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.
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.
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.
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.
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.
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.
As pointed out, no, you hadn’t made this clear at all.
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.
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.
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.
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.
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.
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.
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.)
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.
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.
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.
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.
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.
^ 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.
Are they really? That hasn’t been my experience.
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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.
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.
