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My Mama was in the hospital just after the holidays where it was determined she had developed pretty severe blood clots in her right leg. She was put on Heparin (sp) and the usual protocol, given a script for Xarelto and sent home in a couple of days. The script was only for three months and so now we are needing a refill. I am getting two different stories. The hospice doctor initially told our nurse that it would be ok to just take Mama off the Xarelto and put her on regular aspirin. I know the clotting was extreme and Mama is totally bedfast so I fear it will only return. Mama's insurance provider is telling me the doctor has not provided the prior authorization. I have given them that number to call directly. They are telling me they have sent it repeatedly. Bottom line, I cannot get my mama's meds. CVS has been kind enough to provide a three day supply, then another three day supply but now her supply is gone and still no prescription. Has anyone run into this and what do I do. I have argued til I am blue in the face. Why in the hell are we put in this position as caregivers on top of everything else?

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Good answers here. People do go off of hospice care if they improve, so maybe it's time to do that.

This summer, Medicare will run a pilot program allowing Hospice care for comfort as well as medications that sustain life if the patient/family want them. They feel that this move will make comfort care an easier choice. However, I don't believe that program will be in effect until July.

I'd talk with the hospice people about your mom's improvement. If you want her on medications that prolong life you may have to remove her from the program. She can always go back on hospice when she worsens.

These are difficult times for you. We're with you,
Carol
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When you work with Hospice, all Rx flows through their channels. They do not attempt to extend life with aggressive treatments, they just make the patient comfortable and happy. It's so hard to accept that time is short. What does Mama want? Does she want to live in bed or go with God? Ask her.
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That has been my biggest fear with Hospice. Mama does have pretty advanced dementia...BUT...lately she has even shown improvement in cognitive function, and she is not lying in bed unresponsive to her family...she is still laughing, having little conversations with us...she is not on ANY pain meds and has shown no signs of decline according to her nurse.....Mama is happy. I can tell when she is not after all this time and while around Christmas I feared we would lose her, she is doing well now, even showing signs where they are talking about taking her off of hospice. Therefore I do not understand why, when she has drug coverage through her own provider, and I know there is drug availability through hospice, ONE of them should provide what she was prescribed following her surgery. I have already made peace with knowing it would not be fair to try to keep Mama here, against her wishes, but Mama has quality of life and she enjoys seeing her brothers and sisters and so I am not ready to just stop any meds and do not think they have a right to withold them from her.
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Doc office says they have provided authorization and insurance company says they don't have it? Conference call doc office and insurance company. In the meantime give aspirin. It may be time to give up hospice care!
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Vit E also prevents clotting. I work in a hospice. These places are for end of life care. Our job is to ensure the level of comfort is at the highest level possible. If the client/family regarding extended life has a change of mind, the staff will usually assist with finding a more suitable place for her/him. Hospice are usually for short term only.
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Hope 22
Again, as caregivers we tend to be given "incomplete" discharge instructions or program instructions. So we are left to spin our wheels unnecessarily because others assume we know the "ins and outs" of getting help for our fragile elderly.

Anyway, enjoy this weekend with Mom on Mothers Day. She is lucky to have you good care. Try not to get "frightened out of your wits". Realize that as a devoted caregiver, you do the best you can with what you can. We all make mistakes or wish we could have do overs as caregivers. It is a process. Make sure you get a routine which allows you to get some sleep. It is difficult but without enough sleep you really can't be your best at caregiving.

Again, enjoy Mothers Day the weekend.
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Ahhhhh.....OK. I am beginning to see what I think may be the issue. In my mind, the Xarelto WAS providing comfort care/ pain management, but seems that the drug is considered more of a curative as opposed to pallative measure....This seems to be what folks are saying without saying it. It actually would have made it easier this past week if they had just gone there than confusing me so badly. In reading the CMS joint letter to Hospice AND Part D insurance providers there was a section addressing this and from what I could understand it stated that medication the patient was on prior to to their joining the hospice program should be taken on by hospice once a patient goes on hospice. I think the kicker here is they told us going into hospice they did not just focus on end of life, and that hopefully Mama would improve and they would be here for that too...but I'm thinking they meant by means of home health as opposed to hospice...Therein probably lies the answer...I see all of this but it is almost as if they are saying, if we provide a drug like Xarelto she may continue to live so we're not providing it...from an outsider it may not appear that way but when it is your love done, it absolutely does, especially with what they have put me through this past week. I deal a lot better with facts than "hints" and Mamas health is no place to be hinting...

At this point, the main help with hospice is the fact she does not have to go to the doctor, which she is totally unable to do now anyway...I seem to recall that home health did have a nurse though who came out for a weekly visit, so I guess that monitoring will still be there. I think it very well could be time to go off hospice. Mama is doing much better. Therefore if that is their issue, I suppose we can do it. The part that I will hate about that change is that even if we do that and even if we stayed with this provider, which, they will change out her bed, equipment again and I hate putting her through all that...wow...sometimes it seems it should be easier on our parents, loved ones when it reaches this stage...thanks all...
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I think that hospice will not provide treatment meds..only pain meds..or meds t o ease suffering. If she starts back on treatment..hospice will discontinue the service.
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michell13...I see you work in hospice...question...Mama is totally bedfast, cannot assist in turning, lifting her arms, legs, etc. She requires total help in feeding, is totally on liquid nutrition and to these supplements I add the baby cereals, mix in the apple / banana baby food, etc. to make little shakes, the only med she is on is xarelto...all of this is exactly as it was when she began the hospice program...exactly. the only thing that would be different is the conuing of the xarelto to prevent blood clots because she is bedfast...so are you saying they do not provide that because by doing so it might keep them alive? just wondering....

In all other areas, Mama is about as happy as any elderly person I've ever seen. We have her bed in the main living area of our home so she is there with us and not put off in a room by herself...She is an integral part of our lives as she always has been. Nothing has changed, the nurse has there is very little "wasting" physically....
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I think there is a six month phase where they reevaluate patients to determine whether they should continue on hospice or whether they should come off it...we are almost at that six month point, so maybe they were aiming for that and are going to suggest it as well since for me, not having blood clots in my legs would be a comfort issue as well as a health issue and I insisted that that be continued.
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