How does Hospice fit in with other services?

Anyone have any experience with this?

Jeanne, I'm Hospice volunteer & Suncoast Hospice will honor all your & your husband's wishes. If you want PCA services to continue they will - My name's Karen & I live in Pinellas County, Florida, so I know a lot about Hospice.

Jeanne, I just stopped Hospice and although you hear good things, there is just as many bad things more than I will mention here. I think in the very very end they might be okay? My Mom is non verbal, 90, and according to the doctors, severe dementia or alz, they cannot tell for sure. She cannot walk and I puree her foods and use thick-it. In desperation I called Hospice several times after a seminar I went to, no one had mornings available. Mornings are horrible for me and then I am okay. Finally after calling the best rated Hospice again and was told that just hired two HHA's and they guaranteed me they had every morning available. On our 4+ hour intake interview at my house I was told they are experts, can hoyer Mom, roll her, bathe her and get her ready for the day in 1 hour. I explained to her all of the problems I have with the hoyer and I cannot roll her as she resists. Long story short, day one a HHA came and she couldnt roll her, nor get the hoyer to pick Mom out of bed without being on a curve making it impossible to get her into her wheelchair. Day 2, they send another HHA who also had the same hoyer problem and pushed Mom real hard to roll her whacking Moms hand against the wall twice as soon as I walked out of the room both times to get a towel and throw away her diaper. Needless to say I give anyone many chances, and I am here to help. Day 3 Hospice is due at 830am and the phone rings telling me the HHA hurt her back and will be out 2 weeks and they are not sure who they can get now as she thinks Mom is too difficult a case. They then offered me help for 1 hour about 2 or 3pm occasionally(moms nap time) My only problem is mornings, I stressed that before I signed. Once Moms up in her chair, I am set other than lifting on and off the toilet for bathing.
The nurse who did the intake was so nice, she came over and said "I am coming back to you with my tail between her legs." She explained Hospice is supplemental, they come when they can, and if they dont have anyone, they dont come. She said Mom is a 2 person assist and most at her stage are in a nursing home, although I am here to help but I need a strong person. (My husband and I can roll her together to get her hoyer sling off at bedtime but he leaves at 5am for work)
I am not knocking Hospice here, just want to tell you my story and I am sure others will. I signed out of Hospice and hired my part time CNA every morning, she is fabulous and I am broke, lol.
After I signed up in the beginning, the Nurse said to me "now dont call the ambulance or go to the hospital or doctors and dont buy any medication , call us for everything day or night and we will mail you a medication kit to not open "unless we tell you." (it never came)
WHAT? When I called originally and asked I was told I could still do all of those things, but guess what, if you do, you pay. From Hospice on, you are dependent on them and cannot use medicare for coverage unless they approve. I am glad I am out of it and when I signed out, she asked, "and who do you want her doctor to be now?" I was shocked, as Moms been to the same doctor for over 20 years, to think they removed that priviledge even temporarily erks me.
Since then I talked to a friend I met at daycare years ago and her Mom also had Hospice, she said there were days Mom wasnt ever changed and they were to change her daily at the center as she was in a reclining wheelchair all day and a 2 person assist also. A long time friend just had her husband pass away in a Nursing Home of cancer 2 weeks ago, she told me when her husband needed morphine they had to "call" Hospice and it was hours before anyone could come, she was furious and wish she never signed on. Finally Hospice gave the Nursing Home the authority to give that Morphine for them as they had no one available.
So, as far as other services, make sure you know these things and dont let them fool you. Yes you can call and ambulance and go to the hospital and your doctor but you will pay for it out of pocket.Yes they will send an Aide, but when they want to. I hope this helps and please no one take offense. I decided to do things without them and use moms doctor and be in charge, not having them call the shots for my Mom. Hope some of this helps you.

PS Hospice had diapers sent to me, they were so thin Mom wet through them, her pjs, her disposible bed pads , regular bed pad, right onto the mattress pad. The chux they sent didnt hold up. The day after I signed off I got a call at 8am wanting her hoyer sling back and they were coming to pick it up. amazing. If you think their products will save you money, they will not, you still need to buy your own if you want to keep him and his bed dry. I found the Tena diapers are the best and I add a Tena pad at night . I cut slits in the back of the tena pad so it all absorbs into the diaper and doesnt roll off the edges due to the plastic backing. I guess what I am saying to you Jeanne is, if what you are doing now is working, I wouldnt change things unless you absolutely needed to.

similar to task 4. for usa vein clinics offices (9 in total in different states). add comments to all of them. if some locations missing, add them using info we have on google local pages.

I used Hospice services for about 3 months and was very pleased with their attention to my wife, the patient. Also they had literature that helped me better understand the dying process. Eventually I discharged Hospice when I was able to care for my wife myself, but there was something that bothered me. When I expressed concern about who paid for Hospice I was simply told it was all covered, "You won't be billed . . . don't worry." But I did worry. Later I found out that Hospice submitted very substantial bills to Medicare without sending me copies. I don't know whether these payments will affect other services that may be paid for by Medicare in the future, but being left in the dark about billing is not good. It leaves speculation as to why . . . and speculation is not good..

Dirk, I was told by reliable source that the hospice we use for my dad charges $10,000 a month! Now I know we don't get $10,000 worth even though they cover his meds, hoyer, bed, oxygen, other aparatus, diapers, pads, interal feedings, 2 nurse visits a week, plus right now CNA visits 5 days a week to bath him (this is recent, before it was 3 days) If only he could get this coverage outside hospice for Drs and specialized care! I guess there is good and bad to everything. My dad has been on hospice for 11 months now...I can only imagine the bill. Best of luck to all in this very difficult decision for loved one, it is a good service, no complaints, not perfect but what in life is?

Hospice is an entitlement benefit under Medicare for citizens who qualify for Medicare. Hospice has several levels of care from the base level through to general inpatient where symptoms are out of control requiring constant review and management. Under this general inpatient level of care an RN has to be on hand 24/7 so it is really in a facility. Continuous care is also available where approrpiate but need not be conducted by an RN, although the case manager is (or should be a nurse). There are requirements and you can google these - they are called Conditions of Participation (COPS) and these spell out what is required of a hospice provider. Typically they cover a base line of care and most hospices exceed that level of care whenever it is needed by the patient. Hospices bill direct to the payer (Medicare mostly) for hospice care and all care for the admitting problem (diagnoses) are covered. So unless you are paying yourself, and if you have Medicare coverage, there really should be no bill from the hospice. If the hospice bills over the amount then the bill will not be paid by Medicare and the hospice queried.
We all pay for Meeicare during our working lives and 2.9% of salary, 1.49% from our pay check and the same from our employer goes to Medicare to cover costs. So that's why its an entitlement, you have previously paid the bill

Yes you shouldn't pay anything IF you let them do everything, don't go to the emergency room, or call an ambulance or go to a doctor. It's paid if you let them do it all, they are in charge now, not you.

I don't understand what you mean by "they are in charge now, not you."

I think Hospice care varies with the providers. I never used it because my father never qualified for it.
As far as hoyer lifts, they can have their problems and presume the patient's ability to be placed in the sling properly. Training for caregivers is needed but they can save the caregiver's back and be a safer way to move a patient who can no longer stand or walk.

They are in charge of the patient now as far as you cannot call an ambulance, go to an emergency room. etc. They have to be called and they make those decisions now. I am not saying thats bad, if thats what people want, I just am not ready for that. One example is if my Mom gets an extreme bloody nose all over her bedroom as she has before and throwing up blood clots, I want to call the ambulance, not wait for a call back from hospice. They also take over the ordering of medications and change some if they feel fit. Hope this helps explain, I wish they worked out for me, it was a horrible 2 weeks for me of people calling and coming and I never got the help I desperately needed.

What is PCA??? & Elderly Waiver????

thx

Thanks for the responses.

I realize that hospice is covered by Medicare, which is an entitlement program, and that we will not be billed. What I am concerned about is not the hospice side of things, but the Medcaid/Elderly Waiver side. That is not an entitlement program, but my husband qualified for it several years ago.

In my observations locally, hospice does not seem to provide the level of daily in-home care Hubby is receiving now. My question is, would accepting hospice disqualify us for the Elderly Waiver services?

I've spoken with a hospice administrator, who says they will coordinate to make sure no duplicate services are received. That if we are getting homemaking services through Edlerly Waiver, they will simply not provide homemaking services. Fair enough, if it works that way.

I also have a question in to the case manager for the Elderly Waiver benefits. I will share what I find out there.

Hi Jeanne, I found the MN site and copied the following:

a) Hospice. Enrollees who elect to enroll in the Medicare Hospice program 10 while enrolled in MSHO are not required to disenroll from the MCO’s MSHO 11 product.



It looks (to me) like you would be able to have the same services but the EW case mgr will tell you for sure. (Unless I have the wrong pgm)

Is your husband nearing hospice time? I'm starting to get ready for that move for my Mom. Thinking of you. geewiz

Hi jeannegibbs,

When my Dad was on Hospice, everything was paid for under Medicare and not medicaid, Dad got better and srvices under Medicaid returned. Now my Mom is under Hospice care in the Nursing home, and Hospice is in charge but the Nursing home still provides meals, and meds. Hospice comes in when Mom is having a server panic episode, showers, company, counseling, chaplancy, social worker all under medicare. When I say in charge, I mean Hopice over rules the Nursing Home but I still over rule them all! I am still the POA!

I'm told it will be the same regardless of where the person is, nursing home, home or a hospice home.

I hope this helps, thanks for all the help you have provided us with.
Best wishes!

PCA = personal care assistant.
Elderly Waiver = component of Medicaid that supports recipient in his or her home, instead of in a nursing home. For example, this program paid for Adult Health Day Program, and when Hubby's ability to attend that declined, now pay for a PCA. The total cost cannot exceed what it would cost to place the recipient in a nursing home.

THIS DEPENDS ON THE TYPE OF WAIVER THAT IS BEING UTILIZED. IF IT IS A TRUE MEDICAID WAIVER, (SUCH AS EDA, CCW, OR OTHER) THERE WILL BE NO CHANGE IN THE SITTER SERVICES PROVIDED. HOSPICE TYPICALLY WILL NOT PROVIDE A NURSING ASSISTANT BECAUSE THAT WOULD DUPLICATE SERVICES YOUR CURRENT PROGRAM PROVIDES. DISCUSS THE OPTION WITH THE CASE MANAGER HANDLING THE SITTER SCHEDULES, KEEPING IN MIND THEY MAY HAVE THEIR OWN OPINION REGARDING HOSPICE CARE. ON THE OTHER HAND, IF YOU HAVE A STATE PROGRAM LIKE LTPCA, HOSPICE CAN NOT BE UTILIZED IN CONJUNCTION WITH THOSE SERVICES. MY BEST ADVICE IS TO FIND OUT ALL YOU CAN BEFORE THE CARE IS NEEDED. HOSPICE IS A WONDERFUL PROGRAM WHEN DONE RIGHT AND CAN BE A GREAT ADDITION TO SERVICES ALREADY BEING UTILIZED. IF YOU FEEL LIKE HOSPICE MAY BE AN OPTION, CONTACT TWO OR MORE OF THE LOCAL AGENCIES AND INTERVIEW AND ASK QUESTIONS OF THEM. THIS WAY, SOME OF THE DECISIONS WILL BE MADE PRIOR TO NEEDING HOSPICE CARE.

Thank you for Info jeannegibbs on explanation of PCA etc...

As I understand it now, any items that fall under Medicare coverage will be handled by Hospice. For example, if equipment such as a hospital bed or oxygen or a wheelchair is deemed necessary for the comfort and safety of the patient, Hospice is authorized to order the item for immediate delivery, without going through any approval process. Hospice bills Medicare (and also uses volunteers).

If the patient is also on Medicaid (including Elderly Waiver), he continues in that program, and items that are paid for through that program go through whatever approval processes are in place for that. For example this might include homemaking services, aides, or incontinence supplies. If a patient is already getting a service, Hospice will not duplicate it. If there is already an aide who helps with baths, Hospice will not send a volunteer or paid person to do that task.

At least that is my understanding now. I'll let you know if my experience doesn't match that!

Just want anyone out there to know that you can get a hoyer lift and sling, hospital bed with 80" gel pad all free thru mediCARE also. All you do it get a doctors RX with 3-4 diagnosis's on the script (they know how) and bring or mail it to a medicare affiliated pharmacy. I got them all but instead of a semi-electric hospital bed I got a fully electric bed at $30 a month for 13 months, then we own it. I did it because I raise the bed a lot for changing and I wanted a brand new bed, not used as all the others. As far as Hospice, their diapers and disposible bed pads were useless and Mom soaked right thru them even with an extra pad in them. For me , Hospice came and after the 3rd day told me they could no longer help my Mom as she is a 2 person case and they are only supplemental care, so I canceled them. I do like the fact I can call an ambulance, or go to the Drs with her, and not have people callling and dropping by when they want, yet not helping me. I was hoping they would be great, but I tried 2 agencies and they were not. Maybe in the very end if Mom needs morphine they would be ok? As of now I hoyer her into her wheelchair, recliner and bed and still lift her on and off the toilet to wash her. I like reading of others experiences and hope you all have better agencies that I had.
PS On one morning I had my CNA here to help me and Hospice said that they wont need to come on that day if I have help. I said I PAY her. They shouldnt know if you have help because if you do, you are put on the bottom of the list. fyi

Reverseroles, I think it may depend a little on what your expectations are.

I am wanting someone knowledgable to help me understand the dying process. I want explanations of what is going on in my husband's body. I want someone to talk to about whether to encourage eating, and when to stop the encouragement. I want quick access to meds to eliminate pain, if that becomes an issue. I want to ensure as much comfort as possible in spite of increasingly difficult symptoms.

I am not expecting or looking for caregiving help. If baths become more difficult I may want help with that, but right now our PCA can handle that. I don't expect them to use one of their precious volunteers to assist me when I already have assistance through the Elderly Waiver program. They have explained that they will not duplicate services I already have. I accept that. I just wanted to be sure I wouldn't lose the services we already have, and now I've been assured on that score.

Medicare is paying for the equipment Hospice might order, so I assume (as you have confirmed) that I could get the equipment without Hospice. I've already been trying for a hospital bed his doctor ordered. That was about four weeks ago -- we don't have it yet. It has to go through channels, I'm told. But Hospice says they don't have to go through the same channels, that they are authorized to make decisions on their own, and they get equipment delivered the same or next day. Even if it took the same length of time, I would soooo welcome someone else coordinating and doing the phonework, followups, etc. Also I'm hoping that with their experience and coming into the house regularly they may spot something he needs or that would help him that I wouldn't even think of.

I've certainly had loved ones die. But I've never been intimately involved in the entire dying process. I want some help for me, to understand the process, as well as for my husband, to make the process as comfortable as it can be.

So, what I am hoping for doesn't seem to be what you were expecting. I think that will make a difference in our evaluation of the program's usefulness. I'll let you know!

I am glad you posted. It may help others have more realistic expectations of what Hospice can do for them.

I agree with your Jeanne, maybe in the very end they will be good for medication. I was in desperate need for morning help to get my Mom out of bed and hired my CNA as Hospice couldnt do that aspect for me. My Moms probably 150lbs and to get up alone is brutal and my arms ache. When Hospice told me they hired 2 new caretakers who could come mornings I was thrilled, but it didnt work out as the 2nd one said she hurt her back here. I got my hospital bed right away thru the medicare pharmacy listed on their website. I would suggest the 80" gelpad also covered under medicare to comfort. My Mom cannot roll and I raise her head at night so she wont cough, there are stipulations. Good luck, oh btw, they have nice hospital bed fitted sheets on amazon if you want to get those ahead , the beds are twin XL.