Confused: Hospice vs. Noninvasive Ventilation?

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SyncOrSwym

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Joined
Oct 7, 2016
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32
Reason
PALS
Diagnosis
09/2016
Country
US
State
WA
City
Shelton
Color me confused.:?: I finally got together with the VA last week for a whirlwind of meetings. One result was to be scheduled next week for a breathing test in Seattle. A second result was a phone message from someone at VA for me to come in for a fitting for CPAP(?). A third result was another call from someone else at VA to talk over the implications of Hospice care which was apparently suggested by the doctor. And one of the things the caller mentioned was (I think) the fact that Hospice considered NIV as life-extending and therefore incompatible with their palliative-only directives.

So, aside from the first two results seeming to compete with each other, they both seemed to compete with #3.

Could someone help the newbie (me) out here, at least on this last point? Does going on Hospice care mean giving up Bi-PAP (or whatever) if it was ever started?

Thanks,
Ed
 
Here's a random input:

I would argue that nothing is life-extending in the case of ALS. However, the BiPAP does improve Quality of Life, which is much of what drives VA spending on all us vets.

We did hospice in home. Hospice nurses were only a few hours daily, until we met the criteria of crisis care. Then VA paid Hospice of the Comforter to provide 24 hour nurses in my house for my PALS last couple weeks. (Unfortunately, while long-in-tooth, most were not qualified and none had cared for a paralyzed pt. One said her entire career was in administration!)

We considered the pulmonology visits to be technically useless--it really didn't matter to us how many liters Krissy could push out. But on the other hand, it gave us a few minutes to ask questions of a really smart lung specialist.
 
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Shelton,
BiPAP is generally OK in hospice. But a portable BiPAP (called an Astral or Trilogy, sometimes called NIV or non-invasive ventilation, long story mostly related to billing) seems to confound some hospices. It should not confound those with whom the VA contracts, however.

You do not want or need CPAP. The "Bi" in BiPAP means a different, lower pressure to breathe against when you exhale, because your breathing muscles are weak. People with "regular" sleep apnea need a continuous pressure to keep their airway from collapsing but are not fundamentally weak, thus CPAP.

From what I've heard, I'm not sure Seattle's VA will totally fit your bill. Remember, you can also get care at the 3 other Seattle ALS clinics, and the one in Tacoma. But everything you just said should happen in one visit. Try to herd the cats, or find others. Let me know if/how I can help.

Best,
Laurie
 
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Shelton, I use va for about everything, all va are not equal in proatcal . I am on hospic and on a trilogy. If I was to get a peg or trac I would have to get off hospic during the procedure and then get back on. I agree with mike about pulmonologist visits not much use for them. Good luck and don't stop asking for your benifits there are a lot out there and you have to be pro active in asking and stay on top of them to receive them .
 
BiPap is ok with hospice. However if you decide to trach you cannot be on hospice at the time of procedure. And if you are already have a trach. You cannot go on hospice, because you are considered non terminal unless you are going off trach.
 
Whomever you were talking to was not well informed, and some of the other replies to your question were also a bit inaccurate.

First, every PALS I have met who is on hospice has their BIPAP (a form of noninvasive ventilation) provided by their hospice, including VA patients. So this alone should tell you that you were talking to a poorly informed individual.

Now for the part that confuses most people: my wife's hospice not only provided her BIPAP, but also paid for her tracheotomy and G-tube operations and provides her with a ventilator (invasive ventilation) which she only uses in bed at night. This blows people's minds because virtually everyone in the ALS community is poorly informed about hospice care.

In hospice, there is no "rule" that limits available care other than this: it's purpose must be to palliate symptoms related to the terminal condition. As long as you have a doctor who understands this and writes in the chart how the prescribed equipment or procedure is intended to provide you comfort, hospice is required to provide it.

Now, the complicating factor you need to deal with is that ALS is an orphan disease in the hospice industry. Hospices get very, very few ALS patients and may have financial reasons to limit the care they provide. Indeed, Medicare completely overlooks ALS when making its per diem hospice funding rates. It is unprofessional for a hospice to admit a PALS and then fail to deliver all care and equipment necessary to palliate the PALS' symptoms, but sadly that is what often happens because the hospice has financial interests that are adverse to PALS. So when a hospice tells you "we don't provide that equipment or service," they may very well be like a home insurer that refuses to rebuild your house after it burned down. As with all potentially adverse situations, you need equal portions of ingenuity, diplomacy, and advocacy. If you can find coverage by going on and off hospice, that will avoid a fight. Otherwise you need to find a physician who knows how to write up an order explaining how the equipment or procedure is intended to palliate your symptoms, and be ready to stand your ground.
 
We went through this too with the VA. Our pallative care staff that comes in took the reins and was able to work with the VA to get it straightened out. We had to make them understand that the sip n puff and the bipap were comfort care measures, not life prolonging. Dad decided against hospice for now, but the paperwork is in place when the time comes.
I hope it all gets worked out.
 
Thanks, everybody, for the good info.

Regards,
Ed
 
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