I came across this (on reddit) regarding the choice of using or not using a PEG tube when swallowing gets difficult - I thought it may help someone here (text follows):
(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.
Written by
sammy90210
To view profiles and participate in discussions please or .
Very interesting article and i must agree that sometimes it is appropriate treatment. But after seeing someone asperate with a peg fitted i asked why the peg was fitted in the 1st place. And yes if a peg is fitted they are duty bound to use it for nutrition wich can prolong life. After my Brian found out they can keep him going longer then he wants he has said no to a peg. Janexx
jzygirl, the main problem is when a person cannot eat, drink, talk, walk, communicate, suffers from constiptation, dry eyes, dry throat, excess mucus, dry throat etc. - the main issue is they can't even swallow their own saliva and it leads to repeated choking requiring deep throat suctioning every few days which is nothing less than torture - I've seen my dad suffer and it shook me up... it's just not worth it if everything else in one's life is below normal
Sammy even with the peg they still produce excess mucus and can still asperate on that. I think it is a personal choice. When it was 1st mentioned to Brian he was ok yes lets do this now. But after discussing it with the surgeon etc and they said that it was not necessary at the moment he said good because he has decided to not have it. As he said i am going to enjoy my food for as long as possible. Janexx
jzygirl, with the PEG it's actually much worse - there is thick mucus or running saliva, either of which can cause choking - it gets stuck at a bad place - it can't go up or down and has to be taken out via very painful/torturous throat suctioning - my dad would be shaking all over and have tears running down his face, it was so bad
And we don't realize it but just eating and drinking gives one a HUGE boost in cognition - even if it's a small morsel of chocolate or a sip of water
Plus, PSP patients are already depressed - and taking away food and water will make it much worse for them
And if you cannot eat or drink, AND you can't talk either that's a terrible state to be alive in.... everyone's PSP is different, in my dad's case all his body was failing together so a PEG tube was definitely a bad idea
Sammy even the surgeon said all the time he can manage to swollow food it will keep the swollow reflex going and the longer he can keep that going the better. Because that way he will have less chance of choking and asperating and i must admit he is doing well at the moment. Janexx
Thanks for the info, Sammy. PEg has been deep on my mind the last few days and my husband and I must consider PEG another transition through life, not just one to death. I like how you said it, It should prolong life , not death. And B is not ready for death though he scares me to death everytime he chokes!!!! I will look at your sites you've shared and see how this might apply to our situation.....
You are welcome - my dad had his carpidopa-levodopa (sinemet) stopped, and his PEG was the only thing keeping him alive - another neurologist restarted it and he can eat/drink now and talk very softly so we are avoiding to use it - but I've seen what it does to a person who has everything else in his body failing, speech, walking, cognition - and it's just torture to keep someone alive in that state - please see my other posts from before for a perspective
difficult questions, we have found the hospice invaluable in posing these difficult questions and putting them in a document for planning. health power of attorney is very important , this enables the at to have a voice even when capacity is gone.
Other people have posted below too - if a person has other aspects of life that are positive like they can walk, read, talk a bit, communicate, then in that case a PEG may come in useful but if everything is slowing down, then I wouldn't recommend
Thanks Sammy, the articles back up my experience. PEG was a last option, my wife was and is still mentally active, able to let her thoughts and wishes known, but a year ago she started to lose the swallow reflex causing aspiration, choking and coughing on any food (even completely puréed), she lost over 30% of her body weight in 2 months. We were initially given a nasal gastric feeding tube to stabilise her weight that was definitely nil by mouth but the PEG allows us to take bulk of food through the tube while treats or small amounts of puréed food via mouth. Small amounts is half teaspoon.
She has had the PEG since Apr and it has allowed a fuller life for both of us but it was discussed with nutrician team, family, I read her articles and it was M's decision. She was not ready to give up life but was tired of the food fights so the PEG has provided relief for her (and me) allowed her to recover strength and go out again.
We have a bolus feeding solution I use a syringe to feed and medicate her 4 times a day, we like it as it provides us with private time together and it is so relaxing for M. The alternative PEG feeding method is mechanical, a pump driver feeding overnight or from a backpack during the day I am sure this is great for some but I like the intimacy of the bolus and it suits us.
The main thing from the articles about tube feeding is that it must be the patient's wish. The PEG feeding must be backed up with mouth feeding even in small amounts a day to provide taste experience, I give chocolate drops, jam honey or soup at least daily depending on choke or coughing. Though I think the 53 day average for life expectation with a PEG is probably a dementia experience definitely not a PSP experience.
Thanks again for the informative articles, PEG feeding is not to be dismissed but has its place in care of our loved ones but only when it is needed and they can accept it.
Thank you Tim for the great perspective - my dad has very poor cognition, cannot walk, cannot sit up for long, has hemorrhoids, suffers from constipation sometimes - his condition is much better since he resumed his carpidopa-levodopa i.e. he can eat and drink and communicate a bit - but before he couldn't at all and it was horrible for him and for us to see him like this - the main problem is that in such a situation saliva and mucus become a huge issue, there is no way to reliably keep it normal - and such a person starts choking on the mucus every few days, requiring suctioning - my dad hated it, he would bite the pipe and push and try and kick me and the time he did get deep throat suctioned, he was in so much pain and distress, it broke my heart - if there is some food/water coming through the mouth, then the quality of life is so much better - if it cannot pass at all, then it's a totally different life and it's just torture to keep a person alive like that - but since a PEG is already there, you cannot stop the nutrition... so when do you really stop it? That's the question that I cannot answer - since I know the Sinemet will stop working one day....
Thanks Sammy90210, my wife not as far down the PSP road as your dad, but has the thickened saliva causing chokes, coughs and a little aspiration. We are not able to use a suction device as her bite reflex it very strong so impossible/dangerous to try to tube her. You are lucky Levodopa is still effective but it is wise to monitor it.
It sounds a bit heartless but has your dad signed a "do not resuscitate" form? Needs to be done with his GP or consultant. He has to be able to make his wishes known so should be done soon if he has poor cognitive responses. This allows the professionals to stop feeding and provide pain relief only, when time comes. Read up on NHS site. It is to do mainly with CPR after heart attacks but according to our GP our local health board also use it for treatment of life threatening conditions such as pneumonia,
I echo everything that Tim (Amilazy) stated. My wife is only 54 years old with late stage PSP. She's had her PEG for 15 months and if she didn't have it, I'm sure she would have passed 13 or 14 months ago. She was dropping weight fast, and once we got the PEG, she started gaining weight and has been stable for the past year. My wife is still fairly mobile with my assistance and we still like to do things together (go shopping, go to church, etc). We use the mechanical device at night (similar to an IV machine), where it slowly drips the feed into her belly. I do some bolus feeds as well, and when her swallowing is at it's worse, I use to to administer her meds. But right now, she's been able to swallow her meds, along with nectar thick water. Several of her pills require swallowing, as they can't be crushed due to being time release (Aricept, Namenda XR, Microbid).
It was a tough decision to get the PEG and her neurologist didn't recommend she have one placed. But after research and discussing with my wife and our immediate family, we decided it was the right thing to do for our situation. It was a very simple outpatient procedure and she never complained of any discomfort.
Note that once you're on Hospice (in the USA), they will not allow you to have a PEG inserted. But if you already have one in place, they will support it and even provide the feed and supplies. And I've been told there is a point in time where it's too late to have one inserted, such as once the individual is so weak, they couldn't tolerate the procedure.
A side now, we have one week left before we depart for Dallas, Texas, where she will be screened to be a potential candidate for the clinical trial C2N. I am so excited that I can hardly stand it. The potential of it actually curing her of PSP is a real possibility. I'll be sure to keep everyone on this site aware of our progress. To God be the glory!
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
New here/ feeding tube question
does having a PEG really mean less quality of life
Feeding techniques and moving to PEG.
