PEG vs Aspirational Pneumonia

[bichonbear1]

Mum has reached a new point in her illness and food intake is now causing her to be sick on occasion which is ultimately leading to seizures and a risk of choking. We have been told the only way to ultimately stop this is via a peg or accept that this will eventually lead to her choking getting pneumonia or sepsis. Has anyone got any experience of whether a liquid diet helped reduce this risk or whether a peg is ultimately a good decision?

[Zerachiel]

Hi

Have a read down this post for some pros and cons regarding feeding tubes

healthunlocked.com/psp/post...

A PEG or RIG will reduce the risk of aspirating but not remove the risk completely; control of saliva production with meds and mouth hygiene are extremely important due to bacteria and aspirating saliva.

My wife was sick in the night and had a small puddle of sick in her mouth and on the pillow (she was on her side) this led to Aspirational pneumonia.

[bichonbear1 in reply to Zerachiel]

Thank you, a helpful read.

[carehope]

Dear bb1,I don't know if the following applies to your situation or not but I'll start at ground level. What you have brought up here is just one of the many topics which we all should tackle preferably long before the need arises. That is, the importance of having Advanced Directives in place ; whether well or not, PSP afflicted or not . Advanced directives which include a "Living Will" and a "Health Care Proxy" in addition to a "Will" and "Durable Power Of Attorney" are essential in order to ensure that our future doesn't become a tangled mess for ourselves, our families, or the medical community that may be tasked with our care.

A "Health Care Proxy" and a "Living Will" stipulate who we want to designate to be in charge of making decisions regarding our care when or if we are not able to make them ourselves due to illness or accident.

In the U.S. , the family or the adult patient is always asked if the pt. has a Health Care Proxy when they need hospital services for any reason. The pt. has named two responsible adults; a primary and a secondaty choice as the person they've chosen to make essential decisions if needed and to be the person that medical personnel will be dealing with during the pt's care. A Living Will gives us the opportunity to state in as much detail as we would like , the extent to which we want medical intervention and which medical interventions we would want or not want in order to prolong or save our life. We are all hopefully capable of deciding before the need arises, if we would want to prolong our life by having a PEG placed.

This is a very personal decision. The ramifications need to be clearly explained and understood. Questions asked and answered to the patient's satisfaction. Some people know long before the need may arise what their choice would be . To others this may be something that they had never even considered until they're confronted with such a decision.

Your Mom needs to be able to make a well informed decision regarding the placement of a feeding tube. If your Mom is not capable of doing this then it would fall to her most trusted and capable designee to make that decision. Regardless of what is decided it is essential that you and your mother have an excellent lawyer assist you in formulating Advanced Directives if this hasn't been done already so that the best guidelines for your mother's future can be put in place. Coincidentally, others have posted re: all of these topics and more can be found on psp.org

Please research the particulars on your own in order to be well informed. You can Google key topics on your cell phone. Unfortunately Dr's typically don't have the time to sit down and discuss many of the necessary details.

Best of luck as you navigate along the way ❣️

Love,

Elise

[bichonbear1]

Thank you for coming back to me, my mum was unsure how she felt about a PEG at the point she was able to make decisions. It was the only decision not finalised. Mum had a dramatic deterioration about 2 years ago and without warning became unable to make decisions however, the subject of PEG has now become relevant. My dad has power of attorney and his view is not to fit a PEG but wants to be sure he is making the most informed decision now he faces it. The health professionals have said he needs to make it quickly. The question was just to draw upon any personal experiences that can support this decision making. It’s a very personal one for sure but the shared experiences on this site has been invaluable whilst we have navigated this journey from hell as a family.

[carehope]

Hi again bb1 , Am so glad that your Mom has had you and your Dad taking care of her !

Such tough decisions we're faced with at crossroads along the way ! There's certainly no right or wrong with certain interventions . You and your Dad who have been witnessing the progression of your Mom's illness through the years are possibly best qualified as to what impact a feeding tube would have on her given her condition and prognosis. A compassionate highly qualified and impartial physician's input might be helpful if you have someone in mind, or maybe a palliative care expert.

I think that the most important consideration re: life prolonging measures isuch as placing a PEG , is whether or not it would have a meaningful impact on the pt's health and quality of life. Maybe a Hospice consultation could also be helpful ?

You and your Dad have been caring for your Mom through thick and thin. That has taken love, courage, and dedication beyond belief ! Your Dad and you may be the most qualified people at this point to weigh in on what's best for your Mom ! You know your Mom better than anyone else !

Keep that in mind and don't doubt your best instincts.

Take care of yourselves also !!

Lots of love,

Elise

[bichonbear1 in reply to carehope]

Thank you for your kind words

[Kasenda]

Hi,

Is your mum still aware of what’s going on? I do think that it’s a decision that should be made by her. My husband raised his thumb and agreed to it when he was at the stage where your mum is now. It would have been a difficult decision for me to make for him otherwise. Thinking of you.

[bichonbear1 in reply to Kasenda]

Hi, thanks for your reply. Mums cognition is really bad with Alzheimer’s atrophy linked to the CBD so she can’t make decisions and will just refer to my dad with “what do you think?”.

[David750]

Hi bichonbear1, I feel for you in this position. I agree with all said here already, it is a decision only your Mum can make and that a peg will not prevent aspirational pneumonia as saliva, loaded with bacteria, still has to be swallowed correctly. My wife (PSP) when she was diagnosed and could read, read all about the condition. She opted not to have a peg or nasal tube. She said when it came to the choking, life would not be worth living and did not want to prolong matters. Very brave in my view.

It was then encumbent on me to ensure her food and drinks were as smooth as possible - not too thick or too runny. This was not easy. My slow cooked stews liquidised felt powdery/grainy in my mouth when she started choking. I then liquidised twice, the second time when hot. This produced a much smoother product. I also bought a new liquidiser (2 speed 400watt) as the blades on my existing one proved too blunt.

Please consult your Speech & Language Specialist for advice in the course of your deliberations.

I hope this helps, never the less not at all easy for you. All my very best wishes

[bichonbear1 in reply to David750]

Thank you for your reply. Mum can’t make decisions unfortunately and it was one decision not finalised when she could before a severe deterioration. It has historically and continues to prove challenging to get an appointment with a SALT…. appointments only via phone consultation over past 18 months or so. We have care provider, hospice and hospital referral all on it. It has become an urgent need since mum was hospitalised following an infection caused by aspiration pneumonia about 3 weeks ago which caused a steep decline again.

[Jodi999]

It seems we're at similar stage with my mother in law so I'll share what we've experienced and hope it might help. She was in hospital in January (2024) and the doctors tried to give her a feeding tube but advised she was too weak and it would not improve her quality of life. They kinda gave up on her but since she's been back home she stabilised. She is fed soft food only, thickened drinks, still chokes a lot. She can't speak and is bedridden so her condition is still very painful and painful to see her like this. She's lost a lot of weight but that was inevitable with the small amounts she eats. I don't know if a peg tube earlier on would helped her be stronger now, I suppose it would take away the chocking episodes which look painful. At this stage she doesn't enjoy the food anymore anyway. It's still a very difficult decision and in a way happy it was made for us.

[bichonbear1 in reply to Jodi999]

Thanks for replying. Sounds like a very similar situation, thank you for sharing. It is devastating to see our loved ones go through all this.

[Kelly2807]

Hi Bichonbear1,

I unfortunately went through all this with my dad who unfortunately last year, my dad is no longer with me now. I can truly say I wish we hadn’t had the peg feed fitted, it just prolonged the inevitable unfortunately and I watched him suffer so much, that I really regretted it. He had been aspirating and had had pneumonia a couple of times within 3 months and he had fought through that and I thought this was the only way to stop that was to have the peg fitted. He never improved it just kept him alive for our selfish reasons and not his.

I know not everyone is the same but now I’ve come to except that he has gone, I now realise that I wouldn’t have done that knowing what I know now.

When he was really quite ill the nurses weren’t allowed to just stop his food through the peg and that was making him suffer more, only right up to the day he passed away was the food stopped.

Everyone had their own opinions but I just wanted you to hear it from me what my dad went through.

Sending you lots of hugs 🥰

[bichonbear1 in reply to Kelly2807]

Thank you so very much for sharing and I am sorry to learn what you have been through. Our head as a family is very much in tune with what you are saying but it’s a decision none of us want to make. This forum is invaluable to support thought processes.

[messier]

Hi Bichonbear It sounds like your mum may not already be in a liquid diet. If not then please do try that. My mum was on a liquid diet for quite a while. As David750 says its important to get the right texture and thickness. It's also important to feed it the right way for your mum. Experiment with spoon size, how far in her mouth you put the spoon, how much to put on it etc. I think some here have used a syringe down the inside of the cheek. Sometimes I fed drinks this way too since food and drinks should be the same thickness and texture. The other thing that we found is that she found it much easier and more comfortable more tipped back in her chair than SALT said - and I know she now has a chair that tips back

[bichonbear1 in reply to messier]

Thank you for your guidance, this is helpful to understand before the SALT visit we are still waiting to pin down takes place. It’s doing the right thing until that professional guidance is provided. It’s exhausting getting these appointments organised….hopefully the date will be set for next week.

[LittleOllie]

I feel for you in this awful situation. We had the same issue with my mom. She didn't want a peg tube as it was seen as more intervention. You have to way up the pros and cons to have one fitted ( eventually mom was too weak to have the surgery so we had to just keep going as best as possible) She managed ok on a level 5 mashed and moist diet and nutrilus thickener in fluids but still choked on a daily basis which was hard to watch. Her SLT reviewed her swallowing every 6 months and we made sure she sat upright, with her chin slightly down when eating. This was so good didn't hit the back of the throat too fast. We fed her small spoon fulls of food but this got to a point where it would take 1.5 hrs for her to have breakfast. Mom managed to get a review with a dietician which was helpful, her weight was steady but she was only about 6 stone. Dental hygiene is important in people with PSP so she had sensodyne toothpaste as it doesn't foam up in the mouth. All these things we had to research ourselves as the GP didn't really offer any other support. Take care

[LittleOllie in reply to LittleOllie]

*This was so food didn't hit the back of the throat too fast

[bichonbear1 in reply to LittleOllie]

Thank you for your guidance, we are still waiting for the date of the SALT appointment which is why our heads are confused at this point. The professional steer is needed but the experiences shared on this site are invaluable for now.

[DaddysPrincess]

Same with Dad’s condition too, he’s on the late stage of his PSP. He had aspiration pneumonia twice now but he wants to be fed still. He is aspirating from time to time. We use thickened fluids and puree to help him aid with his feeding. He didn’t like to have PEG. My mom, my sister, and I are looking after him. Thankfully both my sister and I are nurses. But it’s not easy at all especially grieving to see Dad like that. We have to keep loving and go on with life the Lord has given to us and cherishing each moment.

[bichonbear1 in reply to DaddysPrincess]

Thank you for sharing your experience. Thinking of you and your family.

[DaddysPrincess in reply to bichonbear1]

You’re welcome and thank you so much! 💗

[DaddysPrincess]

he has his SLP too and that was recommended, puree and thickened fluids.

[LuisRodicioRodicio]

Hi bichonbear1!

We have not experience, but seems having a PEG fitted does not make the problem go away totally, as he can still choke on saliva.

“Hi Caya” wrote:

“If the PEG tube is appropriate it depends on the patient:

If the patient has a good quality of life, which means they can walk, watch TV, go to the mall, read the news, to friends etc and suddenly lose the ability to eat and drink then could be OK..

But if the PSP is already advanced and they are fast failing, then it's not recommended since it's just prolonging their misery”.

Please to search for "peg tube" on PSPA fórum or others for other people's opinions.

One caregiver wrote: “My dad had one and i would never recommend it for a late stage patient (it wouldn't make their PSP better or improve their cognition etc).”

On 2021-07, Dr. James Rowe points out: A PEG tube does not exclude eating for pleasure: favourite food and drink can be a continuing source of enjoyment and social engagement, while the PEG handles the bulk nutrition.

PEG, two options for feeding - either a pump that runs all day or bolus.Pros and cons:

Javan point out: "Bolus worked better for the old bag ,as she could have as normal a life as possible. We could go out any time and easily toilet as needed. If we were out for a long time it is easy to keep fluids ,feeds and medication regime going, patients may still have a life."

Zerachiel confirm: "I agree with Javan, bolus does allow you to live a normal life albeit with a new schedule and bag of feed and medication when you go out. It also allows you to adjust the feeding schedule to match your needs for that day.You can always ask to change if you need to".

Hoping to be useful.

Hug and luck.

Luis

[bichonbear1 in reply to LuisRodicioRodicio]

Thank you so much Luis, kind of you to share.