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Old 09-17-2012, 11:29 AM
 
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Just got word today from the palliative care nurse at the hospital, that they'd like to have a conference with me to discuss my mom's "plan".

This after she told me that my mother was currently a full code, and that the doctor (not mom's normal doc, mom's hospital doc during this emergency) was recommending that may no longer be an appropriate status for my mother.

I said we were reasonable people and happy to discuss the situation, but that without actual INFORMATION I was unlikely to agree to change her status. I also told her that I was frustrated because doctors routinely avoid my questions as to the seriousness of my mother's status - leaving me to google.

Really, decisions on whether or not to revive a person should not be left to google!

Others on this board (in other threads) have seemed to suggest that its not a doctors job to provide prognosis-type information.

I adamantly argue that point - without a realistic prognosis, how on Earth can I be expected to change my mother's code status?

The palliative care nurse agreed that doctors don't want to get into these discussions, and that's her job. (Basically to have the awful job of telling people that they (or their loved one) is nearing the end).

Much as I'm sad that may be the conversation I'm about to have with her, I'm at least relieved that someone might actually admit that, and perhaps we can start to get tools in place (Hospice care, etc..) to make whatever time mom has left the best it can be.

And I still think less of doctors for basically demanding their patients (and their families) make informed decisions, while basically denying them the information needed to make those decisions!

*grrr!*

Last edited by Briolat21; 09-17-2012 at 11:29 AM.. Reason: extraneous typing
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Old 09-17-2012, 11:53 AM
 
Location: Location: Location
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I do agree that informed consent is best, but I take issue with the blanket statement that "doctors routinely avoid (my) questions". Perhaps you have not had the good fortune to have a doctor who is forthright in answering questions, but that has not been my experience. Surely there are doctors who will speak frankly about the outlook when a patient begins to lose ground. And I'm sure that some are avoiding the truth because it makes them uncomfortable to discuss it. Or perhaps they are taking too literally the oath to "first, do no harm" and believe it is "harmful" to lead a person to cease treatment, regardless of the prognosis.

I'm sorry that you are dealing with this and I hope that the palliative care nurse is forthcoming enough to correctly relay the doctor's position. Since I don't know your mother's age or condition, might you be able to discuss with her her own feelings on the subject? Bless you both.
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Old 09-17-2012, 03:06 PM
 
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How old is your mother and what is her problem?

Do you expect her to be "cured" and return home to live a full life?

You have to also face the fact that sometimes extending the life also increases the chances of brain damage or coma. The ones that need to be revived, have already died. Medical intervention allows them to exist a little longer.

Doctor are human too. sometimes they don't have the heart to tell someone that their loved one is simply in a bad way. And then, there are others that just don't care! Let's hope that you have one of those that cares, but doesn't know any good way of telling you.

Look at the situation. Let your heart be your guide as to what is the best for your mother. There's a lot that can be done to extend life, but it really isn't always "Life", it's existing.
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Old 09-17-2012, 05:53 PM
 
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Although I've had doctors that I really liked and felt they gave me needed information... I've gotten better and more detailed info from good nurses.

Even then, I don't let my informed decision making end there. I ask several people about issues when it's something I'm not familiar with.
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Old 09-17-2012, 06:00 PM
 
Location: 500 miles from home
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I have noticed that doctors like to dance all around the bad news; they don't seem to like to deliver it. Can't blame them; I guess.

I got most of my detailed information from the hospice nurse. Right down to when she might take her last breath (near the end of course).
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Old 09-17-2012, 08:39 PM
 
Location: Santa Barbara CA
4,717 posts, read 10,202,806 times
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Quote:
Originally Posted by Ringo1 View Post
I have noticed that doctors like to dance all around the bad news; they don't seem to like to deliver it. Can't blame them; I guess.

I got most of my detailed information from the hospice nurse. Right down to when she might take her last breath (near the end of course).

I have worked in health care for over 30 years and while yes there are some doctors that can dance around bad news there are also many families that do not want to hear the news and do not hear what the doctor is saying when he is telling them their loved one is near the end of their life. They instead want to believe that their loved one is that rare 1 in a million that will be different and beat what ever it is that is killing them. I have seen so many families just shut down and not hear what they are being told or turning the conversation into what they want to hear. It is a two way street and I think if you are open and ask the doctor the questions you really want to hear that more often then not they will tell you.

I urge everyone to sit down with your loved ones and not just the elderly ones and have a discussion about end of life so if you are faced with making a decison you know what they would want. I did it with my family and while one sister and my brother were mad I brought the topic up at the time years later when my mom died of cancer it helped everyone knowing what she wanted . Then when my dad got suddenly critically ill it once again helped to know that everyone in the family knew his wishes. I can not tell you how many times we have some one put on life support that does not want to be there and they are angry and spend their time left angry and attatched to machines, no way to die in my opinion, I will take my moms death at home with all the family around her over a death in the hospital attached to life support.
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Old 09-17-2012, 08:42 PM
 
Location: Texas
43,580 posts, read 52,760,258 times
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Quote:
Originally Posted by Briolat21 View Post

And I still think less of doctors for basically demanding their patients (and their families) make informed decisions, while basically denying them the information needed to make those decisions!

*grrr!*
What info do you want?
mod cut
The info people usually demand before making that decision is not available.
Sorry that upsets you so much.

Last edited by Sam I Am; 09-18-2012 at 03:12 AM.. Reason: please don't try to get around the word filter
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Old 09-18-2012, 06:18 AM
 
3,758 posts, read 10,652,998 times
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I don't talk a whole lot on this board about my parent's conditions. We manage well enough for the most part.

I realize this is one of those where apparently there are two sides - those that will assume I am acting in good stead for my parents and those who will assume I'm not.

Well. I am. I have their health care proxy. They have living wills. They do not have DNRs, however their living will makes it clear when a DNR would be appropriate.

The trick is getting a doctor to express to me that that line has been crossed.

I am happy for all those who have frank doctors. Personally, in my own health, I appreciate my doctor specifically for his droll wit and irony and I believe that if my own health were to take a turn he would be honest and specific with me.

But for my parents, I can't force out of these specialists anything. And I have bluntly asked. Prognosis. Statistics. Survival rates. They hem and haw. "Well everyone is different".

So, no, I don't believe my parents are the one special little snowflake that will survive August's heat. But apparently the doctor's that care for them want me to. Or better yet, would prefer I just drop the matter and we all be surprised when they drop dead.

I have explained that we are a pragmatic family and would rather plan for the worst, and be pleasantly surprised rather than plan for irrational miracles and be bitterly disappointed. And still they equivocate.

The hospice nurse was quite informative and very good to deal with. It looks as though mom will now qualify, so we will work with the hospital to get that going.

I acknowledge I gave in to an impulse to vent on this thread, which I rarely do - because I routinely watch other vent threads spin out of control.

So I will spend just a moment on replies:

Theatregypsy: Yes, I stand by the fact that my mother's doctors routinely avoid her/my inquiries. Unfortunate perhaps that we have found excellent specialists who take excellent care of her, but who are not forthcoming in this particular area. I am sure excellent blunt doctors exist (see my statement about my own GP) - but mom and dad don't have them.

Padgett2: As to my mother's condition - it is CHF. Until now, no one would tell me whether or not it was classifiable as end stage. Since the criteria for end stage CHF seem to be more subjective than cancer grading, it has been difficult online for me to determine where she was in the course of this disease. Which brings me back to the point that I SHOULD NOT HAVE TO BE GOOGLING THIS TO FIGURE OUT WHERE SHE IS ON THE CONTINUUM. Not when I ask the doctors this question routinely.

I know plenty about her condition and realize it is incurable. I have no desire for her to exist in an persistent vegatative state (nor does she!) or any other severely compromised position. However, until this latest emergency, her heart function was superior and there was no reason not for her to be a full code (she had never suffered a heart attack, was of sound mind, and all her conditions were well managed - i.e. hope for a recovery to immediate past quality of life was a reasonable one)

BrandD and Ringo: Yes, the nurses have been more informative about facts (they will tell me her actual vitals, etc..), but as far as interpreting how those facts translate into survivability, mortality, etc.. the nurses just shrug and give a blank stare. This palliative care nurse was ridiculously well informed and willing to give me oodles of information. It was fantastic - we spoke for 2 hours.

DashDog: I agree with your statements, many families do not want to hear the truth. However, that is not the case in my own family which is why I have been so frustrated in getting answers regarding my mother's situation. But your post is very informative and good information for the general public on having difficult conversations ahead of time.

Stan4: No idea what I did to require you to use langauage that apparently warranted a mod cut. But on every board here and eventually every thread there are trolls who apparently enjoy bashing the OP. The information I asked for was very reasonable. "How has this latest emergency affected mom's heart function, and has that changed the course of her disease, and how would that affect her prognosis".

This is not rocket science stuff in CHF patients. They are going to die of CHF (or associated pneumonia, etc..) unless of course they get killed by kidney failure or run over by a bus first. I'm not asking for them to predict the year/month/day. Simply trying to figure out how much of a setback has occurred and if her situation has become serious enough to warrant hospice services.

As the palliative care nurse was able to answer all those questions immediately - clearly this was not difficult information to obtain.


I thank all of you that are concerned for your concern. For the rest that wish to debate ad infinitum whether doctors are or are not good communicators of vital information and whether or not families are to blame for closing their ears at crucial junctures -- go forth and debate yourselves silly.

And to all caring for their loved ones, in whatever capacity - best to you all.
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Old 09-18-2012, 06:43 AM
 
Location: Texas
43,580 posts, read 52,760,258 times
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Quote:
Originally Posted by Briolat21 View Post

Stan4: No idea what I did to require you to use langauage that apparently warranted a mod cut. But on every board here and eventually every thread there are trolls who apparently enjoy bashing the OP. The information I asked for was very reasonable. "How has this latest emergency affected mom's heart function, and has that changed the course of her disease, and how would that affect her prognosis".

This is not rocket science stuff in CHF patients. They are going to die of CHF (or associated pneumonia, etc..) .
I said no one had a crystal ball.
It was mod cut because of the word before crystal.
As a physician, I get frustrated by people thinking this is so cut and dry that we can tell you right here and right now what is going to happen.
You cannot imagine how many people I code and intubate in the emergency department...and then their families ask, "Is he/she going to make it? Are they going to wake up? Should we make them DNR because she's just going to die anyway?" While I can understand asking these questions (it's a sad, troubling, and stressful time), what I don't understand is when people get all bent out of shape because I can't predict the future or tell them with any certainty what is going to happen. All I can responsibly say is, "Right now, so-and-so is critically ill and needs xyz life support to help her stay alive."

Why? Because you are right - it's not rocket science. Rocket science, after taking account of variables, is PREDICTABLE and based on physics and hard numbers. People, on the other hand, are weird and the human body DOES NOT act like a machine.
I cannot tell you how many people I thought were never going to make it WALKED OUT of the hospital days to weeks later.
Or how many people I was sure had the reserve and youth to make it just died.
And sure...you can get nurses and other health personnel to say all sorts of things, because in the end, they do not have 1/10th the responsibility we have and no one really gets quite as angry if they are wrong.

The whole point of DNR is to instruct health care personnel that despite the chance that someone might make it or not, CPR/intubation/pressors/etc will not be used. Not, "Dear Doctor, predict her chances with your crystal ball and then, based on that, decide whether or not to keep her alive."

In this litigious environment, where everyone still expect 100% perfection, I am not surprised none of your mother's doctors is willing to blithely tell you to pull the plug.
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Old 09-18-2012, 07:16 AM
 
3,758 posts, read 10,652,998 times
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Wow.

Stan - while I am sympathetic to your situation (and I really am!!) - still, personal attacks are a bit uncalled for.

I am not looking to pull the plug.

I am aware humans are tricky, and I will even admit that the "not rocket science" statement was snarky.

But I don't think asking, "What is the change in her heart function, and how does this (if it even does) change the course of her disease?" is asking for a crystal ball prediction of my mother's case.

I understand that talking about this must be difficult. But you're right - it is a responsibility. And it is one that doctors have SIGNED UP FOR when they became doctors.

Don't become a manger if you don't want to have to fire people.

Don't become a doctor (at least not a doctor that sees patients, as opposed to a research doctor who works in a lab) if you do not want to have to have difficult conversations with people.

I am sorry that you have had such a difficult time with people - patients and their families. But, if that bitterness keeps you from dealing with REASONABLE requests from extremely reasonable people -- well that's another thing all together.

Also, putting a DNR in place when someone is relatively healthy, is different than putting a DNR in place when someone has been deemed "terminal" (let's not get into the philosophical discussion that since we are all going to someday die, we are all terminal all the time).

What isn't appropriate necessarily for my mom at one stage, becomes appropriate as the course of her disease progresses. The trick is to get someone to admit that the course of her disease has progressed.

And - as much as I know not to pay attention to personal attacks on these boards, because well - lets face facts - these boards are not remotely the "real" world - still - you're statement suggesting I am in a hurry to pull the plug is well - despicable. Perhaps some time away (from these boards, if nothing else) will rekindle your compassion for others that do not live up to your standards.

While I may have suggested I was frustrated with doctors for not giving me vital information (and I am), and that I feel strongly it is their job to do so (I do), I did not at any time make any personal attacks about them to the best of my knowledge. I did not call them names, or suggest ulterior motives for their inability to share this information. So please refrain from assigning any nefarious motives to me in my quest to provide the best care I can to my parents.
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