Sensitive question: ventilator or no vent?

[Pearl]

My friend was recently diagnoised (early Aug.) with bulbar onset ALS. He is already on Bi Pap at night, and respiratory function is only at about 54%. (fluctuates)

He has indicated firmly that he is ok with a feeding tube and Bi Pap, but absolutely refuses to even discuss a ventilator.

My concern is that by not even discussing the possiblity, perhaps we (as his family and friend) are doing him a disservice by not providing all the information for him to make an educated decision. Yet, I think if this information is presented, he will be angry and resent the intrusion - possibly accusing us of "not listening to him" (I think he fears that he will end up on a vent when that is what he does not want). - he already has a living will , by the way, that expresses his wishes.

I'm thinking that the subject should be dropped, but I don't want to make the wrong choice.

Any thoughts?

 

[TRACY22]

Personnally

I vote respect his wishes, as he has said NO and placed them in writing.

The question, I would have , have either of you shared your faith?

 

[Al]

I would think that if he is that much against it that he has some idea about it. Some people want it and others don't. I'd say you have to respect his wishes. As hard as that may be to do. AL.

 

[MtPockets]

Curious about the ventilator

I would like to hear from more of you regarding the pros and cons of the ventilator, as I myself am troubled with the idea of living off machines like a vegetable. We have the technology to keep someone alive for a very long time if we use enough machines.
What is your experience? Especially from a faith based perspective. I know I will have to make that decision myself in the future, and so far I am leaning towards not using a ventilator, but I am open for suggestions and ideas.

I know this is a delicate subject that each of us has to make on our own, so thanks for any input.

God Bless
Capt. AL

 

[rickmcmahan]

I too have decided not to have a ventilator. To me, I think it would not be worth the agony my family and I would experience for me to be on a ventilator. If I cannot breath any more then it is time for God to take me home. I know this position is hard to accept, but my main concern is my family and how they deal with my disease every day. I don't want them to suffer with me being on a machine. Rick

 

[Al]

When I was first diagnosed in 03 I said I didn't want the vent. Now I am thinking that I'm not ready to go yet and it may be an option. My work here is not finished. I'm not particularly religious but seem to remember hearing from the priest when I was a child that we must do all in our power to live as God would have wanted us to. How do we know whether he wants us to die now or 4 years from now when the vent breaks down in the middle of the night or some other scenario? A very difficult decision indeed. New member Brentt has been on a vent for a while and seems to be doing well. He appears to have a good quality of life for him. Maybe we should be doing that too. Only God or whatever power you believe in knows. One thing that is important though is having the support for keeping the vent going. It is not easy but I am sure that a lot of families would sooner do that than see us die prematurely. Thoughts for a Sunday afternoon. AL.

 

[MtPockets]

To vent or not to Vent that is the question

I know it's a serious decision, but the bible says a merry heart does good like a medicine. Boy do we all need some medicine.

Anyway back on track, if I have one, I have no idea what is involved in maintaining a ventilator. I hear people mentioning having to suction something often, and having to be watched 24hours? Educate me someone, please, so I can make a more informed decision. Does it go on a tracheotomy, does it force breath for you, even if you have some lung function left? How much function before you need one?

Also was wondering about if you have to fight it to breath, or get in sync with it. If you have arm use left can you suction yourself? Will it go on your wheelchair with you somewhere?

I've seen one in the hospital and they are big clumsy looking.

Thanks for any responses. I'm kind of mixed in my feelings. When God created man God breathed into him the breath of life. Seems when the breath leaves, so should we? I'm being serious, not trying to be funny or anything. Just trying to convince myself this is what I want to do and to justify why in my own mind and spirit.

God Bless
Capt. AL

 

[Pearl]

I can give you some info. The vents for ALS patients are usually small and hook on to the back of a W/C. Vent use can be adjusted, depending on how much assistance the patient needs. I've known patients on vents for years - some are relatively active (they go places, do things, work).

I imagine it is something you have to adjust to. I've known other patients who tried it for awhile (6 months) and then decided "no, this isn't for me" and removed the vent. I think sometimes that is a much harder decision than just letting nature take it's course. When they remove a vent, the medical personnel will give the patient a decent dose of moraphine and perhaps some other drug like ativan. This is to make sure that the patient is comfortable when the vent is removed, it is NOT intended to "end their life". Some patients (I'm speaking of all patients, not ALS patients) continue to breath after a vent is removed even when it was expected that they wouldn't.

People on vents do need 24 hour care (monitoring). Usually a second vent or batter is in the home as back up. I think suctioning would be part of routine care. I think it is usually attached to a trach (much more comfortable than any other method I would think).

The very best person to talk to about it would be a respiratory thearpist, perhaps in assocation with your ALS clinic.

 

[TRACY22]

Feild trip

Docs talk but have you visited patients/friends on vents. We keep our minds but our bodies, oh well. Your local chapter may have both types of us that can get around and those bed ridden. A visit may be welcomed by our brother/sister.

 

[cartman]

ventilator or no vent

My time for decision is near and have made the decision to not vent. I believe this is such a personal decision only the individual awake at night with labored breathing can think it thorugh. Most of us are fortunate enough to have caregivers who would give us the support we need to vent. It is not lack of support or love from family and friends, it is a quality of life issue that allows us to welcome natures decision. God did not give us als nor is he involved in our decision not to vent.

 

[Pearl]

Well said.

 

[TBear]

It is a personal decision that is based, I believe, on each individual situation. Which is a nice way of saying that PALS, I believe, are ego centric when dealing with ALS. I would be too. My wife wanted one early on in the onset of ALS, but as time progressed (4 years) she began to see that what she was most concerned about (her children growing up) was no longer an issue. When problems with her respiration finally presented themself, in the course of the sickness, she was no longer interested in the ventilator.
You can't go wrong respecting a PALS decision and if they want to talk about it... listen! This is one of the easiest things that a CALS can do!
T.

 

[sufernan]

A choice we did not have

We did not have a choice. My husband was having a really hard time sleeping and he though it was because he was not breathing properly during the night. The breathing specialist give him sleeping pills and send him home. At the time, I was happy that he was told he did not need a vent yet. He died a few days latter in his sleep, he just stop breathing ......

 

[Pearl]

Sufernan,

I'm so sorry to hear that. In retrospect, do you feel that things should have been handled differently? It must have been such a shock.

 

[MtPockets]

I'm so sorry to hear that surfnan. That must have been a terrible shock for you.
Thanks everyone for the info about the vents. I'm just having to use a bi-pap for now, but want to be prepared for the decision when the time comes.

God Bless
Capt, AL