Thanks again guys.

Unfortunately, My MIL is NOT going to be on Hospice years.  She can go any minute and though we can see a light at the end of the tunnel, if she doesn't get to the point she can get out of that bed, she's just going to waste away till the most simplistic physical activity will cause the "Big One".  

As for the comment regarding, the wrong people get put on Hospice, God, I would only pray and wish so!  That means people are living longer and getting off of it.  Nothing would make me happier and quite frankly from the discussions I'm having now with our Hospice people, nothing would make them happier.  

In my experience, that is not the case though.  You get on Hospice the odds are you are not going to make it.  A doctor, usually a team of doctors, has determined the odds are very bad in the short-term and the patient for all practical purposes is immobile.  My cousin, for example, was told he had six months but lived three years, however he had mobility and was not on Hospice till his last days.  

What this thread is about is, by policy, how Hospice not only removes hope but hastens the process in some cases.  For example, in my MILs case there was no hope at first but because her discomfort was only after a heart attack, she didn't want to end her days almost comatose on pain medications.  Now she's beginning to learn her limitations.  Where that settles, we still don't know.  It may still yet be a downward course because without surgery its not going to get better.  We just don't know how bad it is yet.  Anyway, had she stuck to the "Here drug out" program, she'd been dead already.  No doubt, had she stuck to the only use Hospice meds and not outside the system meds, she would be dead already.  What inspired her was knowing in the 19th century or before open heart surgery, a time which she lived, was people lived with heart conditions for quite a long time learning their limits and taking nitroglycerin when the pains came.  

People like all biological things are unpredictable to an extent.  Depending on what, conditions can worsen or improve.  Hope can be lost and it can be found.  People can change their minds.  Hospice policy and procedures are set up for them to not change their minds with an end game of death and as fast as possible.  

Its pretty obvious to me, we as a society are an inch away from the Pre-WWII Germans and once a patient is diagnosed terminal, a government board decides whether or not they get the shot. Once a society gets away from family making that call, we know where it leads.

Tj

You know guys, I'm not trying to be harsh here so I hope you take it in the right spirit.  

Unless you are actually the one taking care of someone on Hospice, you really don't know and that's why I started this thread.  This is like someone in the hospital where family coordinates one patient while all the doctors have dozens of patients on steroids.  A simply amazing amount of control and decision making falls on the care provider.  Truly the decisions we make are life and death.  It must be nice to be able to take a "Well, they're a gonner anyway" attitude but for some of us its one hell of a lot of stress.  

It makes you want to bitch slap your family that comes to visit, puts in their two cents, then goes home and escapes.  

My SIL came down to spell me so I could travel for business, the most opinionated family member btw, and she about freaked the first time my MIL had a heart attack in front her as she sat their helpless as the wife and I ran blood pressures, pulse rates, listened for arithmia, dispensed nitroglycerin, and then as she got better some administered Morphine for pain and Adavan later to relax her. She sat there silent as we discussed nitro patch times, tolerances, and had no input at all when we concluded this was one of those "Its going to happen sometimes no matter what we do".  Where for her it was an emotional experience, we had no time for that even having to be very practical with my MIL saying stuff like "Don't do that. It'll only make you worse."  Other than she's still dictating funeral arrangements, her care advice went from this is the way it should be done to none. Her eagerness to help totally disintegrated and truthfully I can't blame her.

Morality has everything to do with this.  Home Hospice is all about morality from the mere fact you aren't putting them in a Hospice facility to just wait on the bed to do its deed to they even provide a Chaplin.  Amidst all of that, the Hospice people have to be non-judgmental and they are.  Its not a doctors call on whether we flip a coin or not and when its in your home, it becomes so very apparent it becomes yours and always has been yours.

Could we have afforded this without Hospice.  In our case, without a doubt. It would be a lot more hassle and way more mistakes.  I don't know about us when its our turn, but my MIL is "The Greatest Generation" and they had things like supplemental insurance and retirement plans.  Her medications not covered by Hospice/medicare are $5 out of pocket.  Would we have known what to do or what our options were without Hospice?  Probably not and certainly not at the level we do.  Its been one daily learning experience with tremendously skilled nurses and doctors advising us along the way, even a home meeting with the Hospice doctor so he's advising in the future by phone with first hand knowledge.  The who know what, has which medical records, and information has fallen totally on us.  We catch mistakes or short comings all the time.  Its not the blame game or line up a lawyer at all but "Whoops I can see why that happened."  Don't follow it, you'd have no idea it did happen.  Its like running a hospital in your house.  This type thing very often is not a matter of cost but what's best.  

For my MILs condition is this better or worse than 40 years ago?  I haven't made my mind up on that yet.  My great-grandmother lived with us with the same heart condition when I was a boy and we had none of this except for the basic meds.  It really wasn't much different.  She could barely make it to the restroom too but did live till she was 92 being pretty much immobile for years.  This will end the same way but then we all will one day.  

Its all a matter of time and that time is our decision more often than not.  All those of us in the middle can do is respect that decision one way or the other.  What I won't do is take a "Hey, you made the decision and can't change your mind" attitude.  If they want to fight, I'll help them kick.    

Tj

I apologize for I am not trying to be offensive, but then I doubt seriously you yourself have a thing to do with Medicare policy and Hospice limitations set by the government.

As for my MIL being in Hospice in the first place, I was no more shocked than anyone how it could go from surgery scheduled in 24 hours to Hospice.  You take a little old lady who's never been sick a day in her life, trusted doctors all her life, and have one tell her, she's going to die, she believes it.  Four weeks later, she's not only still alive but getting somewhat better, she begins to doubt.  She's no doctor but then one doesn't have to be to know her odds greatly improve to survive that surgery every day her strength builds.  

Who am I to throw blame her way.  I sure can't tell her she must give up now because she gave up once before.  Nor can I deny her medical care if she wants it now. Obviously neither can her doctors before this all came down and not in the system. Nor can I tell her she can no longer have the meds she was having because she thought she was going to die.  Yes, that's the seeking treatment you speak of.  Yes, hospice would have us deny her those meds.  If that's a wrong, I bear it gladly for the opposite of give someone meds that improves their condition is deny them those meds to make it worse.  

I assure you those we are dealing with in Hospice would be as happy as anyone that she gets off Hospice.  Hope and light at the end of a dark tunnel is not a common thing for those folks, but the system is not geared for "Whoops, they're getting better."  

Where goals differ is all through this thread, foremost is she shouldn't be there in the first place and the implied she's doing something wrong for wanting to live and seeking treatment.  My choice of words describing this attitude may offend people but nobody has given me a reason to not believe it isn't accurate.  Hospice is geared to death and by policy of not treating the condition hurry it along in many cases.  Not everyone who is going to die is going to of cancer.  In fact, heart disease is number one.    

Now I will back off this topic for I accept telling the people to not always trust the system/government policy when it comes to health decisions and health care is bucking the way things are.

Tj

Thanks, I know how hard it was for you to post this, but I do appreciate that we are not alone.

Tj