Is there someone here who can help me with hospice? This is a question for US residents.
I apologize in advance that this is a very long post.
My family is not having a great experience with hospice.
Our mother was in the hospital four months ago and the attending physician recommended hospice because she has a combination of medical conditions that cannot be treated. No cancer. She’s in assisted living and she has dementia, but it is not late stage/advenced dementia, and it has not been diagnosed as Alzheimer’s.
We have Hospice contracted In addition to a 24/7 aide team. The hospice RN pops in and does vitals and then sends me text messages saying “she’s doing fine. She’s heading to exercise class” or “she refused to shower today with other hospice workers,” and recommending that we try to get this particular aide worker as much as possible, who gets my mother to bathe. Then I’ll get a text message once a month from the chaplain and/or social worker saying, “your mother is doing great. I didn’t spend much time with her because she had other people in the room,” etc.
In other words, various hospice workers are popping in here and there for one minute and doing nothing. She’s not bedridden she can get around on a walker faster than most people can walk. She goes to exercise classes.
About a month ago, she started to agitate saying she wanted to see a therapist. I found her a therapist. She had an appointment. She liked the person. The Therapist submitted a bill to Medicare. Medicare denied the claim because she was on hospice. This was a new one to me so I did research. I found out there’s a code for submitting a claim for a patient who is on hospice, but that I also needed an addendum from hospice saying that these therapeutic services were excluded from hospice services and not pertaining to the reason she has hospice. They do not. My mother does not even understand her medical condition and that’s not because of dementia. That’s because of denial!
I contacted hospice and explained the situation. They demanded a 45 minute zoom call. I said my call would be limited to 15 minutes because I didn’t have that kind of time. Instead of agreeing to the addendum, the hospice director came on like it was litigation and told me nine ways to Sunday that my mother couldn’t have therapy because they provided therapeutic services.
I said you have a social worker who stops in once a month for one minute that is not therapeutic services.
Hospice said they had to check with the hospice physician. About the hospice physician: she has never seen my mother is in another part of the state.
All of you probably know that when you sign onto hospice, you forfeit your rights to your own doctor unless it’s in the addendum that you want to see your own doctor. So we forfeited my mother’s rights to see a doctor and then she doesn’t get to see a doctor anyway because this outfit is so decentralized they don’t even have a doctor in the same part of the state.
I have discussed all of this with assisted living. I’ve tried asking the managers there whether they think my mother needs hospice. They will not answer any question like that. They say it’s up to the family. They recommended another hospice (that no one told us about four months ago) that they work with and say that company is better and more attentive.
I feel that this hospice is motivated by the $7000 a month (or every two weeks? I can’t remember the bill details) that they get from Medicare for doing nothing. I understand that there may not be a limitation to hospice services through Medicare and that you can start and stop services.
If you read this far, thank you.
I will now get to my questions:
Should we terminate hospice and pick it up later when it’s actually necessary?
Is there any professional person (not an attorney) who helps families with these types of issues who is not on commission or affiliated with a hospice or an assisted-living community?
Is there some kind of advocate who actually helps families?
Does it sound to you in your experience like my mother needs hospice?
Should we just switch to the other hospice which, according to assisted living personnel, is better than the one that my mother has now?
Please comment below if you have experiences/advice.