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.
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.
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.
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???
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.
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.
Whew! Feelin’ a little touchy there!
I saw it.
Aha! Now that I missed! Thanks!
But I still don’t have any personal ventilator stories.:o
draws syringe of propafol
Shhhhh…
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.
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.
Just a few points–I have lots more to say, but I don’t think it’ll be useful in this conversation.
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I have seen patients on completely opposite ends of the ventilator experience spectrum. Some patients can never be left unsedated for more than a couple of minutes with a breathing tube in, because they become so panicked that they cannot be reasoned with to stay still and let the machine breathe for them. In those cases, they’re sedated, obviously, until the tube can come out. We don’t prefer this–we’d like to let someone wake up and make sure they’re breathing well–but as has been pointed out we would rather get someone off the vent sooner. On the other hand, I have cared for patients who were able to calmly keep their tube in, unrestrained, unsedated, wide awake and interacting with their visitors and staff. I have seen everything in between. In general, people don’t like to be very awake with a breathing tube in, so we sedate them moderately except for 1-2 times a day when we turn it off to see how they’re doing and see if they’re ready to come off.
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In most of the instances where the life support of the ventilator is perceived as “torture,” at least by the HCPs, it is the family members who insist upon continuing, and the patient is unable to communicate their desires (usually because of a variation on coma, not because of the tube). As a nurse, I have initiated many conversations to try and avoid the prolongation of death in a futile case. If the health care team perceives that there is no benefit to prolonged ventilation, it will usually be communicated to the family–if not by one of the doctors, by a nurse. If there is a perceived benefit, then by all means we’re for it. That’s what we do.
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Some doctors lie because doctors are all people. So are all HCPs. Some people suck. For the most part, though, it’s not so much that. All the doctors and health care providers who aren’t dirty rotten liars are people with feelings who generally want the best for their patients. Thanks.
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I was going to say this before, and now it’s already been said, but I will echo: Things have changed in medicine a lot in 30 years.
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The default is for full resuscitation because that’s what people want in general. The technology is available and until someone has experienced critical illness, they generally want it used. That’s not something that needs to change from a practice standpoint–that’s something that people can affect through legal documentation, thinking about what they want their future to look like, and telling their family.
That’s more than I meant to say.
Understood, and getting a better perspective was why I started this thread even if I bungled quite a bit due to lingering issues of my own.
BTW, Bass Chick, thanks for your contribution. I didn’t know that once past the gag reflex area the gagging bit diminished. I would have thought the gagging was continual and unrelenting but you say it isn’t.
I think quite a bit of it can be summed up as untreated post traumatic stress disorder. Part of that was her memory of waking up in the operating room with her chest split open and the doctors cutting on her which was first doubted and then minimized. I think the medical folks didn’t really want to face up to something that horrific happening, at least not at first, and minimized and dismissed it. Really, though HER perception of things being unpleasant, painful, or intolerable was largely dismissed throughout the entire episode, leading her to conclude that the whole thing hadn’t been worth it. What she said while she lying in that hospital bed was frequently ignored, and if she couldn’t get the family to advocate for her (which we did when we were aware of a problem) her perception was that if she complained at all the doctors just drugged her to the point she couldn’t protest anymore, although she still retained awareness of her situation. That was her side of the story. As I was a minor my ability to get the other side was significantly hampered so I don’t know the doctor’s side of the story.
So she was pissed off at the operating team that was working on her when she woke up - probably understandable whether or not you think it was rational. She was pissed off at the doctors and nurses who minimized the trauma she suffered from that, who poo-poo’ed statements she was in pain or uncomfortable or who, after she complained, did something that rendered her unable to communicate. She was pissed off at her uncooperative body. There was considerable guilt and worry that kicked in when she found out her heart disease was hereditary and she had a 50/50 chance of passing it on to any one of her kids, and worse when it was determined that her second oldest had heart problems. And she viewed herself as “weak” for giving in and giving consent for that whole trainride in that case.
At least part of this whole steaming pile was that while the medical sorts seemed very concerned about the physical side of things they seemed to have neglected the person and the emotional side of things. One of the most positive things about hospice was that it became all about making mom as comfortable as possible, both physically AND mentally, which hadn’t always been her experience in the past.
So, upon further reflection, I think no small part of her objection to a ventilator is that it severely hampered her ability to communicate, which she might well have found more distressing than the average person would. When they then tied her hands down it basically hit her berserk button. Basically, if you intubated mom then restrained her hands you more or less needed to knock her out because she would NOT stop struggling.
People do understand that sometimes, people aren’t perfectly healthy after a significant health scare is “cured”. Sometimes what doesn’t kill you doesn’t make you stronger. Seems your Mom had other psych problems as well. Do you think you would be a bitter shell for the next 30 years if you got put on a ventilator for a few months?
Honestly, I don’t know - although if you actually read the whole thread it wasn’t just that, it was a number of other things that happened during that episode that factored into it.
Yeah, I actually edited out a bit about how waking during surgery might have had more to do with it than anything else. But by the same token, you shouldn’t add all that stuff into weighing the prospect of having a tube down your throat.
LOTS of people are bitter and angry for most of their lives (if not all of it) because of their chronic illnesses or conditions or for reasons completely unrelated to their health.
If your mother had some form of PTSD due to her experience, she had a choice of seeking psychotherapy, religious counseling, support groups for her underlying condition/disease or even self-reflection and growth on her own. She didn’t do those things. Not saying it would have been easy or even simple, but she chose chronic anger and resentment (unless you now say she was mentally ill as well).
I don’t believe her story about waking up during heart surgery. I just don’t. It’s a common thing to claim these days–the actual happening is vanishingly rare. I think you’ve changed the focus of your tale in order to garner sympathy. Kerrigan and Bass have both given excellent posts on dealing with difficult issues at the bedside. It is never easy, straightforward or black/white. Each patient is different, and each interaction/relationship with each HCP is unique as well. Sometimes HCPs mess up. Sometimes the patients don’t cooperate. Sometimes both things happen and a real clusterfuck occurs. MOST times, people do well or at least all right–and in life, that’s about as good as you’re going to get. IMO, people have incredibly unrealistic expectations (mostly due to TV and films) coupled with profound ignorance about their own state of health, medical science and the arc of disease.
My mother suffered a couple bouts of clinical depression in her lifetime, including a couple requiring in-patient care. She was familiar with therapy options. However, just as medicine for the physical can’t cure everything, neither can medicine for the mind. Blaming someone with a history of diagnosed mental illness by saying she “chose chronic anger and resentment” is a bit like saying someone “chooses” diabetes or cancer.
It does happen. A quick google gives over two million hits. All of the articles mention that it is extremely traumatic. I am certain that medical personnel dismissing such stories, as you yourself do, just adds to the trauma.
I realize it makes you feel better about being in medicine to disbelieve this happens, it makes the world feel less harsh and much safer, but it really happened. As I said, my mother was able to report about 20 minutes of surgical dialog and occurrences from during her surgery. It certainly convinced her doctors. Eventually.
Okay, so I finally mentioned this thread to Mr. Shoe tonight, and asked him to weigh in. For the record:
he has NO memory of being intubated (through his mouth/throat) and actually made a bit of a funny face when I asked → 
That part: poof! Gone. He was less (and then not at all anymore) sedated after the trach (hole in throat) so I asked him more about being on a breathing machine via that. He said it wasn’t uncomfortable, that he wasn’t having trouble getting enough air (I asked specifically, “Does it feel like you’re breathing through a straw?” and he shook his head “no”) and he said he’s overall FINE although, of course, he would like to get better and get the fuck home, which has been his litany all along. But the summary is: he would prefer to watch TV at home on his own couch but for now he is comfortable in his hospital bed watching hospital TV. Hooked up to his oxygen machine.
Broomstick, at this point, all I can think is: I’m so sorry for what your mom went through, and for what you had to watch her go through, but that medicine has galllumphed forward in the last few decades (twilight birth, anyone?) and that it seems as though, hopefully, for the most part, her nightmare is in the past.
I’ve thought about this thread quite a bit, and decided, maybe, hopefully, any bad feelings have simmered down a bit. So: I’m being presumptuous enough to bump it myself, to see if anyone else has anything to add or share. Otherwise, I’ll bow right the heck on out and let it float back down into the murky depths of the SDMB.
My wife was intubated 3 times due to ARDS, and the second to third time she was fully aware of my being present… Or so it seemed to me. But I tried, and could not get anything more out of her than, "I don’t remember any of that. "
This is a relief to me, because after two weeks of the third incubation she died. This was not due to any incompetence on behalf of the HCPs, it was due to the fact that myself and our kids were counseled, and well educated by the HCPs efficiently, and effectively.
Yes, it seemed (especially at first) that she was experiencing great suffering, but she was under almost constant observation, and treated according to ventilator indicators, as well as concerns of family members.
We opted to have her extubated rather than begin longer term rehabilitative measures, and invasive procedures involving a tracheotomy to sustain her.
So she lasted 3 hours following removal of the tube.
She and I touched on long term life support, and I believe that with the assistance we received, my kids and I made the right choice.
Remember, she was intubated 3 times, and we shared everything. I don’t want it it myself, and know the drill for that. She did say (contradicting herself a little) that it’s not fun, but nothing as bad as open heart surgery related pain during recovery of that, or feeling like she was suffocating before being intubated. That I witnessed as well, and almost passed out from seeing my wife in such distress, and fear.