Carevdad Asked October 2022

PEG for feeding. Anyone have experience with this?

Any caregiver had to make this decision? Dad had a stroke and had difficulty swallowing. Speech therapist made recommendation to do a nasal tube but they tried 5x and dad refused after 6th. He then had a seizure next morning and whatever consciousness he had was gone. He's no longer able to swallow meds with small spoon of apple sauce. I bought up PEG and doctor ordered the procedure. Am I doing the right thing? Or best thing? Is it too early?

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I had to face this with my 83-year-old Dad when he could no longer swallow due to a series of small strokes. Even with a feeding tube, he had suffered significantly and any quality of life he would have, would be gone or greatly diminished. The PEG would have kept him alive, but I knew he wouldn't want to live like that.

I took the decision not to have it done and moved him to hospice. He died 3 days later. I still think it was the best decision I could have made because it is what he wanted. Before you agree to the procedure consider how invasive it is and the significant impact it will have on his life. If there he won't improve and the only reason for the PEG is to keep him alive, consider if this is the best option for him.

Helpful Answer (10)

Given your previous posts about your dad's worsening dementia, a feeding tube seems like unnecessary torture.

Did he ever make his end of life wishes clear in a written document?

Helpful Answer (7)

No he did not. And the diagnosis of dementia never confirmed. He was diagnosed with bladder infection which cause delirium and discharge diagnosis was confusion. This time covid and potential stroke, then seizure and can’t swallow

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A patient in his condition will deteriorate quickly if nutrition and water are not introduced. Without being conscious or the ability to adequately swallow, a feeding tube via abdomen will maintain his nutrition and strength. It will be used for oral meds and hydration. It is far more comfortable for him than a nasal tube, and eliminates the risk of aspiration into the lungs. You certainly took appropriate (compassionate) action. Maintaining his nutritional/medicinal needs will allow time for his health care providers to give a prognosis on his condition and expected recovery. At that time, you can decide on whether continuing a feeding tube is appropriate. That is usually when they reach end stage, hospice care. Be kind to yourself, the right decisions will be hard to make.

Helpful Answer (7)

Let go and just give him love. Hospice can carry the load, so that you don't have to.

Helpful Answer (7)

My mother had a peg feeding tube for four years. It was placed following a hemorrhagic stroke on the advice of several doctors who were convinced she had a really good chance of recovery. An NG tube is good only for short term feeding and very irritating to a person. A peg tube is a quick procedure and not irritating at all. My mom’s recovery, despite much therapy, sadly never came. She remained mentally intact but physically unable to do anything, and that means literally anything. The feeding tube remained, after all, how do you pull out a feeding tube from a mentally intact and aware person and make the decision to starve them to death? Not something anyone was prepared to do, not our family, not the medical team. The tube wasn’t wrong, it was done with hope of recovery, it wasn’t anyones fault recovery didn’t happen, no one could have predicted the outcome. I DESPISE the posts on AgingCare of “no feeding tube ever” It’s simply to big of a blanket statement to make when there are endless variations of what can occur in a persons life.
Are you doing the right or best thing? Only time can tell. You make the best decisions you can given the information and guidance you have at the time. Ask the doctors for their best judgment. I truly hope you’ll see progress and a great recovery soon if that’s what is possible. In any case, I wish both you and your dad peace

Helpful Answer (6)

Thank you. My dad will be 77 in 2 months’ time. He was fully independent but just a bit weak. On second day of admission he was ambulating and going to bathroom with occupational therapist. Next day they think he had a seizure after his stroke. He can’t even swallow crushed pills with apple sauce now. He just lay there unresponsive to command and no direct eye contact but he toss and turn and scratch his head or face. They tried nose tube but 5x. By the 6th he refused. Then after he came into this state. The PEG was mine decision cause he is not able or unable to be aware/conscious to make decision. I don’t know, i feel he has a few years left in him and because of covid it brought on these conditions too soon.

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I refused to have a PEG placed when my sister had a major seizure likely related to her Alzheimer's Disease. My Mom had a PEG placed after she had a stroke (my other sister insisted on it). I was against it because there has been quite a bit of medical research showing that PEGS rarely improve morbidity/mortality rates. PEGs tend to get infected, especially if the patient becomes agitated and pulls at it. My view is that PEGs work best when the patient suffers a temporary condition that precludes them from swallowing safely. When the patient is severely compromised and their trajectory is "dim", a PEG artificially prolongs their life. And, it tends to be much easier to put in a PEG than to discontinue the PEG - whether from an emotional or religious standpoint. Gastric tubes also work well for short-term feeding needs.

Helpful Answer (6)

Feeding tubes may give a little more time but does not really affect the overall death rate. I think you need to ask the doctor if they would be surprised if he was around a year from now.

Are you expecting that he will suddenly wake and he can go home to a normal life? You may be looking at a life in a nursing home. You really need to find out the severity of the stroke.

Helpful Answer (5)

They don’t tell me much about extent. Stroke is not even confirmed on imaging. All they know is he is covid positive, potentially a stroke and then next day seizure. He was ambulating and was able to go bathroom with occupational therapist by his side one day after admission. Next day he just lay there mostly eyes closed and not following command

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You don't mention your fathers age. My mother is in SN. She just turned 92. She has become completely immobile. I find very little quality of life. Everything is becoming more difficult. It is sad to witness each week.

I think you have to ask yourself if you want to see your father in such a condition. Others have mentioned important points of view such as speaking more thoroughly with the doctor as to his future health wise. It is also wise to understand more fully the affect of the stroke.

Sometimes a life is over before the body gives up. I don't see the point of an elderly compromised person having a feeding tube.

Helpful Answer (5)

He will be 77 in 2 months time. Good normal quality of life last week other than a bit weak. And he was ambulating with occupational therapist the second day after admission.

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What are the doctors saying about your dad's prognosis? Do they feel he will survive and thrive? Or do they feel that since he lost consciousness the other morning and hasn't come out of it that he will never be any better and will die soon?
Those are questions that need to be answered before you make the decision about having a PEG put in him, because if he's not ever going to get any better, why put him through that?
If the prognosis is not good, you may want to instead talk to his doctors about either putting a PICC line or Midline in his arm so they can at least administer any medications needed, and get hospice on board for his comfort care.
And had your dad made his wishes known(MOST form or advance directives) about to what extreme he wanted to be kept alive? Hopefully he had and that just helps make your decision making a bit easier as you will be doing his wishes instead of yours.

When my husband at the age of 48 had a massive stroke and was having swallowing issues they put a PEG in fairly quickly only to have to take it back out a week or so later as my husband began to swallow on his own again. But my husband was much younger, and while he survived the stroke it left him with many permanent disabilities that he lived with until his death at the age of 72.

I'm sorry that you're having to go through this, but at this point I would do what is best for your dad and what you know or think he would want done.
God bless you.

Helpful Answer (4)

They have no prognosis. They can’t even confirmed on MRI because he moved a lot even with sedation. CT few days early did not show. The only thing they know for sure is he is covid positive and unvaccinated. He is on stroke unit at hospital and apparent he had a seizure the next day as well and put him completely out. He is now on IV anti-seizure med. He can’t swallow. Tried nose tube put they could not put in when he was conscious so it was brought up to me earlier, PEG. He closes his eyes all day and if he do open, he does not follow command or look at you. Tonight he can squeeze my hands slightly. But leave to himself he toss and turn in hospital bed a bit. He is 76. Last hospital was last year for bladder infection then he developed delirium. When he was discharge weak but independent up until a few days ago. Thank you for your reply

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