Kicked off hospic

Status
Not open for further replies.

chally

Very helpful member
Joined
Apr 23, 2015
Messages
1,265
Reason
PALS
Diagnosis
02/2015
Country
US
State
wv.
City
renick
Well I got the boot off hospic today cause I am getting a feed tube Monday.
Feels kind of cruel to do this right when someone is about to have surgery but oh we'll probably just meant to be! Anyone else have this happen?
Chally
 
You should be able to back on hospice.
 
I'm sorry. Did they say that you could go back on after the tube? I have known people with hospice go to the hospital with a fracture or other acute event. Hospice stops during the hospital stay and medicare covers but they can get hospice back after the event is over and they are discharged. Sadly, it is not as if the tube will cure you If you had already had the tube would they have refused you hospice?

Who is covering your hospice cost? VA or medicare?
 
Va covers cost. Don't know about getting back on after surgery . Yeah not like this a cure, thought they were about comfort well duh!
Haha think I 'll just laugh this one off. Thanks everyone. Love ya chally
 
Chally...James Haley in Tampa has a comfort care unit. You have a private bedroom with sleeper couches, kitchen access etc. It may be worth looking into for you. Also, contact your social worker. The peg can be used for meds administration only. I dont know if your plan was feedings as well. If only for meds it could be argued it is palliative care.
 
Chally if they were giving you good services, please find out quickly if they will take you back on after the procedure is done. Laughing it off is great, you have such an attitude and I love it. Don't let it just slip away however, the person who told you this may well not have told the whole scoop xx
 
I would call and ask when you can go back on- the day after you come home? It really should just be that they don't cover the hospital and the surgery so they had to discharge you to get it paid for
 
Chally,
I've spoken with many PALS who have gone on and off hospice multiple times. Most of them were hospitalized when they went off. After they got home, they went back on. Even ones with invasive ventilation!
 
Chally I just started Hospice. They explained to me that "any" trip to the hospital would result in a temporary discontinuation of Hospice. Once you are back home and not receiving outside care from home health or anyone else, Hospice will step back in.

Who's doing your tube and what kind are you getting?

Vince
 
Thinking of ya Chally, if I've got it right today your time was tube day (it's Tuesday for me).
 
My husband was denied hospice due to a noninvasive ventilator. They instead told me about a bridge to hospice program and palliative care available to him. Same Nurses and Drs run this program. He will be eligible for full hospice when he is ready to stop use of the noninvasive ventilator, and stop feedings.
 
Marie, a "non-invasive ventilator" should not be a barrier to being on hospice, though you may need to educate the agenc(ies) you talk to. Some don't understand that NIV just means portable BiPAP with a backup rate.

If this agency's story is really that "full hospice" doesn't begin until he discontinues NIV and feedings, too, I'd find another agency -- they don't seem to understand that NIV is a comfort measure as much as anything else, and from what you say, don't really understand ALS.

A slow uncomfortable death, as would result from d/c'ing BiPAP and feedings ahead of time, is exactly what hospice supposedly helps prevent. If you read other threads, you will see a better way to handle the end of life.

Best,
Laurie
 
Frank's palliative care physician told us that he would have to stop his tube feedings to go on hospice, which is totally unacceptable to us. However, I have not confirmed this with the hospice agencies in our areas.

Sharon
 
Sharon, Call as many hospices as you need to because EVERY PALS in my support group uses a Trilogy and none have been denied hospice. Some go on and off. Frank should not have to stop tube feedings as this can lead to suffering and hospice is supposed to mitigate suffering. Oh how I wish these doctors and other health care providers would understand ALS.
 
A feeding tube is not a curative intervention and again, at least one hospice in your area should support it.
 
Status
Not open for further replies.
Back
Top