Dying people being thrown out of hospice care.

[marybourg]

I thought it was just my WWIi veteran husband, or just his hospice, but I’m hearing of it happening to other people too: Medicare pressuring hospices to disharge patients who aren’t dying fast enough.

If they succeed in throwing a patient off hospice care, the next step down, Medicare Home Health, isn’t sufficient for most of these patients. Instead of the 2 to 3 visits/ week from the hospice nurse, he’d get 1 to 2 visits/month. This isn’t sufficient to take care of my husbands catheter care.

Fortunately, my husband’s hospice nurse fought so hard for him that he’s being kept on, but about 3 dozen patients from his small hospice are being discharged. Why? New, increased, pressure from Medicare. Why am I not surprised? Tax cuts for billionaires and multi-millionaires have to be paid for somehow. What better place than from the dying elderly.

[Ohiogal]

1. Absolutely appalling.

I’m so sorry you are going through this.

Healthcare policy in our country just plain sucks. Profit over people. I guess you only get adequate care if you’re a millionaire.

[Siwsan]

2. This almost happened to my Dad

They said that, even though he was in a coma, dying of a brain tumor, his blood pressure, etc, had 'stabilized' and he didn't meet the insurance company criteria for hospice. However, we could pay, out of pocket. The staff doctor felt awful, telling us this, and said that he didn't think it was right, but he couldn't do anything about it.

Transporting him home wasn't an immediate option so Mom headed home to take a little rest, and them come back with her checkbook. We had been staying with Dad 24/7 for about a week and she needed a break and I stayed with him because we never wanted him to be alone.

Not long after she left, he died.

[Ohiogal]

3. Oh! That's so heartbreaking....

I didn’t think it was possible to hate insurance companies any more than I already do, but your story did it. Your poor family. Your poor mom.

[Siwsan]

6. The hospice workers and volunteers were amazing.

And my parent's had top notch coverage - until they really needed it. I've seen four family members spend their final days in hospice, and this was the only bad experience. And it was only bad at the very end. From the moment he was admitted, it was pretty obvious we weren't going to leave Dad on his own, for a single minute, and the staff showered us with kindness and even fed us.

I do sometimes wonder, though, if Dad waiting until Mom and my sister had left, and it was just the two of us. Dad and I had a wonderful and close relationship. He was always my champion. I was proud to be the one who was with him, at the end.

[Dem2theMax]

20. I'm sorry you lost your dad.

You sound like you had the same relationship with your dad that I had with mine. My dad was my best friend.

Dad passed away in the hospital on the day he was going to come home to hospice care. But my mom passed away at home with hospice care. And more than one of the hospice workers explained to us that people will often wait until everyone is out of the room, and then they will let go and pass away.

I would bet anything that you are absolutely correct, and that your dad waited until it was just you there. I'll bet he knew that you were the one who could handle it the best, and that is when he chose to let go.

Like you, I was there at the end for both my mom and my dad, holding their hands. That is something that comforts me so much. I have a feeling you feel exactly the same way.

[marybourg]

10. I'm sorry.

[world wide wally]

4. This is America today?

Are we great again yet?

[mucifer]

5. Yeah, we have to assess after 3 months then every two months and chart to the decline.

It's harder to have patients with the diagnosis of Alzheimer's without having issues with medicare.

It seems that we aren't having as much issue yet with pediatric hospice. It is very hard to predict when a child will die and we often have kids on service for more than a year. We have come a long way with symptom management.

[pnwmom]

8. I thought doctors had to certify that a patient has less than 6 months to live.

And it can be renewed if they live longer than that.

Has the law changed or are providers trying to skirt it?

[marybourg]

11. I don't think the law changed. They're just being pressured

( and threatened) by Medicare to throw patients off if they haven’t died in a reasonable time.

[pnwmom]

12. Here's a link I found. It's part of a larger site.

I don't know if there's anything that would be helpful, but it's from the VA.

https://www.va.gov/geriatrics/guide/longtermcare/Caregiver_Self_Assessment.pdf

[mucifer]

18. You have to assess and recertify every few months and two doctors have

to continue to agree with the 6 month prognosis and sign off on it. For the government to agree you have to document there is a decline.

[pnwmom]

28. Once you have the 6 months prognosis, why do you have to re-certify every few months?

My mother just died in hospice last year and that wasn't the law her place was citing. We were told she had six months, and if she was still alive a doctor could re-certify, as long as he still thought she had less than 6 months. This was the same thing we were told for my mother-in-law several years ago.

Is the difference that Mom's hospice care was carried out in her nursing home?

ON EDIT: It looks like the rules have changed. I wonder if Trump did this.

https://www.ecfr.gov/cgi-bin/text-idx?rgn=div5;node=42%3A3.0.1.1.5#se42.3.418_120

§418.21 Duration of hospice care coverage—Election periods.
(a) Subject to the conditions set forth in this part, an individual may elect to receive hospice care during one or more of the following election periods:

(1) An initial 90-day period;

(2) A subsequent 90-day period; or

(3) An unlimited number of subsequent 60-day periods.

(b) The periods of care are available in the order listed and may be elected separately at different times.

But the next section says:

§418.22 Certification of terminal illness.

SNIP

(1) The certification must specify that the individual's prognosis is for a life expectancy of 6 months or less if the terminal illness runs its normal course.

(2) Clinical information and other documentation that support the medical prognosis must accompany the certification and must be filed in the medical record with the written certification as set forth in paragraph (d)(2) of this section. Initially, the clinical information may be provided verbally, and must be documented in the medical record and included as part of the hospice's eligibility assessment.

(3) The physician must include a brief narrative explanation of the clinical findings that supports a life expectancy of 6 months or less as part of the certification and recertification forms, or as an addendum to the certification and recertification forms.

[RobinA]

36. THis Is What Happened

with my Grandmother. She was about 99 when she went on hospice. She wasn’t sick or anything, just 99 years old. She had to go on hospice to get her assisted living home to quit sending her to the ER every time some little thing happened. She had a DNR, but she never needed them to resuscitate her. They’d send her to the ER every time she went boom on her butt getting out of bed. Too much drama, so she went on hospice to get them to stop. She lived to be 101 1/2.

[MFM008]

7. Some hospice people were great

The nurses were to cold and clinical. Seen it to many times.
We assumed mom was dying,
we just didnt need to hear how every thing was going according to
"the process". (As they called it)..

[Blue_true]

17. I know someone who is an ICU Nurse.

They see a lot of very sick people. They lose a lot a very sick people. I think they have to take on the detached mode to keep themself from going insane. Just think how it feels to have a really sick baby or teen and have that person die while you are trying to save them? Think about having that happen several times a month every month of the year. I am sorry about your experience, but there were human beings on every side of the situation that you were in. My dad died in the hospital after being there for a while, it is painful for everyone involved. Yes, Nurses are trained to deal with that, but there is also a human being there also.

[MuseRider]

33. I was an ICU nurse

and yes, we did have to learn to take care of dying or very critically ill patients without letting our emotions get in the way of the care we had to give but I never saw or felt that there was coldness to the families who were suffering. We were not cold to the patients either but you have to be able to function and being too connected makes that difficult. Still, the families were always treated with great care and compassion. No matter how busy we were we were always present to answer questions and show care and compassion.

I just felt like saying that, I know you did not really imply that they are cold but sometimes people take things differently than you mean.

It was a very hard job most of the time but we also were able to move a lot of patients along who healed and left and most never remembered their stay with us, thank goodness.

[Blue_true]

38. As I stated, I was an observer.

I didn't sense coldness from the nurses, more like they were close to dying people a lot. Did you have patients that didn't make it and that bothered you deeply? It seems to me at least, not having the skillset that you used in your career, that seeing people die would take a toll after a while.

[pnwmom]

9. Is the problem they don't have doctors willing to certify that they have less than 6 months?

We had our mother seen by her own doctor, outside of the nursing home, and it was no problem.

I am so very sorry that while you're losing your husband. Everyone around you should be trying to support you, not make your life harder.

[marybourg]

13. The doctor was willing, more than willing, but pressure

and threats were applied by Medicare to the management of the hospice. Fortunately, our hospice nurse fought hard, since my husband is clearly losing the battle, but many others who don’t have a fierce advocate on their side are being thrown off the service.

[pnwmom]

14. My mother had broken her 2nd hip and the nursing home was trying to kick her out

because she had used up her 3 weeks covered by Medicare. I had to fight with the nursing home because they were misapplying the law. The law doesn't limit care to only three weeks, as they thought. It allows for care for about three months, as long as daily rehab is needed to improve OR MAINTAIN skills. They said she wasn't getting better, so she had to leave. I said that as long as she needs the rehab to stay constant (walking with the aid of a walker), then she qualified.

The reason it mattered was that we knew she couldn't go back to her own home, and we needed more time to figure out where she could go next -- she wanted to move out of state to where one of her adult-children was living.

I emailed them pages of documents from government websites, till I managed to prove that the law had changed three years earlier and my mother did qualify. So I encourage everyone to make sure facilities have the correct information. My mother's place hadn't realized the rules had changed 3 years earlier. There could still be places that don't know the law.

Anyway, again, I am so sorry for what you are going through now. I'm glad you have that hospice nurse on your side.

[Dem2theMax]

22. Having been through this system myself with both my mom and dad,

it amazes me that we have to become doctors, nurses, lawyers, experts in so many fields so that we can deal with every issue that comes up.

I remember thinking that I never wanted to have all of this medical knowledge in my head, but I had to learn as I was going, so that I could fight for my mom and dad.

I have fought with more insurance companies and hospitals than I ever thought I would have to, but I am happy to say I won every battle. It wasn't easy, as you obviously know, but they made me so mad, there was no way I wasn't going to win.

[pnwmom]

24. Yes -- I know what you mean. By time time we lost both our mothers,

I felt like I could have gotten a college degree in subjects I'd rather not think about ever again.

[Dem2theMax]

27. Exactly.

[marybourg]

30. Yes, I was somewhat involved in that battle, since my husband at that

time was receiving physical therapy which Medicare refused to pay for beyond 3 months. We paid ourselves, for about two year at $700/month, but it kept him on his feet and out of hospitals for those two years. There was an organization collecting testimonials for a campaign to extend Medicare payments for these type of services,

They claimed that the relevant statutes did not mandate stopping service if the patient “plateaued” ; that it grew out of an interpretation, which had no force of law, and the court eventually agreed. Too late for us, but in time for my brother, who unfortunately now needs the same type of therapy my husband did. I’ m glad your mother was able to benefit, too.

[pnwmom]

32. Yes -- that word, "plateaued." I'd forgotten that but, yes, that was what the argument was about.

Whoever succeeded in that court case helped many people afterwards -- as long as they get care by a provider who knows about the change.

[Texasgal]

15. Whaaat?

Holy CRAP!

This is awful! I am so disgusted by this! Please let us know if we need to make calls or write letters! This is just WRONG!

I am big fan of hospice, my beautiful and young husband was taken care well from hospice in our home. It was only 24 hours from the time he came home to die and we had no idea how long he would hang on. Hospice was amazing and I'll never forget the kindness the nurses gave us.

I'm so very sorry and very saddened to hear this.

[marybourg]

23. So sorry about your tragic loss.

Yes, I think this is a situation to watch, at the very least. If my husband had not been reinstated, I would start writing letters, but since he was, I have no personal harm to claim. I just hope that some of the people who WERE forced out have family members in a position to start a letter writing campaign.

To prey upon the oldest and most frail among us, the dying, is disgraceful.

[ansible]

16. That's why I don't plan on living that older in the future

If it's this bad now, just imagine how much worst it'll be 30 years from now. I'd rather check out at my own time, at the current rate our health care system is going through I don't have much hope for things ever getting better for anyone that isn't rich.

[Blue_true]

21. How are you going to check out?

I think about old age in a philosophical way. If people no longer want to live because their physical and mental abilities are all gone, in most places they are left to slowly die, they can't end it on their terms.

Right now, there is no way that you can "check out" short of doing gross physical violence to yourself to an extent that you die instantly. Would you do that? I am not sure that I could if I got to that point, but I could lay in a bed while a cocktail of drugs came down into my vein and put me to sleep - but even method that is immoral when done in some cases.

[BigmanPigman]

19. Is Soylent Green coming next? This is sickening news.

Maybe I should plan to fast on Tuesdays, just to play it safe.

[Dem2theMax]

25. It breaks my heart that you have had to deal with this.

At a time like this, the only thing you should have to focus on is your husband, period.

I am glad that you found a nurse who really cared enough to fight to keep your husband in hospice care.

It makes me furious to read what you have written about what is happening to the other patients. Every time I turn around, I think I am in some other country. How could we be doing this here in America?

[radical noodle]

26. I have a friend who's dying

of multiple myeloma. She was on hospice, but they kicked her off for living too long. She thought it was a fluke. Guess not.

I'm so sorry you're dealing with this. What a horrible thing to do to people at the time they most need help.

[marybourg]

35. Terrible!

I hope someone will step in and get her reinstated - I wonder if it’s possible to apply to a different hospice? - as soon as possible.

[radical noodle]

40. She's in a rural area

so I don't think there's an alternative. She's still well enough to be mad as hell, though. She's married, but her husband has a job and can't be with her all the time. She has no nearby relatives, either, so she's just trying to manage on her own.

Hospice has always been a life saver for caregivers and a great comfort to those who have a terminal illness. What a shame that it's being ruined in this way.

[DonCoquixote]

29. funny

when my Mom died at hospice, they really seemed to focus on tryign to remove any will to live...now I have a bad feeling why. The sad fact is, if Trump needed to eat live babies to live, they would get some for him.

[democratisphere]

31. Look what drumpf has done with live babies at the southern border.

He truly is a monster.

[RobinA]

37. I Know A Lot

of people have really been helped by hospice, but I’m a little split on the issue, in part for this reason.

[dlk]

34. Something to Consider When Looking at Medicare for All

Single payer would be a better option.

[McCamy Taylor]

39. We all knew the "death panels" would be Republican.

[crazytown]

41. K&R

[Achilleaze]

42. republicans pissing on America's elders on their deathbeds

republican "family values" suck cesspool scum. Greedy uncaring bastards.