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Mom has been on hospice for 9 months. I became suspicious of my provider as she kept being renewed despite weekly nurse visits that ended with "she's great!"


Knowing that Medicare was paying $300/day I began to wonder if she really needed hospice so I switched providers, which ended up being the hospital that referred her to hospice. At the switch over, they wanted to evaluate Mom for 2 months to make a determination.


She was doing well, although definitely showing signs of decline--increased sleeping (now 14-16 hrs/day, weakness, muscle wasting, mental decline).


Two weeks ago Mom had a first-time weird episode while the nurse was visiting. The next day the nurse thought she might be transitioning. Fast forward one week and the nurse told my Mom she might be graduating. Today they are removing her from hospice based on the last two weeks of Mom looking ok.


What the heck?!!!

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Although the criteria for palliative care here is basically "Would you be surprised if they died within the next 6 months?" my mom's nurse told me that when they reach a more or less steady plateau they can go on indefinitely.
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My neighbor's very elderly mom was in hospice care in her home for over a year before she passed. Just age-related decline, failure to thrive, advanced dementia.

My own MIL went from LTC to hospice when they thought she was going to pass from covid. She was on it for many months (more than 6, can't remember exactly how long) and was making very gradual improvement. They took her off it because she's total fine now (as in, as good as she was pre-covid).
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Hospice is becoming a big business. If they feel you may be "onto" hospice services being rendered when they are not needed, or questioning this, they may withdraw services if they cannot get an MD to vouch clearly that he believes that the recipient will die within or before six months. It isn't unusual for Hospice now to "fudge" as they get paid by medicare. They were wonderful when they started up in our country; as a nurse I so remember that. It is now "You get two aids three times a week for a bath. A Social worker will call. Clergy will call. An RN will check once a week" or whatever the drill is. As I said, Hospice is much changed.While it is the best we have it has become a solid part of the military-industrial complex. It's a real money maker. There have been some very very interesting articles questioning hospice of late.
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BurntCaregiver May 2022
You're spot on AlvaDeer and totally right. On my last caregiver position the client's family got convinced that she needed hospice care. The "care" industry was not making any money off of this client because her caregiving services were private and not affiliated to any corporate entity. I was her main caregiver for seven years. When she needed more care and her husband started needing help, I brought in CNA's that I've worked with on private cases. They received outstanding care from us. Better than any agency could provide. Everything was running very well until the husband passed away. The client was totally incontinent, did not use a toilet or commode and was in diapers. She would get a UTI every six months or so. That would mean a trip to the ER because she had to be transported by ambulance. After one such ER visit, social workers and care agencies started soliciting the adult kids (who did not live locally. The closest was her daughter and a three-hour drive away). They claimed that their mother could get all kinds of services for free and that she was so bad off she needed hospice care. This wasn't true, but her daughter bought the BS and thought her mom was going to get something for free. The client was wealthy and had no money problems paying for care.
Hospice showed up over a week-end. When I left on Friday (I didn't work week-ends) the client was fine. She ate well and took her meds and from time to time needed a Tylenol if her 'rheumatism' was acting up. When I came in on Monday morning there was some strange aide that I didn't know. My client was nearly comatose laying in a puddle of urine on a hospital bed in her living room. She was drugged up on Halidol, lorazepam, and morphine. She went from needing a Tylenol once in a while for her 'rheumatism' two days before to now needing morphine, halidol, and lorazepam.
I warned her kids that she wasn't going to get anything for free and that they were making a mistake allowing themselves to get talked into hospice. They dismissed all of us.
She graduated out of hospice and lived for three more years. The money all went too because agency care is expensive.
I would not have hospice at home for anyone I care about. They were great for my father but he was in a hospice facility, not at home.
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My daughter worked in Nursing facilities for 20 yrs as an LPN and later an RN. The rules of Hospice changed during that time. She had residents put on it because "they were going to die from what they had" was how she said it. One resident did have breathing problems every so often but the Nurses knew what to do. Hospice was brought in an while the Hospice Nurse was there the woman had a breathing episode. She immediately called the family to tell them the woman was dying. Normally, a Hospice Nurse will consult with the NH nurses before doing something like this. Not this particular nurse who was new to the whole experience. The woman ended up being fine.
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