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I'm caring for my 74 year-old father who had a stroke last August and is now in the hospital for among other things a fungal infection in the blood and pneumonia. His mind comes and goes and he had a PEG tube placed since he was in a coma for a month and now can't swallow. Unfortunately it looks like the PEG tube can't be used because every time it is it causes him to cough uncontrollably and twice he's gotten aspiration pneumonia. I don't want to him to not eat because I know that will be the end of him but I don't know if he would qualify for TPN feeding.


Should I fight to try something like getting his tube moved to his small intestine, getting a trach with the PEG tube, something else or should I start to look into hospice and bring him home.

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What would dad want? Does he have last wishes?

Not many would want a feeding tube, me included. Have you thought about having him evaluated for hospice. I would not request repositioning the tube.
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cg511973 Feb 2022
He told me when my mom died that if there was anything me or his sisters could do to try and keep him alive then do it.

And he already has the feeding tube, he got it when he was in a coma and they never took it out because he was in therapy to relearn how to eat.
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Just to clarify - a PEG tube goes through the skin on the abdomen, and liquid food is injected through it directly into the stomach. It therefore doesn't go anywhere near a person's throat, wouldn't cause coughing and wouldn't cause aspiration pneumonia. Do you mean a NG tube? - up the nose, down the back of throat and down into the gullet?

TPN feeding is intravenous, and if that's required you're in a different ball park altogether.

What advice are his doctors offering? I'm sorry he's having such a dreadful time, and you too.
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cg511973 Feb 2022
It's the PEG tube that they say is causing the aspiration pneumonia, apparently some of the stomach contents go into the lungs whenever they use the tube. I keep trying to get them to check the placement since it was pulled out once before but they just ignore me on that.

And during one of the times he was in his right mind the doctor did ask him did he want to try and continue the feedings and he said yes so as POA I feel like I'm letting him and the family down if I go choose palliative/hospice.
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You answered a very important question.
Your dad stated "If there was anything that you or his sisters could do to keep him alive then do it"
I am of the belief that QUALITY is more important than the Quantity of life. But if your dad wants the tubes, wants the IV's, wants a ventilator if necessary then that is what you do.
He would not qualify for Hospice if he wants you to try all you can.
HOWEVER
He can have a feeding tube put in and then go on Hospice and they will help, they will care for him and the tube. (They will not do IV's for hydration though.)

I think it would be worth talking to him again about his wishes.
I think it would be worth a call to Hospice and interview them and see what they say.

I do not envy you these decisions, they are difficult under any circumstance but more so since your dad has expressed his wish that you do all you can.
Even with that there is a finite amount of things that can be done.
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I'd look into hospice, either in a hospice facility (preferably) or in home. Taking this level of heroic efforts to keep the poor man alive is beyond cruel, in my opinion. Not being able to swallow, getting repeated bouts of aspiration pneumonia, and requiring feeding tubes is above and beyond life-saving measures, by anyone's standards, and should be discontinued for HIS sake. Hospice can administer comfort medications so he has NO pain or suffering whatsoever as he travels the final leg of his earthly journey.

You say, "He told me when my mom died that if there was anything me or his sisters could do to try and keep him alive then do it." You did everything humanly possible to keep him alive; and it's not working. You honored his wishes, my friend.

Wishing you all the best with what lies ahead.
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CG, I think you should push hard for investigation if he's aspirating during or after feeds - it shouldn't be happening. Is it causing him to vomit? Is the feed being given in the correct quantities? Or is there some other factor that is causing liquid feed to travel the wrong way up the gullet from his stomach and be partially inhaled?

Again, just to make sure we are talking about the same thing - the PEG goes through the skin of the abdomen and directly through the stomach wall. Even if it were dislodged or incorrectly placed, it still wouldn't be delivering feed anywhere near where it could get into his airways.

Horrible thought. They're not feeding him lying down, are they..? They wouldn't, surely. Surely not.

Your father made his wishes on the subject clear enough, I'd have thought. Keep listening in case he shows signs of distress and wants to make different decisions, but otherwise fight to get him the right care.
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