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My mom, 96, has dementia. She failed a barium test with X-ray and all fluids are going to her lungs. I feel the PEG will cause her more discomfort.

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NO! I completely agree with gladimhere. Prolonging or adding to someone's suffering at this stage of a terminal illness (dementia) doesn't seem like a good idea. Making mom comfortable (and as BarbBrooklyn recommends), you might seriously consider a hospice consult. If nobody's recommended that, I would question the medical staff's competence.
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Hi ElenaF My answer is a definite NO. No feeding tube and this is why.
I Cared for My Mama Who had alzheimer's for 03 years up until Mam passed away. What amazed Me about My Mother was that Her memory was sharp and crystal clear up until Mama died. Having been a Member of this A/C Site I asked Mother one day..." What is She needed to go to Hospital and the Doctor wanted a feeding tube fitted...Mama immediately said NO definitely NOT, Let Me go quietly into the night.... Im not going to live forever. When It's My time to go, leave Me be and let nature take its coarse. Mama was 87 years when She died, and Lived a full and fruitful Life. Let Your Mother go peacefully, as the POR Crater has zero quality of Life now.
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Just say no because sepsis in and of itself, is a life-threatening condition.
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When my mom was in the hospital at 90, I was warned by a Doctor, "Do not get on the medical merry-go-round." They suggested hospice. And reading her living will, she did not want a lot of medical intervention. As my neighbor, a Physician's assistant says, "Just because we can keep them alive, doesn't mean we should." She's 96. Just sayin'.
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First..if she has a DNR for all intents and purpose they are "suspended" during surgery. I was told when my Husband had surgery..."No one dies during surgery" during surgery they will do everything they can to prevent a death. Once in recovery the DNR will become effective again and no measures would be taken to resuscitate a patient.
Now onto the feeding tube.
I think it is a bad idea.
Your Mom has dementia and is at an advanced age and has other health problems. I would guess that she will sooner rather than later stop eating and drinking on her own. This is a part of the dying process. Having a feeding tube in can cause problems if the body is not digesting the food. You can have the food build up in the stomach or intestines. More constipation, vomiting.
With the feeding tube you will not know when she voluntarily stops eating and drinking making it difficult to recognize when to stop feeding her to prevent problems.
Add to the stress of surgery. And people with dementia do not do well with surgery due to the anesthesia it takes a long time to rid the body of the effects.
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There have been many studies done regarding PEGs for the elderly and the results were that apart from some family members thinking they have done 'good' it caused more stress and less life span.
I see that you have transferred her to hospice. She is over 90 her body is shutting down, pour food in when the system is not coping is very stressful on the ailing organs, let alone the pain of having one
Yes I had a PEG for 2 yrs and many problems with it. Some who are young and have an intestine that is working well, they seem to have less problems with leakage and infection at the site.
I hope your mother is resting comfortably
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Glad to hear you went to Hospice. M daughter is an RN in long-term nursing. We just had the feeding tube discussion. Hopefully I can explain it like she did. If the person is like ur Mom my daughter does not recommend the tube. It's considered just allowing nature to take its course. If one is put in and then family wants it removed that is now considered starving them and that's not allowed.
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PEGS should not hurt if all goes well with their placement, but the gist of the NEJM article is that on average, providing them in the setting of advanced dementia may improve neither quality nor quantity of life. They may not even prevent aspiration due to either reflux or vomiting. If the person would have to be restrained from pulling the tube out, that almost always tips the balance towards not getting one. If it helps any, having a PEG otherwise would not limit mobility and tastes of favorite foods can typically still be given by mouth just for pleasure.

I am very "pro" feeding tube in the right setting, even if it will not be temporary, but for the specific population mentioned in the article -severe, advanced dementia - they are largely correct, though a very few cases could be exceptions.
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My brother, not yet 60, had throat cancer several years ago. He had a feeding tube. The full intention was that he would eventually be able to eat again. He did. He no longer has the tube, of course. In my mind that is a perfect use of a feeding tube. A temporary measure to get over a temporary problem.

But for a person with advanced dementia? When there is no chance of ever being able to eat on his own? And if swallowing is now impaired and he is too weak to cough he is most likely close to the end of life? For this population I agree with the "experts" who have seen this over and over.
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Elena has chosen the option she feels will best make the end of her Mom's life the most comfortable.

However I do dare to disagree with the conclusions made in the article and the learned bodies who made the recommendations.
Common sense is the key here, so lacking in many clinical judgements especially concerning the treatment of the elderly. If the tube is placed in the jegunum (The first part of the small intestine) there is little chance of aspiration.
Fluid overload will only occurr if too much is given. Diarrhea may indeed occur if the wrong formula is selected. Of course there is no way of using tube feeding to ensure a patient's comfort or wellbeing and if the tube is causing distress remove the darn thing. Naturally local complications can occur which may include sepsis at the insertion site and leakage which causes redness and irritation but the use of a barrier cream prevents the inflamation and proper antiseptic care is essential.
Naturally assisted oral feeding is the best way to go but and it is a big but the danger of aspiration is very real especially if the patient has lost the ability to swallow properly and too weak to cough.
Feeding tubes are a mixed blessing but if there is felt to be a need to maintain a patients nutritional status with some chance of improvement it should be given careful consideration not dismissed out of hand. Hospice patients may be admitted with a PEG tube in place and if the feedings are continued it becomes obvious when the patient is no longer processing the food and that is the time to stop. They do also provide an alternate route for giving medications.
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This is from an article on this site:
"For people with severe dementia who can no longer eat on their own, feeding tubes are sometimes recommended to ensure adequate nutrition and avoid aspiration. However, the AGS, the AMDA and the American Academy of Hospice and Palliative Medicine (AAHPM) all caution against the insertion of feeding tubes for those with dementia. Instead, they suggest oral assisted feedings as the preferable option. "Contrary to what many people think, tube feeding does not ensure the patient's comfort or reduce suffering; it may cause fluid overload, diarrhea, abdominal pain, local complications, less human interaction and may increase the risk of aspiration," according to the AMDA."

You can see the entire article here:
https://www.agingcare.com/articles/treatments-older-adults-may-not-need-162262.htm
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Thank you for your update, Elena. I'm sure that was a very difficult decision, but the right one.
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I'm so sorry for what you're both having to go through, Elena. I hope the hospice team is reassuring and supportive, and that your mother can be made more comfortable. Please update us when you can.
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thank you all for your advice, I've decided to move her to a hospice unit, she is less coherent every day.
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Agree with Pam that surgery with sepsis should not be attempted. Wait till she is out of the woods.
I had missed the fact that she has dementia and is 96.
Ask lots of questions then make a calm rather than an emotional decision.
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If Mom is being fed with a tube through her nose a PEG tube will be much more comfortable for her. It is a minor process to have it placed.
If she is not close to dieing and wants to live it is a good decision to make.
Feedings can be done overnight so daytime activities can be continued. Medications can be given through it either in liquid form or pills crushed.
For someone with advanced dementia it may be a different decision because the patient will not be able to understand the process and may pull the tube out.
Allowing her to continue to take things by mouth will ensure aspiration pneumonia which will result in death fairly quickly.
A PEG tube is easily managed at home or in a facility. The main problem is the tube blocking so it is important to flush the tube as instructed. If it is pulled out it is not a big deal to put a new one in. If Mom is likey to pull out the tube constantly then different decisions need to be made which may include hospice. Hospice does not usually support this type of feeding but will usually allow it to continue.
It is really quite simple to manage once your have received instruction. If Mom is coming home try and be at the bedside a few times when a feed is set up.
I have had one now for over a year and manage it easily on my own. The patient can continue to eat by mouth if it is safe to do with the goal of eventually discontinuing the tube feedings. Medicare does cover the cost but only approves about 25% of applications. If Mom has already failed swallowing evaluations and is aspirating she sounds as though she will be approved. The tube is attached to a small pump which is programed to adjust the flow to the correct rate. It is electric but has battery back up. I was also supplied with a gravity feed bag which would be used if there was a prolonged power outage.
As the Drs are recommending a tube I can only assume they feel Mom will benefit from being fed. Not knowing Mom's overall condition I would recommend giving it a trial. Easy enough to discontinue at any time. it does not even have to be removed. Tubes do need to be changed about every three months so that does mean Mom has to spend a few hours at the hospital but family can remain with her except for the 20 minutes or so she spends in the proceedure room. They will use sedation if she is very anxious. I personally am a real scardy cat but this has become routine with no anxiety
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Surgery while still septic is a bad idea. Surgery concurrent with fluids around the heart is an additional risk. It's a 45 minute surgical procedure that adds nothing to life expectancy. Just say no.
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She is being fed by a tube in her nose. A PEG would go in her stomach.
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I think I would ask for a Hospice evaluation.
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Yes, a DNR is in place.
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PEG? Does she have a DNR? Ahh a feeding tube? Are you her POA? Does she have a living will? What are her wishes? I sure would not have one placed for my mom with Alzheimer's. She has a living will. I know mom would not want it.
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