turning off the vent?

[myrzh]

Hi - I'm new here and know someone who has ALS. She has a vent and trach.

One of her family members wanted to talk about knowing when it's time to turn off the vent, and that my friend had indicated she thought it was time. I thought that it can't be just turned off like that! As they are 100% dependent on the vent it would be considered murder, right? My friend is alert and oriented, just completely unable to breath, talk, move, or do anything else, so it's not like "removing life support" for a coma patient.

This is a difficult topic, and I hope not too upsetting. I know this must be faced for anyone with a progressive terminal disease who opts to go on the vent, and hope someone here has some input. How does one die when machines are keeping you alive? How does a paralyzed person ask for it to be turned off if they feel like it's time to stop?

Thanks for your replies.
Karen

 

[Blackpool]

What a tough question,sorry I can't help but wanted you to know I feel for the choices that you are having to make. I am sure you will get some good advice from others on the forum. Peace be with you.

 

[joelc]

Call hospice and ask them. That is one of their primary functions.

Tough question and a very controversial and emotional one.

 

[Marjorie R. Wilcox]

This question is so difficult to comment on. I want to tell an experience of mine to help you think things out.

I was caregiver to one particular lady who knew (with Hospice) that the end was very near. Up to then she still had some quality of life, but the last night she couldn't feed herself her nightly dish of ice-cream. Next day she ate all 3 meals at the table with help.

That night we laughed and fed her her ice-cream and as I pivoted her from the wheelchair into bed, she wanted to hold me for a while. We stood there and embraced and laughed and talked upbeat... like she
was hugging me goodby.

During that night she kept taking her bipap off. I kept checking on her (you can tell if the air isn't blowing with the right sounds) I repeatedly put it back on her............gently... all night. In the late morning when I came back to my shift, the caregiver told me she didn't wake up and was unconcious and passed quietly while sleeping.

Hospice was very pleased with the outcome. However no discussion was made either. Why? She had excellant care and a happy ending for all.

Now, if you ask me.... I believe she was ready to go and refused to keep the bipap on.
She needed it and didn't want it anymore. No words were shared.... no plans were
announced..... she just decided for herself. I'll never know.

 

[myrzh]

Thanks for your comments. The local hospice does not admit patients w/vents so she is not on hospice. And I think if she could take the vent off she probably would, but she can't. She has a trach and can't move a muscle to disconnect or turn anything off.

I suppose she'll eventually get pneumonia or something, and refuse treatment? It is very sad for her whole family.

Peace,
Karen

 

[BethU]

Karen, you're right. There are legal issues, and the patient needs to make their wishes known in advance in writing. (That's according to my neuro, of whom I asked this same question.)

Is your friend able to communicate in any way? Eye blinks for yes, no, etc.? I think the decision has to come from the patient, otherwise the machines will go on indefinitely. Does she have any kind of advance directive? Had she discussed this with her doctor when she went on the vent originally? If she had signaled to anybody in advance that she would like to go "naturally" at some specific point, or at some signal from her, or at the point where she is unable to signal, that will be the important factor, as far as I understand it.

Otherwise, as I understand it, it's murder or assisted suicide. Check with her lawyer about any advanced directives she has made.

 

[Pidge]

Karen, I went through a similar situation about 18 years ago w/ my father the difference being that he refused to go on a feeding tube. The legalities may be different taking somone off life support who is already on. My dad was diagnosed w/ Motor Neoron Disease of an unknown origin what ever that means. Anyway he could not do anything he was bed ridden & couldn't swallow he chose not to have a feeding tube we did have hospice coming to the home, all I can say is we honored his wishes and stayed with him every step of the way we let him know that if at any time he changed his mind we would help him. I can't even explain what that was like I will never forget those few day's that seemed like an eternity hospice walked us thru every step. I hope this dosn't sound morbid but I think it is important to honor our loved ones wishes & be there for support. Is there a Living Will. I almost hesitate to post this it is such a touchy subject but I've been there & I may be there again somday I don't know all I can say is God help us all and give us Strength.

 

[DgtofTNfan]

Hi Karen,

Your question leaves me with questions similar to BethU's.

How did your friend "indicate it was time?" Does she have any established method of communication such as eye blink or eye gaze?

What is the individual's relationship with her physician and had she discussed this with the doc when she was able? If she is consistently able to "indicate" in some fashion would the physician be willing to support her?

Does she have a designated health care surrogate and if so is that person willing to pursue this with her keeping in mind she is not mentally incapacitated just physically? Is there anyone in her immediate family that would not support this 100% because if so and they voiced dissent then this could prevent her from proceeding with removal given the definitive end of life result and the limited legal precedents.

Is your friend at home or in a facility? A facility would have an Ethics policy or Ethics board that would also have to review the legality of removing a ventilator.

Inquiries to Hospice would be helpful to discuss if they had ever done anything like this before and if so, what is the process for removing the vent and services that would be available to her for her care/comfort.

My father passed away recently and chose not to use a ventilator. We did ask "What if" questions in regards to being placed on the ventilator and then deciding down the road that he had had enough. Both Pulmonologists we spoke with said they would honor his wishes but he needed to communicate his wishes clearly as to what would be the determining factor that signaled enough if he was unable to do so. Dad opted not to use the vent so we did not journey any further on this topic other than discussing options so I am afraid I am not very helpful.

What a very difficult topic, I feel for your friend. Your friend's situation may be an opportunity though for others to recognize the importance of planning to ensure their wishes are able to be managed.

Dana

 

[wacked]

Hi Karen,
Not knowing anything about anything that has been planned/discussed, I have to say, sit back and listen. Your friend may have made her wishes known , or she may have thought she had more time. Listen. In any/either case, God willing, she will get her say.

 

[jolts]

I can only tell you our own story and what we believe. I hope it helps.

We are Christians and believe that our loving God knows the number of our days. We can not try to play God and take life and death into our own hands. Now, if only it was that "black and white".

We were first faced with these types of challenges when our first-born son was born premature with lung problems. He ended up on a trach and vent dependent. We decided to keep the vent on. Then he started to have bronchospasms and the ventilator couldn't ventilate him. His lungs were so damaged that they just wouldn't inflate. We tried everything. In the end, we decided that when his heart stopped, we would not do CPR. His heart wasn't the problem, it was his lungs. So, near the end, we gave him pain meds. and held him. He died at the age of 7 months 1 day on November 15th, 1999.

Then, in 2003, my husband was diagnosed with ALS. He ended up on trach and vent dependent. Who would have thought 10 years after having a son on a trach, my husband would be on one also? We decided to go the same route as we did with our son. We decided to fight as long and as hard as we could. In December of 2008, my husband started to get infections about once a month. Usually they were urinary tract infections. Each month we would almost lose him. But, each month he would fight through it and then return to his "normal" self. Then, the end of March 2009 he had another complication. The infection wasn't the main problem this time. We were rushing to try to figure out what was different this time. Then, his urine output stopped. His other vitals were not good. We could tell that other organs were starting to "shut down". I always had wondered how it would happen when the ventilator would just keep breathing for him. We ended up calling the paramedics because our nurses couldn't get readings on the pulse ox or blood pressure cuff. They put patches on his chest and they told us when his heart stopped. We didn't do CPR because, just like our son, his heart wasn't the problem, so restarting it at that point wouldn't do anything anyway. Then we turned off the vent.

We believe in Jesus and He is our Lord and Savior. The only thing that gives me hope, and gives my kids (ages 9 and 5 year old twins) hope, is that we KNOW that daddy is in heaven. He's been cured of his ALS. And, when I remember the ugliness of death...and the horrible things he must have endured those last few days, I know that we "fought the good fight...and finished the race". And, I remember that he is in heaven now and his death is just a faded memory to him now. And, I guess, when I get to heaven, that's when I'll find out if we made the right choice. Right now, with the unique experiences that I've had, I can say that I think we did the right thing, we made the right choice.

I've always tried to remember that if I error....I need to error on the side of life.

With love and prayers,
JoLynn

 

[hopingforcure]

Jo,
Thank you for the kind and thoughtful post, your love for your husband is so evident. You seem like a strong amazing women, so lucky to have you join us on the forum. Please know that we all learn so much from insight like yours, thank you again.

 

[joelc]

JoLynn, don't wonder if you did the right thing! You definitely did! I am sorry for your loss and pray our Saviour gives you the peace that surpass all understanding!

 

[DgtofTNfan]

Beautiful post JoLynn. I am so sorry for the loss of both your husband and child. You have endured seemingly more than one can bare yet you offer your experience with wisdom and grace.
My heart goes out to you.
Dana

 

[mare]

JoLynn-
For what it's worth- from an RN who worked in an ICU for 10 yrs.- you absolutely did the right thing! Don't ever question or second guess your decision. Be at peace with that;
but somehow, I think you are! That's all that matters.

 

[GlenBrittle]

Jolynn, you did the correct thing.
To hell with other peoples opinions , they didn't make that decision.
Bravo.

I can only hope that when my number is up , the same thing will happen.

Glen