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tiabye

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Feb 14, 2018
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16
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Loved one DX
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04/2015
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US
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FL
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Casselberry
So we are being told that since my sister is on a bipap machine that medicare will not pay for hospice. Some say that they will take her but eventually she will have to come off of it since its "prolonging her life".

My question is for the CALS that have gotten hospice. What all do they do for you? We have enough morphine to give her 7.5 ML every 3 hours. So if that is enough and what they give you can you tell me if its worth the fight? My mom refuses to take her off the machine because the CO2 buildup will kill her even though she can breathe on her own. Which I don't know how long that would take either??

Just wanted to get some advise on if its really worth it or not.

Thank you
 
BiPap is making her more comfortable. Can you get a morphine Rx from her doctor so you will always have enough? I would talk to her doctor because taking her off BiPap might make her very uncomfortable and stressed.
 
i get a weekly massage and rang of motion excersises from them that is very helpful.
 
I'm very late in replying, but wanted to pipe in as a former hospice nurse. It might be worth checking another hospice, if there is one in your area. Determining hospice eligibility is the job of the hospice medical director (a physician), and is not a black-and-white affair -- there are no rules that say a hospice cannot take a patient with ALS who is on bipap. There are eligibility guidelines (based on diagnosis), but even these are not set in stone. In the end, the hospice doctor has to certify that, in his or her opinion, the patient has a six month or less prognosis "if the illness runs its normal course" -- and to support this opinion with clinical fact. So, for example, a patient with ALS who has been vented for some time and has a g-tube and has been tolerating both interventions well and "maintaining" over time would probably not be eligible -- but if a person with ALS, regardless of the bipap, is showing signs of clinical decline (ie, losing weight, losing motor function, developing skin breakdown, developing respiratory infections, etc.) that would support a pretty limited prognosis, he or she might very well be eligible. It is entirely possible for two hospice medical directors to disagree on eligibility (even within the same hospice). Thus, possibly worth requesting a consult from another hospice.

The other piece is just finances. If a hospice takes on a patient with ALS, they are paid a daily rate (in the $100-200 range depending on geographic location) by Medicare, and are required to pay for the medications and therapies the patient needs. This would include bipap...so if the bipap is expensive, some hospices will not want to take that patient. But there can be ways around this: you could pay out of pocket for the bipap, or if your insurance is other than Medicare, sometimes the insurer will agree to keep covering the bipap expense separately from hospice (this is called a "carve out").

To me, the main upside of hospice was the on-call component. Assuming patients want to avoid going to the hospital, hospice is one of the few services that will actually come to the house and help you get through some sort of crisis (like a pain spike, or a pneumonia, or whatever) without going to the hospital. Even in the middle of the night! And there is a hospice "level of care" called "continuous care," where they will even provide 24/7 care, for a short period of time (like a few days), until the symptom is brought under control to the extent that the family system can manage it.

Our hospice has also helped with patients who wanted to be withdrawn from a ventilator at home. So if removing the bipap is consistent with your sister's wishes, they could provide the expertise to do that while keeping her comfortable. But the bipap should not be an absolute barrier to hospice.

Best of luck with all you are facing!
 
The BiPAP would only be paid by hospice if it was added while she was under hospice, which almost never happens for the financial reasons cited. It will remain rented under a traditional Medicare DME benefit.

It is a lie that Medicare will not pay for hospice on a BiPAP. Nor would I ever consent to out of pocket payment or a carveout since the hospice won't be paying anything for it either unless it breaks (not necessarily even then), and from your description, time is short. If they imply otherwise, it's a shakedown.

It's true that hospice isn't usually interested in its care and feeding, so to speak, as this entails time on their part, so you could reassure them that you handle that side of things. But from your description, I suspect you're having a hard time justifying imploring them to accept your sister, and I don't blame you.

The idea of taking her off BiPAP to enter hospice is ridiculous. Assuming she is ready to pass on, the idea is rather for her to wind down with the help of morphine and get to the point where stopping it causes no distress. You can do that yourself with an adequate supply. But if you liked one of the agencies that was cautioning you that will ultimately happen [at the end of the end], that would be the agency to go with.
 
I agree 100% with Laurie. I was at a Vitas Healthcare seminar yesterday. The representatives explained their hospice services. They said all DME should be on board BEFORE they put an ALS patient on hospice. They said they have ALS patients on Trilogy and Medicare continues to pay the rental. Their presentation compared their home health services to hospice. I thought that hospice, along with some private pay care for things they can't do, could pretty much cover the end-of-life challenges we all face.
 
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