To tube, or not to tube (feeding tube pros and cons)

[edna may]

Thank you for the responses, on tube or not to tube. My feeling on this is if I do the tube, ---( I am 80yrs by the way) If it should end my life, it might be a blessing relieving me of what is to come. As I said before I want to live as long as possible for my Husband. I have had a long wonderful life & marriage, so what ever happens is Gods Will. E.M

 

[MtPockets]

Well said Edna May,
I agree with you completely. I myself have already decided to get the peg tube when I can no longer swallow. It was a hard decision for me, as well as it must be for others. I am 60 years old, so may be able to tolerate the surgery better than some older people.

hboyajian, I am so sorry to hear about your dad. I pray you will somehow find peace in this difficult situation.

I feel when my work on this earth is done, God will take me home, not a minute before or a minute later. I feel He has a plan for each of us. If we trust Him and believe in Him, there is no fear in death.

Jesus said, "I go to prepare a place for you, that where I am you may be also."

I believe His promise is true and therefore I have peace about my future and my death. It is totally in God's hands and in His timing.

God Bless
Capt AL

 

[Kathryn]

Holly,
Your story was very helpful to me as my mom is 82 and the neurologist has suggested she get a tube since her last episode with excess saliva sent her to the emergency room. (My 85 year old dad and her didn't know what to do. She has a suction machine but has never used it.) Your comments were helpful. About 8 months ago my mother went in to the hospital to have the battery changed on her pacemaker. Having to lie on her back all night, without moving, set her back. My sister and brother-in-law went home that night after the procedure and she really needed someone with her in her hospital room all night, as I think sometimes the nurses don’t know as much about ALS as we might think. So, I will share with her what you shared with all of us...I am very sorry about your dad.

 

[TOMMY DK]

Remember what a very smart woman once said:

If you think life with MND is unbearable and that your clients with MND are going to die, send them to someone else before your ”health care” kills their will to live.Cheryl Carter

It is never to late to choose life, and be aware thats my decision, not yours

 

[speechie1]

Sorry it has been so long!

Hello to all, and my sincere apologies that it has been so long since I have been here. A lot has happened, both bad and good. My patient "George" actually passed away a few weeks ago. I felt like such a failure, but he was still able to eat and drink some foods and liquids by mouth until the few days before he died. I was in the process of getting him a communication device (ARGHHH! Another story for another time!), when he left this cruel world. He had decided against the tube, which was his choice. I think he had so many other complications (obesity, lymphadema, etc.) that played a bigger factor in his body shutting down. So, let's be done with the bad news.

Onto the good news! My other patient (we'll call him Frank) with ALS, who had gotten a tube only a few months after being diagnosed is doing AWESOME! He says he feels stronger since having his tube put in, and he is still eating some foods by mouth, but takes all liquids through the tube. He doesn't have a single complaint about his tube. He also has trouble with saliva management, which he has a portable suction machine at home, but recently has gotten a patch to place behind his ear to reduce his secretions. I'm not sure exactly what medication the patch is, but he says it's working well for him. Initially he was able to speak, but over the past 8 months, he is pretty much not able to articulate any words. He is able to make vowel sounds, but the ALS has already taken his ability to move his lips and tongue as necessary when producing speech. We are in the process of getting him a communication device, which hopefully goes better than the last attempt. Frank is still walking and exercising, and still has a great sense of humor. For now, he is still able to write, so he can communicate that way, but the device I am in the process of getting him will be able to be used even when the disease progresses, and he is unable to perform fine motor skills necessary.

So, it has been a good and bad few months. I am so thankful for everyone on here offering their suggestions and support. Mostly, I am greatful for my patient's allowing me to learn so much from them. I have learned more from these two patients than from any other, and I will draw on these experiences for the rest of my career as an SLP. I am so sorry that some of you have had bad experiences with your Speech-Language Pathologist, and I would hope and pray that you would search out a different one and find one that is more helpful.

More to come....I'll certainly keep you posted!

 

[Teej]

My husband had his feeding tube put in at the end of October 2006. He actually suffered quite a bit for a few days after the surgery, as his lung capacity if very low, and it made him very weak, but in the long run, it has been wonderful. I give him his vitamins and pills (he is bi-polar also), through the tube, and all water. He occasionally drinks orally but always eats orally still. He lost about 60 lbs prior to the tube, since the tube, he has maintained. His progression continues, but not terribly fast. The next issue is the trach/vent. We have younger children, so he is willing to do whatever it takes for them to feel he is fighting to stay with them. He is 45 years old, and they tell us that the chances are he will need the trach/vent by this summer.. Anyone have any experience with that? Thanks! Blessings, Teej

 

[hboyajian]

Teej, I have no experience with the ventilator, but I am sure other people here do. There are several members on ventilators. I am replying to your post because I think it got lost at the end of another topic and this will bump it up to get noticed by others.

 

[dana]

Vents

Hello Teej,
My dad is on a trach/vent and has been since Feb of last year. There are some good things with the vent, and some difficult things. I'll start with the pros. For my dad it was great because he could actually breath again. He got color back in his face and his energy level raised so much. It was amazing to see the difference between when he went into the hospital all gray and pale and weak to when he finally received the vent and had pink cheeks again and finally smiled again. It has also been great because it prolonged his life and he was able to have several good months after being on the vent.

Being on a vent takes 24 hour care, at least that is the case for my dad. He is on the vent 24 hours a day, so someone needs to be with him 24 hours a day. If something came unhooked, someone needs to be there to hook it all up again for him so he can breath. My mom is my dad's caregiver during the day, and at night we have nurses that watch over dad as he sleeps so my mom can sleep too. The trach/vent takes a lot of care. It involves suctioning out the lungs periodically throughout the day, which causes my dad to cough and strain. It looks bad, but afterwords, my dad feels much better. The trach needs cleaning everyday too. This is no big deal though. YOu get the hang of it and you somehow go through the motions. My dad is now to the point where he needs to be in the wheelchair, and when he is in the chair, he can go wherever he wants because the vent can attach to it. Just like anything else with this disease, the vent is a hard adjustment. If this is what your husband wants, you can make it work. Good luck and please let me know if I can answer any questions you may have.
Dana

 

[Sher]

Hi there! I am a Speech-Language Pathologist that provides services for inpatients, outpatients, home-health and hospice (jack of all trades, master of none ). I have been in the field for about 2.5 years, and just recently have had two patient's referred to me, both with ALS.

Both patient's are quite close to me in my heart, I need some help, and am looking for input from people who have experienced ALS first hand. This post will deal with my first patient.

My first patient, we will call him George, has been suffering with ALS for the past 6+ months, and was just recently diagnosed. He has gone down hill quite fast. I was consulted to see him through hospice. Now, let me remind you, that as a therapist it is ingrained into our heads from day one, REHABILITATE...fix people and make them better. Well, I knew that that wasn't going to be possible, so I went in with the thought of "COMFORT"....make him comfortable....present options to him (i.e. communication device for communication, altering foods/liquids, tubes, etc. for dysphagia), and see what he wants, because it is his choice. He wasn't too interested in a communication device at the time, because he was still able to speak a bit, and could write quite well. He stated he would NEVER get a tube, but he afforded me the opportunity to just explain the tubes to him, at least so that I knew (first hand) that the alternate nutrition options had been explained to him. I assured him that I wasn't pushing them on him, and that all decisions were his.

Well....my next visit I was going to speak with him and his wife about thickening his liquids, and diet alterations. I spoke with his hospice nurse, as I heard he wasn't doing too well, and mentioned to her that he would probably have better luck with a tube (again, if he wishes). She became quite defensive and said that he "cannot" medically have a tube. After some argument, and thought, she said that she didn't want me to address this topic because she felt it would upset him. Understandble, so I agreed. The hospice manager then hunted (I do mean literally hunted) me down, and told me that I was out of line talking to him about a tube, as that issue had already been addressed, and that he will not get a tube. She brought up the incident with Terry Schaivo, about how she starved to death, but it wasn't her choice, and quite a bit of other talk that really didn't seem to pertain directly to my patient. One thing that thoroughly struck a sour note with me was when she outright said that most patient's with ALS don't want to live past the point where they can no longer communicate. Well....maybe this patient does?

I guess I am looking for comments or suggestions from other's who have already or are experiencing ALS first hand. What do I do? I know that the patient could benefit from my services (dysphagia/communication), however, hospice has already pulled me from this patient. I am so utterly frustrated, as I just want to help him, ease a little of his struggles with communication and swallowing. I don't want him to get a tube if he doesn't want to, yet I think that he at least needs to be aware that if he wants one, he can have one. I know I need to talk to the hospice department on this situation, yet, I am so green when it comes to dealing with ALS, as I have not had a patient with this diagnosis before. I guess I am wondering what all of your thoughts are about:

1.) Alternate nutrition (tubes): Why did or didn't you choose a tube? How long have you been on a tube feedings? Do you recommend it?

2.) Communication: How do you currently communicate? What do you plan to do if you can no longer verbally communicate, or physically use a device?

(Number 3 is quite blunt, please do not be offended.)

3.) Which does a person choose? To die of aspiration pneumonia from not having a tube, to die of malnutrition from not starvation, to die from other complications? My patient initially stated he would NEVER have a tube (perfectly fine, that is his choice). People do change their minds......did any of you change your minds?

I want to reiterate that if the patient doesn't want a tube, he most definitely should not have one. I am in NO way trying to pursuade the patient to get a tube, but I just think that he needs to be aware of his options. I feel that hospice got the verbal statement saying he didn't want a tube (upon first diagnosis last month) when he wasn't really having difficulty with dysphagia, and that's what they are sticking to. He might of changed his mind, and HE should have the final say. But to make an educated decision, he needs to be educated first......maybe I am just off my rocker. I just want what's best for my "ex" patient, and be able to rest soundly at night knowing that I did all that I could for him.

Again, I am so desparate for answers, support, and help. I feel in my heart that there is something I can do for this patient. At least something to make it a little easier for him....

I do appreciate your help, guidance and comments, and apologize for such a lengthy post! God Bless.

Hello Speechie,

I am a PSW-palliative Care Specialist. I too am on my 2nd Als client. One with tube and one without. My first friend decided not to have a feeding tube. His wife and I became marvels in the kitchen; nutrition and thickening we were the queens. However there did come a time that thickening and thinning of foods were not enough. He was offered a tube feed-he declined. Said he didn't want to be topped up like a car. It was very difficult to feed him and watch him choke then watch the suction then the spitting up it was horrible to see him suffer through. I would do anything to honour his wishes, however I wondered if he thought about his family and how they felt watching him trudge through his meals, watch him lose so much weight.
My 2nd fellow has the tube and we have been blessed he has had very few troubles with it. He hasn't lost as much weight, it is very easy for the wife, she feels more involved with him. They use a huge syringe system. I think his complications and immune system have been much better. As a care giver the amount of worry regarding such a crucial element is so much better. These are my thoughts and opinions from my observations. hope this helps.

Sher

 

[hearts_and_thoughts]

My brother (Bulbar Onset ALS) was having difficulty taking meds, choking on foods orally and swallowing water. He decided to get a feeding tube to help with those problems. Unfortunately, my brother has taken a major turn for the worse since the surgery. He was not able to have anesthesia except for the initial incision site due to his breathing difficulties. He felt the procedure go through his stomach and intestine and it was extremely painful for him. He was given morphine prescription for Hospice to give but he refuses to use it.

Prior to the surgery, he was on bipap only for night time and day naps maybe 2x a day. Immediately after surgery, he had to be on oxygen 24/7 along with the bipap. He has been experiencing rapid deterioration in his limbs. He was experiencing diarhea and had nausea every time he ate. Of course, it may also have been his meds given through the tubes that caused the problem also. In my brother's case, this PEG TUBE did not help. However, I believe he may have waited far too long for it. He had already lost 60-80 lbs before he got the PEG TUBE.

 

[Al]

When you lose 60-80 pounds I would assume that is 1/3 to 1/2 your body weight. To not expect complications is unreasonable and unfair to expect a great prognosis. Given the body weight loss I would expect the breathing problems, possible infections and general decline in health. The PEG tube might have helped him 6 months earlier. To say it didn't help is like saying a bandaid won't stop infection. It might if you put it on early.
Sorry to be blunt.
AL.

 

[hearts_and_thoughts]

Al: To be blunt was perfectly fine. I believe he waited far too long. It's like giving chemo to a cancer patient in late stage 4. The results aren't likely to be beneficial. But, he finally did try I guess. He was very much in denial of his disease and it's progression. He also didn't do the follow up needed with the nutritionist and doctors. He told them he was doing fine and didn't report the diarhea to anyone. He hasn't even gone to a follow up appointment since the surgery on January 9th. He would not let me report it and I don't have "rights" to. He told Hospice he would fire them if they tried talking to the doctors who were giving him medicine.

So, in my opinion, the patient's decisions have a huge effect on certain aspects. My brother, in his denial and stubborn independent strength/anger, whatever it is/was, caused himself to delay many things that may have helped earlier on. I'm sure the healthcare professionals will experience someone like my brother in their career. And, in this case, this was the outcome.

God Bless you...
Mary Jo

 

[nspoc]

Wow Mary Jo!

You are a hero to be helping your brother with this.

Regarding the tube - my PALS experienced terrible pain, a serious setback in her ALS and diarrhea. The dietician said the diarrhea could be expected after the first feedings and to initially mix half water and half formula. Then we slowed down the formula infusion to about 45 min. per can of formula - maybe even longer. Diarrhea gone in 3 days.

The pain was extreme and debilitating - lasted 8 weeks and then was gone. Vicodyn did not help much.

Once she regained about 14 pounds she rebounded in her strength and endurance - exceeded the pre-tube levels.

She did not wait too long - got the tube as a stand by measure - no swallowing issues, but had lost weight.

Want to let you know about her severe pain and it just went away - but did take 2 months!

I am so sorry that your brother is so angry! I know antidepressants would help - but I am sure he would refuse them.

As a matter of info on the Hospice thing - I am not sure the nurse has any right to NOT inform the doctor of the changes. Of course your brother could fire the hospice for any reason. But I have consulted in nursing, and have lots of ethics training - I believe the nurse has an obligation to keep the doctor informed about the patient's condition because the doctor is directing the treatment, not the nurse, Ultimately the patient can refuse any and all treatment, unless he is a public health concern (TB, MRSA, etc.).

At any rate - I do think you are a hero. He is incredibly lucky to have you - he sure is trying to push people away! Very sad.

Best to you - Beth

 

[hearts_and_thoughts]

Beth: Thank you for saying such a thing...but, believe me, I am no hero. I can be and am just as stubborn as he is and that can make for some "not so peaceful" moments. As for Hospice speaking to his doctor...he got his PEG tube in Michigan and receives Hospice in OH. He was supposed to transfer to another doctor here but didn't. Even if my brother tells the doctor at Hospice, they know that it is better if they stick around at least for my sake if not my brother's and just let the pieces fall where they may with regards to the diarrhea or other issues that arise. Basically, it comes down to the end result of my brother having the control and Hospice just informs him of the options and risks. They can't force him nor can I. It is his choice...good or bad.

 

[Al]

Well Mary Jo, like they say, you can lead a horse to water but you can't make him drink. Too bad you got a mule.
AL.