and 20 minutes later, the patient would be in horrible pain, screaming, keeping other residents awake and the other residents werescared because this was not a normal thing to be happening. It was a nightmare. He was under the care of a pallative care nurse but the nurse could not or would not help at 3 a.m. I talked to the administrator and he was moved to hospital the next day. All those horrible things that happen in hospitals would happen at home too maybe sooner and to a more serious degree. We at home and staff in light care cannot provide that kind of care any more than staff in hospitals. So stop living in a dream world. If your elderly relatives become bed ridden, do the right thing for them, not the easy thing for you. Provide comfort care only. Please.
Wow. I know exactly what you mean. That poor, poor man. I am having a similar experience with my grandmother which has reinforced my beliefs that Kavorkian was a hero and most people are nuts. My grandmother has dementia to the point that she yells and moans the same thing non stop 24 hours a day, including the phrase, “please help me”. This is continuous except for 15 minute patches of sleep here and there as she no longer really sleeps just dozes. She weighs 90 lbs if that and is eggshell fragile screaming when touched due to degenerative muscle tears compounded by arthritis. Her bowels no longer work and she fluctuates between constipation, where the assistants administer a suppository, or she has explosive diarrhea that must be cleaned up which requires moving her excessively and thus more screaming and claims of pain. She is on peritoneal dialysis and has congestive heart failure with a pace maker, prior to loosing all capacities a few months back she was swallowing nitroglycerin like candy and up until she stopped walking entirely my mom was dragging her to doctors and what not. Even then moving was difficult and required wheelchairs and walkers. Her dialysis port is always sore and semi infected despite meticulous hygiene. She has a raging UTI on a twice monthly basis though she is bathed by attendants and her diaper and garments changed regularly. She is on oxygen though she does not even move about to use oxygen as she can no longer stand nor even muster the strength to hold a sippy cup. She has forgotten how to eat or even swallow and still she is forced to choke down at least 15 pills per day and takes the occasional bite if food which she may stop chewing and allow to fall from her mouth. Her mouth is so dry the pills do not even dissolve when they lodge so she has to be coaxed and coaxed endlessly and given water in a dropper. She has round the clock private care to the tune of a few thousand per month. I had rather this money go to medical research or a non profit hospital. This team also includes a physical therapist which is useless. She is always freezing and has to be by a fireplace or heater or covered in layers of heated blankets so comfort is hard to achieve. She is moved around like a doll with much ado and her screaming in pain which my mom would claim was from her dementia and not so much pain. Finally after months of this torture on her poor failing little body my mother is now considering hospice care mainly due to the cocktail of pain killers and anti anxiety pills no longer soothe her at all-I really have no clue why it has not stopped her heart. It has been surreal to witness this and I feel so bad for people who do not have the resources or loved ones for even this much relief if relief is what you call it. However I think my grandmother would have never considered euthanasia or absence of life saving measures if given a choice while she was cogent because she had an unhealthy fear of death even then. The way we view death is really twisted and I fault religious nonsense with a lot of that phobia. Modern medicine, while mostly positive, can be grotesque because it can extend life past a semblance of life. I personally have had a living will made since this despite being young and can only hope we make strides in having physician assisted suicide legalized so people have options.
Very well put together. I would like to use this to teach and talk with medical students and interns about death/dying/pt ed/etc. Do you have a specific way in which you would like this to be cited (actual name vs pseudonym, etc)?
You can use the pseudonym Scott Alexander.
I have a very split reaction.
On the one hand, the adult in me is damn glad my mother already has a living will with do-not-resuscitate orders. The adult in me considers death-by-potassium-chloride in a nice, sunny park to be a proper way to go, dignified and humane.
On the other hand, the seven-year-old child in me is insisting that the process of dying ought to be horrible and disgusting, because that is what death is in the first place — and we mustn’t lie to ourselves about that!
For myself? When Malakh ha’Mavet comes for me, all made of eyes, the bitter drop on his sword, I want to spit in every last one of those eyes, and then I want to die quickly, or better yet, not at all.
Fuck this whole noise, and sorry I couldn’t give more of the mature-adult response.
Pingback: An Oncology Nurse on the Barbarity of the ‘Culture of Life’ | Andymatic
Wow. Great writing and very accurate from a patients point of view. I’m in my third month of being in hospital (broke femur, have external fixature) and I can affirm they are truly a hellish place to be, despite the nice decor, pleasant nurses, NA’s, etc. no matter what the put on the walls it’s not home. It is became clear to me though that illness/disability is the great equalizer… People from all walks of life are here, no one can escape.
Btw I will not be doing any hospital poetry, I will however pry for no more enemas to relieve the constipation that pain meds bring
I stumbled across the link to your blog entry on Reddit and I am with you regarding the disconnect people have with death, especially in terminal diagnosis. I am witnessing this living decay with my grandmother and observing my mother’s rather strange life saving measures. It is unfortunate that Kavorkian’s methods are unlawful because his philosophy had merit for those wanting to die with a semblance of dignity. Sometimes death is better indeed.
Interview with Katie Butler, author of What Broke My Father’s Heart.
“My advice to anyone facing major surgery after the age of eighty is to consider all the risks. People at that age are often like Humpty Dumpty: it doesn’t take much to knock them off the wall, and then no one can put them back together again. My rules of thumb are: No general anesthesia after the age of eighty, unless there’s an incredibly good reason, because of the threat of cognitive damage. And no open-heart surgery after eighty either.”
Thank you, thank you for a very cogent and compassionate post. There needs to be a change of cultural norms before some of this misery can be eliminated. In the end, of course, it is up to the individual’s will and ability to know when “enough is enough”, but I haven’t figured out how you do that, and obviously about 3/4 of Americans haven’t either. I only pray I’ll acquire that wisdom at the right time.
However, I also really worry about you – you absolutely need a vacation, preferably in a National park.
Pingback: Words of the Week – a catch-up | seɪ.vɪŋ.feɪs
Not that it matters much, but your Wittgenstein quote is a bit inaccurate; here’s the correct version:
It is not life, but death which defies our acceptance. We welcome and embrace birth as “life” yet cannot condone death as an equal measure of life. Is is our fear of what comes (or doesn’t come) next? Is it our inability to imagine that which has not yet been experienced consciously? Indeed, we will have advanced impressively when we can allow ourselves to recognize a “life span”; when we can accept that our life has run its course and we can then accept that which we term “death”. Death is not the enemy, it is a rite of passage. A life well lived deserves nothing less than death well earned. Embrace death, it is your right and privilege. Do not allow others to deprive you of this right.
What about the young like me suffering ! Like the elderly !am I going to be in worse pain and more ill than I am !! I lost so much weight vomiting I finally got down to 67 pounds at the age 43 and I am urinating bloodd ,urine brown stinky , 104 fevers , ulcer sores all over inside and out side of body , can not breath , chest pain , no energy , so much Horrable pain in my back, stomach ,poohing blood, water in lungs heart rate so fast , blood pressure drops and other horrible side effects for over four years doctors where saying it was in my head or I was making my self sick !! Then one day I went to a nother emergency room and they said I had stage 3-4 kidney failure on my records three years ago !!! Then I found out besides my left kidney is not working and my right kidney is only functioning 30 percent ! I have secondary hyperparathyroidism renal ,hypertension ,copd , asthma, Right atrial enlargement and arthritis in my spin with three herniated disks and ulcer in stomach !! Why did it take so long for a doctor to look at my old testing results !! I kept asking for emergency doctors and every doctors I seen , I asked for help and alls they had to do is look at my back tastings no one told me the results !! Now in Michigan you do not see a doctor you see a PA . I have not seen a doctor even going to emergency room and most of the time they send in P A not a doctor at all for my conditions I see a P A who gives me medications that stop me from urnating for days and makes my conditions worse and she dos not believe in giving pain medications to patients !! I only get a hour of sleep a night and I have to sit up to sleep because it hurts my spin to lay down !! I all ready scream and yell all day and night I am so sick and in pain and it’s going to get worse !! I have read in this artical !! I no what it’s like to starve because food will not stay in my stomach !! I am hungry all the time so hungry and thirsty ! My insurance will not cover me being in a hospital or a nurse !! And my whole check is $76.00 a month that is my only income !! So yes when your income is that low I lay in my waste for days tell I can get up to clean my self ! I pray no ones has to suffer like me , Thank you for letting people young like me no it gets worse !!