Does PEG work?: Mom feels uncomfortable... - PSP Association

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Does PEG work?

pankaj911 profile image
21 Replies

Mom feels uncomfortable after taking liquids and usually coughs. She experiences hiccups too after liquid intake. We are considering getting my mom a PEG feeding tube on the recommendation of her neurologist. We are going for a second opinion and will decide after meeting with a gastroenterologist. Please share your experience on the following:

+ Are there any disadvantages of feeding via PEG? If yes, what are those?

+ Can we continue to feed her both ways wherein she continues to have solids/semi-solids orally from mouth and liquids can be given via PEG? The neuro confirmed that it's possible.

+ She's becoming weak by the day and taking liquids from mouth is becoming progressively difficult. Will PEG help improve her nutrition or food/liquid intake?

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pankaj911 profile image
pankaj911
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21 Replies
doglington profile image
doglington

If you explore the past answers there is a lot of experience about this.

If their quality of life is pretty good then many have good experiences with a PEG

For others, like my husband, he didn't want to prolong his life at that stage.

What is your mothers' wish. That is crucial.

Good luck, Jean xx

pankaj911 profile image
pankaj911 in reply todoglington

Hi Jean...thanks for your reply. I have read through some archived posts on PEG. My mom is not really in a position to decide, so we will need to decide for her. She mostly only repeats things or sings along hymns and songs.

kenh1 profile image
kenh1

My wife has been on an NG tube for over two years.. She was put on the tube whilst in hospital recovering from Aspiration pneumonia and looking very weak. We had asked for a 'best interest' meeting. I went into hospital the next morning to find her sat up in bed with a tube up her nose and a big grin on her face.

Advantages. A controlled diet. Complete nutrition. Prolonged life.

Disadvantages: No joy of food. Having to watch others eating.

All medication has to be liquid.

Don't know about a peg but NG tubes have to be changed every so often. A very simple procedure carried out in hospital as an out patient.

I don't know how it applies elsewhere but our hospital seems to interpret a signed DNR to include no surgical intervention. Hence the NG tube as opposed to a peg.

I administer medication through the tube. The feed supply company (Abbott) are brilliant.

Hope this is helpful, if you have any questions I'll try to help.

Best wishes Ken

pankaj911 profile image
pankaj911 in reply tokenh1

Thanks Ken! I will be sure to ask the Gastro specialist about the NG tube when we meet with him this weekend. Of course, for PEG there is a short surgery.

As for the disadvantages, the doctor told us that mom can continue to eat semi solids via mouth (as they don't cause her cough or any discomfort). So I guess it's going to be both ways.

Thanks again for sharing.

kenh1 profile image
kenh1 in reply topankaj911

That is good because your mom will be able to get a taste of what you are eating.

pankaj911 profile image
pankaj911 in reply tokenh1

true that!

kenh1 profile image
kenh1 in reply topankaj911

I mentioned in an earlier mail about Wiltshire farm foods providing puréed meals they also do soft meals which can be easily mashed.

Javan profile image
Javan

The peg is a super bit of kit, it ensures that there is enough fluid intake,nutrition and medication. This keeps your loved one clear of UTI and away from hospitals.

pankaj911 profile image
pankaj911 in reply toJavan

Thanks Javan!

sammy90210 profile image
sammy90210

pankaj, read through my posts and those of others - managing nutrition via a PEG can be impossible for some patients - and they try to pull it out sometimes, and you have to force them by holding their hands every few minutes - and the patient has to be at a 45 degree angle for 45 minutes , 6 to 8 times a day - they sometimes force themselves to slide and lie down and you again have to force them to stay up

This can be exhausting for the caregivers (you need at least 3 rounds of 8 hrs/day carers), usually family since carers-for-hire can be highly negligent of a patient that cannot commuicate

All this can be extremely distressful for the patient too, like being subjected to the torture/pain of being force held every few minutes for the whole

if your mom enjoys life i.e. reads the news, watches TV, goes out for shopping, plays with her grandkids but has problems talking/swallowing, then a PEG may be a good idea, otherwise it's prolongation of the pain and distress

however, there are both kinds of opinions about it, my dad had one and i am not in favor

Lastly, here is a response to my qs from someone else at another forum:

---------------------------------

(I'm not a doctor but I am a speech therapist who currently works with swallowing disorders in people with neurological conditions)

The best guidance I know of on this is the Royal College of Physicians (UK) report on Oral feeding Difficulties and Dilemmas: rcplondon.ac.uk/projects/ou...

I don't think it's a humane or not humane thing to do. I think that for some people it's the best thing ever and for some people the benefits are outweighed by the burdens.

In the UK we are moving away from the assumption that everyone will have a PEG tube. In fact, in the light of this report, I would say that the majority of people with dementia won't have a PEG tube.

However, there are people where their swallowing is impaired out of proportion to their overall condition. They might have a reasonable quality of life except for their very poor swallow, and they might be able to walk, do a lot of things independently but just not be able to manage to eat enough to maintain weight. Or maybe mealtimes have turned into an exhausting, stressful situation for everyone concerned, but the person still shows signs of enjoying other parts of their life. In those cases, a PEG is probably humane.

However, if the swallow is impaired in the context of advanced dementia and especially if the person is showing signs of significant distress, then I don't think it's humane. We are increasingly seeing this as a way of prolonging dying rather than prolonging life. And in fact the evidence suggests it isn't very good at prolonging life or preventing aspiration anyway.

If you want an American perspective, our NHS Trust have also adopted these guidelines from the American Geriatrics Society: ncbi.nlm.nih.gov/pmc/articl...

Good luck. It's a very difficult decision.

pankaj911 profile image
pankaj911 in reply tosammy90210

Thanks, Sammy!

Duffers profile image
Duffers

Hi there. My husband had a PEG. I was taught how to use it and administer food and meds. It kept him hydrated and his body healthy. It prolonged his life for nearly a year. The nurse from hosoital used to come to house to change tube. A simple procedure. I have no regrets about using it. The nutritionist who decided "recipe" was brilliant. Always listened to my concerns, and the company, abbott, who delivered food were always helpful. Good luck making your decision. Marie

pankaj911 profile image
pankaj911 in reply toDuffers

Thanks Marie. It's indeed going to be a very tough decision to make.

kenh1 profile image
kenh1 in reply toDuffers

Thanks for your comments. Nutritionists and Abbot are outstanding. I also have no regrets.

Ken

margh2468 profile image
margh2468

Hubby Leon has had P.E.G for almost a year, is booked in next week to get it changed. Definately prolonged his life, as he would have starved otherwise. No major issues with it, all meds go through it too. I dip my finger in a beer and give it to him through his peg, gives him the taste and satisfaction of having a beer, at happy hour at the care facility where he now is, once a month.

pankaj911 profile image
pankaj911 in reply tomargh2468

Thanks Margh!

kenh1 profile image
kenh1 in reply tomargh2468

I have contemplated giving my wife some wine but never dared. How much did you give?

I'll not give any until I have heard positive comments from others.

Best wishes Ken

margh2468 profile image
margh2468 in reply tokenh1

About half a bottle, just slowly let it go through the tube, stop start stop start, naturally flush with water before and after. Was also told at the beginning that he could have food/drinks by mouth but that was not possible as Leon choked immediately something was in his mouth, even the stuff to put on his tongue to clear the white coating from some of the meds. It just gives him the satisfaction of being involved in Happy Hour, which is great

kenh1 profile image
kenh1

You have just reminded me, a few weeks ago the tube was blocked and I had tried all the usual tricks, soda water Coca Cola etc. About to give up I poured myself a beer as it fizzed up in the bottle I thought why not give it a try? It cleared the tube instantly so I have given some alcohol and no harm was done.

Thanks Ken.

Kenfa profile image
Kenfa

My father was fitted with a PEG at the end of March. He still managed to aspirate and got pneumonia 2 weeks ago. Hes been in hospital with that and somehow got C. difficile as well. PEG we are finding is not fail safe. He would have probably died without it and after initially saying no to being fed that way, he changed his mind and wanted it. I think the most important thing is if the person can make the decision for them self, let them be the judge of what they want.

soozjj profile image
soozjj

Hi, my Mum had a PEG fitted in hospital almost 2 months ago and so far it's great, Mum was getting so exhausted trying to eat and drink enough before the tube was fitted. She still has small amounts of pureed food and drinks through the day but just for the flavours. All hydration and nutrition needs can be met via her Nutricia feed bags. Feeds her over night while she sleeps. She feels so much better. It's a very personal decision but Mum's happy she had it fitted.

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