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#1
Old 09-09-2012, 11:40 AM
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Tell me about your ventilator/respirator experience

Due to medical threads in the past talking about someone being on a ventilator or respirator I've become curious. For example, in this thread about purplehorseshoe's husband she talks about him being on a ventilator and conscious, communicating with those around him.

What is this like from the patient's perspective? I can't imagine it's comfortable having a tube going down your throat into your lungs (well, the upper part of your bronchial tube). How do you keep from gagging? Or do you gag? Do you get used to it or is it just this horribly uncomfortable thing the whole time?

I can't imagine it's a wonderful thing to have something forcing air into you, either.

What about the tracheotomy/ventilator combo? Is there pain from the hole in the throat? More discomfort? Less?

Anything I forgot to ask about?
#2
Old 09-09-2012, 01:54 PM
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Had the tube taken out whilst conscious, but only been ventilated whilst under GA (too many times to remember the actual number). Had it done last week as a matter of fact.

The extractions are strange but not painful, I would say they were uncomfortable and it does leave me with a sore throat for a day or two afterwards. You get told to breathe out and as you're doing that they gently pull the tube out, takes maybe 5 seconds.

My only conscious moments whilst having the tube down are the seconds before the tube is pulled, so I don't even have a chance to realise I have one.

Naso-gastric tubes on the other hand bug the hell out of me and I need to be sedated (midazolam ftw) for them to be put in and I hate the sensation of having them in place and they do make me gag constantly and I drool rather than swallow because I can't cope with the sensation of swallowing with a tube in place.

NG tubes and PICC lines freak me out.

Sorry I couldn't answer your question any better.

Last edited by Szlater; 09-09-2012 at 01:54 PM.
#3
Old 09-09-2012, 02:29 PM
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No, I appreciate your answering.

Partly, that's something that I fear, probably at least in part through cultural indoctrination and I'm hoping by understanding it better it will be less frightening. You don't make it sound wonderful, but on the other hand, it doesn't sound like a horrific painful experience. Icky and uncomfortable, but a lot of medical stuff is that way, isn't it?
#4
Old 09-09-2012, 02:37 PM
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Originally Posted by Broomstick View Post
You don't make it sound wonderful, but on the other hand, it doesn't sound like a horrific painful experience. Icky and uncomfortable, but a lot of medical stuff is that way, isn't it?
Yeah, I would say that that's fair.

It is not pleasant but it is far less unpleasant than some of the things that I've had done.

I think it helps that when I have had it done it has been in the recovery phase of anaesthesia and you don't really care about anything at that time, you just want to sleep.
#5
Old 09-09-2012, 03:36 PM
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Hope you don't mind some professional response?

I slept through being intubated for surgery, but I've cared for plenty of intubated pts, and heard some interesting stories. A lot of it is getting used to what's happening. I've have pts on cont infusions of Versed, a short acting drug related to valium, that were stoned, but awake enough to write or work a TV remote. I've had a 4 y/o in this state, 'laughing' a jokes me and grandma were doing. Not actually making any sound, you understand, but smiling and moving the chest wall in a way that makes the vent pressure alarms go off briefly.

Now the ventilator has multiple settings to allow us to match the pts best effort, we can go from complete control were you program rate, volume and pressure for the pt who is making 0 resp effort, to allowing the pt to set their own rate and depth of respiration with only a little pressure support from the machine so that they don't have to 'suck' as hard to get a breath. Weaning the pt ventilator support as drugs or disease resolve is a normal part of treatment.
#6
Old 09-09-2012, 03:48 PM
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I've never seen this myself, but I've heard stories about people with chronic lung disease that have been intubated multiple times and chose to squeeze the bag attached to their tube during the transport from ER to ICU, rather than have someone else squeeze it for them. As I say, I've never seen this, but it's not out of the realm of possibility. I have had many people that cath their uninary bladder repeatedly, and ask to have a foley placed, and I've had people with multiple bowel obstructions request an NG tube, and I've had one that offered to place the tube themselves.

One of my co-workers told me about a pt who was stung by a bee and stuck a piece of tubing down his own airway and walked in the front door, and I have no particular reason to doubt it. While we have a powerful drive to keep shit the fuck out of our airway, it can be overcome.
#7
Old 09-09-2012, 04:20 PM
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Originally Posted by outlierrn View Post
I have had many people that cath their uninary bladder repeatedly
Thats the only way I can pee now, have done it urethrally but didn't like it much so they made me a small hole in my abdomen through which I can pass the catheter. Done it so many times over the past 12 or so years that it is no big deal. Go to the loo, pop the catheter in, pee, pull it out and I'm done.
#8
Old 09-10-2012, 01:36 AM
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Originally Posted by outlierrn View Post
Hope you don't mind some professional response?
I'm sorry, but this is probably going to come across as very angry, but NO, that is exactly NOT what I want.

outlierrn, you start with the presumption that I have never seen an intubated patient. I have. More than once. Most particularly my mother. The last time the doctors said she needed to be intubated she demanded enough Versed to wipe her memory. She found it better to obliterate six months of her life rather than remember even one minute hooked up to that machine. After that, she said she would rather die than be on a ventilator again and she meant it, and indeed, she never was again.

So, you see, on a certain level I need to know if this was just something mom couldn't face - my mother had a LOT of things she couldn't handle that I cope with easily enough - or if it is something truly horrible for everyone who has that experience.

So, no, I don't need or want a "professional" litany of how you dispense drugs to "ease" the suffering of your patients. Doctors lie. Just because someone doesn't remember pain or distress doesn't mean they didn't have it. I watched my mother suffer for months, struggle against the machinery for months (when she wasn't sedated unconscious or maybe it was just immobile). SHE never remembered it. I do. Doctors make hard decisions all the time, I know that, but they don't have to live with the consequences. What's right for one person is a living hell for another.

I want to hear first hand accounts. That's very clearly what I asked for in the OP. I want to know what the subjective experience is like. I don't care if it's good, bad, or horribly ugly I want to know the truth not in the medical sense but rather from the human viewpoint of the person who actually experiences it. In all the details. I don't want reassurance I want the truth.

Unless you spent time on a ventilator and remember it you simply can not answer my questions regardless of how much medical training and experience you have. This isn't about being a doctor or nurse, it's about being a patient. I fully realize that the answer will vary from one person to another because what one person finds tolerable another finds intolerable. It's a question about the human condition, not about science, which is why I put it in IMHO instead of General Questions.

So, again, sorry if that came across with some anger but the truth is I have a LOT of anger around this issue. I didn't really realize it until you posted here and I had to figure out why your words made me so furious because clearly that was not your intent. Nonetheless, there it is.

So, one more time: tell me about your experience(s) being on a ventilator. Not your patients' experiences, or your friend's/relative's/someone else's experience, I want to hear about YOURS.
#9
Old 09-10-2012, 03:42 AM
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It isn't horrible.

They put it in while I was in a coma so I don't know if that part hurts. I pulled it out a couple times, the last time almost dying because they couldn't get it back in fast enough. That's why, when I finally came to, my wrists were cuffed to the bed.

But once awake I didn't actually feel it. Mine went in at the base of my throat, below the vocal chords, so I couldn't talk. I would mouth words. (Couldn't seem to write yet.) But there was no gag relex etc. from that. It was a medical necessity that could have been in my hip, or my leg. (It felt that removed.)

I hated it, tho, because the ventilator didn't move fast enough for me, once I was aware. I wanted more air, more frequently. I'd had ARDS and basically had been suffocating to death. They describe it as "air hunger."

But really, the trach wasn't that bad. It was the tubes they'd threaded down my throat that made me feel like I needed to gag them up. They're what damaged my vocal chords. Once out and singing again, my voice was like a guitar string getting ready to break; never knew what note was going to come out. But after months and months of practicing I was able to get it back under some control.

Your mother may have been reacting to some tubes actually stuck down her throat. Or, too, she might have felt like she just wasn't getting enough air from the ventilator. She was feeling discomfort from something.

I know it was a hard time, I really do. But the time that those medical procedures bought were that much more time you got to have with her. She was probably (I'm projecting here) in and out of consciousness but at some time saw your face, and was glad.
#10
Old 09-10-2012, 02:54 PM
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Originally Posted by Broomstick View Post
...Unless you spent time on a ventilator and remember it you simply can not answer my questions . . .
Considering the amount of other medications, including painkillers (Mr. Shoe's been getting a bit of Fentanyl), that can interfere with long-term memory, I wonder how many people will only remember little fragments of their time, bits and pieces of being on a vent but with no sense if whether discomfort was momentary or long-term. For example, it seems like, in Shoe's case, he's present in the moment, and may have a short-term memory of something, but not retain it into the next week.

Sorry 'bout your experience with your mom's care. Just curious, though: when you say she was intubated and on a ventilator, did you mean the kind of hookup where the patient's end of the oxygen tubing goes into their mouth, or via a hole in their trachea? Because based on Shoe's experience, FWIW the former is much, much, much more uncomfortable, since it's constantly gagging the patient.

Anyway, sorry it was so hard on the both of you ...
#11
Old 09-10-2012, 03:03 PM
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I was briefly conscious while they inserted the ventilator tube. They pounded it in like a stake. I woke up again a couple of days later and kept trying to get rid of that thing in my throat, so they put me in restraints and sedated me. I woke up a while later and they were removing the vent tube, which was, like Szlater says, uncomfortable and also somewhat painful for me but nowhere near the worst pain I've experienced. I do remember the extraction as particularly traumatic, but that's probably because I was simultaneously realizing I was not dead, and I wasn't real happy about that. I wish I could tell you more, but I was mostly dead while I was on the ventilator and don't remember much.
#12
Old 09-10-2012, 04:14 PM
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She was probably (I'm projecting here) in and out of consciousness but at some time saw your face, and was glad.
No, actually, she was terrified just about the whole time, regardless of whether we were there or not. There might have been some recognition of us, but mostly there was just disorientation and fear. My mother had some psychiatric issues, among them problems with anxiety and fear. Until she entered hospice the doctors seemed quite willing to drug her unconscious for pain but completely unwilling to address her fear.

The only peace she had was when she was knocked unconscious. I can't help but think six months of being in a terrified state, whether she remembered it or not, could not have been beneficial to someone recovering from heart surgery.

It didn't help that mom was terribly hard to sedate. It took more than expected for a woman her size, and she had a strong tendency to metabolize it quickly. This extended to problems with anesthesia. She actually did wake up in the middle of one of her surgeries, but was unable to communicate that fact. The doctors flat out disbelieved her until she described about twenty minutes worth of OR conversation and sounds, at which point they were forced to admit that yes, something had gone wrong. Despite this being in her medical records it was a repeating theme with her waking up early post-surgery and trying to leave, trouble sedating her, and problems with pain control. No doubt all that contributed to her fear and loathing of hospitals and the near-panic state she was so often in during ICU stays.

Quote:
Originally Posted by purplehorseshoe View Post
Considering the amount of other medications, including painkillers (Mr. Shoe's been getting a bit of Fentanyl), that can interfere with long-term memory, I wonder how many people will only remember little fragments of their time, bits and pieces of being on a vent but with no sense if whether discomfort was momentary or long-term.
Is it that they sedate people on ventilators because it's so horrible they don't want them to remember, or is it that people on ventilators are usually so sick they're sedated/drugged up for other reasons?

Quote:
For example, it seems like, in Shoe's case, he's present in the moment, and may have a short-term memory of something, but not retain it into the next week.
That was a problem with mom – you could explain what was going on and she'd relax for, maybe, five minutes then she'd forget all about it and just know she was in an ICU with painful/undignified things going on and she'd start to struggle.

Perhaps I should note that that six month stretch occurred 30+ years ago. It wouldn't surprise me if some changes have been made in procedures since then.

Quote:
Just curious, though: when you say she was intubated and on a ventilator, did you mean the kind of hookup where the patient's end of the oxygen tubing goes into their mouth, or via a hole in their trachea? Because based on Shoe's experience, FWIW the former is much, much, much more uncomfortable, since it's constantly gagging the patient.
Post-surgical complications of heart surgery. As I was still a minor at the time I was “protected” by being kept in ignorance. While that may be of benefit for some, my personality is such that I would have been MUCH better off with a full disclosure of what the hell was going on at the time. I still can't get a decent answer out of my older sisters because so much time has gone by everyone's recollections have gotten fuzzy. What is upsetting to me is not knowing. It's like when someone got all concerned about my taking care of mom in her last days because, you know, mom might die (actually, it was a certainty) and how upset would I be about the dead body? Answer: dead bodies don't upset me. Mom being dead upset me, but her empty shell didn't. She wasn't the first dead person I'd seen, and frankly, despite her long decline, in better shape than most of the dead people I've seen. I lost my fear of dead bodies when I actually saw my first dead body. I stopped being afraid of dismembered body parts after I saw my first detached limbs (aftermath of a train vs. person suicide). Mind you, I don't enjoy looking at such things, they are icky, but the reality was much, much less worse than my imagination.

I would prefer never to experience being on a ventilator myself, but I am interested in alleviating my fears here. I don't want false reassurances. If someone had a horrible experience I want to hear about it. On the other hand, if most folks come in here and say “it wasn't that bad” I'll take them at their word and chalk up some of my mom's extreme distress to her own personal issues regarding medical stuff rather than a general rule.

But to answer your question – mom never had the hole-in-the-trachea thing, just the tube down the throat. I think they were putting her on it and taking her off it a lot. As I said, I was a minor and over-sheilded, old enough for a couple trips to the ICU to see mom but apparently not worthy of being told what the hell was going on. Again, despite the tubes, machines, mom looking like hell, and so on I actually found the visits to me very reassuring to me, although some of the other adults were upset as hell over it, or upset that I was even allowed into such a place.

I'm sure it's quite difficult deciding what any person – regardless of age – should be exposed to for extreme medical things and it's going to vary all over the place. One of my sisters can not handle these things at all. Well, we're all adults now and have some understanding of each other, and some respect for our respective limits. When mom was in hospice that sister was asked if/how often she wanted to see mom and the answer was invariably “no”. Which we respected. She did a lot of other things, like grocery shopping and errands and paperwork chasing while folks such as myself, who aren't thrilled with things like wiping mom's ass but not traumatized by it either, did what needed to be done for her physical care. My other sister happens to be a doctor now, and a hospice director, so for mom's final decline I actually had someone I could ask questions and trust to answer me without needless sugar-coating.

Yes, I asked her this question. She admitted she wasn't entirely sure how uncomfortable all that was, not having experienced it herself, and indicated that it did vary considerably. Hence my coming here hoping for some first-hand accounts.
#13
Old 09-11-2012, 02:10 PM
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Originally Posted by Broomstick View Post
... It didn't help that mom was terribly hard to sedate. It took more than expected for a woman her size, and she had a strong tendency to metabolize it quickly. . .
For whatever it's worth, my mother is the same way. It's like she's simply immune to morphine and other opiates. (Which made it very difficult for her to grasp how or why my cousins became addicted to heroin, but that's a thread for another day.)

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Originally Posted by Broomstick View Post
...Is it that they sedate people on ventilators because it's so horrible they don't want them to remember, or is it that people on ventilators are usually so sick they're sedated/drugged up for other reasons?
Frankly - and I don't mean this negatively - I don't think they really care much whether or not patients remember something horrible down the road. In the ICU, the focus is: keep the patient alive. That's it, that's the key. So, in Mr. Shoe's case, he was given sedatives if/when his heart rate and/or blood pressure went up too high. It didn't matter so much** what was causing that; what mattered was that a high BP or heart rate was putting extra stress on his heart. Extra cardiac stress (when he was already suffering heart failure) might cause him to die. Ergo, reduce the stress on his heart, by sedating him to lower the BP and rate.

This is not at all to suggest that ICU staff are heartless - my experience has been the exact opposite. If a patient is conscious, they want to minimize pain. If a patient is lucid, they want to talk, joke, encourage a good mood. But at the bottom of it all is: keep the patient alive.

Quote:
Originally Posted by Broomstick View Post
...Perhaps I should note that that six month stretch occurred 30+ years ago. It wouldn't surprise me if some changes have been made in procedures since then.
Technology marches ever forward. I'd be shocked if significant (not just "some") changes haven't been made since then.

Quote:
Originally Posted by Broomstick View Post
...But to answer your question – mom never had the hole-in-the-trachea thing, just the tube down the throat...
I do not speak from experience, but I have been told by numerous nurses and staff that this is very unpleasant (the constant gag-reflex thing).



** Well, obviously, yes it did, in the sense that the possible causes were immediately investigated. But even more immediately, was treating the immediate symptom.

Last edited by purplehorseshoe; 09-11-2012 at 02:14 PM.
#14
Old 09-11-2012, 02:46 PM
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Thanks for your reply outlierrn, but I'm really just interested in reading first hand accounts. I've already spoken to some medical professionals about this, and the purpose of this thread was to get responses from patients who have actually gone through this process.

Jesus, it was so difficult to type that I think I strained a muscle.
#15
Old 09-11-2012, 04:03 PM
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I have some semi-conscious memories and some extremely conscious ones, but now I feel a little intimidated that I'll be publicly chided for saying the wrong thing accidentally.

I hope all works well for you, Broomstick.
#16
Old 09-11-2012, 04:29 PM
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Originally Posted by SecretaryofEvil View Post
Thanks for your reply outlierrn, but I'm really just interested in reading first hand accounts. I've already spoken to some medical professionals about this, and the purpose of this thread was to get responses from patients who have actually gone through this process.

Jesus, it was so difficult to type that I think I strained a muscle.
Uh-oh. Looks like we'll have to intubate you.
#17
Old 09-11-2012, 04:38 PM
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O
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Originally Posted by Broomstick View Post
I'm sorry, but this is probably going to come across as very angry, but NO, that is exactly NOT what I want
Opal?
#18
Old 09-11-2012, 05:23 PM
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Originally Posted by Fiveroptic View Post
I have some semi-conscious memories and some extremely conscious ones, but now I feel a little intimidated that I'll be publicly chided for saying the wrong thing accidentally.
If it's a first hand account it can't be wrong in this thread.
#19
Old 09-11-2012, 10:32 PM
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Well, being a health care professional and as such, clearly a liar and all, I'm sure my experience counts for absolutely nothing, so I'll leave you with this:

If you ever MUST be on a ventilator, you'll be grateful as hell that such a thing exists at all.* Most life-saving procedures are painful, uncomfortable at best. Some patients do better with them than others--and NOBODY has any way of knowing which will be which prior to the intubation. Rather than getting nasty about Versed and other things like it, be glad such things exist. I was an ICU nurse before Versed was even available. I've had to paralyze patients to maintain their LIFE SUPPORT back in those days.

As purplehorseshoe said so well, it's all about KEEPING THE PT ALIVE. If you'd rather drift in a cloud or no pain/being comfortably numb, perhaps you need to make those wishes known. IOW, there is nothing anyone can truly say to eradicate your fear of being intubated--you may not react to it the same way your mother did. May you never need it.

*Which doesn't mean you won't fight it, much like everyone else does. It's instinctual to not want something crammed down your throat. Tracheostomy tubes are much more comfortable (usually called trachs), but they are also only done for people who need longer term vent support. Trachs are invasive and come with their own risks.

And it all comes down to risk: the risk of discomfort and even pain is worth the saving of a life.

Last edited by eleanorigby; 09-11-2012 at 10:33 PM. Reason: forgotten words and typos
#20
Old 09-11-2012, 11:10 PM
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Originally Posted by Broomstick View Post
If it's a first hand account it can't be wrong in this thread.
You'd think, huh?
#21
Old 09-12-2012, 06:12 AM
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Originally Posted by eleanorigby View Post
If you ever MUST be on a ventilator, you'll be grateful as hell that such a thing exists at all.*
Really? My mother said she would have preferred death. Then she had legal documents drawn up to make it official.

I realize that medical people are trained to prefer life saving above all other things, but not everyone agrees. Mom sure didn't. She was very explicit. Her last couple months we had to battle one or two arrogant, "you'll be grateful as hell!" types who thought she was just kidding about the "do not intubate" thing.

You're doing what a LOT of medical people do - justifying the procedure at all costs. The other thing they do is reassure that it's not that bad. Well, for mom it WAS that bad and no, she didn't think it was worth it.

Now, if another patient says he or she felt it was worth it/not that bad/whatever that I find much, much easier to accept.
#22
Old 09-12-2012, 06:20 AM
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Originally Posted by Broomstick View Post
You're doing what a LOT of medical people do - justifying the procedure at all costs. The other thing they do is reassure that it's not that bad. Well, for mom it WAS that bad and no, she didn't think it was worth it.

Now, if another patient says he or she felt it was worth it/not that bad/whatever that I find much, much easier to accept.
I actually doubt that there is going to be anything that anyone can say that will make you come down from this over-the-top reaction you're having to people giving their experiences. It sounds like your mom's death was very traumatic for you and I'm sorry, but you're being pretty jerky to people in this thread.

FTR, I have been intubated a few times and barely remember it. I am grateful it was performed on me.

Last edited by lorene; 09-12-2012 at 06:21 AM.
#23
Old 09-12-2012, 06:33 AM
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Originally Posted by Broomstick View Post
I realize that medical people are trained to prefer life saving above all other things, but not everyone agrees.
Yep. I know a couple of individuals who are in the process of dying after deciding to forego medical intervention. Dying is easy compared with dealing with MDs insisting that you are making a horribly wrong decision.
#24
Old 09-12-2012, 08:00 AM
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Originally Posted by lorene View Post
I actually doubt that there is going to be anything that anyone can say that will make you come down from this over-the-top reaction you're having to people giving their experiences. It sounds like your mom's death was very traumatic for you and I'm sorry, but you're being pretty jerky to people in this thread.
Two points:

1) I'm not having an "over the top reaction" to peoples' EXPERIENCES. I'm angry at medical professionals who, in a thread where from the very first post I have made it clear I want FIRST HAND ACCOUNTS, have barged in and either glossed over any possible suffering, or told me and mine we should be "grateful" for something we're either not sure is worth it, or, in the case of my mother, thought a fate worse than actual death. I do not want to hear third parties here, I want to hear from PATIENTS who directly experienced being on a ventilator. The only people I'm being a "jerk" to are third parties who automatically assume that for the purposes of this thread their professional experience administering a procedure trumps the experience of receiving it. I half expect them to pat me on the head, tut "there, there", and tell me not to worry, I just don't have the intellect to understand.

Again, I want FIRST HAND ACCOUNTS. The objective medical stuff I can look up on line on my own, or ask my sister the doctor. In this case yes, the subjective is what is more important, hence it's location in IMHO rather than general questions.

2) I actually did not find my mother's death traumatic. It was very sad, of course, but not traumatic. What was traumatic was THIRTY YEARS BEFORE THAT when she spent months in an ICU in very clear mental as well as physical distress.

Otherwise, lorene, thank you for relating that you felt your experience was worth the trouble and that you barely remember it. More and more it seems that the usual experience is to not recall being on one. This is reassuring to me from the perspective that, should I ever be unfortunate enough to require a respirator, I likely wouldn't remember the experience. Of course, that does jack for how my loved ones might experience it from the bedside but I might well have to make it clear to them that while they might object to such a machine (and some of them are quite clear on that - my dad also has a legally valid "do not intubate" document not because of his health (it's fine for his age) but because of what his wife experienced) I might well not and may even be in favor of such a measure. Due to what my mother experienced my family's kneejerk reaction tends to be "better dead than on a breathing machine". If I decide otherwise I'm going to have to make sure they understand that very clearly or, if I'm incapacitated, they might well decide to let me die rather than be hooked up to one even if my chances of survival are pretty good for undergoing the procedure. I'm not going to convince them unless I can convince myself, first.

You know, if folks have already decided this for themselves I'm happy for them. I'm not so sure. Hence, I wanted to know what it's like from the patients' viewpoint.
#25
Old 09-12-2012, 09:01 AM
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Originally Posted by Broomstick View Post
1) I'm not having an "over the top reaction" to peoples' EXPERIENCES. I'm angry at medical professionals who, in a thread where from the very first post I have made it clear I want FIRST HAND ACCOUNTS, have barged in and either glossed over any possible suffering, or told me and mine we should be "grateful" for something we're either not sure is worth it, or, in the case of my mother, thought a fate worse than actual death. I do not want to hear third parties here, I want to hear from PATIENTS who directly experienced being on a ventilator. The only people I'm being a "jerk" to are third parties who automatically assume that for the purposes of this thread their professional experience administering a procedure trumps the experience of receiving it. I half expect them to pat me on the head, tut "there, there", and tell me not to worry, I just don't have the intellect to understand.

Again, I want FIRST HAND ACCOUNTS. The objective medical stuff I can look up on line on my own, or ask my sister the doctor. In this case yes, the subjective is what is more important, hence it's location in IMHO rather than general questions.
OK, but the thing is, your OP didn't make clear that you only wanted firsthand experiences. You asked, "What's it like from the patient's perspective?" and outlierrn answered both as someone who has been intubated and as someone who has observed and assessed patients. Your OP didn't say, "No medical professionals or family members allowed to state what they think or have been told or have observed." And nowhere in outlierrn's posts does it say that s/he feels professional observation is to be trusted more than personal experience. Purplehorseshoe answered from the point of view of someone other than the patient and you didn't jump all over her.

If you asked, "What's first grade like from a little boy's perspective?" I could tell you what my son has told me and what I've observed. That doesn't make me a jerk for contributing to the conversation even though I'm not a first grade boy.
#26
Old 09-12-2012, 09:37 AM
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Originally Posted by Broomstick View Post
I realize that medical people are trained to prefer life saving above all other things, but not everyone agrees.
Are they really? That hasn't been my experience.
#27
Old 09-12-2012, 10:12 AM
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Originally Posted by Broomstick View Post
from the very first post I have made it clear I want FIRST HAND ACCOUNTS
As pointed out, no, you hadn't made this clear at all.

Quote:
I half expect them to pat me on the head, tut "there, there", and tell me not to worry, I just don't have the intellect to understand.
No, you're hearing a ton of crazy stuff that isn't being said, and acting like a huge jerk in response. This is obviously a very emotional and loaded issue for you, and you're acting irrationally and treating innocent bystanders like crap.
#28
Old 09-12-2012, 12:18 PM
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You're not the only one reading the thread. Maybe some of us would like to hear what medically trained people have to say about this subject? If you don't want to then you're free to skip over their posts.
#29
Old 09-12-2012, 04:26 PM
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You're not the only one reading the thread. Maybe some of us would like to hear what medically trained people have to say about this subject? If you don't want to then you're free to skip over their posts.
I'd like to hear some of these accounts, please nobody feel intimidated to post their stories out of fear of Broomstick's wrath. The rest of us are listening.
#30
Old 09-12-2012, 04:33 PM
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Originally Posted by Broomstick View Post
Due to medical threads in the past talking about someone being on a ventilator or respirator I've become curious. For example, in this thread about purplehorseshoe's husband she talks about him being on a ventilator and conscious, communicating with those around him.

What is this like from the patient's perspective? I can't imagine it's comfortable having a tube going down your throat into your lungs (well, the upper part of your bronchial tube). How do you keep from gagging? Or do you gag? Do you get used to it or is it just this horribly uncomfortable thing the whole time?

I can't imagine it's a wonderful thing to have something forcing air into you, either.

What about the tracheotomy/ventilator combo? Is there pain from the hole in the throat? More discomfort? Less?

Anything I forgot to ask about?
These are all of the questions that you asked in your original post. I, along with apparently a handful of others in this thread, could easily answer some of these questions from our professional experience, because sometimes (!) patients talk to us. Sometimes they are able to share their experience and it increases the understanding of the caregiver on the other side. There is a range of responses to each of these questions. I could share some answers with you, even some that haven't already been said so far.

I could share information that could answer many of your personal concerns in subsequent posts.

I don't dare contribute any useful information without your permission.
#31
Old 09-12-2012, 04:35 PM
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I can't imagine how the OP title went into my brain and came out again as "vibrator/resuscitator".
#32
Old 09-12-2012, 07:16 PM
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Really? My mother said she would have preferred death. Then she had legal documents drawn up to make it official.

I realize that medical people are trained to prefer life saving above all other things, but not everyone agrees. Mom sure didn't. She was very explicit. Her last couple months we had to battle one or two arrogant, "you'll be grateful as hell!" types who thought she was just kidding about the "do not intubate" thing.

You're doing what a LOT of medical people do - justifying the procedure at all costs. The other thing they do is reassure that it's not that bad. Well, for mom it WAS that bad and no, she didn't think it was worth it.

Now, if another patient says he or she felt it was worth it/not that bad/whatever that I find much, much easier to accept.
Oh, you won't be catching me with that Gotcha! I am a firm advocate for advanced directives and avoiding futile care--MOST nurses are, seeing as how we see, up close and personal, how horrible "life support" can be. I have witnessed many, many DNR/DNI orders with referral to hospice in my 2 decades of ICU experience. I no longer work in critical care, so perhaps all these arrogant liars just started working. You know those health care workers--always looking to screw you over or kill you, except when you want to die, and then we try to save you. We're assholes that way.

If you drop RIGHT THIS MINUTE, you would be grateful for resuscitation efforts, including intubation. I was (and am) assuming that you are a fairly healthy individual for whom life is worth living (however you may define that). If this is not the case, communication is key. And even then, I've had hospice patients rescind their documented wishes; I've had patients have successful surgery (life saving)and they've gone on to enjoy what time they had left etc. IOW, it's a case by case kind of thing. So, yes, EVEN IF you have papers insisting on letting you die, if the HCPs involved think they can save you, they will try to help you understand their reasoning. And then if you still want to die, so be it. It's called informed consent, death being at least somewhat permanent, these tricky days.

As for "justifying the procedure at all costs"--you're a loon. Thing is, the overwhelming majority of Americans have NOT discussed end of life issues with their loved ones or their doctors/HCPs. The default in American health care today is CODE EVERYONE. If you'd like to see that change, we need you to get a bit more involved in your health and in your care. Plus, changing the default to something else is an ethical mindfield--not that having it the default is an ethical easy street. And lastly, Americans are one of the most litigious societies around--there is no "winning". Either we are sued for "letting" mom die or sued for trying to prevent it.

Last edited by eleanorigby; 09-12-2012 at 07:17 PM. Reason: realized with whom I was arguing
#33
Old 09-12-2012, 09:04 PM
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Originally Posted by spinky View Post
This is obviously a very emotional and loaded issue for you, and you're acting irrationally and treating innocent bystanders like crap.
Yes, it is emotionally loaded and that's why I tried to explain why it is so, due to some horrible experiences my family had to go through. I know I'm not entirely rational about the whole thing, but there are reasons why I am still so pissed off about the events of the past.

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Originally Posted by Kerrigan View Post
These are all of the questions that you asked in your original post. I, along with apparently a handful of others in this thread, could easily answer some of these questions from our professional experience, because sometimes (!) patients talk to us. Sometimes they are able to share their experience and it increases the understanding of the caregiver on the other side. There is a range of responses to each of these questions. I could share some answers with you, even some that haven't already been said so far.

I could share information that could answer many of your personal concerns in subsequent posts.

I don't dare contribute any useful information without your permission.
If you are actually telling me what your patients have said, sure, I'd like to hear it. What I don't want to hear is yet another doctor saying “oh, it's not that bad, they don't remember it, they're all grateful afterwards”. My background level of distrust of the medical profession goes back to the days I was a very young child being told “this won't hurt” when, in fact, it did. Do they ALL do that? No – in fact, I had great respect for a surgeon who once worked on me who was very upfront about was and wasn't going to hurt and didn't sugar-coat any experiences for me. The fact he himself had had a great number of surgeries and medical procedures himself I think contributed to his honesty. Unfortunately, most of my experience with medicine has been such that as soon as someone says “this won't hurt” I assume there is lying going on.

So, yes, if you have accounts from patients go ahead, I'd like to hear them. Apparently some others would, too.

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Originally Posted by eleanorigby View Post
Oh, you won't be catching me with that Gotcha! I am a firm advocate for advanced directives and avoiding futile care--MOST nurses are, seeing as how we see, up close and personal, how horrible "life support" can be.
Good for you.

Now, go tell that jackass doctor who, upon hearing we wanted to transfer mom to hospice immediatley accused us of wanting mom to die and more or less killing her.

Now, go tell that bitch of a nurse who, when my dad had severe pneumonia but was, with his diminishing strength, STILL refusing to go on a ventilator, said that if we didn't force dad to change his mind we were as good as holding a pillow over his head and suffocating him. (I will, however, say that the pulmonologists involved, who had known my dad for quite some time and had heard his wishes prior to his illness, pretty much said “we recommend this, but it's your choice” and let dad and the family deal with it.)

Quote:
If you drop RIGHT THIS MINUTE, you would be grateful for resuscitation efforts, including intubation.
If I stop breathing for more than five minutes no, please don't resuscitate me. I don't want to live my remaining years a vegetable, thank you very much.

I don't want life at any cost, I want life that is meaningful to me. If I can't recover to the point of having what I consider a meaningful life I won't thank you, please let me die instead.

I'd only want it if there is a realistic chance of recovery to a level of function where my mind works and I can still interact with the world.

Quote:
And even then, I've had hospice patients rescind their documented wishes; I've had patients have successful surgery (life saving)and they've gone on to enjoy what time they had left etc. IOW, it's a case by case kind of thing.
Well, yes, the patient is allowed to change his/her mind. I don't object to someone saying “Is this still what you want?” or “There is a 90% chance of recovery if we do this – are you still firm in your decision?”

What I object to is when someone who is supposed to be a professional accuses me and mine of murder for transferring mom to a hospice, which did, in fact, happen.

Quote:
As for "justifying the procedure at all costs"--you're a loon. Thing is, the overwhelming majority of Americans have NOT discussed end of life issues with their loved ones or their doctors/HCPs. The default in American health care today is CODE EVERYONE. If you'd like to see that change, we need you to get a bit more involved in your health and in your care.
While that might apply to the average person, my mother had legal documents drawn up stating her wishes in no uncertain terms decades prior to her death and carried them with her at all times. Ditto for my dad, and the other members of my immediate family. We actually have had these discussion in my family, only to have medical types attempt to run roughshod over our stated desires. Not all of them, to be sure, but enough to be annoying as hell, especially as it invariably occurs during a time of high stress and emotion.
#34
Old 09-12-2012, 09:23 PM
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If it wasn't all the medical types that ran roughshod over your family, then perhaps you shouldn't paint medical professionals with such an insulting broad brush, especially since there are med professionals right here in this thread that you have no beef with.
#35
Old 09-12-2012, 09:51 PM
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Sweetums, I wouldn't want to give you any resuscitative efforts at all, but I would, IF you had not made your DNR status clear to your primary care physician with an order on your chart indicating the same, and if I were on duty when you crashed. I want none of your gratitude--that is yours and yours alone.

I'm not going to apologize for the supposed belligerent treatment you received, because you are so over the top with your responses here that I tend to doubt your claims. Extreme statements and frothing at the mouth (about something 30 years ago, no less) in response to genuinely well-meant responses don't deserve such a courtesy.

I will say this: we are all people, even doctors and nurses. We come with our own issues and frailties, even on the job. That's not an excuse, just an explanation. You seem to think that we consider critically ill people and life support as just routine (when we're not trying to justify it all, of course, or berate families and patients as part of our daily round). It is not. Burn out rates are high in critical care, due to intertwined, complex issues, but one of them is watching a very large number of people die, most of them only after being tormented by modern health care. We can save thousands of lives, but there aren't many HCPs who consider "do everything, always" the absolute correct answer for every patient.

I'll leave this for other HCPs to talk to the brick wall.
#36
Old 09-13-2012, 06:40 AM
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Burn out rates are high in critical care, due to intertwined, complex issues, but one of them is watching a very large number of people die, most of them only after being tormented by modern health care.
^ This, to me, is an indication there is something VERY wrong with the system, if the result is a large number of people subjected to "torment" prior to death and the people caring for them jumping ship in equally large numbers. But hey, don't criticize any of it, because that's "over the top".

Don't know about you, but I was raised to think torturing dying people is fundamentally wrong. Maybe that's a reason I didn't go into medicine. If that's routinely occurring - that is what you said, isn't it? - then something desperately needs to change.
#37
Old 09-13-2012, 07:49 AM
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Quote:
Originally Posted by Broomstick
I realize that medical people are trained to prefer life saving above all other things, but not everyone agrees.
Are they really? That hasn't been my experience.
No, we're not. And we younger ones, especially, are not. I can't speak to Medical School, but Nursing School today is constantly bringing up the concept that we're here to help our patients get the treatment they want, not the treatment we might want. This may have been different in the past, but that's how it is now - I graduated in 2011.

The question about "DNR?" is on page ONE of all Medicare Assessment forms - not because Medicare has death panels, but because we've learned that not everyone wants to be intubated (as well as other stuff). Conversely, not everyone wants to be left alone to die.

Since we're licensed by the state to save lives, that's our default LEGAL position. My default professional, moral and ethical position is to try everything I can to find out what the patient actually wants and to do that. My default personal position is that I wish assisted suicide were legal, because I'd be a Death Angel nurse, and if I'm incapable of communicating and not likely to get better in two months, let me go. But my default legal position is that if I don't know what the patient wants, if the patient won't tell me (and a lot of people won't, even when you ask them point blank, they make a bitterface and wave their hands a lot and refuse to answer with words or sign any papers) I have to do all the reasonable things to save the patient, or I will lose my license for malpractice. Because, let's face it, if you want to be saved and I can and I don't, that would be malpractice.

I've got overwhelmingly more patients who want Full Code than who don't. Given some of their health conditions and quality of life, I think they're f'ing nuts, but if they drop in front of me, I'll call a code and start CPR and direct the paramedic to intubate as soon as they get there.

Because the numbers are so very skewed in favor of intubation and people keep choosing to be "tortured", I think that's the best default position to take, even though I'm in the minority with my own wishes.

So please, if you have an opinion, fill out the damn forms. Even if what you want done is "everything", fill out the damn forms so we can stop talking about it. Give a copy to your lawyer, one to your doctor and one to the person who has your Power of Attorney for Healthcare. Bring one to the hospital when you come. Keep one in your home for your visiting nurse (me.) If it's very important to you, get a Medic Alert bracelet with DNR or FULL CODE or COMPRESSIONS ONLY or whatever you want on it. We can't do what you want until you let us know what you want.

http://aarp.org/relationships/ca..._attorney.html
#38
Old 09-13-2012, 08:00 AM
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2) I actually did not find my mother's death traumatic. It was very sad, of course, but not traumatic. What was traumatic was THIRTY YEARS BEFORE THAT when she spent months in an ICU in very clear mental as well as physical distress.

<snip>

my dad also has a legally valid "do not intubate" document not because of his health (it's fine for his age) but because of what his wife experienced) I might well not and may even be in favor of such a measure. Due to what my mother experienced my family's kneejerk reaction tends to be "better dead than on a breathing machine".
I really don't get this. She got an extra 30 years and the lesson you all took away was: "we should have pulled the plug"?
#39
Old 09-13-2012, 08:33 AM
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No, we're not. And we younger ones, especially, are not. I can't speak to Medical School, but Nursing School today is constantly bringing up the concept that we're here to help our patients get the treatment they want, not the treatment we might want. This may have been different in the past, but that's how it is now - I graduated in 2011.

The question about "DNR?" is on page ONE of all Medicare Assessment forms - not because Medicare has death panels, but because we've learned that not everyone wants to be intubated (as well as other stuff). Conversely, not everyone wants to be left alone to die.

Since we're licensed by the state to save lives, that's our default LEGAL position. My default professional, moral and ethical position is to try everything I can to find out what the patient actually wants and to do that. My default personal position is that I wish assisted suicide were legal, because I'd be a Death Angel nurse, and if I'm incapable of communicating and not likely to get better in two months, let me go. But my default legal position is that if I don't know what the patient wants, if the patient won't tell me (and a lot of people won't, even when you ask them point blank, they make a bitterface and wave their hands a lot and refuse to answer with words or sign any papers) I have to do all the reasonable things to save the patient, or I will lose my license for malpractice. Because, let's face it, if you want to be saved and I can and I don't, that would be malpractice.

I've got overwhelmingly more patients who want Full Code than who don't. Given some of their health conditions and quality of life, I think they're f'ing nuts, but if they drop in front of me, I'll call a code and start CPR and direct the paramedic to intubate as soon as they get there.

Because the numbers are so very skewed in favor of intubation and people keep choosing to be "tortured", I think that's the best default position to take, even though I'm in the minority with my own wishes.

So please, if you have an opinion, fill out the damn forms. Even if what you want done is "everything", fill out the damn forms so we can stop talking about it. Give a copy to your lawyer, one to your doctor and one to the person who has your Power of Attorney for Healthcare. Bring one to the hospital when you come. Keep one in your home for your visiting nurse (me.) If it's very important to you, get a Medic Alert bracelet with DNR or FULL CODE or COMPRESSIONS ONLY or whatever you want on it. We can't do what you want until you let us know what you want.

http://aarp.org/relationships/ca..._attorney.html
This is an excellent, excellent post. I kept looking for parts to snip so that I could make my own response briefer, but it's all relevant to this discussion.

People do change their minds, too. The will to live is pretty strong and with it, sometimes the will to deny that medical care can't restore previously enjoyed health in many situations. Many people who fall to "Do anything and everything you can to save me" aren't necessarily looking at what their quality of life will be like post-heroic measures.

It is very important to get people thinking about Advanced Directives, even---or perhaps especially---young and healthy people. Things can happen in an instant to jeaopardize that health. I think a lot of people fear that by signing something like a healthcare proxy, they are giving away their control to make medical decisions when in fact, it's just the opposite. They're guaranteeing that someone who has had conversations with them about what decisions they want made can assert those wishes.
#40
Old 09-13-2012, 08:57 AM
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I really don't get this. She got an extra 30 years and the lesson you all took away was: "we should have pulled the plug"?
Yes but she was very cranky for most of those 30 years.
#41
Old 09-13-2012, 09:25 AM
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I really don't get this. She got an extra 30 years and the lesson you all took away was: "we should have pulled the plug"?
I was confused by this as well. Broomstick must have really hated her Mom to have this much anger over her being given an extra 30 years.
#42
Old 09-13-2012, 10:39 AM
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A lot has changed in 30 years.

FYI, the back of your throat that is stimulated by the gag reflex is well above the vocal cords. You might gag while being intubated, but once the tube was down that sensation would diminish greatly. There would be some discomfort until you got used to it. I’ve awakened intubated after surgery and it felt odd, kind of like breathing through a big straw. I did NOT like being unable to speak. My throat was a little sore when they took the ET tube out and I was hoarse for a few days, but otherwise suffered no ill effects.

Back when I was a therapist (about 15 years ago) common practice was to routinely squirt saline down endotracheal tubes to suction patients and I thought it was horrible. I know how it feels when you drink water and it goes down the wrong way and we had to do that to our patients several times a day. The literature that I’m reading now has mixed results about whether or not it helps loosen secretions. If I had any objection to being on a vent, it would be related to being suctioned or being on it long term.

Pulmonologists and respiratory therapists will set the ventilator to meet your body’s needs. If you’re totally out of it and can’t make any ventilatory efforts on your own, the machine will breathe for you. If you start “fighting” the ventilator, the respiratory therapists have pressure alarms set to alert them so that they will know your breathing status has changed. They will know immediately that they need to do something else for you.

The current trend with ventilated patients is to wean and extubate them as soon as possible to avoid ventilator associated pneumonia. The Institute for Healthcare Improvement (IHI) recommends a “Sedation Vacation” (decreasing sedatives to the lowest effective dosage so the patient can be alert enough to breathe on their own) and doing a daily assessment to see if the patient can come off the vent. Some hospitals have progressed to where they allow their ventilator patients to get up and walk so that they can build up their strength.

With Medicare patients and with some insurance reimbursement plans, a hospital gets paid a lump sum based on your diagnosis. It’s in their best interest (and yours) to get you well quickly, without complications or unnecessary procedures and for you not to be readmitted. They definitely don’t want you to die there because it would have a negative impact on their mortality statistics. They would be highly motivated to refer you to Palliative Care or Hospice if they thought you were terminal.

Everybody should have an End of Life discussion with their loved ones and make sure the proper documentation is in place.

Last edited by Bass Chick; 09-13-2012 at 10:40 AM.
#43
Old 09-13-2012, 10:52 AM
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Everybody should have an End of Life discussion with their loved ones and make sure the proper documentation is in place.
And people should also know that your Power of Attorney for Healthcare need not be one of your loved ones. In some cases, it's a whole lot easier for everyone if they're not. If you've got two kids who don't agree much, find someone else. If your family is uncomfortable with these discussions, find someone else. If you feel guilty, or they'd feel guilty, asking them to take on such a responsibility during their time of worry and fear while you're sick, find someone else. It can be an actual attorney, it can be a friend or coworker or priest (but it cannot be your doctor). It need not be a family member. If you have no one at all, then work on a clear and comprehensive Living Will and forget the PoA entirely.
#44
Old 09-13-2012, 11:27 AM
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. . .Everybody should have an End of Life discussion with their loved ones and make sure the proper documentation is in place.
I for one plan to meet with the Death Panels as soon as they're established!

Are we starting to get away from the OP???
#45
Old 09-13-2012, 11:48 AM
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^ This, to me, is an indication there is something VERY wrong with the system, if the result is a large number of people subjected to "torment" prior to death and the people caring for them jumping ship in equally large numbers. But hey, don't criticize any of it, because that's "over the top".

Don't know about you, but I was raised to think torturing dying people is fundamentally wrong. Maybe that's a reason I didn't go into medicine. If that's routinely occurring - that is what you said, isn't it? - then something desperately needs to change.
This is ridiculous. You are not willing to have an honest discussion about this, no matter that you started this thread. Yes, SOME patients are what I would consider tormented by modern health care. USUALLY, they are the very ones who REFUSE to acknowledge their own mortality, REFUSE to be compliant with their medical regimes and REFUSE to communicate effectively with their HCPs.

Much of modern medicine is physically painful, although much less painful than historically. Nurses (and doctors) can only do so much and sometimes are "so much" is woefully inadequate. This is a bald fact of being human. NOTHING will change that. I deplore your attitude of "something is terribly wrong! It must change!"

Change what? How? Who? You cannot change the fact that people die, that mothers die, that sometimes people die in pain, that others witness this event. You also cannot change that people are affected by other people's pain and death.

There are things "wrong" with modern healthcare--and that's another thread, entirely--but I'll take modern healthcare over the alternatives: no healthcare or past healthcare aka torture, then death.

What I was trying to get at with my use of the word torment, is that it can be very difficult to witness an alert person, on a ventilator, unable to rest, clearly uncomfortable and who cannot make his or her wishes known due to stroke, sedation, no English, whatever. Here's what you missed, in your rush to condemn the system and the people in it: HCPs do everything they can to overcome those obstacles and make the patient more comfortable, within the limits that those life support systems impose. Being part of other people's pain is only one small part of the myriad reasons why nurses burn out.

You, as a by-stander, may feel that the nurses and docs are being complete assholes to your mother; your mother may have resented being helpless and vulnerable and in pain during her hospitalization as well. And for all I know, she might have had a nurse or two who was callous or uncaring; doctors can be abrasive as well, depending. But as has been said, she gained 30 years from it. We were supposed to just fluff her pillows and let her die? WTF? But I know that not all her nurses were uncaring, not all her doctors were dicks. The very law of averages dictates that the majority of them were concerned, caring professionals.

YOUR emotional issues (and your mother's) are a different kettle of fish. Perhaps her illness and treatment didn't match her expectations. Perhaps (as is true for most people) she had chronic anger and resentment for being sick at all. Or maybe she was just a bitch and you have a toxic family. (what? nasty people get sick, too). I don't know. IT DOESN'T MATTER.

From the HCP perspective, a person crashing is a person crashing, no matter their race, gender, sexual orientation, general nastiness or taste in clothing, UNLESS there is direct, clear communication that they do not want rescuing from crashing. THEN we'll fluff your pillows and let you die, whilst giving you morphine and some privacy. God, we're such horrible people, no wonder we have earned your contempt and disgust.
#46
Old 09-13-2012, 11:56 AM
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Originally Posted by Earl Snake-Hips Tucker View Post
I for one plan to meet with the Death Panels as soon as they're established!

Are we starting to get away from the OP???
Did you not see the four complete paragraphs in my response that dealt entirely with respiratory and ventilator issues?


Edited to add:
And threads can and do evolve from the OP. It's called having a conversation.

Last edited by Bass Chick; 09-13-2012 at 12:00 PM.
#47
Old 09-13-2012, 06:59 PM
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Join Date: Jul 1999
Location: SEC
Posts: 13,875
Whew! Feelin' a little touchy there!

Quote:
Originally Posted by Bass Chick View Post
Did you not see the four complete paragraphs in my response that dealt entirely with respiratory and ventilator issues?
I saw it.
Quote:

Edited to add:
And threads can and do evolve from the OP. It's called having a conversation.
Aha! Now that I missed! Thanks!

But I still don't have any personal ventilator stories.
#48
Old 09-13-2012, 07:03 PM
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Join Date: Feb 2006
Location: London, UK
Posts: 2,450
Quote:
Originally Posted by Earl Snake-Hips Tucker View Post

But I still don't have any personal ventilator stories.
*draws syringe of propafol*

Shhhhh....
#49
Old 09-13-2012, 10:37 PM
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Join Date: Mar 2001
Location: NW Indiana
Posts: 26,798
Quote:
Originally Posted by Bob Ducca View Post
I was confused by this as well. Broomstick must have really hated her Mom to have this much anger over her being given an extra 30 years.
No, it was my mother who was angry and resentful for those 30 years.

Sure, she survived and became well enough to leave the hospital but she never regained the health she had before. There's a tendency in the media and in our society to think oh, the person had the lifesaving surgery/procedure/medicine/whatever and everything is all happy now but that's not how it is sometimes. My mother was never the same, and acutely aware that she wasn't the same and never would be again. That was the reason she went from the hospital to see a lawyer to make her future wishes explicit. Something that I agree everyone should do.

Those 30 years were years of disability, declining health, and gradually increasing invalidism. They weren't wholly without happy times but the fact is that both physically and financially her lack of health was a burden on the entire family. When she finally died there was as much relief as grief

Sure, she got another 30 years - 30 years of lingering, suffering, and to be honest, the last 10 of them she wasn't much of a mother or parent or wife. She was a dependent.

Not that I expect you to understand, Mr. Ducca, as you've never struck me as being empathic. eleanorigby, though - although we have different positions on this issue I'm pretty sure she's seen people who, although they survived, experienced greatly diminished quality of life, to the point where it becomes a question of whether or not survival was worth it. My mom went through a horrific experience and retroactively decided that it wasn't worth it, she would have preferred death to what she went through (which included, mind you, waking up during open heart surgery which has to rate pretty damn high on the "major league suck" meter). Well, it was done, she was alive, and no longer in pain but she decided that she just wouldn't risk anything like that again. So she made sure. Good for her.
#50
Old 09-13-2012, 10:56 PM
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Join Date: Jun 2009
Location: Texas, USA
Posts: 9,457
Well, plenty of people experience a multi-decade decline into "disability, declining health, and gradually increasing invalidism" without having so much as been in the same room as a ventilator or respirator. Whether or not "survival [is] worth it" changes wildly from person to person and - this might sound cold - is very different from the POV of an observer standing bedside, and the POV of the patient himself/herself.

That said: Broomstick, I'm curious about the part where you said your mom "was angry and resentful for those 30 years." Who or what was she angry/resentful at? At the HCPs who kept her alive for those extra decades? At the treatment she was receiving, for being painful/uncomfortable? At the ventilator/respirator itself?
Ok, typing that, I realize I'm asking you to speak on behalf of someone who's no longer here, which isn't really quite fair, but I really did wonder what you meant by that part.
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