Thoughts on declining feeding tube?

[annlee]

In a recent discussion with my neuro, we discussed plans for trach and feeding tube. I advised my doctor that I did not want a trach, and was undecided on a feeding tube. I will use NIV to support breathing as long as it is feasible. The doctor said that declining a feeding tube was "a very rough way to go", and he advised against that choice. This is the opposite of what I've been told by a friend (MD) who has worked with hospice. I do not wish to extend my time once I need full care. Does anyone have experience with someone declining a feeding tube?

 

[Nikki J]

I do. My mother wanted nothing. She had a very slow course but years of worsening swallow. I had to do Heimlich once but many many episodes of choking. Also excruciatingly slow feeding that exhausted her and us.

My sister theoretically wanted a tube but refused it for a long time also needed Heimlich, had multiple choking episodes, exhausting feedings and by the time she consented and had the tube weighed 70 pounds. It was almost too late. She had terrible refeeding syndrome.

As you can tell I have severe ptsd from watching both of them. I have sworn to get a tube when first suggested to me. I will probably do NIV. I will not trach.

A feeding tube is of course a personal choice but if you have swallow issues they won’t take you instantly and it can be painful for all concerned. It was for my family

 

[annlee]

Thank you for that info. I guess you can go a long time with difficulty eating" which is very different from "not being able to swallow at all". Maybe that is what my neuro was referring to. Once I need major care, I'm going to need to "exit" as soon as possible. I will not have the funds to stay in the game for a year or two. I was going to sell my house and use that to pay for nursing facility. Turns out it is almost impossible to find one that takes PALS, and none take a trach, or NIV. So, I need to stay in my house and hire someone to come in.

.

 

[SaraJean]

My husband has declined a feeding tube. He does not want to artificially extend his condition. We are both comfortable with this decision. Our specialist was supportive and did not try to talk us into a feeding tube.

 

[drewidia]

Annlee so up till last week I was 100% against both the Trach (which I basically still am) and PEG. I'm 100% for NIV all the way.

I flipped on the G-Tube (PEG) last week to 100% to get one but not use it.

I have spoken to a number of other PALS in recent weeks and they turned me towards getting a PEG and just doing it... you can have the PEG for Bolus feedings and not a replacement for main eating (while you can)...

With my weight loss the doctor is most concerned about hydration than just the liquid nutrition - which in turn corresponds to my breathing issues (thick mucus etc)...

For me the G-Tube may be too late and I am pissed at myself because I waited to long - the PEJ (J Tube) may be the only option and that would be night feedings...etc - I really don't want it, but I am doing it mostly because it will be easier on my family is my conclusion.

While the decision is personal, I will be the first to say I regret not doing it sooner to at least HAVE the option...

SaraJean - I fully respect that decision - no one "forced" me to push for this, but the fact that the option is basically going to be off the table was the motivation to just get it done...it doesn't have to be used, but my FVC is low already.

 

[lgelb]

Keep in mind that you can still eat by mouth with a tube so long as you're physically able, and that you control what goes into it (which could be the same food you used to eat, mostly, in cooked/blended form) even when you start using it. So depending on swallowing abilities, it might be seen more as a failsafe than a prime directive.

As for the tube's going off the table due to low FVC, when an experienced interventional radiologist places the tube ("RIG" rather than "PEG" though the latter is sometimes used generically) while you are on your BiPAP, the FVC window is larger than some people think and can be considerably below 50% (averaging 17% in one study). I am not saying you should wait for waiting's sake, but you needn't feel rushed, either.

 

[drewidia]

Agreed..it's a backup solution and will continue to eat for the time being.

I find out more later today if the pulmonologist will clear me for having general - otherwise I'm going to look into another hospital group (via the ALS group) who knows this stuff better.

Why general? My issue is likely unique (relatively speaking) - having a second stomach (a converted sleeve to a full gastric bypass). They need to g-tube the remnant stomach and will likely only do it under general. I won't do a J tube - which they are willing under "air sedation" to do but I REALLY don't want a J as feeding is completely different.

So the "race" seems to be against time for that and the concern that when I wake up from general after being on vent, then the already weakened muscles don't "kick back in"... it's a risk and they want me to consent to a trach prior to surgery as a backup option.

 

[annlee]

What is the difference in the different type of feeding tubes?

 

[nkrohan]

My thoughts as a CALS 8 years into this disease with a PALS who has slow progression and is declining a feeding tube/trach: I support his decision. Both because a feeding would/could extend his life significantly (since his breathing is still fairly decent at 40% FVC) and because it is extending his life and I don't have years left in me to take care of him (note the financial, emotional and physical burden is extreme). I work full time and have kids to raise and the system does not support people like us. Our plan is start hospice once he has significant struggles with his swallow. It currently takes him an hour or so to eat each meal. Had we had to make this decision at the 3 or 5 year mark we probably would have made a different decision? I don't think there is a wrong or right choice but the doctors do push really hard on this one.

 

[annlee]

It seems a big factor in deciding this also comes down to the support system a person has, as well as finances. I just do not have people to assist me regularly with care, especially not on a full time basis. I drew social security early due to having to stop working. At that time, my social security payment was low enough that I could have qualified for Medicaid, but I did not apply because I was managing. Now that I'm on disability, I make a few hundred dollars a month too much to qualify for Medicaid or any assistance. I have used most of my savings. This puts me in a major bind. I just need to go quickly once i cannot take care of myself, but would prefer not to create a longer time of suffering or a more difficult death. No easy answer. Your responses has given me a lot to consider. I think there is no right, wrong, or good answer. It's hard to imagine that a person can pay health insurance premiums their entire life, and end up in this situation. Thank you for your input. It is helpful.

 

[Absolutely 11]

@annlee
Living in the UK I have bemoaned the slow process of obtaining a diagnosis BUT having arrived at an " unwelcome" conclusion, I have been transferred to a specialist team based at a nearby hospice. There is support from MNDA and although disability comes with costs I cannot conceive of the position you find yourself in. Are their church/charitable groups that can help you? Grants to help fund care? Please, explore all options and reach out to members here who are more knowledgeable than I am. You are loved and valued xxx

 

[warnsboy]

My Neurologist recomended getting the PEG tube right away even though my swallowing is only starting to concern me. I was officially diagnosed a month ago. She scheduled the proceedure in September. I was thinking about delaying it for two or three months. Thanks for the post. I believe I will keep the scheduled proceedure.

 

[annlee]

Thanks for your message. I also had a long journey to diagnosis. I have been fortunate to have almost 5 good years. I have been wheelchair dependent for 2 years. There is no simple solution for this complicated situation. I will keep moving forward for as long as possible. I just need to know what my options are for dealing with things as they get to the point of needing full care.

 

[Landis02]

Annlee, have you considered hospice? At least in NC, with an ALS diagnosis, you can go on hospice even though you might have more than 6 months to live. Our hospice provides lots of in home care, though no full-time care in home.