Vent Question

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Margesmn

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Joined
Mar 23, 2016
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66
Reason
PALS
Diagnosis
11/2015
Country
US
State
MN
City
Minneapolis
I will be working on my healthcare directive soon and I have some questions regarding being placed on a ventilator and would appreciate input. I understand that each situation is different and I imagine it is a very personal choice. I am looking to understand things like how do they determine you need one? how much additional time could it afford me?, and what is the difference in how you would die?

Thank you in advance for your input. I am grateful to have a safe place to ask such questions.
 
Oh difficult question. Good to think about it ahead of time. The vent would become an issue when your breathing deteriorates to a certain point that even with non invasive ventilation it is a problem. However sometimes a sudden emergency occurs so it is vital to have these conversations quite early. Respiratory failure and malnutrition are common causes of death for PALS. With a feeding tube and a vent these should not happen so theoretically a vent could extend your life indefinitely

You can find different experiences on this board. Diane H has lived with a vent for years. Read her posts and visit her website. Others have had a vent and died fairly soon- infection or other issues. The vent does not seem to prolong life very much for some

Once on a vent you will need someone trained within close call ( any competent willing person can be trained) 24/7. The vent does not stop the progression of ALS. You must consider that you may be completely paralyzed - some even lose eye movement. When it is too much you can be given medication and the vent turned down and off.

Discuss very thoroughly with your loved ones and revisit the decision. Wishes can change as the disease progresses
 
Nikki has done a good job at answering your questions. I just want to add some info on the dying question. If you refuse BiPAP, you will struggle to breathe until your CO2 levels are high enough to cause unconsciousness and then death. Medications to relieve anxiety and to reduce the feeling of "air hunger" can be given. The process is basically the same when BiPAP is no longer enough, by increasing the medication so that the person is comfortable without the BiPAP, the time frame is short. On a ventilator, the patient (or the Medical Power of Attorney) will make the decision to turn off the vent. Again, medication for comfort will be given in a dosage large enough to cause unconsciousness. The vent will then be turned off. The main difference between the three options is the length of time before death occurs, and that is dependent on the person's ability to breathe on their own. With no use of BiPAP the process will be the slowest but there is no way to predict how many hours, days, weeks or months it will take. The same is true with BiPAP but generally will be faster because the person already has a low breathing capacity. With a vent the process is fast, taking only minutes after the vent is removed. The exception would be a person fairly recently put on a vent who is still able to sustain breathing to some extent. Of course, pneumonia or other illness will shorten the time frame in any situation. All that is how it is supposed to work but there are definitely people who just don't fit the profiles all neatly and predictably!
 
I am not a PALS, and I am not really educated on ventilation. But this is my experience. If it offends, let me know and I'll delete it. (I've updated this post to incorporate feedback.)

Keep in mind that my wife's experience was highly unusual. Her ALS progressed quite rapidly, from first symptom to death in about 10 months. Fortunately, as a doctor working for the VA, she had instant access to the best care and I was able to care for her without working for a living.

When my wife became totally locked in, she couldn't move any muscles at all. She couldn't blink her eyes, and couldn't move her eyeballs. There was no communication. But I knew she was in there, perfectly intelligent and feeling emotions. I kept her eyes lubricated with drops so they wouldn't dry out painfully. She died within 24 hours of being totally locked in.

Now, four years later, when I lie in bed at night feeling sad that she had to die, I also realize why she refused all tubes and insisted on morphine instead of oxygen. She didn't want to live locked in.

If I were a PALS, I would want someone brave enough to pull the plug for me before I'm locked in.

No vent for me. Others may disagree, I'm sure, and I respect their choice completely. As Nikki says below, lots of people live for years on a vent and participate in activities, even traveling.
 
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Not offended but you do need to consider not everyone takes the same course. In fact I think your experience was highly unusual. Being vented increases your risk of locked in yes but there are lots of people who live for years on a vent still able to participate in activities, go out even travel. So much depends on how your disease progresses. Diane is an example, there are others onFB and I recently met in person a quite young and vibrant PALS who does all the above on a vent and communicates via eyegaze in such a way that we had a long and meaningful conversation. Simply put one size does not fit all
 
All available studies report becoming "locked in" is very rare, in part because those on vents have previously expressed wishes for not reaching that stage, or die for other reasons before that stage is reached. The invasive ventilation decision (I try to say "invasive" because volume control modes on a BiPAP are "noninvasive" ventilation, which most PALS ultimately experience) is probably best made for other reasons.

However, anyone undertaking a trach should specify in advance, as with all their other wishes, whether becoming locked-in should trigger caregiver action.

As noted below, a vent or BiPAP of any type can be turned off. If someone depends on BiPAP 24/7, in any mode, turning it off in the setting of having previously titrated morphine to comfort can bring death as quickly as someone on invasive ventilation.

Note that "refused all tubes" is not the common experience of death in ALS. Most PALS ultimately use a BiPAP (which is attached to a mask via a plastic hose) and/or a feeding tube.

When wishes are previously documented (and as are confirmed in the moment, as not being locked in implies some ability to communicate), no matter what respiratory support is being used near death, and a willing/able caregiver implements them, the process as reported here and elsewhere has generally been peaceful and dignified.

Best,
Laurie
 
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I thank you all for your input and education. :) I greatly appreciate it!
The coughing issues give me pause, but I am leaning towards no venting.
I don't need to decide today and will spend some more time thinking and praying about it.
:)
 
Nikki, Thanks so much for your input and for the suggestion of Diane's website.

Diane, Wow, thank you so much for all of the work you put into your website! It is a wealth of information and I will refer back to it frequently!
 
I don't envy the very difficult decision you have to make Marges.

Whatever you decide, you'll have support and empathy on the forum. I am somewhat grateful I don't have to face that decision, as invasive ventilation is very rarely done for PALS in my country.

Take care,
Ells.
 
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