Oh, excellent, I was thinking about posting this but didn't get around to it.
You know what bothers me about the end-of-life care issue? The difficulty of talking straightforwardly about the difference between care with a substantial chance of being, um, curative? getting you out of the hospital and feeling okay?, and care that's only going to extend heavily medically supported life. Both my parents have been fairly clear on the 'no machines, shoot me in the head first' front, but I don't understand them to mean 'I don't want serious medical treatment even if it were going to get me up and around for another decade'. And in an emergency, I don't know how exactly I'd tell a doctor "If you think they've got a good shot of getting 'better', do whatever you can. If not, don't even start."
I just glanced at the article. Was there any actual evidence that doctors behaved differently? Or was this just one doctor saying doctors behaved differently?
At a quick glance, it seemed like a bullshit article.
Just looked at it again. Totally bullshit.
No actual evidence that doctors behave differently.
It is anecdotal, but why does it set off your bullshit detector?
Doctor in will's family who feels differently?
It doesn't seem way out of line with stuff Dr. Oops has said, but I'm not sure she'd endorse it.
Both my parents have been fairly clear on the 'no machines, shoot me in the head first' front, but I don't understand them to mean 'I don't want serious medical treatment even if it were going to get me up and around for another decade'.
My parents both wrote living wills that dealt with this kind of question in some detail. I'm not sure I could have brought myself to the point of asking them to, though, so if yours haven't I'm not saying this is the only way out.
When my mother died there were two doctors involved. The senior guy told my sister, who was there, that nothing they could do would prolong her life more than a few weeks or give her any quality even for that time. The junior guy wanted to throw everything he had at it and see if they could keep her breathing a while longer.
My sister rang me and I opened the "will" and read it down the line; and we said, no. We probably would have anyway, but it helped to make it less unbearable.
The senior guy told my sister, who was there, that nothing they could do would prolong her life more than a few weeks or give her any quality even for that time. The junior guy wanted to throw everything he had at it and see if they could keep her breathing a while longer.
The thing is, they've both been clear enough that I wouldn't be in any doubt what to do with this choice (it would suck to be in that position, but I'd know the right answer). What I worry about about is a doctor saying "They'll die if we don't do [X]," and not being able to get a straight answer on what will probably happen if we do do [X].
My dad sent this to me, and it's definitely in line with his plans, so there's one more anecdote for you.
It wasn't terribly hard to get the answers when we asked direct questions about the DE's chances after her cardiac arrest. She was going to die quickly without the machines and drugs, more slowly with, and if a major medical miracle happened she would be a bed-ridden invalid. Once the docs got the idea we wanted answers and not platitudes they were forthcoming.
All three of us had had more than enough discussions about this to make taking her off all the gadgetry a very sad but guilt-free decision.
If you think doctors are irrational and paranoid about lawsuits when it comes to taking biopsies of moles, just imagine how they feel when the issue is whether they should literally say "I advise that this patient should be left to die".
The real point of the article isn't that this is the way doctors behave around their deaths, but that this is the way more people should die, doctors or no, and that doctors are just on the forefront of the battle against the reduction of human life to biological life.* I think this claim is true regardless of the facts regarding how many doctors behave as described.
It's quite understandable that people would go in for heroic measures, because once the option is presented to you it can easily seem like not doing it amounts to your killing the person in question, since it's up to you, in some sense, whether h/h life will be extended some miserable & useless amount.** And in this day and age we no longer think it's appropriate for doctors to conceal the options from patients or the families of patients, and use their own best judgment about whether or not to go for heroic measures. (And one rather doubts that if a family member said to a doctor, "what do you think?" or "what would you do?", the doctor would say, "I would not perform this life-extending operation, but rather would let h/h pass into the beyond", or at least, that the doctor would say the second part of that.)
* formula not to be found in article that I recall, BUT APT.
** I am of course merely a neutral reporter.
It is bullshit bc it makes a claim without evidence.
A very similar accurate article could have been written. But, instead he props the article on a foundation that he totally makes up.
Write the article about your doctor friends who do this without claiming that the vast majority of doctors support your claim. Unless you have some evidence that the vast majority of doctors believe it.
I am not sure why my position is so surprising. Unless you have some facts that support your article, do not allege that you have some facts that support your article.
11:
This article is being passed around bc of the claim that this is how doctors behave.
Another good article on end-of-life care.
10: Yeah. They were very careful about not appearing to push us. We had a meeting and they first asked us "What do you think the situation is?". I said, "From what you are telling us and from the way you're acting, she doesn't stand a chance and if you do pull off a major medical miracle she might be strong enough to change the channel on a TV remote control but probably not." That latter is very close to an exact quote.
After that they were open about it. That's probably not a typical situation. Two of us had plenty of medical knowledge and the DE's kid knew her wishes quite well so there was not much beating around any bushes.
I am not arguing against people deciding not to prolong the dying process or against people choosing to have fewer more enjoyable days than more less enjoyable days.
Just dont say that 4/5 Doctors recommend it unless they do.
My fear is more about losing people, or losing my future, as opposed to the death process itself.
I'm the reverse. I'm afraid of the death process but I figure after death I won't exist so I won't care about anything. The current me is cool with the idea of not existing, but not with suffering incredibly on the way to getting there.
Saw "The Big Sleep" the other day. Major studio release, big hit...Bogart is sitting next to the murdered body of an acquaintance, and he says to the air, "You did all right for yourself, but you left me here high and dry". Can't imagine such a tough minded / nihilistic attitude toward death in a pop culture production today.
12: More anecdata? My MD mentor at UAB found out about his colon cancer, checked himself out, went home, said goodbye to his wife, went to his backyard, and shot himself. Not messing around seemed to be the way several other faculty members went too though he was the only overt suicide that I know of.
I dunno if I have the guts to use a gun. I still think helium is probably the best way if I have choice.
This article is being passed around bc of the claim that this is how doctors behave.
How do you know?
That's not why it was passed to me.
people choosing to have fewer more enjoyable days than more less enjoyable days.
I'm not sure that having nugatory bodily or mental self-control but being intubated, e.g., is aptly described as having "more less enjoyable days".
A very similar accurate article could have been written. But, instead he props the article on a foundation that he totally makes up.
If this is what you think—that a "very similar accurate article" is possible—then what do you care that this article doesn't cite the figures that obviously must exist to ensure the possibility of the similar-but-accurate article? Indeed, if the issue is the lack of citations, then (one would think) this article is also accurate, it's just not well written. I mean, how inaccurate do you think it is? What's deceptive about it? Is the failing formal or substantive (presumably the best response here is that we don't know whether it's formal or substantive because of the lack of figures, but in that case, what do you think the very similar but accurate article would be about?)
Just dont say that 4/5 Doctors recommend it unless they do.
Good thing he doesn't say that, then.
17: The attitude toward naked pictures has shifted even more.
I probably have more professional friends who claim that they want to go the gun route as opposed to a long and prolonged fight.
But, I also have two or three friends who are medical professionals who were told that they had very limited time before their death, but chose to fight and have lived for much longer than expected.
Come on, nosflow! You are suggesting that the article isnt suggesting that doctors know best and this is what they do?
The article is called "How Doctors Die."
they don't die like the rest of us. What's unusual about them is not how much treatment they get compared to most Americans, but how little. For all the time they spend fending off the deaths of others, they tend to be fairly serene when faced with death themselves. They know exactly what is going to happen, they know the choices, and they generally have access to any sort of medical care they could want. But they go gently."
I meant that a very similar article could have been written by arguing how his suggested method was best, without deceptively suggesting that the reader should agree with him bc doctors agree with him.
That article has been written. See 14.
We had some difficult decisions to make during my father's 18 month illness. Immediately after the post-op "stroke" he was on full ICU machines and gradually came off many of them. During the first 6 months we chose all kinds of interventions to deal with the latest crisis (fluid on brain, inability to swallow, pneumonia) because we felt he had a reasonable chance of getting to a post-stroke decent quality of life. (he did get off all the stuff and as far as limited walking.) However after his cancer recurred and he was slowly dying - essentially from debility after his palliative radiation treatment - we had to pick and choose what would make him comfortable as opposed to unnecessarily prolonging things. He had had to go back into hospital as for a couple of reasons his needs just vouln't be met at home. The palliative care physician tipped us off to think carefully about putting in a PEG tube again as this time it wouldn't be towards his recovery * and once in it would be almost impossible to take it out. One of us especially felt, all the same, as if we were leaving him to starve (the doctor's speech patterns & heavy Germanic accent probably didn't help either as he came across with emotionless affect) and perhaps only the fact that he could still take very occasional spoons of that custardy invalid food swung that one. We had already gone for having him hydrated by a drip and later when veins couldn't take it, we opted for some kind of water directly into the abdomen thing because dehydration was causing discomfort, in turn that was discontinued when his body stopped absorbing the fluid. Oxygen yes for little nostril tube, no for mask or respirator. So it's a lot more complex than just machines/no machines.
*there are lots of peoPle of course living full lives with PEGs in, different sitch.
I can't make it past the first page of that NYer article.
There was an article sometime in the past year or two - in the NYT magazine, maybe? - about a palliative care doctor who, when diagnosed with her own incurable disease, did the exact opposite of everything she had spent her career trying to get her patients to do. I think the take-home from the article was that even when you deal with death on a day-to-day basis, facing your own can still be a different thing.
26: Yeah, the choice to focus on a single patient at the beginning and the end makes it harder to read, but the middle is full of interesting details.
And I read that article too, and can't remember where I saw it.
...chose to fight and have lived for much longer than expected.
Sure, lots do. If I were told I could take some seriously nasty treatments but there was a reasonable chance of a return to close to the status quo ante I for sure would have taken them when my kids were younger. Now, I'd have to think about it but still might take a chance on it.
But an ICU or heavy duty chemo/radiation at the tail end, when they throw everything they have at you for a few more days or weeks or even some months ? I've seen too many people in that state to want it for myself.
28: Agreed. (There is palliative radiation, though, which my father had to knock out the brain tumour giving him agonising headaches but which hastened his death.)
about a palliative care doctor who, when diagnosed with her own incurable disease, did the exact opposite of everything she had spent her career trying to get her patients to do.
Which direction? I assume she encouraged everyone to forgo treatment and then pulled out all the stops for herself?
There is palliative radiation
IMO, that's very different. I'm very much in favor of keeping the pain down even if it shortens my life.
That must have been a horrible year and a half. My sympathies.
I managed to skim the NYer article.
The words you use matter. According to experts, you shouldn't say, "I'm sorry things turned out this way," for example. It can sound like pity. You should say, "I wish things were different."
This is exactly right. When the surgeon came in to tell my mom last May that her stomach cancer was metastatic (which none of the pre-surgery scans had shown), I'm pretty sure he used that exact phrase. I was so, so impressed with the way he spoke to her. He was incredibly empathetic, but maintained just the right amount of composure and distance.
30: Yeah, pulling out all the stops for herself. If I remember correctly, the article framed it as everyone thinking/hoping they'll be the exception, the .5% for whom the extreme measures will work.
Blume, did you ever get a chance to tell the surgeon that his manner had helped as much as anything in that situation could? I bet he'd like to hear that.
When the surgeon came in to tell my mom last May that her stomach cancer was metastatic
Oh no, I'm sorry to hear this.
It had never even occurred to me, but I bet you're right. I'm not sure I'm up for it right now, but it will definitely stay in the back of my mind.
Right now we're talking about borderline cases. I can remember a case I saw about 25-30 years when I was working in a hospital. I rarely went into ICUs, but one time I happened to do saw and saw a well-known local woman getting the full ICU treatment -- 4 point restraints,3-4 IVs, 2 nose and 1 mouth tubes, catheter, everything. I did what I had to do and didn't return to that floor for 3 or 4 weeks. When I got ther, the same woman was still there, in the same condition (more or less). A little later she denied, and they auctioned off her possessions to pay the hospital bills (she was single and childless).
A real horror, but I don't thin that that is done anywhere anymore. In those days ICU docs would be proud of how long they were able to keep terminally ill patients alive.
A little later she denied died
happened to do saw so
Wow. My fingers frequently substitute a wrong word with some distant similarity to the right word.
Thanks. She's been in palliative chemo since early summer, and has been doing well enough that my exasperation with her God/Jesus talk has been able to compete with the more pressing issue (i.e., death) again.
38: They do still do that. I saw it done a couple of years ago to a 93 year-old man with nutty children who refused to let him go. That was a four week horror.
If you don't want that then you do the fuckin' legal paperwork correctly and pick your proxy carefully.
My psycho aunt wanted the 38 treatment to be applied to my grandmother a few years ago, and if my mom hadn't overruled her (which resulted in her sister accusing her of killing her mother, basically), she probably would have been able to get it.
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Say, speaking of death, did everyone see that it is now appropriate to redouble your masturbatory efforts w/r/t Mumia?
http://www.nytimes.com/aponline/2011/12/07/us/AP-US-Mumia-Abu-Jamal.html?_r=3&ref=news
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33 et al. -- So, so sorry to hear that. Thoughts and wishes going your way, and glad that the palliative chemo is going OK.
I just did a living will, but haven't gotten it properly endorsed and notarized, meaning that my legacy (appropriately) might be an annoying amount of legal confusion. I'll probably get that fixed.
My main fear isn't dying, but Alzheimers. Watching my grandmother go through 5+ years of only barely being alive but definitely not at the level in which a living will became appropriate was incredibly sobering.
Yes, my thoughts and best wishes to Blume and family.
44.last: Yep. At least it doesn't look like much of the risk can be inherited (outside of early onset).
Sympathy, Blume. I hope this is as easy for your family as a really hard process can be.
Adding to the chorus, I'm really sorry, Blume. I know you had mentioned something about it here earlier and I've wondered occasionally since. Best wishes.
If you don't want that then you do the fuckin' legal paperwork correctly and pick your proxy carefully.
Absolutely.
Blume: I wish things were different for your family.
So sorry, Blume. It's a bugger, really. I hope your mum has many more good times, and you with her.
My main fear isn't dying, but Alzheimers.
Damn yes! I would really like to have a source of something quick and painless against that.
1.2 is my problem right now. I really need to bite the bullet and read my dad's living will, but even taking it out of the filing cabinet is a hard step to take.
Oh, and sympathy and best wishes - and empathy! - to Blume and her family. It sucks.
My grandfather had a sunny-disposition experience with Alzheimers - he didn't seem to find it stressful at all, even when he was quite out of it. On the other hand, plenty of people find it extremely distressing. That's my fear around Alzheimers and growing old - that I would find it stressful, not peaceful. It's not quite the "losing my mind" part of it.
That's my fear around Alzheimers and growing old - that I would find it stressful, not peaceful. It's not quite the "losing my mind" part of it.
For some people, it seems to not stress them out too much, and that was true of my Grandmother some of the time. For an extremely, and distressingly large portion of the time, however, she would literally be howling in pain or overcome with some fear that she couldn't express. This was true even with drugs, though drugs helped some.
There's an additional wrinkle that probabilistic thinking is difficult, and often the headline number is misleading. Gould has an essay about how although the average lifespan of people with the cancer he got was very short, in fact a large percentage of people survived well for a very long time. It's just that a little over half of people had a very short life expectancy. But he had to go read the primary literature to find that out, which is not something a typical patient can do.
My grandmother managed to avoid the thoroughly-medicalized fate of 38, but this summer spent her last several weeks with severe dementia in a nursing home, quite out of it but to the extent she was aware of anything, very uncomfortable with the situation and some of its specifics (like not being able/allowed to get up to go to the bathroom). I don't know if there was really a better way to handle what happened to her; she could have lasted much longer in that state than she actually did.
55: The excellent New Yorker link in 14 mentions Gould's essay.
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Just spent fifteen minutes on the phone with furious opposing counsel. The first seven or so minutes were an uninterrupted rant on how if we didn't agree to let him do what he wanted to do in precisely the way he wanted to do it, he was going to do something else that we'd really really hate, and he was going to call my (elected official) boss who would give me what for, and our behavior was totally uncalled for. So I let him run down, gave him a long pause to be sure he was done, and told him that actually, we were completely happy with the 'something else that we'd really really hate'. And he told me not to bluster. Honest, some people you can't win with.
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Oh, I've got all the cards on this one -- I could hardly lose unless being shouted at made me surrender. But it hurt my feelings being told I was blustering by someone who'd just spent an uninterrupted 5-10 minutes shouting at me.
Admittedly, I was smirking, but on the phone that shouldn't have offended him.
The Gould essay itself is also available online: http://cancerguide.org/median_not_msg.html
People can be astonishingly un-self-aware.
I'm so sorry, I did this in the wrong thread -- I didn't mean to wrench the discussion off-topic in the death thread, just wasn't thinking. Sorry about that (and all my sympathy for Blume and family).
That's rough, Blume. My sympathies.
Re Alzheimers: Yeah, that possibility bothers me. I don't want the kids to have to take care of me but I don't want to check myself out just because I forgot to take my wallet when going to a party last week. I guess I'll just wait until one of them initiates the "Should you be driving?" discussion with me.
There's a very large piece of ground between "can't drive" and "low quality of life."
66: It means they're starting to parent me. That's not going to happen.
My father-in-law started showing signs of Alzheimer's a couple years ago and has declined sharply over the past few months. It's awfully depressing to watch. My wife is one of seven kids, five still in the Triangle and a sixth a couple hours away, so her mother has more support than a lot of people get but still. Exhausting.
And not entirely off the subject, NMM to Harry Morgan AKA Col. Potter.
69: Aw. Got to see him a few times when I was in college and he and Walter Matthau filmed a movie on campus.
Set dressing note: They had fabric painted to look like concrete that they glued onto the yellow-painted curbs.
67: So should we be checking on your driving?
"Bio, your comments have been getting a little... vague lately. Are you sure you should be driving?"
71: If my driving ever gets a vague as many of the comments here you'll be seeing the results on TV news. TBH I'm not so much worried about Alz as I am of having a stroke and becoming cat food after a few days. I think I'll set up an internet camera aimed at the coffee machine. If my kids don't see any activity there for a day they'll know something is majorly bad wrong.
That's hard, Blume. Even when you tell yourself you know what's coming it can be difficult to really internalise it. I hope circumstances will be as kind to you all as possible.
My folks are religious and that was a big part of how they coped but it didn't drive me crazy. I expect it depends how it manifests itself. My agnosticism is pretty wishy-washy and I don't mind a certain amount of Catholic ritual, especially around death.
TBH I'm not so much worried about Alz as I am of having a stroke and becoming cat food after a few days.
This recently happened to my yoga teacher's sister, though probably with cardiac arrest rather than a stroke. My teacher couldn't get ahold of her sister, but she couldn't get anyone to break into the house without driving the 4+ hours down there herself and being there when the police went in. By the time they did that, it was already past the point where they would let her see the body. That kind of thing probably happens relatively often, but still, how horrible.
If you're a cat about to be cheated out of a meal, yes.
73.2: If we could just do the rituals, that would be fine. Unfortunately, my mom is hellbent on making us believe. She seems to think we're somehow actively resisting, and if we would just go to church / stop being such snobs / think about someone other than ourselves / get away from the influence of that terrible secular university, we'd surely come around.
You just poison the cat so that if it doesn't get the antidote every morning, it dies. If that type of poison doesn't exist IRL, lobby the government to find someone to invent it. The free market is subject to little inefficiencies like that.
72: that's a clever idea. I like it.
77; and just when the last thing you want to be doing is having stupid arguments where nobody is going to change anybody's mind.
Blume, I'm sorry about your mother. That is really rough.
I, too, am sorry to hear about your mom, blume, and wishing your family the best. and apo, sorry about your father-in-law; I imagine that must be really stressful and difficult for your wife and siblings. disagreements over who's doing the "most work" caring for people can often be hard. the scary thing with alzheimer's is that the very point at which you probably don't want to live anymore in that state is precisely when you've reached the inability to carry out your suicide plans.
Here is a different perspective from someone recently inundated with loss:*
Personal death is a blessing, to be welcomed, not feared. The living suffer, the dead do not.
Live in the present. The future holds anxiety, the past holds sadness, and both the future and the past keep us from the joy of the present.
We are not wired to instinctively do this, but we can learn. I am trying to learn this.
Tripp
*Recent losses - Sister, job, Wife, in-law family, home, dogs, Mother, other Sister (suicide).
Wow, Tripp, that's rough. You have all our sympathies, and we will hold you in the light.
Are you ok--do you have a place to live?
so sorry tripp--that's fucking awful.
I wish you all the best, Tripp. That sounds like a giant pile of horribles. I hope the things that can change for the better do and the things that can't become easier to bear. And that's good advice you give, btw. It got me through a very rough period of loss piled on loss.
Holy shit, Tripp, that's awful. You're not actually homeless, are you?
Oh no, Tripp, I'm so sorry to hear that. That's a staggering amount of loss.
84-88:Y'all didn't read well. I will have to think about why people do this.
Tripp, isn't it a beautiful day?
(Almost every Japanese gendai-deki has that line.)
Tripp, seriously, are you OK? Best wishes from here.
83: What an awful list! That would crush me completely. Best wishes, Tripp.
I think bob, in 89, was suggesting that Tripp was quoting someone else who'd dealt with that parade of losses, and on rereading Tripp's comment bob might be right. Tripp -- all my sympathy if you were talking about yourself, but if bob's right and you read this, could you straighten us out?
I'd think that what bob is saying is, based on what Tripp said about living in the present, offering condolences about past events is somehow missing the message. Then again, (can I insert Flippanter's mumble mumble here?) who knows.
I'd think that what bob is saying is, based on what Tripp said about living in the present, offering condolences about past events is somehow missing the message. Then again, (can I insert Flippanter's mumble mumble here?) who knows.
93:What parenthetical said, at least missing Tripp's message
With that list of horrors "Sorry for your losses" felt (insert intensifier) inadequate anyway, and I don't want to add to Tripp's sorrows by saying he has brought me pain.
I will say that "Isn't it a beautiful day" is usually said by the grieving. Classic climax to Tokyo Story but it is ubiquitous in Japanese films, along with "Sorry to have troubled you" and "It can't be helped." Common enough to be one of the few things I am willing to say about Japanese culture.
32:The words you use matter. According to experts, you shouldn't say, "I'm sorry things turned out this way," for example. It can sound like pity. You should say, "I wish things were different."
I did notice this above.
I haven't contributed to this thread, because I haven't had reason to grieve much lately, and because I am a little different about grieving and expressions of empathy or whatever. With opinions.