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Nov 8, 2006
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. 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.
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.
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.
Dont fret you did your best

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.

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.
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.
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.
I'm Baaaaaaaaaack!


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! :)
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
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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!
hey Speechie

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 !

Feeding Tube

G Tube

First Time Doing This Well Have Feeding Tube No Big Deal My Advice If You Need It Get It:)
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.
Hi, Speechie 1

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!
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