About to be cut off from hospice!

[hangingon1]

Hospice has informed us that as of the 10th of July we will be cut off from their care. I was in unbelief. My wife is a 3 and a half yr. ALS victim and has increasing problems with swallowing. Her problem is that mentally she is ok and has voiced that diagnosis to the hospice nurse. He never asked for problems like increased swallowing difficulty ( only the last 6 weeks) so now she is deemed too well to receive hospice. I told my wife to tell the truth to him, but she embellished it and it has gotten us in hot water. Hospice will indeed cut you off if you are not showing a decline in health. We all know that in ALS terms downturn can mean a long time. The trouble is that THEY have no clue about ALS and its ways. If you have someone who is chipper and telling the Hospice people that they are fine you need a word of caution. You will be cut off for their idle talk.

 

[Danijela]

Others have dealt with this situation, hope somebody steps in as I'm unsure how it works in the USA. D

 

[brooksea]

Who was the original physician that wrote the script or referred y'all to hospice? I would get back with him/her and explain your situation. (I can't see Dr. Glass or Khan not recommending hospice.) You can always go with a different hospice agency. I don't know, I might look into quitting them before they quit you. Becca had mentioned something about changing hospice agencies. I will see if I can find the thread.

 

[brooksea]

Where did my post go? Oh well...

I would change hospice agencies before they cut you loose and interview another to hire them on with doc referral.

 

[brooksea]

Here is a thread that might be helpful:

https://www.alsforums.com/forum/current-caregivers-cals/16759-urgent-hospice-questions.html