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.
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.
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.
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.
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?
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.
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.
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.
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.
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?
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.