Looking for evidence that feeding tubes prevent aspiration pneumonia

Posted by ltecato @ltecato, Sep 7 9:19am

I am not looking for “preponderance of evidence.” I want facts that can be proven and are not subject to debate. I don’t want marketing copy. If anyone with a medical degree or advanced degree in a medical-related field is not convinced, neither am I.

Sorry if that sounds terse and hostile but I feel like I am being railroaded and gaslighted into getting a tube to replace one that fell out more than a year ago.

I have a list of reasons for refusing, but if no one can tell me without a doubt that the tube will extend my life, I sure don’t want it. The other complaints are mostly not related to lung health.

Instead of bothering you with a complicated explanation of my long list of gripes, I will try to break it down into single issues. For me, the overriding question is: Do feeding tubes really — and I mean without a doubt, no ambiguity or half truths or sales/marketing BS — prevent aspiration pneumonia? Sorry if I picked wrong forum.

REPLY

Also I ran out of room for the title. Last two words are “aspiration pneumonia.” I am not trying to start a conspiracy theory about the Aspirati. The Aspirati are nice people.

/s

REPLY
@ltecato

Also I ran out of room for the title. Last two words are “aspiration pneumonia.” I am not trying to start a conspiracy theory about the Aspirati. The Aspirati are nice people.

/s

Jump to this post

Hi @ltecato, I was able to merge both your discussions into one discussion that appears simultaneously in both the Ostomy group and the Lung Health group. That way all the conversation about feeding tubes and aspiration pneumonia will be in one place. I was able to modify the title to include “aspiration pneumonia” by removing the words “cross post”.

As you know, Mayo Clinic Connect is a community of patients sharing experiences. As for searching for irrefutable evidence regarding feeding tubes and prevention of aspiration pneumonia have you searched using Google Scholar for journals on the subject? What are you learning or not learning from your doctors or ostomy nurses?

You sound very frustrated with the paucity of information you’re getting. Are you susceptible to aspiration pneumonia and a feeding tube is being recommended?

REPLY

This is why I am asking. I don’t want someone who is trying to “sell me” on the idea. I want strong evidence, like something that can be asserted in a court under oath with no spin and not collapse under “cross examination.” Two doctors wrote this for the Washington Post.
https://www.washingtonpost.com/national/health-science/problems-swallowing-are-a-big-killer-but-the-treatment-can-be-horrible/2018/02/23/098ae26a-0229-11e8-bb03-722769454f82_story.html

REPLY

@ltecato The short answer is no. A feeding tube does not prevent aspiration. I speak from experience with my father who had a feeding tube because of a head injury from a skull fracture in his 60's. That was temporary and after he had relearned how to swallow, the tube was removed. When he was in his 80's, the difficulty swallowing returned and he was choking on his food. We had swallowing studies done and the doctors ordered nothing by mouth which did frustrate him a lot. I helped him make the decision to have the feeding tube that they suggested. With the various ER visits with an elderly man, I had a chance to ask the doctors, and they told me what happens is that the stomach shrinks because of not having solid food. With the feeding tube, we had to do a slow drip with an IV bag connection. If my dad started coughing, he could cough up his stomach contents into his mouth and start choking on it. There were times this happened, and I opened the tube connection into his stomach to drain it to stop him from coughing it up. That is why the feeding needed to be a slow drip. The doctors told me that is eventually what happens causing aspiration. They were right and this is how he died by coughing up stomach contents and then aspirating it into his lungs causing a heart attack. He was an end stage heart patient with heart failure.

REPLY
@jenniferhunter

@ltecato The short answer is no. A feeding tube does not prevent aspiration. I speak from experience with my father who had a feeding tube because of a head injury from a skull fracture in his 60's. That was temporary and after he had relearned how to swallow, the tube was removed. When he was in his 80's, the difficulty swallowing returned and he was choking on his food. We had swallowing studies done and the doctors ordered nothing by mouth which did frustrate him a lot. I helped him make the decision to have the feeding tube that they suggested. With the various ER visits with an elderly man, I had a chance to ask the doctors, and they told me what happens is that the stomach shrinks because of not having solid food. With the feeding tube, we had to do a slow drip with an IV bag connection. If my dad started coughing, he could cough up his stomach contents into his mouth and start choking on it. There were times this happened, and I opened the tube connection into his stomach to drain it to stop him from coughing it up. That is why the feeding needed to be a slow drip. The doctors told me that is eventually what happens causing aspiration. They were right and this is how he died by coughing up stomach contents and then aspirating it into his lungs causing a heart attack. He was an end stage heart patient with heart failure.

Jump to this post

@ltecato I wanted to add a bit more here. While my dad did die of aspiration, he also had several instances of aspiration because of not using the feeding tube. Before the feeding tube at the end of his life, he was thickening liquids with Thickit and we were using a blender to make his meal easy to swallow. He also worked with a speech pathologist on swallowing and exercises to strengthen that process. When my mom gave him a cookie that he was not supposed to have, he choked on it, and then developed aspiration pneumonia requiring medical attention. that probably would have happened more without the feeding tube, so it did help. His swallowing problems stemmed from a brain injury years earlier, so tat may not be an equal comparison as to what will happen in a different case. It is worth doing the therapy work to try to strengthen swallowing.

REPLY
@jenniferhunter

@ltecato I wanted to add a bit more here. While my dad did die of aspiration, he also had several instances of aspiration because of not using the feeding tube. Before the feeding tube at the end of his life, he was thickening liquids with Thickit and we were using a blender to make his meal easy to swallow. He also worked with a speech pathologist on swallowing and exercises to strengthen that process. When my mom gave him a cookie that he was not supposed to have, he choked on it, and then developed aspiration pneumonia requiring medical attention. that probably would have happened more without the feeding tube, so it did help. His swallowing problems stemmed from a brain injury years earlier, so tat may not be an equal comparison as to what will happen in a different case. It is worth doing the therapy work to try to strengthen swallowing.

Jump to this post

Jennifer, thanks very much for the reply. Very sorry to hear about your dad. My poor mom died of lung cancer just as the lockdowns of 2020 began. No one could visit.

I have dysphagia because of radiation treatment for cancer of the nasopharynx as a teenager. I also have trismus and can only open about 15mm. On top of that, the cobalt put a permanent end to my saliva. I have lived with xerostomia since 1976.

Swallowing problems began about 2002, I think. I ignored it because it never occurred to me that it could be important, but in 2006 I was at a restaurant when food got stuck part-way down and I went to an emergency room. The tortilla chips went down on their own eventually, but a GI doctor came in and explained it was radiation damage and offered to do a balloon treatment to widen the esophagus. So I agreed and it worked for a number of years but I had no health care to dentistry during the recession. Teeth went to hell.

c. 2014 I started choking again and suddenly I could no longer eat pizza that was easy to swallow before. For a while I was vomiting after waking every morning. No idea why. Either the vomiting or the dysphagia eventually gave me aspiration pneumonia. I spent a month in a hospital and the SLPs just bulldozed me into getting this tube.

I get so mad when I think how they didn’t warn me that my mouth would “forget” how to chew and swallow, that I can’t even talk about it because I will raise my voice and I truly fear non-deaf hospital employees will call security on me and I will be lucky if I don’t get Tased — but that’s another beef. ADA.

Got out of hospital and spent another month in rehab. Tube fell out maybe 6 months after it was installed. A cat accidentally pulled out the next one. Then I accidentally cut one off while trying to remove gauze and tape that got stuck on it also by accident. I had to replace it at least two more times before I decided I had enough. The stoma also got infected. One time I got pancreatitis and pneumonia concurrent with an infection.

REPLY
@colleenyoung

Hi @ltecato, I was able to merge both your discussions into one discussion that appears simultaneously in both the Ostomy group and the Lung Health group. That way all the conversation about feeding tubes and aspiration pneumonia will be in one place. I was able to modify the title to include “aspiration pneumonia” by removing the words “cross post”.

As you know, Mayo Clinic Connect is a community of patients sharing experiences. As for searching for irrefutable evidence regarding feeding tubes and prevention of aspiration pneumonia have you searched using Google Scholar for journals on the subject? What are you learning or not learning from your doctors or ostomy nurses?

You sound very frustrated with the paucity of information you’re getting. Are you susceptible to aspiration pneumonia and a feeding tube is being recommended?

Jump to this post

Thanks Colleen.

“Are you susceptible to aspiration pneumonia and a feeding tube is being recommended?”

You bet. Yes to both. I have been getting pneumonia every 60-90 days since about two years ago, I think.
I anticipate people are going to try to frighten or “guilt” me into doing this. I already wonder if I am getting the gaslight treatment, because no one will admit that feeding tubes are not medical miracles. Or they won’t admit it unless I ask pointed questions and am obviously suspicious and agitated. I don’t like the fact that I have to figuratively waterboard people to get straight answers.

Sorry for venting. It’s not easy when I am on opiates or steroids much of the time and they make me edgy.

REPLY
@jenniferhunter

@ltecato I wanted to add a bit more here. While my dad did die of aspiration, he also had several instances of aspiration because of not using the feeding tube. Before the feeding tube at the end of his life, he was thickening liquids with Thickit and we were using a blender to make his meal easy to swallow. He also worked with a speech pathologist on swallowing and exercises to strengthen that process. When my mom gave him a cookie that he was not supposed to have, he choked on it, and then developed aspiration pneumonia requiring medical attention. that probably would have happened more without the feeding tube, so it did help. His swallowing problems stemmed from a brain injury years earlier, so tat may not be an equal comparison as to what will happen in a different case. It is worth doing the therapy work to try to strengthen swallowing.

Jump to this post

Jennifer, I feel like kicking myself when I read about your dad and the cookie. I kept trying to eat Frosted Flakes because sometimes I could swallow it but I always suspected it was giving me pneumonia the next day or two.

I think the last time was because I ate minestrone. I have switched “full liquid” and “mechanical soft.” I have found some kinds of soup I can swallow, but none of them have pasta or chunky veggies.

REPLY
@ltecato

Thanks Colleen.

“Are you susceptible to aspiration pneumonia and a feeding tube is being recommended?”

You bet. Yes to both. I have been getting pneumonia every 60-90 days since about two years ago, I think.
I anticipate people are going to try to frighten or “guilt” me into doing this. I already wonder if I am getting the gaslight treatment, because no one will admit that feeding tubes are not medical miracles. Or they won’t admit it unless I ask pointed questions and am obviously suspicious and agitated. I don’t like the fact that I have to figuratively waterboard people to get straight answers.

Sorry for venting. It’s not easy when I am on opiates or steroids much of the time and they make me edgy.

Jump to this post

@ltecato I understand your frustration and I saw that in my dad too. I don't think doctors want to put in feeding tubes and do this when the risk of swallowing food is greater than the risks the tube poses. Would things be different for you if you felt you had been given answers? Your choices are yours alone, so no one else's opinion really matters except that of a physician. One thing I can say about doctors is that they don't want you to loose hope. If they give you great details of what bad things could happen, you might give up. Doctors would rather encourage you as best they can and try to keep you out of trouble. Feeding tubes are just a crutch to get you by and they don't fix anything. They do require care, and keeping the connection on the skin clean. Remember, doctors are under a lot of stress, and asking pointed questions probably won't get you very far. It would be better to ask questions about proper care of the feeding tube and looking to solve a problem. We all need to play the hand we are dealt. I'm sorry about your mom and thanks for caring about my dad. It was tough work taking care of him at a time when I was in a lot of pain because of a spine problem that needed surgery. My dad eventually gave up because he wasn't able to do anything without assistance and he didn't want to live that way. I had to accept that even though it was hard to loose him.

REPLY

@ltecato
I had a feeding tube for a bit over a year. 2014-2015. I never aspirated, but was cautioned that I could. I was to be at a 35° angle when sleeping. I just slept in my recliner. My feeding was 24 hours to begin with. A pump was set to pump so much in me.. formula and water. I could eat soft foods and progressed to solid food. I had to maintain weight for I think it was six weeks before they would remove the tube.

My esophagus does not work… and the sphincter to my stomach does not work well. If the sphincter to my stomach does not open the food stacks in my esophagus. Sometimes I get nauseous and vomit and other times food just comes up. I go have my esophagus dilated… stretched ever once in awhile. So far it helps.

I did not have a stoma on the outside… it was just the tube. I cut a small piece of gauze to go around it and taped the tube in place. It was tape that does not rip your skin off.. can't think of the name right now, I changed it morning and evening… cleaning it. If it got irritated the doctor said I could put antibiotic cream around it.. but not on the rim of the hole. It kept infections at bay. I have pain where the tube was especially if I sit an hour or more.

I did not like the feeding tube one bit!! It did keep me alive. In 2018 they said if I did not gain weight I would need to go back on the feeding tube, I was taking care of my mama and it was difficult for me to take care of me too. My mama had another stroke in Dec 2019 and had to go in a nursing home for rehab Jan 2020. She did not do well with rehab. Covid hit bad in mid March and we could not visit. Another stroke in June and the fatal one August last year.

I gained a lot of weight since… inactivity with two thumb surgeries.. same thumb.. last year and this year SI (sacroiliac) joint fusion and vaginal wall repair. My husband is saying “what next?” 😂 I am doing better … I just need to eat better and exercise more.

You will figure out what is best for you. Write out the pros and cons.

On the chewing… frequent meals and having to chew well… my jaws hurt. I have an overbite that makes it hard to bite… so chopped, tender meats for me.

ZeeGee

REPLY
@fourof5zs

@ltecato
I had a feeding tube for a bit over a year. 2014-2015. I never aspirated, but was cautioned that I could. I was to be at a 35° angle when sleeping. I just slept in my recliner. My feeding was 24 hours to begin with. A pump was set to pump so much in me.. formula and water. I could eat soft foods and progressed to solid food. I had to maintain weight for I think it was six weeks before they would remove the tube.

My esophagus does not work… and the sphincter to my stomach does not work well. If the sphincter to my stomach does not open the food stacks in my esophagus. Sometimes I get nauseous and vomit and other times food just comes up. I go have my esophagus dilated… stretched ever once in awhile. So far it helps.

I did not have a stoma on the outside… it was just the tube. I cut a small piece of gauze to go around it and taped the tube in place. It was tape that does not rip your skin off.. can't think of the name right now, I changed it morning and evening… cleaning it. If it got irritated the doctor said I could put antibiotic cream around it.. but not on the rim of the hole. It kept infections at bay. I have pain where the tube was especially if I sit an hour or more.

I did not like the feeding tube one bit!! It did keep me alive. In 2018 they said if I did not gain weight I would need to go back on the feeding tube, I was taking care of my mama and it was difficult for me to take care of me too. My mama had another stroke in Dec 2019 and had to go in a nursing home for rehab Jan 2020. She did not do well with rehab. Covid hit bad in mid March and we could not visit. Another stroke in June and the fatal one August last year.

I gained a lot of weight since… inactivity with two thumb surgeries.. same thumb.. last year and this year SI (sacroiliac) joint fusion and vaginal wall repair. My husband is saying “what next?” 😂 I am doing better … I just need to eat better and exercise more.

You will figure out what is best for you. Write out the pros and cons.

On the chewing… frequent meals and having to chew well… my jaws hurt. I have an overbite that makes it hard to bite… so chopped, tender meats for me.

ZeeGee

Jump to this post

Your history sounds a lot like mine. Wife calls people like us medical unicorns. I wish. Good luck with your recovery!

REPLY
Please sign in or register to post a reply.
  Request Appointment