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  • Hospice care while on a ventilater

    Posted by James on December 27, 2023 at 3:03 pm

    My doctors at the ALS Clinic recommended that I might benefit by having palliative or hospice care. We are running into issues with the hospice’s agencies when they find out that I use a non-invasive ventilator. We have received guidance to be a little ambiguous about the use of a ventilator but my use of the ventilator is necessary. How do ALS patients get on palliative or hospice care when they are using an AVAP?

    Sandy replied 3 months, 3 weeks ago 4 Members · 4 Replies
  • 4 Replies
  • Roman

    December 28, 2023 at 2:40 pm

    Hi James

    I have almost 2 years using NIV. When I receive the NIV therapist only give me general instructions. I learned on the way.

    I got a sever infection because the cleaness of tubing system. Is very important clean tubes at least 2 times a week, change filters frecuently. If you NIV has humidifier clean the water container every day and of course put clean water.

    Palleative and hospice assistants have to know all about the NIV cleaness

  • Kim Belden

    December 28, 2023 at 2:47 pm

    Hi James,

    I know many PALS who use NIV and are on hospice. I would have my caregiver call your local chapter or your care team (neurologist or clinic). They may be able to help find a hospice that understands.

    • James

      December 28, 2023 at 3:44 pm

      I am curious if they had difficulty obtaining hospice care with being the ventilater. All the agencies in my area are telling me that Medicare wont allow using a ventilator while in hospice. it is becoming difficult to locate an hospice agency in a large metroplex in Texas.

  • Sandy

    December 28, 2023 at 8:55 pm

    My husband had an AVAP and was on Hospice. It was never an issue. He had Medicare and a supplement. It might be your insurance.

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