PALS opposed to feeding tube

[ReginaS]

My PALS chose "no feeding tube". He was diagnosed w/ limb onset but honestly, bulbar either developed parallel or right after. He progressed fast. 16 months after diagnosis he died. He did was very slender.

Nurses, physicians, nutritionists and then palliative care advised/urged him to get a feeding tube. There were times, when he was unsure, especially after the graphic description and very strong urging of the palliative care physician. They told him that if it was their husband they would make him take a feeding tube. But then T. decided against it again. In hindsight I think they urge it so strongly bc it is unimaginable how hard it can get without one - if it gets really hard. (Though it does not have to - for example if the PALS is lucky enough that the CO2 accumulates first - that's what we were hoping for but it did not happen.)

The way T died I definitely do not wish for me or anybody else. We had some special circumstances in the household. There were some family dynamics going on. Ts sons disregarded and fought the instructions by the hospice team. T was on the lowest dose of morphine and the sons were totally against giving him relief by administering ativan. The argument was it would make him seem calm but only seem calm on the outside, i.e. for caretakers - not really calm for him. I have never been in that situation and tend to trust hospice - but who knows... I could understand that they wanted more time w. their father but...... I just made sure that everyone knew it does not have to be this way but I also did not want to turn the tensions into a war zone. It was sad.

It was rather grueling to see this man suffer so much.

I wanted to support what T wanted in terms of his decision to live his last months without a feeding tube - however, when I read or heard that people might become unable to eat or drink I was not able to imagine the suffering that this state can cause when one has to go through it fully conscious. I am pretty sure that T could not anticipate that hunger and thirst either. The reality surpassed my imagination by much. Tomorrow it will be 4 years that he died from ALS and I am still shocked by all the (unnecessary) suffering in the end and am very relieved that it's over.

In the end, T had hardly eaten anything for weeks - a bit later nothing at all, and before that more foods would fall away bc he could not get it down or would choke or they caused too much mucus. He could barely open his mouth and then no longer. Teeth brushing and other things became hard to impossible. Before the swallowing was completely gone he needed medication and could not take it bc it was too rough on his throat - not even the children's liquid versions - w. tube it would have been no problem. He lasted much longer than the hospice team expected. He was so thirsty and before that he was very, very hungry. We gave him ice chips for thirst. In the mornings he would greet me and was disappointed that he was still alive. Just thinking about it...

In the very late stage the sons had the idea to bank some of his blood so that any kind of gene testing could be done later and not affect their current health records - also to have the option that in the future, when ALS research is more advanced they can have the genes tested, possibly for some that are unknown today in their relationship with ALS. Hospice tried several times and they could not draw any blood. He was really, really dried out. Once he was dead someone drew the blood sample that the sons desired directly from the heart.

The feeding tube alone does not prolong life. But it can provide a choice in a situation that can be really hard otherwise. And again, I would still support what PALS wants.

 

[lgelb]

Yes, Kim, I understood you were posting as a PALS. I mean, that's what you are. But that does not mean your words are immune from being misinterpreted as a moral imperative.

I do agree with the implication of several posts in this thread, that if someone opts out of a tube, it would be far easier to do so if both the PALS and CALS are prepared to give nature a push. That was certainly our assumption and how it played out.

There is much in the ALSA-type communiques that get the largest share of voice in the US, that I think imposes very unrealistic expectations on both PALS and CALS, including the fight/war motifs. So you will hopefully forgive me for wanting to occasionally point out that trauma or potential trauma cuts both ways, and that food has more emotional resonance for some than others. For example, my husband often did not have enough nutritious food as a child and I am sure that played into his interest in eating even when it was not as easy.

Yes, Marie, I'm in Seattle. And, for anyone, always happy to share tubeless diet tips -- there are many here -- and adjustments to BiPAP, etc. should choking occur.

 

[Greeneyes]

My brother was diagnosed in Oct 2022. He was still eating but having some difficulty swallowing. His Dr suggested a feeding tube while he still could use his hands and was eating some. I thought it was a little soon but he had a feeding tube placed in Dec2022. He still enjoyed eating some but this gave him extra calories and gave him more energy and hydration. I know it can sound scary to have a tube but he is able to manage his tube feeding on his own. It only takes a few minutes for each feeding. It can be exhausting for ALS patients to eat. Tube feedings conserve energy.

 

[cb81042]

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.

This is my husband as well. He has bulbar onset and is very adamantly against a feeding tube. It is difficult to watch him struggle with eating and taking meds. He also has some cognitive issues, so he really cannot understand how a feeding tube could improve quality of life -- he just sees it as something that would stick out of him and keep him alive longer. He says he is okay with a temporary feeding tube through his nose but doesn't seem to be able to understand that for him, the NG is a precursor to a PEG.

The limb weakness bothers him far more than the fact that his speech is pretty much unintelligible and that the can't get through a meal without sputtering and choking. It is difficult to respect his wishes knowing that the feeding tube would make eating and taking meds so much easier, plus decrease the amount of stress I feel as a bystander. I also know that this is a slippery slope -- if he becomes dependent on a tube and others to feed him, it becomes so much more complicated and difficult for him to refuse nutrition down the road. And quite frankly, VSED seems like a pretty terrible way to go without an easy way to administer comfort meds.

 

[lgelb]

It is his choice, CB, but you should know that you can stop putting food and water in a tube at any time, and you can also put liquid morphine and benzodiazepines in a tube at any time. A gastrostomy is also much more comfortable than an NG tube and with some show/tell, even with cognitive issues, you could probably get that across.

There is truly no need to consider VSED if/as morphine is available, whether he has any tube or not.

 

[MupstateNY]

if i imagine myself in that situation, i think i would explain that i am suffering too much, watching and imagining, and ask him to try it for a week, and then if he does not like it, we could get it taken out and the hole would close up quickly. i see pals and cals as a team.

emdr might be helpful in processing this non peaceful death. i am sorry you guys went through this.

 

[lgelb]

The stoma will not necessarily close up neatly, even after only a week. Malnutrition and compromised microcirculation with lack of mobility are both risks for non-healing wounds even skin-deep, let alone a hole in your stomach.

And some PALS die soon after the procedure, for several reasons. It is not like trying BiPAP or an AFO.

 

[Marieb425]

I’m posting a brief follow up. I sometimes post and then get a bit overwhelmed. I don’t push anything on my PALS, because I’m not the one who this is happening to and a disease isn’t ravaging my body. And he used to be very active (swimming laps, jogging, daily biking to work) so losing the ability to do various things has been devastating for him. He also expresses that he is terrified of the surgery because he’s never had a broken bone or stitches. For all these reasons (and others) I let him make his own choices and I try my best to research what I can do to support and help him.

He ended up briefly stopping all medications because he was like what is the point of this? Then he started having daily laryngospasm episodes and he decided to take the medications again; fortunately he hasn’t had another episode because it was quite scary.

 

[MJT]

I have no opinion on anyone's posts. I only want CALS and PALS to know our story so they will have information to help them make decisions.

My husband had limb-onset ALS and passed away last week, 18 months after diagnosis. He opted not to get a feeding tube. He didn't choke much but wasn't hungry and had digestive problems toward the end. I would think digestive problems happen with or without a tube. He was on palliative care in the form of an ALS Clinic. Finally, secondary pain caused him to begin home Hospice. He felt terrible for the last (4? it's a blur) weeks and decided it was time. Our Hospice NP is experienced in VSED and works with many ALS patients. There are three options for a Trilogy (or Bi-Pap) dependent PALS; VSED, VSED+Trilogy removal, or Trilogy removal only. My PALS was dependent on the Trilogy only when lying flat.

The NP explained that ALS patients are frequently kept alive via treatments, so removing an artificial breathing apparatus is not suicide. My husband chose to VSED (refused food and water) for two days before turning off the Trilogy, hoping the process would go faster. We chose the date based on the availability of the NP and apart from any birthdays, holidays, etc. The first day of VSED went well. He wasn't hungry and hadn't been eating much prior to VSED anyway. He had sugar-free candy, I swabbed his mouth with water frequently, and he had a gel that kept his mouth moisturized. He had Ativan in case he was anxious and was already on Morphine Contin (he chose to continue taking a small amount of water to swallow pills) and liquid Morphine. (I can't remember if they upped the dose?) We had many other meds on hand, but it's a blur. The second day was more challenging because he was nauseous. There were three meds for that, and one worked well. On the third day, the NP came with the nurse and started the Macy cath to administer meds when he was unconscious and assessed his level of consciousness. He wasn't sedated enough for her to remove the Trilogy. I was to "stack" his meds throughout the night. The following morning family surrounded him as the NP turned the machine off. He died at ten that night. I'd say it was peaceful, but I am suspicious of that term because who knows if it was peaceful for him? It was peaceful for those around him. He didn't grimace or moan. There was evidence he could hear us, but I don't want to share that detail.

Our neurologist at Duke supports VSED and said his mother had done it. Again, not to sway anyone, only to share information.

I feel like I have PTSD, but more from the entire experience, not from his death. The family agreed with his decision, except for one relative. Luckily, that person wasn't very involved. I can't imagine the added pain of someone refusing to administer Ativan.

I hope that all PALS and CALS experience a quick, meaningful, and peaceful ending of their choosing. Sending love.

 

[MJT]

cb81042- comfort meds can be administered via Macy cath when the patient can't swallow and are absorbed more quickly.

 

[Marieb425]

Thank you MJT for your post and for the info in your reply above. I was wondering about that same question too.

 

[Gizzmo]

I am gald you asked that question I have been thinking about this for a while . My husband has ALS for about a year and half but not sure what kind. He has pretty much lost the use of his arms. His hands and wrist work but cant bend the elbow up raise his arms . He wants no talk about it and refuses the feeding tube or breathing help. This is so hard to think about what will be coming for him and me . There is no chocking yet but he eats very slow and rest between bites . Such a scary and frightening time this is . Prayers of you , your husband and family

 

[lgelb]

Opioids and benzos come in a variety of dosing forms, not just pills or liquid by the spoon, such as sprays, patches, buccal film, drops, suppositories, topical gel, injections.

So while someone might choose a cath, which in turn would require a hospice nurse, all the other forms can be administered by a caregiver even if someone cannot swallow and does not have a tube. And nothing has to be spaced over days once a PALS has decided it is time.

So I have to disagree with the three options presented by MJT's clinic for someone with a BiPAP, because there is a fourth, which I and many others have done: drugs titrated to comfort, then BiPAP removal. Even going slow and steady as a journey rather than a transaction, this is a few hours, not days.

Nothing that both the P/CALS want is wrong. Just presenting alternatives.

 

[Tomswife]

Thread 'Peg is a Good Thing' Peg is a Good Thing

The Peg enables the CALS to administer meds to provide comfort to PALS. My PALS Tom could not swallow fluids.

 

[KimT]

I agree with Laurie.

I've been with PALS in my support group during the final weeks/days. One had patches that could be increased when needed. He also had sublingual drops for under the tongue. He did not need to swallow and the sublingual drops were very tiny amounts with high potency.
I also spoke to a friend from church who is a hospice nurse. She said the exact same thing. She was there with two PALS when they passed peacefully using benzo/opioid combination.
There are many alternatives.