Ethics mtg....I'm overwhelmed

Fran

Former desparate mom
Sending good thoughts.
Just know that these professionals deal with this issue all the time.
Draw strength from knowing what husband would want and all of us sitting on your shoulder.
Hope this brings some peace.
 

amazeofgrace

A maze of Grace - that about sums it up
embracing you in my prayers and heart, you are exhibiting an astounding amount of grace through all this.
 

Wiped Out

Well-Known Member
Staff member
I'm so sorry you are dealing with this. I'm here with you too, and continuing to say many prayers.
 

timer lady

Queen of Hearts
Your support kept me going through this meeting (one I never want to attend ever in my life time). I was emotional yet firm with husband's final wishes. The DNR remains in place & the DNI has been added according to husband's wishes. As the antibiotic was non-invasive the medical team has refused to remove that therapy. At this point, the same with the feeding tube. If husband takes a downard spiral those 2 issues may come on the table again - non invasive or not.

In the meantime, CAT scans & EEGs were being ordered to determine husband's brain activity/function, etc.

(It was extremely intimindating to have 16 people sitting around the table listening to you explain this very somber & serious issue. I kept reminding the ethics group that there is an entire family behind husband that is being affected as well.)

I believe I finally have a firm handle on husband's medical condition ~ it seemed like pulling teeth though to get all the information from the medical team. Too many doctors dealing with just one body part. Just so you know, today end stage generally means terminal. It's a cleaner less emotional term for the MDs & families as a whole apparently.

Now it is up to husband's body to decide ~ he may be moved to an acute rehab unit by the end of the week. Depends on the pnemonia.

You are all one strong group of ladies & I could feel your presence in the room as I was speaking. Thank you.
 

Suz

(the future) MRS. GERE
Linda, did the docs perceive husband's waking up and saying a few words as a positive sign or one that has no impact on his prognosis at this point?

Suz
 

timer lady

Queen of Hearts
Suz,

Right now, the MDs are doing their ICU job - save his life. Everything is positive. No one saw or heard him speak except my sister in law Tuesday afternoon. While Steve "seemed" to recognize me there was a glaze in his eyes that made me wonder.

PT, Occupational Therapist (OT) & speech therapy have all been ordered. We'll see as he is battling the pneumonia & chronic ascites & esphogeal varices. There's talk of a shunt in his stomach to releive the ascites - again another measure to discuss.

What does keep him comfortable, out of pain with no aggressive measures mean to you?
 

Marguerite

Active Member
Keeping him comfortable and out of pain, with the liver problems as well, probably means morphine or other opiates. They're the safest for the liver. They could well be sedating him, or have been sedating him a lot to begin with. As you get used to them, they still knock the pain but don't necessarily sedate you so much.

The i.v. - necessary for ongoing nutrition and probably also how they're giving him the analgesia; giving him anything orally is not a good idea with the varices.

It could mean they won't interfere to drain the ascites, but if it makes him uncomfortable, they might justify it (a drain). I think you might need to be guided by the medical decisions of his team on the spot; if he shows signs of improvement, it could move his status from end stage to long-term/recovering. But I really don't know, I'm not the one there. It doesn't sound good, especially if he's not given any indication of staying off the grog if he does make a good enough recovery to drink anything at all. It does sound like it will be a long time before he's even permitted to sip a glass of water, let alone a beer (or stronger). Not only would his body have to recover, he would also have to have a change of mindset in order to be able to give up the drink.

It sounds like his liver is the main organ in deep trouble. The liver is also the internal organ most capable of regenerating; to a point. But it needs help, and past a certain point, it just can't do it. If your husband makes enough of an improvement, then he COULD possibly improve enough to be shifted from ICU, but it would be a very long time, if ever, before he could return to anything like a normal life. Not with the damage you describe.

If what your sister in law saw is the beginning of at least a partial recovery, than hopefully soon husband will be able to reinforce what you've been telling the doctors on his behalf ie no heroic measures. That would mean no getting the paddles out when his heart stops; no intubation if his sats drop slowly; just maintain status quo. In some cases it also means stop nutrition, but if he's already receiving it, I doubt they would withdraw it.

I'm so sorry you're all going through this, Linda.

Marg
 

judi

Active Member
Have you considered a hospice referral? That would give you the DNR/DNI as well as other protective mechanisms for observing your husband's wishes.

I'm an advanced practice nurse who deals with end-stage and end of life care on a daily basis. If I can help with explanations, please feel free to PM me.
 

dreamer

New Member
I thought of hospice as well. I worked hospice in my county for several years. linda you know I'm here. I've offered before & offer again .....say the word.......i would come & so would my friend who lives near you. many hugs
 

witzend

Well-Known Member
"Keep him comfortable, out of pain with aggressive measures" means plenty of morphine. I have had several family members go this way from alcoholism, and it is an extremely painful way to go. When the time comes they may "up his drip". Not a pleasant idea, but neither is dying in so much pain. Trust me. Even unconscious you know that it is awful for them. This is the "pay later" part of "play now..."
 

Shari

IsItFridayYet?
Linda, I'm coming in late, but sending prayers and hugs and everything I've got for you and yours.
 

totoro

Mom? What's a difficult child?
You are doing a great job, despite it being the hardest the job you have ever done, and certainly one you did not apply for.
Huge hugs again to you and the family.
 
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