What is appropriate for ALS Home Hospice?

[nluedeman]

My mother has been in home hospice for 8m and 7 days ago had what appeared to be a minor stroke - she is now completely paralyzed and we're not sure if she's aware. She's only had ~4oz of food in the past 5w via the PEG tube hospice recommended last fall.

Hospice wants to continue meds (morphine, laxative, and a benzo) via the PEG (flushing it with water each time) and nebulizer treatments which I understand will just extend her life. She does have a DNR on file.

Is this normal? The nurse said liquids won't prolong her life because we live in a humid area and her forced air is moisturized...but this is in direct contradiction to everything I've read on VSED. What is the appropriate "protocol" for a full paralyzed ALS patient (if there is one)?

 

[affected]

I'm so sorry for what has happened.
The PEG will need a little water flush with each lot of meds given. If you wanted to stop this, could they give the meds through patches and/or injections and stop all PEG use?

 

[lgelb]

I'm very sorry. If I understand correctly, she is not able to communicate at all, there is no hope that she will be able to, and you are taking her wishes from her DNR. Of course, it is not correct that hydration will not prolong her life. If you decide to end hydration, you can still provide comfort smoothing ice chips at her lips. If she is comatose or becomes so, she will not be aware of any discomfort.

By "forced air," if you mean BiPAP, you're right, there is no relationship between humidified air into the lungs and liquid into the stomach.

You (as, I presume, the health care proxy) have the right to ask that the laxative and neb treatments be stopped. You also have the right to send hospice packing if you choose. It is really up to you, not anyone else.

There is no "protocol," only your best instinct about what your mom would want at this stage as regards life-extending treatment, and the rest is about acting as if she is at least somewhat aware, talking to her, bringing people meaningful to her to say goodbye, playing her music, lighting candles, whatever may help ease her passing.

Best,
Laurie