My mother was entered into Hospice care after my aging father could not continue to care for her at home. She went into in-home hospice care at my brothers house. He got a letter a few days ago stating that she will be released from hospice in less than 2 months because they felt she has been "cured". We have no clue what will be happening.
She cannot walk or get out of bed, they offered no rehab during her hospice care to help her regain her strength or nutritional support.Plus now she is heavily addicted to the strong pain medications they prescribed during her hospice care.
I am so mad at the healthcare system, I don't know what to do next. Anyone can give advice on this?
They have private insurance, medicare and Tricare.They do not qualify for any low-income programs.
It's not unusual for elders to get better under hospice care and be taken off hospice. She may well qualify for hospice again in the future. Hospice organizations are used to this. But they can't continue to provide care if death is not imminent.
Assuming there's funds for her care she can go to a nursing home or skilled nursing facility. My guess is that if she was admitted to hospice she should be in a skilled nursing care facility.
Hospice is there for comfort care, not rehabilitation. They do give heavy doses of pain medication as part of keeping the person comfortable. Considering that the person is supposedly dying, addiction isn't the issue - comfort is.
That being said, many people do improve once they are in hospice. Sometimes it's because they have been taken off of a long list of medications that had horrible side effects. Other times, it's simply the course of their disease and no one knows why they improve. However, once they are no longer considered terminal, insurance will no longer pay, so hospice has no choice but to release them from the program.
Since your mother has two months left in hospice, I'd start looking at nursing home or other care just in case she makes it. However, she may be in a temporary upswing with her condition and that may pass. No one can really tell - even the doctors. Just start preparing for her care outside of hospice knowing that it's entirely possible that she won't keep improving.
Most people who leave hospice are back on again shortly - after all, they were accepted into the program because they were diagnosed as terminal.
Please keep us updated. This is horrible to go through alone.
Carol
Then it happened he formed a clot in his lungs and has a fib (just developed) and they changed his dx to heart condition. The nurse had mentioned that they re-evaluate and that's why they changed his dx. At the beginning though the doctor that signed the papers knew he was not terminal. However, I wouldn't be surprised if this did not happen to me either. I'm just saying what they did in the beginning for us. I hope you find a solution. I know how extremely hard this is and that is putting it lightly.
Was hospice the only care givers getting her out of bed?
I had similar situation with my mother. First, ask the hospice team for referrals for home bound care. Ask them for longer period of time due to need for change in disposition. Also, explain the complication to them of the high use of pain meds and request THEY assist you with changing that if possible. Who was her doctor before hospice? Ask them also.
I found a service through the local university hospital that just cares for these types of clients and was fortunate that I got her in.
Another option I explored was concierge health care. It is expensive tho and they do not much specialize in elder care.
You might also explore VA benefits if she or your dad served. Aid and attendance for spouses is available, but, that's mostly for some additional funds. I don't know about medical care through VA.
There are many hospice companies around, maybe one will help when the other won't anymore....
As far as hospice, talk to them and her doctor .They usually renew their hospice.
I will try from our computer once I get home. We have 4 hours of help per day as well. Well, 3 hrs on Monday and Wednesday. 4hrs Tuesday, Thursday, and Friday.
(The hospice person told me that 1/3 of persons on hospice leave the program without dying. I don't know if that was just their program or a national statistic.)
(And, BTW, my husband died sooner than hospice expected him too. Accurate predictions are hard to come by.)
We did not have the situation you face, SpeicailKinCHA. Mom was in a nursing home when she went on hospice and remained there when she came off. You are now in the situation my sisters and I were in when Mom could no longer be cared for in a private home. You (or some family member) has to figure out what the best care situation is for her. Should she/can she remain where she is, with some in-home care? Would she be better served in a nursing home? These questions involve both medicare needs and financial resources. Her options are the same as a person who has never been on hospice. You are fortunate that you have several weeks to search, discuss, and decide this.
Best wishes to you all. If you have specific questions about the process of deciding what to do, post again. Lots of us have been through figuring out how/where to care for elders.
As for them being liable for an infection or other medical event after the discharge, no. They are not promising that the patient won't ever die ... obviously the patient (like all of us) is going to die of something at some time. When it becomes clear that death is imminent (again) the patient can be readmitted to hospice. She will still die of the infection, but with comfort measures in place.
I learned too late that the mission of Hospice is to facilitate and expedite the dying process, nothing more. Hospice provides NO REHABILITATIVE CARE AND NO CURATIVE CARE whatsoever. Hospice will administer strong drugs like morphine and opium which they justify as a means to reduce pain. In some cases, like mine, they are used to shorten the patient's life span.
My mother was like yours. She broke her hip and was unable to walk or get out of bed. She was in no pain from the hip fracture which had been surgically repaired, was perfectly lucid with a clear mind.
She was discharged from a skilled facility after 10 days because she could not walk with a walker and was determined not making progress.
She was placed in an unskilled facility and I was deceived that Hospice would provide more help in the form of nurses and aides, not their real mission. She died a month later.
If I had known what the mission of Hospice was, I WOULD HAVE NEVER agreed to sign her up. I am an only child and had no one to help in making these difficult decisions at a very stressful time and, like many others, had no idea about how Hospice operates.
Since Hospices are a private for profit federally funded program, people who are dissatisfied with Hospices' operation should contact their U.S. Senators and Representatives and request them to launch an investigation of how Hospice is structured. Also, AARP and AMAC should initiate an request to Congress for public hearings on Hospice.
Neither one could hoyer mom into her wheelchair or turn her to bathe her. You also cannot call an ambulance because you have to call hospice. If you call an ambulance, without their permission, you will pay for it out of pocket. I didnt like that and I also didnt have any help as their aides were awful. The 2nd one said she hurt her back in just one morning turning my Mom, aweyiyi! If you all who wrote has a loved one who cannot walk, medicare covers a hoyer lift once your doctor write an rx for one. We got a hoyer , wheelchair and hospital bed. I will have a different hospice once my mom is at the very end, who knows when that it, but I do want her to go in her sleep with no pain and if that means drugs, thats fine with me. My Mom is a sweetie, cannot talk or walk, is incontinent and hardly knows whats going on but she has been this way for years. She loves my touch, music and laughs and smiles. IF she were to not wake up yet be breathing, I would call hospice but not until. Hope this helps someone.
God bless.
My mother was discharged from the program because she improved to the point she no longer qualified as "terminal." So what happened in her case? Did the Hospice program fail in their alleged mission to bring about her death? Nonsense! And we will be calling them back in at the appropriate time.
That may be the key. The "appropriate time" is when they are terminal. That can be difficult to judge, harder with some diseases than others. But if they are in fact in the terminal stage of their disease, the outcome is very likely to be death -- death because of their disease; not because of anything Hospice does. People who are surprised their loved one didn't get rehab services on hospice simply did not understand the terms of the program. If you want your loved one to get PT and OT, don't sign them up for hospice care. If you don't want your parent to get strong pain-relievers, don't sign them up for hospice care.
IF you believe that your loved one is in a TERMINAL stage and you want only comfort care, you don't want to drag them to doctor's appointments and ERs, you accept that no medical intervention will keep them alive with quality of life, THEN is the time to sign up for hospice.
Being a human institution, hospice is not perfect. And no doubt there are some bad programs out there, or bad practitioners in good programs. But it is absolutely essential that you understand the nature of the program before you sign up for it. Then you will recognize if something bad is going on and report it.