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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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We had Hospice until we were asked to sign something promising Mom would NEVER go back to hospital. We refused. Now we are on Hospice Palliative. However, when we were on Hospice, they provided payment for all care and meds related to the diagnosis under which she was admitted to Hospice. Her own insurance (Medicare and secondary insurance) provided payment for all care and meds related to anything else.

Hospice Palliative program does not provide payment for any meds but does provide care, with the frequency determined by the number of nurses employed by the Hospice Palliative company and number of patients they have. Will go back to full Hospice when the time is right. Hope that helps!!
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I used to work for an insurance company and later for hospital billing. If you feel like you are spinning your wheels there is usually a missing piece of the puzzle (besides the prior authorization.) I had great success with conference calls and "taking the reins" on the conversation. don't be surprised if you have to use simple language with the insurance company. Also, does your mother have a case manager if she is bedridden? Case managers are magicians when it comes to stuff like this. good luck.
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Hospice expenditures have gone from $2 Bn (billion) to $12 Bn from 1998 to 2009. Now there are not six times as many people dying, because the patients increased from 797,000 to just 1,000,000. I am going to guess that someone has figured out how to take a compassionate program and turn it into a giant cash cow. So now the feds are going to deny any expense they can.
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According to the new Medicare regulations, the hospice has to prove why they won't cover a drug-ie. they have to prove the reason the med won't be paid for and why the condition it's treating isn't related to the diagnosis.
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exactly what I have been saying. As it turned out, Hospice continued to refuse to pay for the xarelto but her insurance carrier did pick it up so we do have a modest copay but that is fine as long as we have it....but I, like you, do not understand their reasoning. I think what they are saying is that her primary issue is dementia/early onset alzheimers and that the blood clot is not the primary issue...what I was trying to tell them is she is bedfast because of the dementia which is what has caused the blood clots...per her doctor...so it would seem to me it would be covered. It finally got to a point where I was afraid they were going to dismiss her because of all the issues and also a few folks here indicated it could happen. I told her insurance carrier that while they are all sitting around on their "panels" deciding which form to fill out, my Mom could throw a clot and it would be too late. It truly has gotten bad and I worry for our elderly or anyone in a position who is unable to speak out for themselves....thank you for your responses.
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I don't understand why hospice isn't paying for Heparin. That should be considered comfort care because without it, your Mama could throw a clot. As a hospice social worker, I suggest you contact the hospice RN and ask what's going on. If you don't get a satisfatory answer, then ask for the Administrator.
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I don't understand. Blot clots are extremely painful therefore despite end of life issues I would think preventing clots would be the way to let a person pass over without pain.Did I understand correctly that your mother isn't dying of other complications or maladies but could and will die from clots? Soooooo...isn't that a little like her euthanizing her but with pain/ as what incentive?
Sorry if I seem insensitive I'm not .I can relate to what you are facing but question the methods her docs are using to accommodate her end of life wish.
We all want to pass over comfortably. What are really saying here? Many times it seems as if the cost of a drug comes before the welfare of the patient, the cost to the insurance makes us expendable in order to add to their profits.
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I found this from the NHPCO: National Hospice and Palliative Care Organization. It would seem to confirm what you are saying DRBLESSED...Thank you!

"How does the hospice work to keep the patient comfortable?
Many patients may have pain and other serious symptoms as illness progresses. Hospice staff receives special training to care for all types of physical and emotional symptoms that cause pain, discomfort and distress. Because keeping the patient comfortable and pain-free is an important part of hospice care, many hospice programs have developed ways to measure how comfortable the patient is during the course of their stay in hospice. Hospice staff works with the patient’s physician to make sure that medication, therapies, and procedures are designed to achieve the goals outlined in the patient’s care plan. The care plan is reviewed frequently to make sure any changes and new goals are in the plan"

Hence, as outlined, the hospice staff works WITH the patients regular physician in following the care routine. This would seem to further confirm that her regular physicans prescription of the Xarelto would be continued, and, hospice having filed the appropriate prior authorization forms as required, rules and regulations have been appropriately followed.
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Not all meds flow thur Hosparus if you have a private doctor. Hosparus cover certain meds but if they don't cover it then you can pay with Medcaid. I know this for a fact because my mother has to get her meds some one way and some the other. Again I say see out a doctor that will come to your mother then Hosparus has to work and report everything to your private doctor before any changes and if you don't want to switch to there med for any reason you have the choice to use medcaid and get your mother what she needs.
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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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Thank you Lizann...and agreed...I know Hospice is an excellent program, it has been helpful for us, and I am appreciative....BUT, Mama has gotten better. I relize they have their rules and formulary procedures to follow but as you said, it can be restrictive as well. Particularly when a patient, though still frail, is enjoying life. Mama has always been a vibrant person. We talked about this scenario all of my life...She always made me promise I would not let her linger on equipment, in a hospital, etc. when there was no hope. She also made it clear that if she was enjoying life she would want to remain. While she told me not to let her situation ever cause me to put my life on hold, I am blessed to be home with her. It is hard, I have a lot of rough days, exhausted days, frustrated days...but I know she does as well. We are going along together...and now are able to share some precious moments together. All I want is for Mama to be comfortable, happy, well cared for and able to enjoy a good, quality life for as long as possible. That, to me, does NOT include allowing her to lie in a pneumonic state with no treatment...And my hospice has not put me in that position. They have never complained about what I was doing. I know this last issue was confusing for me but had they clarified what the procedure was it would have been much easier for me to understand and I would not have been frightened out of my wits. The meds were readily prescribed by her hospice doctor, but there was a procedure for it and that was not relayed to me, hence all the confusion and frustration. I don't think it should have to be that difficult...I am thankful we finally got our meds and Mama is doing well.
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I have had to get coverage for my father, go to the doctor's office get the written prescription and walk it to the pharmacy.
You mentioned she was on hospice. While good services, there seems to be lots of dos and don'ts which can be too restrictive to proper care in my opinion.
If the doctor wants the patient to receive a certain drug, that should be it. But we have the hospice rules, HMO and insurance company rules all playing doctor. It can get maddening. A caregiver doesn't have time to hang on the phone or physically walk prescriptions around.

I also had mail order programs where the drug was renewed but not in the house yet, so I had to get a local pharmacy to arrange a special couple of days of medicine until the mail order drugs arrived. Things as small as snowstorms can delay renewal of a mail order drug.

Good luck. I understand the frustration as you don't want your mother to go without her prescribed drugs.
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I agree vstefans ... that was my understanding. I know that when Mama developed bronchitis, the NURSE ASKED THE HOSPICE DOCTOR what she needed to do. An antibiotic was prescribed and Mama is better now. I cannot begin to imagine that if a loved one in hospice developed flu or pneumonia it would not be addressed....that to me IS barbaric....thank you vstefans
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I thought hospice COULD cover for things that were curative for issues OTHER than the terminal diagnosis. I think the issue could be that they get a bundled payment and therefore don't want to. The goal of hospice should not be for someone to die as fast as possible, but to live as well as possible until their natural death. I would think preventing blood clots would be very much a quality of life and comfort issue, and ASA and Vit E can be helpful but are nowhere near as potent!! Coming off hospice might be just the ticket for now.
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Additionally, we do not receive many of the benefits you mention in your descriptive....I respectfully disagree with you that I have broken some cardinal rule of hospice for caring for my Mother.
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I am not sure what you are referring to that i am doing that is going against Hospice. I have followed every directive they have given me. The only med Mama is on is the Xarelto, and there was NO explaination from anyone regarding that med....even though I asked about it. I was told the script had been written and then when it would not go through they told me to call and check on it. So I am not sure what rule you think I have broken. As far as my calling them out on the bathing aid who continued to make sexual commentary about other patients...I absolutely believe I was within my rights to request she not return.
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The National Hospice and Palliative Care Organization (NHPCO) recommends the Functional Assessment Staging (FAST), a 7-step staging system, to determine hospice eligibility. In addition to the FAST, there is The Mortality Risk Index (MRI), a composite score based on 12 risk factor criteria obtained from using the MDS (Minimum Data Set), has been suggested as an alternative to FAST. MRI is also known as "the Mitchell score".

Functional Assessment Staging Test (FAST)
Stages:

1. No difficulties;
2. Subjective forgetfulness;
3. Decreased job functioning and organizational capacity;
4. Difficulty with complex tasks and instrumental ADLs;
5. Requires supervision with ADLs;
6. Impaired ADLs, with incontinence;
7. A. Ability to speak limited to six words & B. Ability to speak limited to single word
& C. Loss of ambulation
& D. Inability to sit & E. Inability to smile &
F. Inability to hold head up



Mortality Risk Index Score (Mitchell)

Points & risk:
1.9 Complete dependence with ADLs;
1.9 Male gender; 1.7 Cancer; 1.6 Congestive heart failure; 1.5 Bowel incontinence; 1.6 O2 therapy needed w/in 14 days;
1.5 Shortness of breath; 1.5 less than 25% of food eaten at most meals;
1.5 Unstable medical condition; 1.5 Bedfast; 1.4 Age over 83 years;
1.4 Not awake most of the day



Risk estimate of death within 6 months
(Mitchell score):
Score Risk %

0 8.9

1-2 10.8

3-5 23.2

6 - 8 40.4

9 -11 57.0

12 or more points 70.0
So a Mitchell score of 7 means they have a 57% probability of death within 6 months.
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Hospice, as a Medicare benefit, is for palliative & comfort care only for those that meet the criteria and stay within the specific requirements. You or mom or someone within your family signed off accepting the terms of hospice. Your mom was evaluated for hospice from both their (or the hospital-stay) physician and the MD with the hospice group, so she qualified. Although hospice is viewed as for those that have just a few weeks left to live, hospice can be provided long term. But the crucial part is that any & all services have to be for "comfort" and not "cure". So medication for pain management is fine but a ventilator for breathing is not; assistance in feeding is fine but a peg-line is not. Everything has to be for comfort NOT cure.

Once they go on hospice, the rules are pretty strict on seeing doctors. She pretty well has to be seen by the MD’s affiliated within hospice. If she goes to see her old MD or you take her to the ER or do anything that promotes "curing" her, she can be discharged from hospice. Medicare can decline to pay for that doctor visit, hospital or ER cost too. If prescriptions are coming from sources other than coordinated by the hospice provided, Medicare will not pay and you will likely have to private pay for the medications. Medicare is pretty efficient in record keeping and can easily monitor if something is getting billed or paid for that is not within compliance for Medicare (all this is done within CMS - Centers for medicare & medicaid and lots of providers have their bills done in real-time to CMS too). If your mom has a secondary insurance coverage, and they know about hospice, they too will decline to pay for any services or medications as all this is now is supposed to be within the hospice framework. (So say mom had Blue Cross as a secondary insurance and once mom is on hospice, BCBS will not pay for anything anymore as hospice goes 100% for coverage). Everything medical has to go thru the hospice provider. This can be hard for family to go along with but that is what the hospice system is about. Yes they are aggravated with you because you keep on doing things not within compliance for hospice.

Hope22 - you have been asking for and doing things that are "curative" and so is a big issue for the hospice provider. They could find themselves not getting paid from Medicare and if it is due to your doing things against the Medicare rules that you all accepted & agreed to, you could find yourself getting billed for the services. It will be very, very expensive too.

My mom - who is in her 90's - went on hospice June, 2013 due to her shattering her hip after a fall @ her NH (she is on Medicaid). So next month will make 1 year on hospice. The first 90 days was covered under the initial doctors orders and now she gets re-evaluated every 60 days for additional hospice benefits. I changed the hospice provider company the second month in as they were crap on communication and signed her up for another hospice group as Medicare allows for that to happen by the consumer (self-directed). She gets - in addition to the 24/7 care of the NH staff - from hospice an RN visit once a week, a nurses aide visit 4X a week and 2 of those visits involve bathing in a geri-bath chair the shower room @ the NH; a specialized bed & mattress; a geri-chair so she can get out of bed and be strolled about; plus all her diapers, bedding supplies; and nutritional supplements (TWO CAL HN w/FOS). Now I know that if she get the flu or pneumonia, that she will get NO prescriptions to battle them. It is not barbaric, it is letting nature take it's course. Everyday I am grateful that Medicare & Medicaid exists and is there for her & accept the "rules of the road" for each program.

I will do another post on the 2 main check lists used for hospice evaluation.
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I think that is the direction they have been looking for a while with Mama. Lately I have even had the feeling that they seem disappointed when she doesn't show signs of decline...it has been strange. they were excellent in the beginning, but towards the last couple of months, they seem reluctant to help even when I call them. Mama caught bronchitis a little over a month ago and it seems to aggravated them that I wanted meds for that....this is very confusing to me. I understand the whole "quality of life issue" but as I have said repeatedly, Mama is happy and while she is frail, she knows she is loved and she is still able to talk to her brothers and sisters and loves her family. I can't see just letting her lie here, and not treat something like bronchitis...it seems barbaric to me.
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Call doctors referral and ask for a doctor office that come to the house and get your mother her own private doctor. I had hospice and a doctor and she still has a doctor that come to the home. Hospice had to cancel due to the fact that in paying for the bill my mother had to be dyeing and she doesn't have a terminal condition that hospice can say in so many months she will most likely died. Get a DOCTOR
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Carol, where can I find additional information regarding the Medicare pilot program? It would seem that should be the way to go for ALL hospice care...
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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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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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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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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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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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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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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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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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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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