Its a morbid topic I know, but it is something I am living first hand right now and if you don't know about it can greatly shorten a loved ones life or have them live in un-necessary pain.  

A long story very short, my MIL goes into the hospital with a life threatening heart condition.  She's 82.  A combination of not liking the odds and fear of surgery, she refuses the surgery.  This was immediately seen as a desire to die and she was pressured in a big way to sign a DNR, "Do Not Resuscitate".  I'm talking can't get in the ambulance till you sign that to get home.  That made her eligible for "Home Hospice".  

Right off the bat, you learn they damn sure have a different end game than you do.  I'm going to be blunt here, their end game is death.  Though you may want your loved one to live as long as they can, that's not their goal nor is it their behavior even.  They're use to death so are very blunt about things like "You aren't going to get better" while not giving encouragement of any sort.  

Why use them then?  Its pretty simple, they give you a choice.  You either use Hospice or do without pain medication above a mild pain pill.  They cover things like oxygen and all sorts of make you comfortable stuff, you wouldn't get otherwise.  The downside is they do not cover or even advise you on treat your condition things.  That means you have to keep a doctor outside Hospice for those issues.  If the patient can not be moved other than ambulance, that creates another problem as doctors outside Hospice are setup for patient come to them and Hospice operates out of he hospitals so hospitals have the same goals as Hospice. that's end of life and fast.

Why we have such programs is very apparent. While providing one very valuable service, its saves a fortune in hospital costs by quite frankly allowing patients to die.  Now that's not a bad thing if you do indeed have a terminal patient that their condition is untreatable.  Its a real problem if your goal is just to get over a short hump or the condition is treatable by other methods than say surgery.  Its a flip of the coin whether its the devil or a saint.

Home Hospice is a little different state to state. Old as I am, my family has gone through this twice now.  The basic is a nurse a minimum of once a week comes but you also get a social worker.  I guess that's to insure they aren't being abused or something.  

In my MILs case, its the devil really.  When she first got out, she was having around 3 mild heart attacks a day.  The big one was looming and her condition very weak.  We started fighting the "End Game" from day one as we sought treatment and fought the drug them keep them in bed which causes them to get even weaker.  To do this we had to manipulate the system as we got medical power of attorney and legal power of attorney.  This leaves the "DNR" on file but negates it at our say so.  Big point here, because my MIL had a regular doctor before this all happened, that doctor agreed to handle the treatment.  

I can't tell you the pressure we have had to drop the doctor by Hospice and go with the program.  I'm talking multiple meetings even bringing their doctor out which I start each meeting the same, "Its against my morals and religious convictions to do anything but progress positively."  

Well, its been 4 weeks now and two weeks since my MIL has had a heart attack.  Knock on wood.  Our goal is get her strength up to where she can revisit the surgery option.  Their goal is make her comfortable and help her die.  Its been quite the battle and still is.

Anyone can tell you this stuff is never easy.  Probably the hardest thing you will have to do in life.  What I hope from this post is you understand what's coming and how important it is to know your goals and their goals may not be the same.  

Tj

My FIL has been on hospice 10 months now.  They've been good to him and us, but they definitely have criteria, e.g. him being able to feed himself again and gaining weight called his coverage into question.

 

Thanks old friend and my prayers go out to your and yours as well.

Around here, it is quite contrary to what at least one person posted.  You don't apply for Hospice or sign off,  like waiting in line for welfare.  Heck, every junky in America would be in line.  Its a doctor decision and that's based on two things, it looks like their condition is terminal (I'm not aware of a policy time limit on that) and most importantly the level of care needed by the patient.  

I apologize for my poor wording but I was trying to avoid a book.  These Hospice workers are some the finest people I have ever met.  They however do not establish the what they can dos and don'ts that they can do.  These around here are damn fine at pointing them out to you though, very helpful.  

Short version their policy is only making the patient comfortable until death.  That they do extremely well or at least as I would wish it so.  What they do not do is handle anything that involves treating the condition.  Now if the patient can be safely moved, that's not as bad as it sounds.  It just means they must go to a doctors office or treatment facility to get those treatments.  If they can not be transported (My MILs condition), man you learn as much medicine as you can damn fast. I think I have handled more heart attacks now than the TV show "Emergency".

Now you aren't alone in this, the hospice folks will help in anyway they can and man to tell you how fine these folks are, our nurse runs our PT test to the hospital regularly so we can adjust treatments they don't cover.  

I find it amazing how fast a home can be turned into an almost mini-hospital.  Unfortunately I also know way too many that it has not.  The point here is to know what happens really is at the patients decision making and a drugged out of their mind patient will do anything you tell them or lead the path down.  

There's three basic decisions, you can decide to try for that miracle or one shot in a 1,000, make them comfortable and let what falls fall, or hurry them along.  The system is geared around hurry them along.  That's not the people, that's how the what they can and can't do is set up.  

If you remember a post I did a couple years ago, I knew a woman who after her mom had a stroke, despite her blinking "NO" she wanted to live, the daughter had her IV removed so she would die of thirst.  Then she complained it took four days instead of three.  That's the level of decision making we're talking here and for people just trusting the system that's the direction they are heading too.  Once again, not because of who these hospice people are but that's how the system is geared. The hospice people, at least for now, absolutely do not make this decision for you.  Its not their place to judge and at least to your face they don't.  

An approach of life is precious and every minute to be sought and one of stick a fork in them they're done makes a tremendous difference in how long someone lives.  

Tj

Actually its not.  We've had vast improvement and in a very very big part thanks to Hospice.  Read my second post, its not the Hospice people who set policy of what they can or can't do.  That's established by Medicare.  

............and not to disagree with you but how you choose to remember someone has nothing to do with someone's death.  If there is any decision that should be ours, it is how leave this world.  Though I will not pass judgment on either decision, cling to every minute or end it fast, I most certainly won't condemn those who choose to hang on.  That is based in Christianity and many other world religions.  

If a person is alive, which is a whole other topic, I will do what I can to keep them alive.  If they choose and it is their choice to die, I'm sorry but that's where I draw the line and I will not help them for then it does become about me.   All I can do, like your mother, is make them comfortable as much as we can.  

Unlike me and I would almost bet anything, your mother, Medicare through Hospice makes no qualms making that decision and taking that step.  They do that through what services they can or can't provide.  That's a tough job your mom has and I'd bet it would blow your mind how much she does beyond policy, probably every day.

Tj

Yes, you have a good understanding.

What sets what is needed for treatment is the condition of the patient but what sets what Medicare will provide is Medicare.  They are not the same and Medicare will take care of me is a big mistake these days.  

In many cases, you are better off on Hospice even if you want to live, otherwise not being on it can be a faster death sentence.  

This is where family involvement becomes so critical.  A delicate heart condition is just like COPD as far as needed treatment except throw in the extreme pain plus needing meds to treat the condition.  The 02 devices, pain meds, and actually even nitro-glycerin (immediate treatment with no benefit to long term prognosis, Hospice is providing.  The long term meds teating the condition, they don't.  In all though, this still saving a tremendous amount of money to the system as we're not rushing her to the hospital every time her heart goes or keeping her in assisted living, which would be way more costly.

My father, his was cancer and purely pain management and comfort till the end.  This one, its could die tomorrow but a light at the end of the tunnel may not if we can get her strength up enough to risk the surgery.  Being 82 though, its not three days on a feeding tube, some PT, and lets rock and roll.  Its more complicated.

Tj


BTW, Yes, a couple weeks ago this would have been hard if not impossible for me to discuss.  Dealing with 3 to 4 heart attacks a day and the prognosis not a light at the end of the tunnel but merely a sliver of hope, it would have been impossible.  

Planning for this contention was my first post on this topic a few weeks back.   I'm afraid I have to give us a major "Fail' on that topic.  

My MIL living with us the last 20 years, we thought it obvious who would be calling the shots and what her wishes were.  That was a BIG mistake.  Family descended as family will do, everyone wanting a say, it got so muddled the entire treatment original plan went out the window and the hospital staff no real option rather than seek advice directly from the patient, which by then scared crazy, weak, old age,  and on drugs convinced death was in the next couple hours.  All that confusion, almost did it too.  My wife has five sisters, all good people with nothing but good intentions.  

What I don't think people realize is, like in this instance, nobody can mean to do a thing wrong or even do a thing wrong.  Just them being there, makes it all go wrong.  As usual, they all go home and then its us left with it day in and day out.  

Five years ago it was my brother in intensive care as his ex-wife of 30 years wanted him unplugged yet we had no idea what was wrong with him yet. I'm talking they hadn't been married in 30 years but she was right there to make the call.   I kid you not.  That time the hospital came in the minute he was on a respirator and advised us it was policy they ask if we want him unplugged.  I guess the ex wanted his IRA.  Anyway, I did have my brother sign control over to me in the hospital before he went unconscious, I had the ex kicked out, and he's doing quite well now.  He's taking care of my mom, built a retirement cabin, and is helping his grandchildren grow up.  

Absolutely the time to address all this is when you are still healthy.  Without a wife or husband and in a hospital bed in pain drugged out of your mind is the last place you want to.

Tj

Thank you Doctor Never Saw the Patient.  I'll make sure to tell the other three doctors involved with this patient to consult your post.

I'm sure its so very disappointing to tell some old lady she's going to die and she doesn't.

Now do us a favor and go back to GD with the other internet tough guys.

Tj