When a Pateint is "talked into" home hospice because being at home is a better way to die", why are almost all services that you would receive in the hospital DENIED for home hospice?? I tried to remove my Lovely late wife from Home Hospice to take her to National Cancer Institute for (TIL) therapy which has been recently successful in the treating of Ovarian Cencer therapy using the T Cells of the patient's own body. I tried to explain to the Doctors and to the St Alphonsus Medical establishment that my lovely wife was not receiving adequate nursing care or care for personal needs by asking them: "Do you know any nurses I can hire who will work 24 hour shifts for 8 hour pay???. When I tried to remove my wife from "Home Hospice" a Registered Nurse who reported that she had been promoted to be our doctor's Assistant stated that it was impossible for me to remove my wife from Home Hospice. Further, our doctors at St Alophonsus Med REFUSED TO GIVE MY WIFE A BRAIN SCAN, (which was covered by insurance), which was required by the Stem Cell Treatment facility at National Cancer Institute to affirm that the cancer had not reached my wife's brain. The St. Alphonsus Med facility "Home Hospice managers gave two CNA's VACATION TIME OFF so that there was NO ADEQUATE CARE & and they forced one CNA to do the work of three. The "marketing" nurse asked me if she could attend the meeting we had scheduled with the St. Alophonusu Med Doctors and PA on the condition that she would keep her mouth shut and be a "fly on the wall" as she described it. Instead, when we met with the Doctor and PA this "marketing nurse" performed an Acanemy Award performance crying and screamin to convince my wife TO DIE at home. What followed was the most miserable experience where I slept on 4 hours per day, had to keep calling the Home Hospice, (left messages) as to the proper amount of pain medication to give her. The only personal care my lovely wife received at home was by a CNA, who was doing her best to cover THREE CNA's schedules flooded our bathroom as I assisted her in giving my lovely wife a "shower bath"..... I took my wife to the bathroom dozens of times a day by "waltzing her to the toilet singing in her ear" until she was dead weight and when I called for a catheter to be installed, the nurse who came put the catheter in wrong which prevented any urine accumulating but was kept back in her kidneys/bladder. (My wife had suffered from fist sized kidney stones which the doctor failed to 'NOTICE' on a CT scan which earlier caused me to take my wife to an emergency room halfway to Portland Oregon without benefit of pain medication.
Home hospice is a fraud, and I missed saying goodbye to my wife and was unable to provide her t cell therapy which might have given her much longer to live in relative comfort. I am seething. I am a lawyer with a pre-med degree so I am not clueless, who makes the decision to withhold medical care and paid for nursing care during "home hospice"????

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They're lying to keep your wife in hospice. When she signed up for hospice, she surrendered her access to hospital. They have to explain to her that she can leave hospice at any time to go back to her regular Medicare coverage for curative treatments.

These kinds of facilities get penalized by Medicare if patient comes back to the hospital or to hospice at a later date,

SandyBee; I'm so sorry for your loss.

It sounds as though your wife, being of sound mind, signed on for Hospice. If that was the case, then only SHE could pull out of it.

Was she in agreement with getting the treatments you outlined?

Again, (((((hugs)))))))) and my good thoughts to you and your family at this painful time.

When you accept hospice services you agree to not accept treatments that would be considered life extending.

I too have never heard that hospice can’t be stopped. I know that it most certainly can be stopped if the person or family request it.
“Talked into” hospice? You state you are a lawyer but didn’t read through the paperwork you signed to place your wife in hospice? Or understand home hospice was not 24/7 care? Hospice means death is near. If you wanted to pursue the T cell transplant you could have informed her doctor of your choice.
What was her diagnosis? Ovarian cancer? That is very painful to endure at the end. Being the spouse you are intimately involved with care decisions for her. Not knowing her age or physical condition, would she even have been a candidate for the stem cell treatment? If her cancer had metastasized to other parts of her body unfortunately the cancer won.
It sounds to me that you are grieving and that it is difficult for you to come to terms with her death which is understandable. Realistically however, she may have been too ill for the type of treatment you were hoping to get for her.
Dealing with the death of a loved one is very difficult. Sometimes you hear what you want to hear in the weeks before as you are holding on to hope.
I am sorry for your loss.
I believe you have the same topic going on in the question section so you may get redundant replies.

I have never heard that you can't go off Hospice. Hospice is the final journey. Most meds are dropped. I think insulin continues and any that will help in keeping her comfortable. If your wife was in the final stage of cancer, she must have been on pain killers. Yes, home hospice is not the best way to go for the family. Aids are only there 3x a week. Nurses about the same. The family is left with still doing the rest. One rule is no hospital visits. Thats the whole reason for Hospice. Your to the point nothing will help anymore so they try to keep you comfortable till ur passing.

I don't see why your wife could not request not to have Hospice anymore to research other options. Me personally would wonder why a Hospice Nurse would need to be in on what was a private meeting. This sounds fishy. Do they make that much off of Medicare?

Did u ever talk to Medicare who was paying this Hospice? You may have a lawsuit. I would wonder about that stone too.

Sorry, our health system is so screwed up. I pray you find answers and help someone else in the process.

SandyBee, my heartfelt sympathy for your loss.

Please note that Home Hospice is not 24 hour care. A nurse will stop by a few times a week to take vitals, then leave to go to his/her next Hospice patient. Volunteers will come in to bathe a patient, and some volunteers will come to read or talk to the patient. Otherwise, any type of caregiving is up to the family to provide.

Usually Hospice is either at home or at a nursing home/long-term-care. One would need to be self-pay for a nursing home/long-term-care. Unless one is approved via Medicaid [which is different from Medicare].

One can cancel Hospice at any time. Seeking any type of treatment usually will stop Hospice. Hospice's program is to give comfort during one's final days, and usually all medicines are stopped except if the patient is using pain meds [this can vary].

Did the Hospice group give you a notebook saying what they do for the patient? I got one for each of my parents when the doctor said it was time for Hospice. Sounds like the Social Worker at the hospital wasn't very informative, but one also has to realize at the time like this it is easy to be a deer in headlights and not be clear with what is going on. I know that happened with me, as one's mind is going in all different directions during this emotional phase.

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