PEG for feeding. Anyone have experience with this?

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PEG for feeding. Anyone have experience with this?

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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?

Diet & Nutrition Feeding Tube Stroke Swallowing

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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.

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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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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.

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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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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?

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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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No to feeding tube

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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.

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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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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

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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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Doesn't dad have an advance directive? What are his wishes for end of life care? Does he want extraordinary measures taken to extend his life, especially with dementia involved? The LAST thing I EVER would have done for my mother was anything to extend her life since she had dementia and lots of other heart and health issues too numerous to mention. She'd been poked & prodded enough in her life, and hospice was what I wanted FOR her: calmness and peace and no pain at the end of her life. Not more pain & Suffering at the hospital, but the exact opposite of that. So that's what happened: she got evaluated & approved for hospice care and all the poking and prodding stopped, thank God. 2 months later, she took to her bed b/c she felt very tired, and immediately became semi-comatose. She passed peacefully 1 week later, with hospice on board to keep her comfortable and calm the entire time.

What is your dad's long term prognosis? With dementia at play, it can't be good at all. Nobody can tell you if you're doing the 'right' or the 'best' thing for him, but ask yourself this question: if this were you in his shoes, would YOU want YOUR life extended with PEG tubes and the like?

I know how hard all these decisions are, especially if there's no advance directive from dad. But if he's in the hospital now, or has been recently, they will have asked him about a DNR and things of that nature. Take that info to make your decision from.

Best of luck

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The Dementia was never a diagnosis or confirmed. He had bladder infection and delirium and the discharge was confusion. No he never have any advanced directives. He could not swallow after covid, and potential stroke. Doctors could not tell me anything except confirmed is covid. They don’t know why he is in this state except potential stroke and followed by seizure and can’t swallow. They could not get nose tube after 5 tries. He did refused the 6th try when he was conscious.

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If my LO had a good* chance of recovering to a good* quality of life, I would explore medical treatments.
*Good* being very subjective.

If my LO had a very poor chance of recover to a decent quality of life or a life-limiting progressive illness, I would thank the Doctor's for their service & advice but welcome in Mother Nature. Trust her to guide & be at peace with it.

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I don’t know prognosis and doctors never said anything but he is 76, fully independent good quality of life before this

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If your Dads Dementia is pretty well progressed, I would not do a feeding tube. I would call in Hospice and let nature take it course.

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He does not have a diagnosis of dementia. Last time he was diagnosed with bladder infection.

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What does your father want? It sounds like he was trying to say NO to the nasal tube. Call hospice, have them do an assessment/evaluation of your father for hospice care. If your father is able to speak or communicate with head nods , hand squeeze etc. then ask him if he wants the tube feeding? If he is not able to communicate his wishes, has he in the past indicated what those wishes would be. Does he have a living will? Are you the POA? What is his quality of life now, what does he consider a quality of life ? Speak further with his physician and speak with hospice for another option of care.

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I feel that i am at the hands and mercies of the attending physician who thinks that my dad doesn’t want to swallow. I can’t believe that the physician bought up the last admission when we signed out against medical advice. This was only because he has a history of delirium in hospital and he was there waiting and waiting for psych that promised and promised but never came to see him. Psych because he was delirious due to his bladder infection. At our own family doctor’s advice to bring him home because he would develop delirium if he stays longer. Plus he was only given antibiotics which could and he did taken at home. Please don’t use the past against him but i guess it’s too much to ask because the doctor his human and regardless of oath you still judge.

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I thought I had read dementia somewhere on the post - my apologies. Although UTI can turn nasty, I imagine this history is not of any relevance to the current situation.

If only 76 with previously no other serious conditions or life-limiting disease - well it is all going to depend on the severity of the stroke.

Stroke varies considerably. Some are milder & leave little trace. Some leave slurred speech, word finding problems, a weak hand. Some take all speech, bring hemiplegia, mood disorders.
The most severe will cause loss of consciousness with no recovery.

Get as much info on the severity of the stroke. Then wait & hope Dad wakes up I suppose is all you can do.

Has Dad has reached a time when he needs a PEG to reduce malnutrician while you wait?

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Thanks for your replies. They are thinking of PEG in a few days because he can’t swallow. No one tells me the severity of stroke cause did not show up on CT and MRI unsuccessful cause he moved too much. They suspected stroke, then a seizure the next day and now just laying there not following command. With stroke alone, the next day he could ambulate with assistance from occupational therapist and go bathroom and say few words. After seizure, he is mostly closed his eyes and don’t follow command anymore.

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Caredad, you say that your dad had a good quality of life before this hospitalization.

Had his relentless delusion that your mom was having an affair ever resolve?

I understand your distress at the current state of his health. Has a speech language pathologist been by to assess him?

I would ask for a different Hospitalist to be assigned to him. If you get nowhere with asking nicely, call the Patient Advocate and insist.

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I think dad had other strokes that weren't noticed and caused his weird delusion about his wife. It happens in about 30% of stroke victims.

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A seizure 24 hours after a stroke can happen. You did the right thing with the feeding tube as dyspagia (spelling) is common after stroke than seizure. Usually it takes about 7 to 10 days for swallowing ability to retun but sometimes up to 6 months.

The speech pathologist should be doing exercises to help strengthen his throat muscles so hopefully he can eat again on his own.

It sounds like the doctor is just writing him off so you will need to continue to be dad's advocate (like you have been doing) and fight for him.

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"You’re also at increased risk of seizures if the stroke is severe or occurs within the cerebral cortex of your brain". From Healthline.com

Watch, wait but keep asking questions to the Neuro team.

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You keep mentioning his bladder infection. Have they tested him recently? These type of infections tend to be more serious in a male than a female. It can become septic and kill. I would have him checked again.

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Yes they have tested him for bladder infection and any other infections in general but he does not have any bladder infection this time, Infection is ruled out

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Hi,

My mom is 78 and after spinal surgery has acute dysphagia as a result with no time frame for resolution. Could be weeks, months or never 😢. After two weeks on TPN she and family made the decision to do a PEG tube. I can't believe that doctor said your dad doesn't "want" to swallow!

Sounds like your dad is relatively young and was OK before for his age. Just like my mom minus the intense spinal pain which was was why she elected surgery, who knew this would be the nightmare outcome.

My mom is now in rehab after a month in the hospital, it's been traumatic, she hates it esp at night and in the morning it's like she's gonna have a nervous breakdown. I suspect hospital delirium.

All of this to say I think pending an uncertain outcome go forward with the feeding tube. Worst case he will swallow in a couple days and it will have been for naught. These decisions are very difficult I'm sorry you are going through this. I know my mom's situation is not an exact parallel as she is able to communicate her wishes and we are certain of her physical prognosis, unlike your dad.

The procedure itself was not terrible for her even after all she has been through, that was our biggest fear another invasive procedure...

Will be thinking of you.

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Carevdad, any change or improvement in Dad's condition? Sending you kind thoughts today.

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HI dear...gone through your trial..so sorry about what your dad is going through..the medical team'll do the procedure, obviously, of inserting the peg tube..
Peg tube is a good option in the situation where dad can't swallow.. at risk of aspiration..Not too early..your dad can still be regularly assessed for swallowing..

-These are my recommendations:
-Insist that a " girdle" be placed on top/around after to avoid that your dad pulls it ...
- Peg tube are known to get infected, under ,so you 'll have to daily : check ,clean with sterile water,put small dressing around....Nurses should teach you that..
- you'll probably use a "pump" so arrange in advance the space at home and get help..from visiting nurses etc..so you can get respite..

- Important..Important to Flush with water before and after feeding.
All the best for you& dad..

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When did your dad have a stroke that resulted in his conditions? I read that he did not have a health directive to make his wishes known, and that situation may cause expensive legal issues if he really does not recover.

With my situation, I've updated with my wishes known with three relatives and had it registered with Kaiser to not prolong my life by machines if full recovery is not expected in one day. That includes feeding tubes.

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What legal issues are youtalking about? If a patient does not have any advanced directives, the next of kin can make decisions regarding their loved one. First spouse, then children. Never in my years of caregiving have I ever had doctors not listen to family members wishes. No one needed guardianship, etc.

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Sorry that this is your reality at the moment. At the very least I would insist on a different hospitalist. I wish I had done that when my brother went into the hospital in 2019, awake, aware but very weak from bladder cancer treatments and was dead 8 days later from sepsis.

If your dad can communicate with you in any way, then ask him if he wants the PEG tube.

Don't be afraid to stand your ground and ask questions.

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IF there is the possibility (a realistic one) that he will recover then I could understand the feeding tube. And I would do it on a trial basis.
IF there is no chance that he will recover I would not do the feeding tube.

Over the years had your dad ever expressed his thoughts, wishes if something were to happen? Maybe even in an off hand comment about someone he heard or read about. That might give you a clue as to what he would want.
What type of person has he been through is life? Active, independent? would he want to be kept alive via tubes?
Search your heart, your mind. Listen to both, but as difficult as it is, allow your mind to make the tough decisions.

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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.

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My father was 90 when he got sick with MRSA endocarditis and sepsis - he stopped eating and drinking and were going to send him back to rehab for 8 weeks of antibiotics(that might have helped him) but needed a feeding tube,picc line, catheter etc - developed bed sore and was severely agitated ,deliriousand afraid everytime a dr would come near him, etc etc i chose hospice and he died in 3 days(they stopped life saving antibiotics....i have had PTSD from this decision - severe ptsd but i know that if i put in tube and he suffered more and died would have had PTSD from that as well...your dad is young so its differant..my 83 yr old aunt had a severe stroke in Feb 2022(was driving day before) and had brain surgery and was in a coma for 3 weeks.....had peg tube for a few months and then started eating again - but left side body paralyzed...she is now in assisted living, in a wheelchair but eating and drinking and doing ok.....

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You made the right choice for your father.

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My thoughts are with you. There is nothing to prepare you for the moment you have to make that kind of decision and you will forever question yourself no matter which choice you make.

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What is PEG? Enough with the acronyms...spell this stuff out.

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Google it PEF feeding

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A PEG (percutaneous endoscopic gastrostomy) feeding tube insertion is the placement of a feeding tube through the skin and the stomach wall. It goes directly into the stomach. PEG feeding tube insertion is done in part using a procedure called endoscopy. Feeding tubes are needed when you are unable to eat or drink.

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..and to make money for the hospital and Gastroenterologist

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

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There’s no reason not to leave him with the peg while he recovers, or not. You can still stop the feedings if the diagnosis changes. It’s not a black or white issue. Let it by him time and watch and wait. After a month, make a decision.

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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.

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Hi, I can imagine this is a tough decision for you. My dad had a possible stroke in 2020 and we were left with the only options of putting a trach and PEG tube. We were hopeful that they'd be temporary and he'd recover. We're going on 2 years now with both tubes still there but he is in a wheelchair now and eventually passed his swallow evaluation so he eats regular food when he's able. We just use the tube for meds and water. I do wish we had discussed his end of life care before he got sick though. I really can't say what the best decision is for you but I just wanted you to know that the doctors can't truly predict what will happen. They aren't God. They said my father would never get out of bed or eat again and here we are. Keep communicating with your dad even if he seems unresponsive. He just may guide you to making the right decision.

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PEG for feeding. Anyone have experience with this?

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