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I had a terrible conversation this morning with a nurse from a hospice agency. She said that my husband would no longer be able to be treated by any of his specialists, no ER visits, etc. Basically, I felt he would lose any supportive care he already had in place. There is no curative care at this time so that isn't an issue. I was looking for quality of life support in the home. I am still upset over this. The worst was when she said they would not allow treatment for a brain bleed. Are you serious? That isn't happening on my watch but I thought hospice was supposed to be helpful, this is the opposite. Of course I asked for someone else to speak with but I want feedback from others on how they were treated and what supportive care was allowed. I have private insurance, not Medicare. I have heard about some bad nurses on hospice but I never thought I would get one right off the bat with a phone call.

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Okay, I think I understand. You want the ability to treat if something happens and causes an injury that would cause unnecessary injury or damage. Does that sound correct?

We were told that at any point my sister wanted to go to the hospital and receive treatment she could, the protocol was that she would be removed from hospice for the duration of her hospitalization and she could go back on hospice once she was released from the hospital. She had BCBS of AZ insurance and was 52 years old. They never said anything about the coverage with the private insurance. Maybe you can get is put on hold or something, because it was a lot of paperwork and they provided all of her medical equipment. It would have been a mess if they canceled and everything had to be done again.

I am glad that someone more reasonable gave you information, but I would get it in writing how they will deal with hospital visits.

I hope that they provide you with good support and help.
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Silverspring Jul 19, 2019
Yes that's right. And I basically run everything past the hospice nurse before anything is done regarding the ER. They can decide if I need to rescind the service or perhaps even approve an ER visit. They do everything regarding paperwork, thank goodness. Hopefully, there won't be a need to go to the ER. Hoping it works out.
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I'm sorry that you didn't get a good impression with that particular Hospice agency. I'd try to meet in person, so you can sit down and really go into details. That's what I did when my LO was evaluated.

It was my understanding that conditions would not be treated by going to an ER, unless she needed to go due to her comfort. If she fell and had a fracture, contusion, etc., that could be causing her pain, of course, they would have her seen, because, her pain may be treated best by some medical care. But, short of that, illnesses, would be treated with the goal of keeping her comfortable and free of pain. Which is what I knew she wanted. Repeated ER visits, trips to the doctor appointments by ambulance, MRIs, blood test, catheters, etc. were unsettling and frightening to her and she is terminal, end stage dementia. Prolonging her life, so that she can suffer and die later, is not what she would want.

Ref. the UTI, they do treat her if she has symptoms with antibiotics, because, it's for her pain and getting rid of the UTI makes her more comfortable. As far as a brain bleed....my LO would not be strong enough to undergo surgery, nor would we want to prolong her life, if that should happen. I suppose that is the crust of the issue. With Hospice, you are not trying to keep the person alive for a longer period of time. Only ensure their days are as comfortable as possible.
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Silverspring Jul 19, 2019
Sunnygirl, we all need to decide what is best for us and I'm glad your LO got the care they decided on.

Having dealt with a brain bleed, it depends on what type of bleed it is but we chose the least invasive procedure and it did alleviate the severe symptoms caused by the bleed. To not treat wasn't an option as brain damage was a danger. That would have been heartbreaking to let happen when it could be avoided. It didn't prolong their life in terms of the initial disease though. And that's okay. We take one day at a time.

I think I am more comfortable about care after meeting with a different person and I might be able to go forward with the 90 day period of care and see where we are at. The social worker said some people take a straight dive down and others have ups and downs with their health. We are probably looking at the straight dive down type in our case, if the past if any indication.
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I am afraid that symptom support is what most western medicine is in reality. I would not use a hospice that would ignore a UTI, they cause discomfort in many ways and I find it cruel that they would let someone become confused and agitated with UTI. My sister was treated 2xs for UTI while on hospice care.

Why would you subject your husband to the hospital to find out what happened if it is only to find out what happened? I can't wrap my head around that. Could you share your thoughts on that?
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Silverspring Jul 19, 2019
I'm not sure I understand your question but I will try to explain using a hospital...if there is a secondary medical emergency, lets say a fall that requires a cat scan due to symptoms emerging from the fall, I would want the option to get that scan and then decide with the neurosurgeon how to treat it if there was a brain bleed. If you don't treat, you run the risk of creating a new medical problem. You aren't curing the original disease, that is still there but you are at minimum giving someone back some quality of life if you can treat that particular injury. However, they will still be at the mercy of the original disease and it will still be terminal.

UTIs are treated but not diagnosed with a culture, they just treat if they THINK there is a UTI. If you get UTIs constantly, this is an issue but that is something the hospice staff can probably work out with the primary care doctor and the urologist consulting.

At any rate, I have spoken to a more sympathetic person within the organization and there seems to be a little leeway with getting approval before heading to the ER which makes me feel much better.
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Yes, I will try another agency. My private insurer says that ER visits and doctor visits are allowed under hospice but the hospice agency says no. I'm not ready to cut ties with the small amount of support we do have. I guess this is why some people don't get hospice until it's very, very late in the game. I could not live with myself if he fell and needed a cat scan and hospice said no. I feel like we are in the donut hole of health services (sort of like the gap in health insurance).

To make it clear, we are not looking for anything other than symptom support, which is all we have gotten to date. There is no curative treatment, therefore, no drug treatment. We are not pursuing a cure since non exists. I guess that is foreign to many of you but there are indeed terrible diseases with no hope for a cure.
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This is what Hospice is. No, not everyone on Hospice is going to die "right now". Some do better and are discharged and that's with taking some of the meds away.

The Nurses info is correct. You do not go to the hospital or to specialists. If you are not comfortable with stopping his care, then you are not ready for Hospice.
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Hospice is for end of life care, it is not allowed to bill insurance for their services if the patient is being treated with life sustaining medication or treatment, seeking a cure. Those things are at odds. Hospice is the service provided to keep someone comfortable at the end of their life, it is not a free service to give in home help for someone that is pursuing a cure.

I think confusion happens when people say you don't have to be in the last 6 months of life for hospice, part of this is because nobody knows how long you can live with terminal illness, but they know it is terminal.

Maybe you need palliative care at this stage.

I am sorry that you were treated with harshness, can I recommend that you talk to all the hospice providers in your area to determine what their purpose actually is. Do you have any one that can help you understand just how things are with your husband.
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Silverspring, it is my understand that Hospice is there for end-of-life to make the patient comfortable. The Hospice will ask a doctor to treat a Urinary Tract Infection because of the symptoms that show up with a UTI which can be very uncomfortable for the patient.

For my parents, when they were on Hospice, yes their specialists were no longer needed as now the patient is under the care of the Hospice doctor. If a person is actively dying from, lets say cancer, it doesn't seem fair to the patient to prolong their suffering by having cancer treatments continue.

There have been some cases where the patient was taken off of all their medicine and actually had improved. It was a case of medicine overload that was making the patient appear to be in grave condition.

As for a brain bleed, guess it depends on what type of bleed, and how it was caused. Example, surgery will not be performed. Some bleeds clear on their own.

Sorry you are going through this, I know it came be complex as to what can be done, and what cannot be done. May I ask why your husband is on hospice?
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Hi Silverspring,

There are several different Hospice Care facilities in my area. I think they are not all the same. For example, my mother's Hospice Company, (Kindred) allows for her physician to stay on board as well as treats for certain issues that come up. I don't know yet if medicare will pay for both entities, I'm rather doubtful. But, Hospice ordered antibiotics for a UTI a couple of months ago and was also considering placing a catheter. I've heard others commenting that Hospice won't treat UTI's. Hospice also sent a tech and machine to the house to take a sonogram of a lump. As for ER visits, Hospice requires that our first call be to Hospice, but that if I feel she needs to go to the hospital that I am free to do so. I think I need to withdraw from Hospice to have medicare cover a hospital stay, and then resume Hospice when she comes home. You might consider calling a different Hospice company and see if there are a different set of parameters for the care you can expect. Good luck to you, I hope you're able to find care that gives you peace and feels right for your loved one.
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Silverspring Jul 19, 2019
Hi TeamNancy - the hospice I spoke to said they won't even do lab work to test for a UTI. Since one can die from a UTI, I guess that is their reasoning? I don't know. It's one thing to treat it and someone can't overcome it and passes away, but it's entirely different to not treat it and hasten a death. Frankly, I am horrified. I thought I had a good understanding of what hospice is but there seems to be a lot of gray area when you are talking about specifics.
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