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Dave K

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It troubles me to read about PALS who fear suffocation and choking when those fears are not warranted. When doctors say “respiratory failure,” they need to do a better job explaining that this does not mean "suffocating" or “choking.” Virtually all researchers have found that the vast majority of PALS pass peacefully. According to researchers, death in the majority of cases is peaceful, following lengthening periods of sleepiness, gradually resulting in a coma. While there is no guarantee every PALS will have a peaceful death, it has been found that the proportion of peaceful deaths among ALS patients compares favorably with non-ALS populations. “Thus,” researchers have reported, “the chances of ALS patients for a peaceful death appear to be above, rather than below, average.” Researchers and clinicians recommend that to relieve unwarranted fears and increase the quality of life of ALS patients and their relatives, they should be informed proactively that death from choking is exceptional and that death in the majority of cases is peaceful. Here is what the researchers have written on the topic:

Neudert C., et al., The course of the terminal phase in patients with amyotrophic lateral sclerosis. J Neurol. 2001; 248:612-616 (defining "a good or peaceful death as the type of death one would choose if there were a choice. . . . The most important result, confirming clinical experience, is that the vast majority of ALS patients (G 88%, UK 98%; p=0.11) died peacefully and no patient 'choked to death' ") (https://www.researchgate.net/profil..._sclerosis/links/0fcfd50fd09fd4bee7000000.pdf)

The ALS Association ("Data on over 100 people with ALS who were enrolled in the ALS C.A.R.E. project suggest that most people die peacefully with this disease.”)

A Peaceful Passing | MDA/ALS Newsmagazine.

“A professional’s guide to end of life care in motor neurone disease (MND)” (http://www.mndassociation.org/wp-co...to-end-of-life-care-in-MND-v1.0-Jan16-web.pdf)
 

scaredwifetx

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Thank you for posting these articles Dave. I read them tonight and will share this info with Steve when he is ready to hear them. His biggest fear is the breathing and choking. Reading them may help him to understand.
 

edschia

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Thank you so much Dave..Since my diagnosis in January of this year and reading (probably my downfall :) I have had the fear of choking and/or suffocating. Your post and articles attached helped me tremendously this evening. Thanks again!
 

affected

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Thank you Dave. I got an error on the last link, but the others worked and I think it's a discussion that is very important.

PALS often feel like they are choking, and swallowing issues are known to happen when bulbar symptoms start. However, even though there is the feeling of choking, it's not actually an obstruction. An obstruction is when something lodges in the throat and cuts off the airways.

For PALS it is usually residual food or fluids that are not clearing the pocket in the throat and causes coughing to start to try to clear it. It feels like 'choking' but as the articles state, PALS do not choke to death. I have only known this to happen once, and the PALS had severe FTD, could not swallow, and found an apple which he attempted to eat, and yes a lump of apple with skin did lodge in his throat.

PALS are normally eating a softer diet as their swallow and ability to cough decline, and again it's not normally a matter of an obstruction, but rather not completely clearing the pocket in the throat.

Sadly, what does happen too often when these incidences occur is that some of that food particle or fluid is sucked into the lungs and results in an aspiration pneumonia.

But the fear of suddenly choking to death in a panic is something most PALS experience, often when bulbar symptoms start. As they learn to manage it, and to stay calm when they do have an episode of needing to clear their throat they find that it is not the same as choking.

I remember that often my Chris would turn to me and say - you will just walk in one day and find me dead on the floor because I choked.

He was bulbar onset, and even with the peg he insisted on taking in some puree until he developed an aspiration pneumonia in the last month of his life.

He had a very peaceful passing. I managed his palliative care very well and those last few days were the first time in the whole disease that he was pain and fear free.

The only other awful deaths I have known have been when palliative measures were not being taken and attempts were made to resuscitate or suction out a PALS by CALS who were in panic.

I would urge all PALS and CALS to have discussions on this side of things early, and have a clear plan in mind such as when/if to call an ambulance and when to use palliative medications to help with swallowing issues. What I mean is, that a PALS having problems with throat clearing and breathing are best being kept calm. I must say I was impressed with how Chris learned to stay calm during episodes of throat clearing issues and it made all the difference.

Because it is not actually obstructive choking, the more calm a PALS can be, the more easily that bit of residue will actually be swallowed.

Symptom management is so important - controlling secretions and using cough assist and bipap to help with breathing really will give a higher quality of life regardless of whether they give more quantity of life.
 

hn7609

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thanks for that. My biggest fear now is suffocation or choking,. I hope that you are right
 

azwxman

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im likewise afraid of choking to death, although these articles have somewhat allayed those fears. But during my morning cough-fest, when I'm trying to clear the phlegm and bubbly saliva from my lungs, the fear returns full force. Will i suck one of those wads of snot down when my lungs are nearly empty from coughing? Allthe studies and articles don't really address that fear.
 

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I know I was only a CALS so I can't fully comprehend what it is like to suffer these episodes, even if I watched many of them. Therefore it is easier for me to say you won't suffocate or choke to death on the spot, than it is for you to really believe it when something is happening.

If you suck a wad of snot into your lungs you will feel like coughing. If you can't cough it up your body will reabsorb it. If it was 'pure snot' it is unlikely anything untoward will happen as it is just part of your body secretions.

Problems tend to arise when it is food particles that are inhaled as they are a foreign body with bacterial content. Snot and saliva that are 'clean' have no new bacteria to add to your lungs.

I hope that helps a tiny bit more.
 

Dave K

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There's a difference between "choking" in the non-medical, non-life-threatening sense of meaning "there's something in my airway that is making me cough" and "choking" in the medical sense, which is when no air can pass in or out of the lungs. Medical choking typically occurs with a solid object like a grape or unchewed piece of meat or small toy. I don't think it's possible to choke on phlegm in the medical sense. That is, it feels awful to have it in your throat, but it won't kill you. If this is what is happening, then the patient should speak to the medical team about possible comfort measures. A cough assist machine may help. In my wife's case, although she doesn't need a ventilator to breathe, she got a tracheostomy as a comfort measure so her airway can be suctioned and kept clear.
 

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Thank you all for your words of wisdom, experiences and suggestions on this topic. It has been my biggest fear also due to bulbar onset. I drove myself to ER in April because I thought I had choked on a cookie. Of course, I was seen and released as that is not what happened, beside the fact that I was breathing as I drove myself there. 5-6 months later I have learned (for the most part), to remain calm, and know that if I'm breathing, I'm most likely not choking. But Dave you are 100% right, the providers need to explain this to PALS instead of just sending them home after a DX with no real education on "what to expect". I actually was afraid to take a shower for months, (I bought a shower bench), I thought my legs were going to just go out on me in one fell swoop, which would lead me to fall crack my head and die. When you are not educated your mind can go to the scariest places!
Thanks everyone. :)
 

Atsugi

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Firefly, you can avoid choking by feeding with a tube. Or just don't eat or drink. We kept my wife's mouth wet.

Also, don't fall. Without the muscles needed to adjust yourself on the way down, a PALS has no defense during falling. You might break a hip or your face or your head. Not good. I recommend using a wheelchair early on, so you don't fall.

Not to add to your list of things to fear, but all PALS and CALS should understand "air hunger."

At the end of life, since a PALS breathing is exceedingly weak, they don't exhale strongly enough. So carbon Dioxide builds up in the blood. Even if you have lots of oxygen, the brain interprets CO2 as "out of air" just like suffocating. The patient panics.

To avoid this, we give morphine. A little bit of morphine will relax the lungs and make it easier to breathe. More morphine eliminates fear. The result is that if the patient is dying from lack of air, he doesn't care. They die happy.

My wife was a medical doctor, so she understood dying fairly well. Very early on, she told us her wishes for her end of life and put it in writing. She wanted no hospital, no tubes, no intubation, no nothing. She wanted morphine, not air. In the end, she stuck to that, and so did I.

She just wanted to die peacefully at home, surrounded by family. And that's exactly what she got. She passed away quite calmly surrounded by all her sisters and brother, while I held her hand.

When It's my turn to go, I hope I'm so lucky.
 

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Dave, I'll go a step further and disagree outright that there is "no guarantee of a peaceful death." An informed, hands-on caregiver is that guarantee. We have no evidence that unobserved deaths (not that frequent) are any less peaceful. To clarify, what I mean by "peaceful" is the lack of prolonged suffering.
 

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Dave was talking about not choking to death, rather than prolonged suffering, which to me would mean something quite different.
 

lgelb

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The links he quoted were to both, I think, and they are of course related.
 
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