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

[speechie1]

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.

[Al]

Hi speechie1. Thank you for caring enough about a patient to ask questions. I hope I get someone such as yourself when the time comes. Is there no patient advocate you can discuss this with? I don't have a tube but will get one when needed. I have a couple of programs on my computer to help with using it. I will get an eyegaze system if needed. I want to live to see my grandchildren. Maybe this patient thinks he has nothing to live for. Just about everyone I have talked to here or at the clinic is devastated at first diagnosis and says things that on further reflection may change. Your patient may or may not have changed their mind but I would or at least ask to speak to the family so they can explain the options. That is assuming you won't get fired for over stepping your boundaries. That's my opinion and I'm sure you'll get a few others. AL.

[CindyM]

Hi Speechie1-I agree with GrampAL. You raise questions that we will all need to face at some point. Thank you for that. I am puzzled by the attitude of Hospice. As long as the information is presented in a sensitive and respectful manner, the patient has a right to learn about his or her options. If the patient does not want to hear about options, so be it, but you were only checking back to make sure he still was not interested in learning about his options, right? At any rate, I sympathize with your position. It is tough to be in the middle when folks turn questions of care into what amounts to an a political football.

[paula B]

Hi Speechie,
You did your best with George,,you did ask him during first visit about tube. You sound like a very caring person,,stay that way.
Correct me if i am wrong,I was led to believe that hospice comes in when a patient only has maybe six months to live,,so perhaps now it is to late in the game for tubes and such. I am just going by what i think i read somewhere.
Sorry if i sound blunt about this,,i am not trying to.

PaulaB

[speechie1]

Well, I talked briefly to the hospice manager this morning, and she was quite insistant that the patient did not want more speech therapy, when his daughter told me that he did. The manager was quite gruff, and said that the daughter needs to talk to the hospice department, and not to me. SO I advised the daughter to call hospice and voice her concerns. She did, talked to the social worker, and the hospice social worker apparently told the patient's daughter that speech will go back in. SO! Here I sit and wait for the "okay" to go in to see the patient.

I would love to be a fly on the wall during the social worker and manager discussion! It will be interesting to see what happens, and I will keep you posted.

Thank you all for your support, comments and encouragement. I spent hours last night reading through previous posts, and have learned so much from all of you. It was quite a humbling experience.

Thanks again! God Bless.

[shelli458]

All people are different and I could've sworn my mom would've gone for the ventilator for she loved life.When it came down to it she chose not to ventilate.We are so gratefulshe did because she went peaceful and didn't live as a "body"and and not as she had(lively and robust)/though I'd give anything to have her here today.The g-tube was her downfall,it made her sicker and thinner.

[Al]

Hi Shelli. Once again I am sorry about your mom but you are the first I have heard say that a PEG or G-tube made someone sicker and thinner. The tube usually helps the person to gain back some of the weight that they have lost. One problem with them is that people don't get them until they have lost too much of their body weight and then you just can't pump enough down the tube to bring them back up. That is one of the reasons that we stress here that you have to know your treatment options and be your own advocate and not wait until it becomes an emergency to make a decision on treatment. AL.

[speechie1]

I'm BACK IN BUSINESS! :)

So, apparently there was a huge misunderstanding, and the hospice manager thought I was telling hospice how to do their job (which I WASN'T!), but things are cleared up now, and I am back on the case, able to see the patient. I will be heading over to his home this afternoon, and I am SO excited to see him, and show him the options for thickened liquids, diet modifications, and different communication devices.

Thanks all for your comments and concern. It sure is nice to have such a great place to ask questions and get "real" answers instead of looking in medical books and just get the "text book" answer. You are all an inspiration, and hope you're all doing well.

Thanks again! :)

[MtPockets]

Great Job Speechie,
I know they will be excited to see you too. I can tell by the excitement of your post.

God Bless
Capt. AL

[GinaD]

My dad had said from the onset that he would not get a feeding tube. He continued saying that until he absolutely could not choke down anything, no matter how much thickener he used. So....he changed his mind and got the tube. That was 5 weeks ago and that "simple" little procedure almost killed him. He had it one week before they discovered it was abscessed so they yanked it out and socked him into the hospital for a grueling week until he was able to stand another surgery. He has been home for 2 weeks with a continuous feed pump, which he absolutely hates. This whole ordeal really whipped his behind and seemed to kick the ALS into fast overdrive. Hospice has now been called in and he is rapidly going downhill. I said all that to say this, he told me he still feels like it was the right choice for him because it was another tool to fight with. And boy, he is a warrior!!

[Barbie4]

Just read all of these past posts, and I say, give it all you have got. You have an obvious kind and caring personality, that I am sure George appreciates. Be the best you can be and boy ,George and his family are lucky to have such a passsionate person helping with their care.

Good for you !!

Barbie

[CHRISTABELL]

i HAD A FEEDING TUBE PUT IN NO BIGGIE , MAKES LIFE EASIER AND THROW ALL THE STUFF IN I DONT LIKE THATS A BONUS:)

[CHRISTABELL]

First Time Doing This Well Have Feeding Tube No Big Deal My Advice If You Need It Get It:)

[CindyM]

Hi there Speechie. Glad things wroked out for you and George. I am sure he will appreciate your thoughtful attention. I'm happy for you that you're back doing the job, and allowed to do it as you see best.

[gapeach]

My husband immediately after being diagnosed was instructed to get a feeding tube which he did 1 1/2 weeks later. He can still eat some and is using his tube for water and ensure right now. We felt like it was something that would still give him quality of life and it was quite sore for awhile but is better. He has bulbar als and even though he was just diagnosed in Sept they have only given him 6 or 8 months before he would have to have a vent if he so chose. He is progressing quite fast and would not even have that long without the feeding tube probably. He has already lost 21 lbs and he is still eating by mouth some. About hospice - that don't do anything that prolongs life only palliative care. My mom is on hospice for kidney failure and they can be on it longer than 6 months because sometimes they rally some and are doing better. My mom has stayed at 10 an 11% kidney function for 7 months which is unusual but she is a fighter. Thanks for being a caring person!
gapeach-susan

[speechie1]

Thanks so much for all your kind comments. Things are going quite well between myself and the hospice department, it was all a big misunderstanding. As for George, he is still eating and drinking, and I have explained (in pretty great detail) what will happen to his swallowing, and he wants to put the whole swallowing therapy on hold for a while (we tried thickened liquids and he wasn't fond of them!).

Because I found so much information on this website, as well as caring, compassionate people, I actually printed off a few of the forums to give to him to read. Just by reading several of these posts, I have learned a tremendous amount of information about ALS that could NEVER be learned from a textbook. I know that George would not have accessed them on the internet, so I took the liberty of printing them off for him. You all are so inspiring to me, and to many others as well. I had also printed a few forums off for my other patient with ALS, and he and his wife were so unbelievably thankful. They keep asking me what they "owe" me for printing them so much information (I also printed the ALS book from the Canadian ALS Foundation), and I just tell them that it is my job. I certainly couldn't have given them so much information if it wasn't for all of you and this awesome site!

Thanks again for all your kindness and information. I will keep you posted as things progress. Happy Thanksgiving and God Bless!

[Al]

Thank you for being such a kind and caring individual. We look forward to hearing from you. AL.

[Lindoglvr]

Hi Speechie,

I'm also a SLP and have been practicing for 15 years now, with most of my experience in neurogenics and dysphagia. I find it commendable that you came to this forum to ask others how they feel.

I am a SLP that will educate, educate, educate patients and families on the risks of being oral totally, risk of being NPO with alternative means of nutrition and hydration and those who wish I have a tube and then have pleasure intake.

One of the things you may want to do, if not already, is making sure than any patient is having very good oral care, no matter which route they decide to take. It is essential they have clean mouths to eliminate the risk of aspirating oral flora. Oral flora has been shown to increase the risk of aspiration pneumonia more than aspiration of food or liquids.

I tend to try to balance the patients' desires, with safety and nutrition and hydration needs. It can be quite the balancing act as I'm sure you well know, especially if you aren't able to see a patient for very long.

Lots of my recommendations depend on the patient's disease state, desires, severity of the swallow, and discussion with the physican, patient and family on what I'm recommending and the rationale.

Without boring other people on dysphagia here or confusing them, I just want to say that if you ever want to contact me so we can have professional discussions, feel free.

I am new to the board, as I think I now have a MND, but will have to wait to see what the doctor and further testing say.

Good luck with everything and your patients!

God bless,

Linda

[Brentt]

I had a negative attitude about tubes when I was introduced to them after my DX. I grew concerned over time and as I progressively weakened and lost weight I knew that I had to do something quite different .I tried things but after choking and almost passing out ( freaked out my wife and daughter ) I new if I wanted to live that I would need to re evaluate my prospective on the PEG . My family is too dear to me and being a burden to them was a big concern to me . When I saw the look on my wifes face after I changed my mind and decided to have a tube installed I knew that I made the right discission . And after the tube was inserted I could see how much of a difference it made .I put on a few pounds and started to show a more vibrant reflection . My friends would tell me how much better I looked and that my facial skin had a healthy glow . But the way my wife has maintained the feeding tube ,the time and care she put into it every day I new that the decision to go with it was right . After 6 months now the opening is almost healed all the way . I know it won't completely heal but the condition at the site is pristine . I have my dear wife to thank for this ,just one more reason I changed my mind .

[Al]

Thanks for the input Brentt. We need good evaluations from people that have had these procedures. Whether it is a good or bad experience it helps to know so that we can at least make an informed decision for ourselves. AL.

[felicia]

hi speechi, i can not speak. i communicate using a DynaVox talking machine. it has phrases, keyboard to type words and speaks what i want to say. as for a feeding tube, i too, said i don't want one. but i am slowly changing my mind. i don't want to starve to death. god bless, felicia

[Lindoglvr]

Hi Felicia,

This is Linda, another speech therapist. I think a feeding tube is good in a lot of cases. For one, it allows you to get your nutrition and hydration needs if you're having difficulty swallowing, even if it's just to supplement oral nutrition and hydration due to swallowing difficulty.

A person with dysphagia, might not be able to meet their needs due to fatigue and the length of time it takes to try to complete a meal. In these cases they need either oral supplements such as Boost, Ensure or others.

Nutrition is so important for chronic diseases. For one, it helps to elminate weight loss, which could lead to skin issues and also bed sores if the person becomes too thin. It also allows proper hydration, and the ability to maintain electrolytes, protein stores, etc which are so important to overall organ function.

I think sometimes people get the idea that once they have a tube, they can't have oral feeding, which is not always the case. As a speech pathologist, I play it case by case and also based on individual desires, their risks, etc when making my recommendations and also educate on the pros and cons of both.

Hope this will help you in your decision making.

Linda

[davis06]

hi speechi, i can not speak. i communicate using a DynaVox talking machine. it has phrases, keyboard to type words and speaks what i want to say. as for a feeding tube, i too, said i don't want one. but i am slowly changing my mind. i don't want to starve to death. god bless, felicia

I had my tupe put in a couple mo. now at first I didnt want it but since I have it now
I wouldnt be without it. It really helps I use it when I want . The surgery is not that bad. You just have to take it easy for about a week.

Davis06:)

[felicia]

thank you linda, i was afraid to have a feeding tube because i was in the believe that once on a feeding tobe i could not eat by mouth. god bless felicia

[Lindoglvr]

You're welcome Felicia. By the way, medicare changes the rules all the time on what constitutes requiring a PEG and their payment. Your meals might be put down as "pleasure feeds" for payment of the tube feeding. Each facility is different on what they provide for a "pleasure" tray.

Usually, you can get the tube and supplement your intake with Boost or Ensure through the tube, which is cheaper than actual feeding formulas, if your primary means of nutrition will still be by mouth.

Usually it's when you aren't meeting your needs orally (usually a calorie count of less than 30-50%, I forgot the actual amount) in which the tube feeding would be required and then a "pleasure feed" would be implemented.

I hope this information hasn't confused you more, but it's to help clear up the discrepency on once a tube, no oral feeds.

Linda

[felicia]

thank you davis0, i needed that good info about the feeding tube. in the few days, i find myself choking on my oatmeal. especially towards the evening when i eat i have a tendency to choke more on my food. the caregiver blends my food but sometimes i don't want him to blend my foods to much. that's when i have to pay the price and choke. felicia

[Nita]

My mum :confused:

--------------------------------------------------------------------------------

What can i say my mums been having symptoms of mnd 4 over a year now she chokes on everything her weight has plumitted to a mere 8 stone she was diagnosed in june with mnd she seems happy enough but cant sleep or eat fasten her coat carry her bag everything is a struggle the doctors say dont try to explain the ilness to her why go with feeding tubes and masks only to prolong the illness has she much time left.
I love my mum what do i do ive never cried so much in my life shes just so brave shes only 64

[Lindoglvr]

Nita,

I think it's unfair of them to say why prolong it? For one thing, there is a difference in making one comfortable and preventing other problems to make her more comfortable, such as using Bipap to help with her breathing and a tube to make sure she gets her nutrition in hopes of keeping some of her strength up and hopefully avoiding things like bedsores........and prolonging her existence by putting her on a vent later when she has more respiratory problems etc.

The decision should be your mother's with all the information and if she wants her family involved, the decision of the family. No medical person should be making the decision for her or your family. The do not have the right to decide her wishes or your wishes, only to inform you of the consequences of each decision so that you can decide based on ALL the information.

Linda

[redlipp]

i HAD A FEEDING TUBE PUT IN NO BIGGIE , MAKES LIFE EASIER AND THROW ALL THE STUFF IN I DONT LIKE THATS A BONUS:) what can you eat thru your feeding tube? my dad has been on a feeding tube since early may and all he gets is liquid, he had and anterior cervical spine surgery and hasn't been able to swallow anything since.

[Nita]

Hello again thankyou for your replies the nurse came to see my mum today and the dietition she has put 3lb on:-D we spoke
about the food peg my mum said she wouldnt like it.
In rare cases the mind can be affected by mnd which is happening with my mum she does get a bit forgetful and is sometimes like a child she tells the doctors shes not sick and goes on bus rides into town only to come back again 2 or 3 times
a day. Her quality of life is already changed all we can do is
take each day as it comes.

[emjoi]

I get the impression that there's a few stages in the decision.
Early in the piece, there is a Theoretical "Oh, I'm not going to do that!", but then eventually the reality of it hits home. Whatever you think of the "indignity" of it, it's better than the alternative.

The second hurdle is the simple fact that it's another notch downward. You don't want to have to admit to yourself that things have gotten worse. And that can lead to a delay in the descision that can cause unneeded suffering.

[Nita]

Why is my mum acting so weird nothing is sinking in shes not a bit well but why do i feel so angry and unable to cope My mum never slept all last night she sat with her coat on and opened and closed the door about fifty times. She came to mine about 12 30 am and paced up and down all day till 6 30 pm sat down slept for ten minutes and went home at 9 pm. Do you think there is any cause for concern.Help because i dont know what to do.:cry:

[dianelynn17]

Hi Speechie,
I am so proud of you. Just look what you started with this forum. I have
learned alot from you and others. I also want my Mom to have a feeding tube.
She is losing weight & I think like Al says that the sooner the better. She is
have some swallowing problems now & the speech therapist that use to come
to help Mom can no longer because she says that there is nothing more she can
do with Als & her swallowing. I kinda think thats bull. She also mentioned medicare
not paying anymore for this but with Moms DX I am sure she can receive alot more
help. She started noticing her one leg getting weak and slurred speech last
october. She is using a walker now & her speech is hard to understand. Some days
are better than others. Do you have any suggestions about what all she can drink.
I don't want her to dehydrate. I put thicker in her water and coffee but what else
can she have to drink. Poor thing looks so fragile. I am checking into the next visit
with her doctor on Jan 30th for opitions on a feeding tube. I bet she would at least
gain alittle bit of more weight. I would appreciate all you could tell me about the
liquids we can give to Mom. She has problems with dairy products. She seems to
cough alot from them. Again, I am proud of you and all the info I am learning
about just having you check into this forum. I wish Mom had you.
Have a Nice evening.
Diane

[hboyajian]

Dianne, my dad also has difficulty with swallowing and is on a completely blended food diet. He drinks juice with thick-it in it. Apricot or pear nectar was recommended by the speech therapist because it is a little thicker to begin with. The juices should not have pulp though, as the little bits of fruit can cause problems. He also drinks smoothies (yogurt, banana, strawberry, also ice cream sometimes). Your mom might not be able to have that because of the dairy, although yogurt might be different than plain milk. There are soy based "ice creams" which might work instead of the yogurt. We also put Ensure with it , which is a high protein, hight calorie drink also with supplemental vitamins and minerals. I also got some pretein powders that can be added to increase the nutritional value. You could put other fruits in it. I have used canned peaches also. There are several kinds of milk substitutes (soy or almond drink for ex. ) if you need a liquid that has some nutrition in it. Hope any of this helps. Holly

[dianelynn17]

Hi Holly,
Thanks alot for you help on this. Does your Dad have a tube? I will
surely try these things. I do have peach and pear nectar. How long
has your dad had this? My Mom has had it for about 1 1/2 years now.
Just got diagnoised. Sad.
Thanks again,
Diane

[dianelynn17]

Hi Christa,
So you have a feeding tube? I want my Mom to get one also. Can you tell
me alittle about it. What it details and how to take care of it. Mom does
have problems swallowing and we want her to get her nutrituits and not
to get dehydrated. Who also do we talk to about this. Any help would be
much appreciated. How long have you had als?
Thanks alot,
Diane

[hboyajian]

Dianne, My dad just got a feeding tube put in a week ago. He is now able to supplement his meals with tube feedings, which consist of Ensure and water to flush out the tube. His ALS doctor, a neurologist who specializes in motor neuron diseases, referred him to a gastroenterologist for the surgery to place the tube. The tube feedings are not hard to do. You heat up the water and Ensure (or other nutitional drink that your doctor might prescribe) in the microwave so that they are warm. Then use dispensers ( large plasic syringes) to insert the liquids into the tube. The dispensers have to be washed and boiled after each use. My dad needs another person to do the preparation and feeding, as he does not have the strength and coordination to do it himself. There are some down sides to it. Scheduling his life became more difficult, as the tube feedings are supposed to be done at an interval after eating by mouth. Since eating takes so long to begin with, he feels like his entire day is taken up with feeding. Before, he was able to get out of the house some for social interaction. My parents have to figure out a new schedule that works. He also has more trouble with having to get up numerous times at night to urinate. He probably was getting dehydrated before, but now his body isn't used to all the fluids. He is 84 years old, so a younger person might not have this difficulty. The other problem for him is that the surgery itself weakened him condiderably. I hope that he can regain some of the stamina he had before the surgery. He was weak then, but he is really weak now. This also might not be as much of a problem for a younger person. It has only been a week, so time will tell for him. However, the other option would have been to gradually watch him be able to eat less and less, and perhaps become unable to swallow at all. I think the tube feeding will strengthen him compared to not having it in the long run. It is discouraging for him at this time. I don't mean to discourage anyone else from getting a feeding tube if you need it. I am just letting you know my dad's experience with it thus far. I think he would have liked to know what might happen rather than be surprised by it. The doctor told him the surgery would be "no big deal" which has not turned out to be completely true for him. As I said, I am sincerely hoping it will be a positive choice in the long run.

[Al]

Hi guys. We do encourage both sides of the story here. The doctors can tell us all they learned in medical school but it is we who are living it that can really give honest opinions on what works for us and what doesn't. What is good for one might not be good for another but at least if you have read what someone else has gone through you can make informed decisions. AL.

[hboyajian]

Thanks, Al, I was a little concerned I was scaring someone away from a procedure that might be a good idea for them. As you say, with more information people are better prepared to make their own decisions. I would like to add that my mom called today to tell me that Dad has gained 2 pounds since he got the tube a week ago. Now he is 101.8 pounds. I know this sounds frighteningly small, but it is better than 97, which was his weight at the lowest point several months ago when he lost the ability to swallow solid food. He was gaining with the blended food regimen alone, but only 2 pounds in 2 months. This is the first time in months that Mom has called me and sounded genuinely happy about news regarding Dad's condition.
Dianne, in answer to your other question, my dad has had symptoms of ALS for 2 and a half years, but was only diagnosed in October of this year.

[edna may]

HELLO! THIS IS MY FIRST TIME, i WAS DIAGNOSED IN MAY 06 i AM ABLE TO HOLD MY WEIGHT BUT MAY SOON HAVE TO DECIDE ON A TUBE, MY FEEL ING IS I WOULD HATE IT, YET I BELEIVE I WILL DO IT WHEN ADVISED. MY INITIAL FEELING WAS TO DO NOTHING. I FELT AS LONG AS I HAVE TO GO LETS GET ON WITH IT. BUT I HAVE A VERY LOVING HUSBAND OF 60YRS AND THE THOUGHTS OF HIM MAKE ME WANT TO LIVE AS LONG AS POSSIBLE, THERE IS MUCH TO APRECIATE IN THIS WORLD AND I PLAN TO LIVE ONE DAY AT A TIME AND MAKE THE BEST OF IT. JUST MY INPUT OF TO TUBE OR NOT TO TUBE. EDNA MAY

[CindyM]

Hello Edna May. I am so sorry you have this horrible disease. Hopefully this forum will prove a source of comfort for you and your family. I wish you peace and lots of support as you wrestle with the major decisions that this disease requires.

[hboyajian]

Both the ALS doctor and the gastroenterplogist told my father that the surgery to get the PEG tube inserted was "no big deal." This is probably true for most people with ALS. When he was diagnosed Oct. 23, the doctor told him he might have 1 year to live without getting the tube and 2 years with the tube. This is a big difference, so he decided to go ahead with the tube. My dad was 84 years old, however, and the surgery and/or the morphine pain killer he was given afterward affected him adversely. He was much weaker and discouraged because of this. A few weeks later, he was having greater difficulty breathing. This may have happened anyway, and have nothing to do with the PEG tube surgery. But because this happened so close together, it is hard for me to separate. My father passed away 2 weeks ago, just 19 days after the surgery. I have no way to know what would have happened if he had chosen not to get the PEG tube. Maybe he would have been with us longer, but later have become unable to eat at all and starved to death. Perhaps that would have been worse. Perhaps his breathing difficulties would have come on so quickly anyway. I don't know. However, I do know now that for a person over 80, the surgery may not be "no big deal." If you or your loved one with ALS are elderly, I would recommend considering this factor with your physician. Perhaps you could ask them to examine the data regarding older patients.

[Al]

The fun? thing about ALS is that we are all different. A small surgery for a 55 year old is a lot different for an 80 year old. I and many others on this forum have said before that you have to have the knowledge about the procedures and have faith that your doctor knows what he is doing and has' Your' best interests at heart. One more reason to be seen at an ALS clinic if it is possible. AL.

[anne]

My mom is on an emergency waiting list for a feeding tube. She is 75 almost 76. My mom's breathing has been fine up until now. I have been very nervous and scared about her getting this procedure done. After reading your post hboyajian, I am more so worried and scared. I guess I need to say lots of prayers. Anne

[hboyajian]

Anne, I really feel for you and will hold you and your mom in my prayers. I have no medical expertise, only my family's experience with my dad, which is just one person and may be an exception. Every person experiences ALS differently, so your mom may be just fine with the PEG tube surgery and it could be helpful in keeping her nutrition up now and critical to her survival later. However, if I had known how adversly my dad would react I would have taken a week off work right then. I was saving my time off for the Spring when I figured he would be yet weaker and need me even more as the disease progressed. Ask all the questions you need to of the surgeon. Ask about age if it is worrying you. Maybe there are precautions they will take or can reassure you about your mother's strength level regarding the procedure. As I said in the above post, maybe it would have been worse for my dad without the tube in the long run. Sincerely, Holly.

[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]

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]

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.

[nspoc]

Hi again Mary Jo -

I guess I can only agree with Al.

Everything you say is so right - ultimately it is his decision about his own care. And you are so right that things are better with hospice there to help you rather than handling him all alone.

Still - there must be a special place for you in the hereafter. I will be sending good thoughts your way. Take care - Beth

[hearts_and_thoughts]

Beth: Thank you for your thoughts about the hereafter....that is what is MOST important to me. In these difficult times, when I feel I am not the Christian that I so desire to be...showing love, peacefulness, joy, patience, kindness...etc...and showing the anger and frustration toward God and my brother in place of that...I so dearly appreciate it from the bottom of my heart and depths of my soul.

Thank you!
Mary Jo

Somebody once told me..."God works in mysterious ways". Well, I've heard that more than once!!!

[CindyM]

I hoipe today is going more smoothly for you, Mary Jo. You deserve at least a few good hours every day!! Cindy

[hearts_and_thoughts]

Today has been difficult already...sorry to say. But, the Amish lady is here until 6 and I'm going to bed. Thank you for your thoughts Cindy. So, how did you become a moderator? I truly feel blessed for finding this forum. It helps me through the days.

[CindyM]

My journey with this board started when my local docs (3 of them!) all suspected I had ALS and sent me to a major clinic for a 2nd opinion. I did not know what the disease was, and in looking it up, came here. Folks like Al and MT calmed me down, pointing out that local docs often do not know the disease very well, and if an ALS clinic confirmed it, then I would be among very good company.

SO far the clinic is holding off, (knock wood.) But I told AL and David that I would stick around for as long as I am needed. Most days I feel like the volunteer I am, but other days, like today, I feel like a PAL waiting to happen. Oh well- every day can't be a good day!

Thanks for asking.

[hearts_and_thoughts]

Where in New England? My sister went to Boston for her DX. She was living on base in Japan when she started having symptoms. By the time she came back to the states, she had lost total use of her left arm. A Boston neurologist diagnosed her. At the time, she stayed with my eldest sister who lived in Amherst, NH. However, my eldest sister now lives in Newport, RI. Her daughter lives in Providence, RI and her son lives in Simsbury, CT.

I just said a prayer that you will not be diagnosed with ALS and I sincerely hope that to be true. You seem like a very caring and intelligent person.

God Bless You for all you do....

Mary Jo

[ZenArcher]

Every morning you wake up is the start of a good day. Its how you deal with what happens throughout the day that decides how the day ends. To paraphrase quadbliss (Mike) via Adam Savage from MythBusters, "I reject your reality and substitute my own"

[MtPockets]

I wish the best for all those here and peace for your journey.

For those who might want to look at a Thread dealing with spiritual topics please do a search for the title on the threads with the search link above,
Encouragement for Hurting Christians

and also the new thread called

CHRISTIANS HERE TO HELP YOU AND TALK

I do not wish to offend anyone and their beliefs. Each of us has to face this walk with our own way of handling things. If you have questions of a spiritual nature and would like to discuss them with a Christian, please feel free to ask them on the above thread where other Christians may answer you as well as me, or e-mail me at grandpamarble@cableone.net

My Teacher told me, "Above all things, to be at peace with all men, if possible." This is all I try to do in my own awkward way.

For the benefit of the newbies on the forum. I am a grandfather to 17 grandkids and have 4 children. I am currently 61 years old, and I have a lifetime of experiences, varied like you would not believe, including being Dx with ALS May 11, 2006.

I am currently confined to a wheelchair and I am in the process of losing my ability to use my hands and upper body movement.

If you are sick, I've been there.
If you are rich, I've been there.
If you are poor, I've been there.
If you feel hopeless, I've been there.
If you are mad, I've been there.
If you are sad, I've been there.
If you feel you are facing this all alone, I've been there.
I've been up, down, in, out, crazy, sane, you name it I and I can claim it.

So you see I can identify with most of you and what you are going through.
Now if none of this fits you or your loved ones, happy living and goodbye. :confused:

God Bless,
Capt AL

[CindyM]

Every morning you wake up is the start of a good day.

Hey Jeff- you are so right. I just re-read some of my posts form last week and was surprised to see how discouraged I was. LOL, I told somebody it must have been jet lag but I really think it was grand-children withdrawal. :-D Anyway, it is nice to be reminded that we make our own reality!

Captain AL- thanks for offering to help with our spiritual needs.

[MtPockets]

Thank you so much Cindy.
God Bless
Capt AL

[Vicki S]

I was one that at the onset I said no feeding tube. I forgot that I wouldn't be able to drink water so that changed my mind. I don't have any problems yet with eating but I told my husband that I had changed my mind about the feeding tube and he told me to put it in writing.

Vicki S

[Lorie]

Tim don't want any Life Support, now. I have told my husband all I will take is a Feeding Tube. With the Stomach I have, I may very well have to. Who knows!

Like Mike said: Put it in writing. You can always change your mind on any of it. Taking it or not taking it. I hope that will not be soon for you!


Lorie

[Confused and disappointed]

My brother in law was on the feeding tube for some time before he passed away, and also his bi-pap machine both up until the day he passed away which was last Wednesday. My niece wanted him to go peacefully, and even though she had power of attorney, and he had a DNR, he agreed with her on the feeding tube and bi-pap machine. His doctor in Hospice said it would add a few more days or weeks perhaps. Not using it would probably have sped up the process. He died peacefully looking into his beloved daughters eyes. I believe with my whole heart she made the right decision. If you want the feeding tube you should have it, and if you do not then that is your choice, but choices you should have. Do not let the doctors, hospital, hospice, anyone tell you differently. They tried that with my niece but she remained constant in her decision. Do what you feel is best for yourself. Like someone said you can always change your mind.

[sherry0459]

OK everyone heres one on the prevent side, my neuro said that I should consider the PEG before I started to have trouble aspriating. I choke multi times daily. So far no fuild has remained in my lungs, (I am able to eventually cough it out). He sees this as preventive, needless to say I am concerned. I, like many of you said I would never have feeding or trac so My mind was made up I thought now I am confused about going ahead with this. What he said made sense. One concern is bloating, diarrhea and other GI problems. Sorry for being blunt. I know the Dr will answer these questions but, I hope someone with personnal experience will help me know what to ask. Any one who has had it please let me know how your GI took it. THANK YOU FOR LISTENING!! Sherry

[paula-jane]

Sorry Sherry,

I don't have any experience with GI tubes... however, I can confirm that if you make decisions to have tubes or vents or bi pap or anything else to help you, you will need to make your decisions known well ahead of when you need the devices. ALS can be an impatient disease; be prepared for the next thing well ahead of time. I've always said that we were always playing catch up... by the time we got something, we needed something else! You've got to be one step ahead... all the time. I hope someone else responds to your question about how the GI takes the tube.