Feeding Tube and Vent...

[JimInVA]

I'm now at the point of needing to gain a better understanding of the Pros/Cons of the feeding tube and vent. My wife's current disposition, is to not do either of them. She is quite open to some type of cough assistance.

At this point in her progression, she's able to eat (at least to chew and swallow... though her ability to get a fork or spoon to her mouth won't last too much longer). I am beginning to notice that her voice is getting slightly weaker. It doesn't seem that she notices yet (and unless she comes in here and sees this thread, I'm not yet inclined to bring it to her attention). As long as she is sitting upright, she doesn't have much difficulty breathing. If she leans back too far... or lays down... she gasps for air. She uses a BiPAP during the night (what a wonderful machine) but nothing currently during the day.

As her last lung function test had her listed at 45%, I'm not sure how much longer a feeding tube will remain an available option for her. She equates not being able to swallow as being equivalent to not being able to talk (i.e. she expects they will both arrive in unison). She is determined (at this point) to not make any decisions that will prolong her life... especially when "quality of life" has become minimized (i.e. can no longer move, eat or communicate).

Difficult as it may be, I'll support Darcey's wishes. It is something that we promised each other. I just want to be sure, however, that her decisions are equally founded upon good information and knowledge... and do not become something regrettable at some future time because she "didn't know that".

I would appreciate hearing what you amazing people think, know and might suggest... so that I can begin to form my own knowledge base and opinions... and subsequently help provide good information for my PALS.

Thanks!

Jim

 

[dalvin]

Jim, speaking for myself, the feeding tube has allowed me to maintain my weight without the danger of chocking or aspirating. Meds are crushed, mixed with warm water and go through the tube. I don't see this as nesseccarily a life extender but rather it improves the quality of life.
As for the vent, I'll let others weigh in on that but I decided against it. It may extend life but it also puts a much heavier burden on the caregiver.

 

[MaxEidswick]

> I decided against it. It may extend life but it also puts a much heavier burden on the caregiver

Ditto that!

 

[Barbie]

Jim, my husband does not have a peg, but from everything I have ever read here I wish he did. that is a discussion you need to have with her and her doc. she may be near the time she has to make that decision because of her breathing. choking and aspiration is not fun for him or me and very scary to go thru from both the Pals and the Cals, and my husband is so horribly skinny it is like looking at an Auschwitz victim (no offense meant to them AT ALL). It will make meds easier to take, shorten feed time, reduce choking, help her keep her calories up, and she can still eat by mouth even with it if she is capable.

 

[Nikki J]

Jim, I do not need them yet but my current plan is feeding tube yes vent no.
I am FALS and have seen this play out. My mom chose no feeding tube. It was horrendous. She died in 2012 and I am still traumatized by the memories of her choking more and more,eating less and less and getting thinner and thinner. My sister delayed a feeding tube and went through much the same thing. It was horrible and exhausting for her and her caregivers. Meals took well over an hour even as her weight dropped to dangerously emaciated level. She finally got her tube, almost died in the process because she waited too long but has gained back weight almost to her diagnosis weight which was thin. She recently admitted her neuro was right and she should have got the tube much sooner. It has to be an individual decision but honestly feeding tube is a comfort to PALS and CALS
No one in my family has vented yet.

 

[GregK]

Barbie, Nikki, good info from two different viewpoints. Thanks.

> it is like looking at an Auschwitz victim (no offense meant to them AT ALL)

ya, I look down at my legs and am reminded of those horrible historic newsreels they played for us back in college...

 

[Santa joe]

As for our situation, the peg was a wise choice. I can't say the same for the vent. Jim I wish you could come and live with me for a week before making a decision on the vent. It's a very long hard road to travel, not only for the pals but for the CALS also. There are so many limitations to ventilator patients. I have asked Santa Joe would he do it again. When he could speak "NO" is what he replied.

It's a very personal decision. I didn't want him to be vented but supported his choice. Didn't have the guts to say no.

Debbie

 

[rosec]

My PALS has a feeding tube, no vent. As the others have said, the feeding tube increases the quality of life for the PALS and CALS. We got the tube when his breathing was at about 55%, about three years ago. He could still chew and swallow quite well. At first it was just a glass of water every day to keep it clean and clog free. I think he started with a can of Jevity maybe about three months after getting the tube. As it became more difficult for him to eat he increased the Jevity gradually to six cans a day, over almost 18 months. He tried really hard to keep eating at least a slice of white bread, with lots of butter, for a long time. I think he wanted to prove to himself that he was not totally dependent on the feeding tube. He stopped it only about 6 months ago when he could no longer use his tongue to move the food around as he chewed.

 

[Nikki J]

I missed the 45 percent comment. You can still do it but if you are going to feeding tube it should be soon my sister as I said waited too long and had a very tough time. These conversations are very hard but they need to happen. She gets to choose of course but she should take your opinion into account. This is a rough road for everyone

 

[skipper66]

Jim,
My dad has limb onset. He said absolutely no to a feeding tube and under no circumstances in this whole world would ever be vented. But, my dad is also going to turn 80 soon and I think he would have considered the feeding tube if he were younger. From what I read several of the PALS have lived still good lives with the pegs and managed pretty well. It sounds especially if you have bulbar onset that your passing would be awful without one. My mom had a feeding tube for her colon cancer years ago and though she managed it well she made her doctor remove it. She hated it. In her situation she lived two more years without it. But, that was with cancer and not ALS. With a vent you are pretty much bedriddin? I think anyway. That is not much of a life anymore in my opinion. I don't mean to hurt any members feeling by saying that. Dad has a bi-pap but currently doesn't use it. His lung capacity is still good. What is ironic with him is that he was more short of breath when he was diagnosed 2 years ago then he is now? Can't figure that one out. He also had more trouble with speech and eating at first. He used a bi-pap at night when first diagnosed. He is clautrophobic but tolerated it really well. He said he will use it again. Kim

 

[Diane H]

With a vent you are pretty much bedriddin? I think anyway. That is not much of a life anymore in my opinion. I don't mean to hurt any members feeling by saying that. Kim

My feelings are hurt only because so many people have that false impression of life on a ventilator! The degree of mobility, especially "bedriddeness" is not caused by a vent but rather by the non-respiratory effects of ALS. I used BiPAP in increasing frequency and time for about 6 years before going to the vent. With BiPAP at night my daytime breathing and my general health improved dramatically and I was out and about anywhere my wheelchair could take me. When I needed BiPAP during the day I hated going out in public with that ridiculous looking mask so I only was out for as long as I could get by with out it. When I went on the vent I again experienced an increase in general health, especially stamina. I didn't feel as conspicuous with the trach as I had with the headgear so I was out and about again. Movies, concerts, resturants, picnics, to work with my husband, traveling on vacation-- about anywhere but mountain climbing. In short, if you can tolerate being up in your wheelchair the vent won't interfere with your activities.

Similarly the concerns about the burden of being on a vent for your caregivers are far more related to the progression of ALS than to the vent. Increasing weakness and loss of movement, and loss of speech march on but your vent relieves them of the exhausting and frightening episodes of congestion just as a feeding tube prevents long, tiring attempts to feed you and waiting for horrible choking spells. The real burden you present is that you will live longer!

Diane
ALS: From Both Sides

 

[skipper66]

Diane,
I in no way intended to hurt your feelings in anyway whatsoever. I also think my interpretation of being on a vent might be different I guess then what others are referring too. I was thinking of a oxygen type tent thing in which you are never allowed out of bed and it is the only thing keeping you alive. I wasn't thinking of the type that you can wear around and still do everyday functions. I was thinking of the tent around the bedside and the whole thing. I apologize for my ignorance. Kim

 

[affected]

Jim,
you have raised very good questions, and though we have discussed some of this here at times, I think it is always worth discussing again fresh.

When you have a rapid progression PALS these are slightly different decisions to those with PLS or who are slower progressing. Diane also raises the important point of the order of progression and the areas of progression. A vent when you still have full brain functionality and the ability to have much QOL is a different choice to where you are at.

Deb has always been honest and straightforward about her experience having Jo on a vent so long with no QOL.

In Australia we do not have the option to vent, and I am grateful personally. If Chris had been simply kept alive longer his torment would have been unbearable. It would not have increased his QOL enough for the cost of his prolonged misery.

This is not the same for everyone, so we get a lot of differing views here that are so excellent as together we give a very rounded lot of information. It's the collection of views in a thread like this that are so powerful. There are just no right or wrong answers, but there are collective experiences that can help you and Darcey make the decisions that feel the best for you. Sometimes our PALS make decisions we don't agree with. My response to this was to allow him to make what I felt were bad decisions and just support him in doing that as far as possible. PALS have so little control through this disease (CALS don't feel they have much more either!), so giving Darcey all the information you can, discussing it together and then letting her choose is the most loving thing you can do.

Definitely the peg can be used to give more QOL in that, you can avoid foods/fluids that choke whilst maintaining enough calories and fluids. The PALS can still refuse to take nutrition and fluids through the peg at any point, but meds are so easy to give that way. We also used clonazepam drops at the end. Even with Chris non-ability to swallow, a few drops could be placed in his mouth to be absorbed through the membranes.

I always say however - if Darcey decides peg, do it now. Get it done as soon as possible so that you can do it with safety (they can do without anaesthetic and use xray), heal well and be well hydrated.

Chris waited til he was emaciated and dehydrated to accept it and he never tolerated the feeds well. I was able to keep him hydrated and I could give him meds, so just for that it did help him a lot. It did keep him alive longer, he was heading to starve and was dehydrated. I could have still given him a peaceful ending then if he had chosen no peg. I just wish he had chosen it many months earlier so that it would have given him more QOL. To me, waiting that long for the peg, and not tolerating (and very often simply refusing) feeds well, meant that it only dragged him out a little longer. Even with the peg he would only allow me to give him about 1/2 - 3/4 the minimum calories he needed per day.

The risk of bed sores is so much higher if they are dehydrated and malnourished. So this is an important QOL issue. Darcey does not have a lot of movement, so it is a consideration.

I hope that you both can work out a plan that feels 'right' to you both, at least I hope Darcey can feel at peace with her decisions and that they aren't too hard for you to support.

 

[JimInVA]

Thank you for taking time to respond and offer your comments. I can't begin to express how invaluable your insight is. Next week we will be interviewing for a new local neurologist. As such, I plan to discuss the feeding tube and venting issue with my PALS tomorrow. Again, my sincere appreciation for the effort of your care and concern...

Jim

 

[gooseberry]

Hi Jim, I tried to have this conversation with my pals. He didnt want to have the conversation but he listened to the information that I had gathered. Previously he had decided he didnt want either. The nurse advocate from our insurance company that we work with also spoke with him. She followed up with some reading material. In a week or so, he will be signing his advance directive,living will,health care proxy paperwork. I thought he shoul dhave all the information available before he signed it so he made an informed decision because his family isnt going to like his wishes of no intervention. The peg and venting is just the beginning of the difficult discussion.