Refusing a feeding tube?

[lisaann1170]

I've talked to so many PALS with feeding tubes. Do many refuse them?

I ask because my dad is not interested in getting a feeding tube. Granted, it's not something that anyone is thrilled to get, but I'm concerned that he may actually refuse this.

Similarly, tell me all of the GOOD a feeding tube does so I can print this out and share it with him! I'd like to keep him around for a long, long time and refusing a feeding tube sounds like a life-ending decision to me.

For the record, he's lost about 10-15 pounds in the last month and his fluoroscopy shows that he's aspirating liquids. I'm sure he's afraid to swallow as he chokes easily. As a postive note, his lung function remains statistically above 100%. He has limited mobility, but is still able to walk short distances with a walker.

Thanks all!

 

[Anastasia]

Help!

Am new to all of this. can some one fill me in on the abbreviations different writers are using eg. ALS. PALS. MND.:?:Ta ,cheers ,Anastasia.

 

[lisaann1170]

ALS = Amyotrophic lateral sclerosis or Lou Gehrig's Disease (used primarily in the US, I think)
PALS = Person/Patient with ALS
MND = Motor neuron disease - a group of diseases that affect the motor neurons; ALS is one. (used more frequently outside the US, I believe)

HTH! (Hope that helps!)

 

[thelma313]

Lisa, you should print this thread out https://www.alsforums.com/forum/als...roup/8086-peg-tube-raging-success-so-far.html

There are a lot of people extolling the virtues of the PEG tube. My dad didn't want one at first either and it took some convincing but I finally got him to come around and he doesn't regret it for a moment. He has gained back 15 pounds and surely would not be around today if he had not gotten it. Aspiration, choking and starvation are definitely risks a PALS does not need to take. It is a simple, totally non-invasive procedure leaving the person with a little tube that is attached to a "second belly button." It's simple, discreet, and easy to operate. The biggest inconvenience is keeping it clean so well worth it!

Good luck with your dad. Just tell him "All the cool PALS are getting them!"

 

[rachelg]

Hi Lisa

My husband Mark had his tube fitted in June. He says and we all feel that it was the best decision he ever made.

Mark had the tube fitted whilst "healthy" - he had lost quite a lot of weight but was in pretty good health.

Since having it he has gained weight as he has a protein feed overnight. His choking has reduced as he can have all his meds through it rather than struggle with syrups and crushed pills. He is able to stay well hydrated by putting plenty of water through it everyday and this has helped his energy levels and helped reduced the tickly cough he was struggling with.

Mark now eats for taste and pleasure rather than struggling to eat enough to keep him well and this has taken the pressure off meal times (a plate full of tea sometimes took him 2 hours to get through). He has little tit bits of tasty food whenever he likes - no more forcing down a full meal.

The tube is discreet and no one would know he has it fitted when he is dressed. He is allowed to go swimming and carries on doing all things he always did.

He even has a bourbon through it every now and then if he fancies feeling slightly "fluffy".

I can't express enough how much life has improved with the tube.

I really hope that your Dad has one, I am sure once fitted your Dad would be pleased.

Regards
RACHEL

 

[Ronelle]

Hello Lisa's dad,

Please, please! A feeding tube is a MUST HAVE! I was apprehensive and now I can't believe what change it made!

 

[asantiago]

Initial resistance to the tube is a common theme in threads here. My mom did not want one at all. She waited months to get it, it wasn't until she'd lost 40lbs and realized she would die very soon without it that she caved and agreed to it. Once she had it, like many others, she wondered what in the world she so hesitant about and wished she had done it long ago because she felt better and it made life so much easier.

I would guess your dad is dehydrated. Try to talk to him about the symptoms he's experiencing related to dehydration: fatigue, headaches, cramping? I don't know if he is experience them, but mom always said she felt blah, like she had a hangover. She attributed it to the disease when in reality it was the dehydration. Maybe you can incent him with the idea of feeling better on a day to day basis.

I hope your dad agrees to it soon, as another poster recenly learned: once you finally make the decision to get one, it can take some time to get it scheduled and put in. Is it possible for you to contact his doctor about a consultation? Would your dad agree to a consultation at least which would at least get the ball rolling. Part of his hesitation may be the fear of the unknown. If you can get him to understand what a simple procedure it is that might help too.

 

[joelc]

If you scroll to the bottom of this page there are links to other threads that have good information on this topic. A feeding tube, PEG, is a must have item once a person starts have trouble eating.

 

[tmasters]

Well I didn't see anyone mention this, so this is just gonna be blunt. Sorry.

But if all other arguments fail let him know that if he refuses the tube he's ultimately making the choice to starve to death. :shock: Seems obvious to me but with so many PALS opting out maybe not obvious to everyone.

-Tom

 

[kojena]

Hi Lisa,

I'm facing the same situation with my husband (PALS, bulbar onset) who is rapidly losing weight and spends most of the day "resting" (but who is still refusing the PEG, while "reserving the right to change his mind"). It is comforting to learn that accepting a PEG can significantly improve one's QOL, but convincing my PAL may be another story...

 

[newbie]

Re: Refusing a feeding tube - to do, or not to?

My husband also has bulbar onset. We didn't know what to do about a PEG tube either, but trusted the doctors who said "do it while it's still a minor procedure - you don't have to use it. But if you do decide you want it later and your breathing function has gone below 50%, it becomes a major procedure". So, my husband had it done. He really didn't have much pain but a little discomfort for a few days. It required simple cleaning for a few weeks while the skin healed around it. When he or I accidently bumped it, he said it didn't hurt but kinda of felt funny. It took a little getting used to, to see it, to account for it when dressing or undressing, but we did adjust.

My husband didn't use the PEG tube for almost 6 months but we flushed it once a day to keep it functional. When swallowing became a major problem, consuming a meal took 1-2 hrs, his weight was going down dramatically and he routinely choked trying to swallow his pills, we began using the PEG tube to supplement his diet with liquid nutrition and administered crushed meds through it too. For another 6 or 8 months, he had the energy for several trips, including Puerto Rico (from WA state) for his son's wedding - priceless! We enjoyed several other trips and he had enough energy for mowing and working in his garden, etc. He continued to enjoy small amounts of of "fun" foods like ice cream, mashed potatoes and gravy, chocolate, etc. About 10 mo. after the PEG tube was put in, he became fully reliant on the tube for nutrition and hydration, but that time frame could differ for everyone.

At this point, he might want to decide some things. Just because you have the PEG tube, doesn't mean it will be used to keep you going longer than you want to bother with. At any time, he can decide to stop using it and let nature take it's course - not maybe the ideal way to go but we all have differing opinions about that. He can use it to stay alive and feeling better as long as it's "worth it", and then stop using it when it's time to go. To be sure his wishes are respected should he ever not be able to communicate for whatever reason, he needs a POLST form (advance directive) which clearly states when to discontinue use of tube feeding and hydration (when I can't walk, when I can't talk, when I am sick enough to need IV antibiotics, whatever, etc.).

I think there are a lot of things for your PALS and the family to think about. If he's lived long enough, seen and done the things he wanted, watched his children/grandchildren graduate get married, etc, maybe he doesn't see the need to hang on to life anymore. If he thinks there may still be things he wants to do, then get the PEG tube. It's not an irreversable decision - although you wouldn't want to have the actual thing removed, you can decide any time to just stop using it. The surgery is considered "minor" when done early, the recovery is not bad, the learning curve is a bit challenging but we all figure out what works for us, and we all adjust to the new body image (seeing the tube sticking out from the abdomen just becomes no big deal after a while).

Good luck with this, and in the future.

 

[MarianneS]

My doctor told me that whether I had a PEG or not it would not extend my life. I am not getting one, what is the point. I know I would hate it. He also told me that it is a fifty-fifty split on patient's reaction to getting one, half are happy and half not happy.

 

[BarryG]

Marianne, I don't know if you are bulbar or limb onset but if you are bulbar then I would say that your doctor is full of it. Sure, having a PEG tube doesn't change the progress of the disease but I HAVE NO DOUBT in my mind that I would not be here today without mine. I have always been a skinny guy and last fall I was very close to starving to death. The "point" at least for me is to have a good life, at least what is left of it. I am getting ready to take my son back to university and am going to stop in and see a friend on the way so my life is so much better than it would be if I were starving to death. I can still walk, drive, talk to friends (electronically), and wake up and see the sun shining. You might hate the peg tube but I love mine.

 

[joelc]

I get sick of these doctors that don't have a clue what they are talking about. They seem to have this philosophy of why prolong the inevitable.

If it was them or one of their children I think their attitudes would immediately change. A PEG certainly does extend a persons life and makes it so much easier and enjoyable for not only the PALS but everyone around them.

There is so much to live for! Just watching your grandchildren grow up is enough reason to stay alive. Even if we can't play with them we can be a part of their lives and share our wisdom with them. They don't care that we are in a wheelchair and use an electronic device to talk. They love us anyway, kids are amazing that way. I could do on and on but I better stop.

 

[MarianneS]

I do have bulbar onset and talk electronically too, still get out and about. The doctor did encourage me to get one, that was the reason I asked him would it prolong my life. He said no study has indicated that this is the case. I know about losing weight, I sarted at 117 and am now 97. Can someone convince/assure me that I will "love" it. I've read on different sites about pain, bleeding, seepage, and decling health after having a PEG. Iwould also have to stay overnight in the hospital prior to the procedure, which I dread. I've had several hospital stays before with sugeries and I will hate another one.