PALS opposed to feeding tube

[Marieb425]

Hello, I haven’t posted in a while but my husband was diagnosed august of 2022 with limb-onset ALS. Even though he was diagnosed as limb-onset, it quickly moved into the bulbar region. His left arm/hand (where we thought it started) is now pretty much paralyzed but the main things that have been going on are bulbar.

At this point his speech is pretty much unintelligible and he eats a modified diet due to significant tongue weakness and dysphagia. He also occasionally chokes (usually when he’s swallowing liquids). The feeding tube has been recommended to him multiple times, but he’s opposed to the idea. He’s young (40) and he says he doesn’t want to draw this out. I don’t try and push him because I’m not the one going through this, but I’m just wondering if anyone had a similar scenario where their PALS didn’t want a feeding tube and how things went.

He’s been on all of the medications (Riluzole, Radicava and relyvrio) since around thanksgiving of 2022. His respiratory values are still good but my main concern is the bulbar progression.

 

[Nikki J]

My mother didn’t want a feeding tube. She was much older and she had ftd/ als but had expressed her wishes earlier. In her case it was very difficult. Feeding took forever, was exhausting for the feeder and her and was punctuated by choking. She lost weight of course. In our case the phase lasted a couple of years but she was slow progression. I also don’t know how her breathing was as she could not have done the testing I don’t think her case was typical

My sister delayed until it was almost too late. She was unable to swallow at all less than a month after her tube.

Her aunt had a tube that fell out and she refused replacement- inpatient hospice and morphine followed

I don’t think that really answered your questions. With good breathing your issues are going to be malnutrition and aspiration. Grim as it is I would also clarify that when he can’t swallow he really wants comfort measures and a quick exit. If you wait too long on a tube refeeding can become impossible. That almost happened to my sister. It did happen to another pals - also youngish- and he died

 

[Marieb425]

Thank you Nikki for your reply and additional information. I forgot to mention it also takes him over an hour to eat (modified items) and I suspect that it’s exhausting for him but he won’t admit it. I think he wants comfort measures and a quick exit as you described it. I get anxious with the unknowns and I feel worried about what might happen/what it might look like. (Although I know it can be different for every PALS).

 

[Nikki J]

Have you considered palliative care? If he wants to continue the three rs probably hospice isn’t a choice. Why is he taking them? They are supposed to slow progression. If he feels like he still has good qol and wants to prolong it fine though a feeding tube would do more and would be cheaper. If he wants this over taking them seems counterintuitive

 

[Marieb425]

Is he at the point when he would need palliative care? He hasn’t had much spread through his limbs, but I’ve questioned how much the three r’s are “helping” with the bulbar progression. Or maybe they are and it would be worse? His respiratory values are still very good - like better than a normal person’s values. He hasn’t had any decline in the respiratory value testing (since they started in September or October 2022).

He is terrified of losing mobility and I think he would rather have a decline due to not being able to swallow/eat and refusing the feeding tube.

 

[Nikki J]

Palliative care isn’t like hospice. The point is to get support and increase comfort. Certainly he doesn’t have to. I just thought it might help both of you. I had a palliative care consult because mgh was starting a program on the theory that early palliative care would improve qol as it does in oncology. The doctor was a neurologist and palliative care specialist. We really just talked. She seemed ready to help problem solve and also would have prescribed meds for symptoms. I didn’t need either and we left it call if you need me.

I get wanting to maintain mobility. Of course if he loses weight he loses muscle. And it is really really hard to tell if the rs help isn’t it ? Has nuedexta ever been discussed? There is evidence it can help bulbar for a while. Or maybe that isn’t what he wants.

 

[KimT]

I had a PALS friend from my support groups who, from the very beginning, refused a feeding tube. When she passed away, she was still able to walk and use one of her hands. I visited her the week she died. She lived alone, so paid caregivers were her only option.

If I had family, I would get the feeding tube if only for their peace of mind. I wouldn't want anyone to watch me choke, aspirate, and die from pneumonia. You can end it when you want to end it and it's a lot easier to end it with a feeding tube. Even with a feeding tube, you can refuse nourishment but that's not how I would choose to go.

In the end, it's the PALS decision. As long as he's informed of the pros and cons, the best you can do is support him.

I'm so sorry you're having to go through all of this.

 

[rmt]

My husband was bulbar over with almost no limb involvement for over 3 years. He was adamant he didn't want a feeding tube and watching him constantly choke was unbelievably awful. He spent most of his time trying to eat and drink. It seemed like such a waste of the precious time he had left. And the constant choking and coughing was exhausting for both of us.

He finally decided to get the tube when he was starving and severely dehydrated. The tube vastly improved both our lives and made his eventual passing much more peaceful.

I think I have PTSD from all of his choking. If your PALs chooses to not get a feeding tube, I hope you can find a way to emotionally handle the choking episodes better than I did.

 

[lgelb]

I agree, Marie, that Nuedexta is worth a look, with bulbar issues.

As to "I wouldn't want anyone to watch me choke..." etc. , I see no call to guilt any PALS over what they don't want. And as Nikki has noted, albeit with consequences for P/CALS alike, aspiration is not the only outcome of refusing a feeding tube.

As Nikki notes, her mom's last couple of years were very difficult and we cannot generalize the results of this choice.

However, in Larry's case, because of his Marfan and surgical history, the procedure ran the risk of arterial rupture, non-healing stoma, etc. He had enough problems that we opted against creating more.

Staying on BiPAP with a nasal mask, he ate a modified diet, generally without choking, including the day he decided to die, for 21 months past the initial tube recommendation. He was never on riluzole and predated the other Rs.

At first glance, staying on the three Rs might not seem to line up with refusing a tube, or any of the other combination choices that people here will make. But as long as PALS understand the consequences, CALS can likewise understand that the adaptations to a pretty insane disease may themselves seem self-contradictory. As another example, some PALS agree to a tube but refuse BiPAP.

If you walk past the reimbursement implications and jargon, "palliative care" is an umbrella term for the option of not pursuing all possible treatments. As such, it applies to the whole of the ALS course.

So if the act of eating a modified diet is more attractive than a tube, that is arguably one form of palliation. In a terminal disease, choices sometimes come down to "pay the piper now or later" vs. "no regrets."

Of course, Marie, I would make sure you are clear on his wishes and they are documented, if he does develop aspiration pneumonia and other scenarios. But that applies to all PALS.

 

[rmt]

While I agree it is the PALS choice to get a feeding tube, it isn't realistic to think that the decision only affects the PALS. And I don't want to sugar coat how horrible it was to watch my husband choke and cough for hours and hours every day.

Yes, it is the PALS choice, but the CALS also has to live through the ramifications of that choice. So make sure you have a plan to emotionally deal with the choking episodes if he does decide not to get a feeding tube. Personally, it broke me.

 

[Nikki J]

I agree with Robin. I have posted before that I too feel I have PTSD from the experiences with my mother and sister. Not everyone without a feeding tube has such a traumatic time but it isn’t uncommon either. I hope Marie and her husband are spared that somehow

 

[Marieb425]

Thank you all for your replies; I’ll reply more later. Lgelb, I also might message you - I think you’re in WA state too. I understand what rmt and Nikki are saying because I’ve already felt traumatized and helpless from when he has choked (and it’s happened in front of our young children too).

 

[KimT]

Laurie,
Since you quoted me, I feel it necessary to reply. I was speaking for myself. I am a PALS. I was saying the phrase you quoted as ME. I certainly am not trying to guilt anyone into doing anything. I have experience with other PALS beyond what I typed. In all my years here, I've done nothing but support people, both CALS and PALS. If someone asks for experiences or opinions, I try my best to be realistic, helpful, and honest.

 

[Marieb425]

Kim, I appreciate your opinion too. I know what you were saying and I know this is different for all PALS (and CALS). It’s helpful to have a wide range of thoughts and experiences. I know my PALS has felt like he’s losing many things that he used to be able to do and it’s important that he still can make choices and have autonomy. I empathize with how he feels and then I also have my own feelings too and it’s just all ugh. Sometimes I wish I had a magic wand and it could all be “fixed” but I know that’s not realistic and this is what it is, for us.

 

[MupstateNY]

have you asked him questions like, what are your preferences regarding when and how you die?

i have started palliative care, and so far it has been about the nurse practitioner and me getting to know each other. in my next appt., she is going to help me fill out the state form where i spell out my wishes. based on what i want.

i think it could be helpful for you two to start talking about his preferences, which may change over time. and you can give him i messages in which you explain how you feel, too.

pall. care can help the two of you have those tough conversations with each other. or you could start that process with clergy or a clinical social worker.

you will probably want to show him that you are listening without judging.

note that a feeding tube stoma will close up quite quickly if he has it placed but decides he does not like it and asks that it be removed. or so the dr told me.

i like my tube because taking meds by mouth was very stressful for me. but it is a personal decision.