It depends on the hospice and some will not do trilogy even though they allow other non invasive ventilation.
You need to interview the hospices and see. The general rule is you can’t be trying to treat/cure the illness that you are getting hospice for. You can be treated for comfort / symptoms. I would argue respiratory support is a comfort measure but not all hospices see it that way
Yes. They continue to pay for rental of all approved equipment as long as the person continues to meet criteria for needing it, just as they continue to pay all medical costs not associated with hospice.
We have one hospice service in town that treats trilogy as 'life extending measure' and won't allow/pay for it. Another hospice service supposedly sees it as comfort measure. I still have to call them and confirm.
Does anyone have a list of good questions to ask hospice services when you need them for an ALS patient?
Regina, I was trying to find one of the recent threads where we listed questions to ask and haven't yet. Basically, what is your approach to helping out (who shows up to do what), what is the philosophy and practice around the end of life (is it "stop measuring morphine" on request, or still regimented, for example, and how closely they will work with you, the CALS, vs. their own protocols), if there is a religious component, does it mesh with yours, etc. And of course if the Trilogy is supported when used non-invasively.
I would test their ALS knowledge and comfort level. Whether by asking or stating, they should know that supplemental oxygen in ALS generally shortens life since it accelerates CO2 retention, but is sometimes used palliatively.
It is really about your comfort with them as with any health professional. You don't have to articulate everything as much as listen/watch. If the person they send to explain their services is not a clinical professional, that's a red flag, too.
My husband is on hospice and has a trilogy, He had the trilogy before he went on hospice, it is non-invasive. Hospice has been a welcome addition as I had no medical background when this began and was basically responsible for educating myself, finding resources and forging a path, the last few years, pretty much on my own. It is nice to have a responsive group of medical professionals a phone call away.