General Question

tinyfaery's avatar

How long would you wait to remove the machines?

Asked by tinyfaery (36197 points ) November 17th, 2009 from iPhone

My mom, who has had MS for over 40 years, is on a ventilator and non-responsive. She was sick last night, aspirated vomit, and was unresponsive this morning. She’s been getting fluids, tests and anti-virals. We’ve been doing this since 7 am or so.

My mom left specific instructions not to be put on machines. My dad has decided that he will give it till the morning and then take her off the ventilator. She could still breath on her own, but we can’t know.

Aside from the MS she is very healthy. How could she die of a stomach virus?

Is one day enough? If not, how long? We want to honor her wishes. What would you do?

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84 Answers

trailsillustrated's avatar

I would respect her wishes. very sorry for you to be going through this

Blondesjon's avatar

If I had made those wishes, I would want them honored.

It is a very tough decision and I am very sorry that you have to go through this.

hearkat's avatar

I am so sorry that you are faced with this decision.

Have they done neurological tests to determine brain and brainstem function?

dpworkin's avatar

What a terrible situation. I don’t feel qualified to help you, but I did not want to let this pass without telling you how sorry I am, and that I and many others will be thinking of you and your family.

casheroo's avatar

I am so very sorry :(

We had a similar situation with my grandmother recently. She was healthy prior to a fall and then acquired MRSA in the hospital. She wanted to go, she couldn’t breathe on her own, but no one ever told me about brain function. I think the fact that she was much older, and had been depressed since losing the love of her life a few years prior helped make the decision.

I personally believe in honoring a persons wishes, but if there is any way she can recover and be able to breathe on her own, then I might give it a week or two. You and your father probably know your mother best. I’m very very sorry you have to go through this. (((hugs)))

derekfnord's avatar

Like everyone else, I’m so sorry that your family is going through this. I’ll differ from the others’ advice just slightly, though. Certainly I agree that your mother’s wishes should be honored, but I would personally try to honor the spirit of them (which I assume was to not have her life artificially extended via machines because she didn’t want to linger). Were I faced with your father’s choice, I would probably give it a little longer… maybe three days. Because this sounds sufficiently unrelated to her chronic condition, that the machines may just be seeing her through an unconnected rough patch long enough to recover from that, rather than prolonging her life in the face of her MS…

(And now I see @casheroo and I are more or less on the same page here…)

rangerr's avatar

::hug::

Iclamae's avatar

As you probably know, MS is an ailment in the immune system. Getting a virus on top can affect your mother more than a healthy person because her immune system’s torn between what to… “fix.”

I think your father’s the only person really “qualified” to make this decision as he knows your mom best. As for my personal opinion, I don’t disagree with him. My great aunt was kept at home on machines but was responsive. She let them keep her on machines, but I know how pained she was by it. If your mom already made an opinion about it, I’d want to respect that.

I’m very sorry for your situation. And again, <hug>

KatawaGrey's avatar

This is a terrible thing and I am very sorry to hear this. My mother and I have discussed this very thing and she would want me to take her off the machines. If faced with the decision, I’m not sure I could make it. From an objective, outside point of view, I would say to honor her wishes. This is a tough thing but remember, any action you take only shows your love.

janbb's avatar

So sorry you are going through this painful situation, tiny. Wishing you comfort as you face these decisions, and a hug.

aprilsimnel's avatar

This happened to my maternal grandmother in 2004. When it was determined that her brain function was close to nil, she was taken off the machine.

I’m so, so sorry.

jbfletcherfan's avatar

My SIL waited 3 days before she shut things off for her husband. It’s a terrible decision. I feel for you. You have my thoughts & sympathies. I’m so sorry.

wildpotato's avatar

Oh tiny, I’m so sorry! ::hug:: Similar situation with my grandma earlier this year.

I agree with @derekfnord about honoring the spirit of her wishes. How frustrating that it should be a problem like aspirated vomit that lays her low. Has her neurologist examined her yet? I would wait until the neuro can get an estimate of how long your mom was without oxygen, and gets EEG in order to measure your mom’s brain activity before making any move. The neuro’s exam will give you a good idea of whether it’s likely she will pull through with some ability for cogent thought-process.

fireinthepriory's avatar

First of all, I’m very sorry. This kind of situation is so painful. Personally, I would ask the doctors how long they would wait. No doubt they have seen similar situations and will be better equipped to tell you when the ventilator becomes something that is merely prolonging the inevitable. In general, I agree with all those that said they would wait a little longer, to honor the spirit of your mother’s wishes without making a decision that is irreversible too soon. One day seems a bit fast to me, especially because one of my friends was in a coma for a week after a car accident and then woke up. I would probably wait somewhere in the realm of two weeks. Good luck, tiny.

mcbealer's avatar

It’s unimagineably painful to watch a loved one suffer. I will be thinking of you, and am sorry to hear this sad news.

When my aunt became gravely ill, she too made very specific DNR type requests. So she was moved to a private room at a hospice, and spent about 1 week there. The staff were incredibly kind and attentive, and did everything to keep her as comfortable as possible.

Although it was sad to watch her breathing deteriorate, we got to participate in her care, for an example keeping her mouth hydrated. I felt closely connected to her at this time, which I’m not so sure would have been the case if she had been in a traditional hospital setting along with all the machinery. I will always remember caring for her in those last days, and even though she was in and out of consciousness, in my heart I believe she knew we were there with her.

You are very blessed to have the support of other family members at this time, and I’m sure as you draw closer you will make the right decision. <<hugs>>

Darwin's avatar

As others have said, it is a very difficult decision to make, and I am very sorry that your family is having to do this.

One thing I would do is ask the doctors specifically about brain function. If the doctors say there is still some brain function that would be sufficient for a normal or near normal life, then I suggest waiting a few more days. However, if they say she is brain dead, then it would be time to stop treatment, waiting only long enough for everyone to come say goodbye.

However, I must say this: my husband has been on life support several times. The most recent time was for three weeks. He pulled through and doesn’t remember any of his time in ICU, including the machines.

YARNLADY's avatar

I share your concern. My husband’s parents won’t even call 911 when one or the other passes out in the hall. They have both had episodes in the last few months. You need to let them choose what they want, no matter how painful it is.

In our case, Sis is stuck with picking up the slack, she calls 911 and rushes over to their apartment. Pops is currently working with Hospice, and the first call goes to them, and they give advice.

Kraigmo's avatar

I might slightly go against her wishes for a few days just to make sure, just like you’re doing. I’d also tell her what’s going on even though she might not hear it (just in case, though).

I’d definitely honor her overall wish… I’d just give it a few extra days. You’re stuck between making sure this isn’t temporary and not allowing her to suffer, per her wishes.

And of course you must be suffering too. I wish there were words to really help you and her, but of course there isn’t.

I’m sorry you and her are having to deal with this awful predicament. I can’t imagine it myself… but I just hope everyone in your house gets as much loving comfort as they need.

Russell_D_SpacePoet's avatar

My warmest thoughts and most heart felt condolences to you and your family. A persons wishes are important. I know I wouldn’t want to have to make the decision myself. That said, I think your father should have the final say since your mother is unable. The extra day will not hurt. Again, I am so sorry.

jamielynn2328's avatar

My heart goes out to you and your family. I agree that a few days would probably not be compromising your mother’s wishes. Hopefully the machines are helping her out through a hard time, and not actually providing life.

Good luck. Much love to you.

filmfann's avatar

@tinyfaery I am so sorry for your heartbreak here.
My Mom was put into a coma purposely, to recover from ARDS. She was never able to recover, and we unplugged her 3½ weeks later. She had a DNR, and she made her wishes clear to me, and to the hospital staff.
We waited far too long before we turned off the machines. She never should have gone thru all that.
Respect your Mom’s wishes, and know you both are in my prayers.

augustlan's avatar

Oh, tiny. I’m so sorry. :(

I agree with those who mentioned brain activity/function. If there is a chance for her to recover, I’d wait more than a day. If all hope is gone, then honor her wishes as soon as everyone has said their goodbyes.

madsmom1030's avatar

My thoughts and prayers go out to you and your family during this difficult time. I agree with all of the people that suggested a neurologist determine brain function to see the amount of damage. You mentioned that she aspirated and I know this usually causes pneumonia- have they told you whether it is viral or bacterial? I have had pneumonia many times and have a compramised immune system also. When I get admitted it usually takes a few days for anti-virals or antibiotics to kick in and for the infection to show up in the blood cultures. I would want to balance that with her wishes. Please know that you will be in my family’s thoughts and prayers.

Dog's avatar

I would absolutely not want to be on machines either and have made this clear to my family.

But this question really made me think. There is a difference between temporary and long-term. If there is hope to go off the ventilator and return to what was normal in life I do not think I would object. However if I had brain damage or would not have the possibility of recovery that is when I would want to be unplugged.

I know that your family will make the right decision once all the facts are clear.

I am thinking of you and your family and am so sorry.
Please keep us updated.

Jeruba's avatar

All I can say is that I know what a difficult question this is, having faced it myself. I hope you will listen to whatever your heart tells you, and most of all I hope that you and your other family members can come to the necessary agreement without any clashing or bitter feelings among you. Everyone has to be able to live with the decision you make together. One option is reversible; the other is not.

kellylet's avatar

I have no advice for you I just wanted to let you know that I am sending love to you and your family and although we are relative strangers if there is any additional ways in which I can be of help or support please know I am available to you.

Psychedelic_Zebra's avatar

This is a really horrible thing to deal with, I’m sorry your family has to go through it. My MIL was on a ventilator and a feeding tube after a head injury several years ago. She was in acoma, and my wife had POA of her Mom’s medical. She had to make the final decisions of taking her Mom off the vent, and then remove the feeding tube due to staph infection in her belly. She died quickly, but it was one of the worst weeks of my life.

MY MIL always said it was about Quality of Life, not Quantity of Life.

Supacase's avatar

I am so sorry. This is a terrible situation for everyone involved and the decision that needs to be made is extremely difficult.

As a complete outsider, I would tend to think that her DNR wishes are centered around her desire to not prolong suffering from her MS. She may very well never have imagined that a stomach virus might have put her in this situation, even temporarily.

You will be in my thoughts.

Buttonstc's avatar

Oh TF, even tho we don’t know each other very well, I’ve read enough of you posts to get a sense of you. You have my sincere concern and virtual hugs in this distressing time. So sorry you have to face this.

I have had to deal with my own Mothers sort of similar situation. However, for us it was a bit more clear cut as the likelihood was that if she ever awoke, she would basically be little more than a vegetable. There was so much brain damage.

But without that crucial bit of info (brain condition) I would be hesitant to make a decision which cannot be undone until all the test results are complete.

I also know from personal experience that pneumonia can take quite a while to recover from and can really knock the wind out of one’s sails. So in light of that, I would be inclined to wait a week or two or at least it is clear if there is chance for recovery to a where she was prior to the pneumonia.

I would also ask each doc what he/she would do if it were their own parent.

Hopefully, they can give you and your Dad some clearer guidance once all the facts are in. You’ll do the right thing.

tinyfaery's avatar

Thanks for all of the well wishes.

She is starting to open her eyes and she responds to her name. She is being tested for H1N1. We’re waiting for the doctor.

Hopefully we won’t have to decide.

Darwin's avatar

Sounds as if there is hope that she will make it after all. I hope so.

hearkat's avatar

Yes, that is a very hopeful sign! Your family are in my thoughts with best wishes for a smooth recovery!

Dog's avatar

Baby steps- tentative hope!
Thanks for the update.

janbb's avatar

Sounds more positive. My thoughts and hopes are with you, tinyfaery. Keep us posted as you can.

tinyfaery's avatar

Prognosis: Very critical. She has pneumonia, she is septic, her blood pressure is low, and her heart rate is high. She is on an anti-viral, blood-pressure meds, and other stuff. Doctor said that the machines and meds are what’s keeping her alive. He said that it’s standard to wait 48 hours to see if the antibotics start to work. The doctor isn’t optimistic. We are giving it until tomorrow morning, then my dad is removing the ventilator. He is already making plans.

I’m so torn. I want to wait a week at least. She is aware of her surroundings. She responds to her name, she even laughed. The doctor asked her to show him two fingers and she did. Are we going to tell her we are stopping the meds and machines so she can die?

I’m home to shower and eat, but when I go back I’m going to ask her and see if she can respond.

janbb's avatar

If she is cognizent and can respond to your question, ask her what she wants, as you say. It should be her decision to make if she can make it.

(A hug seems so trivial a thing to send but here it is.( ))

Dog's avatar

I agree to find a way to ask her.
Otherwise I am afraid this will haunt you the rest of your life.
If she cannot respond on her own then certainly go with what your Father says.
I am so sorry you are facing this. :(

SpatzieLover's avatar

@tinyfaery It’s a difficult thing, but I would respect my mom’s original wishes. My dad died in a similar manner. It was painful to see him linger (my sis allowed the hospital to put him on the vent, I later had to convince her it was his time. It took days before he passed without the vent…on the final day I fought tooth and nail for more morphine, and he was finally at peace).

My ((((((((((((((((((((((comforting thoughts))))))))))))))))))))))))))))))))) are sent your way.

Stop all the meds except for pain meds, and tell the docs your mom’s wishes are for Palliative Care only.

Darwin's avatar

Since she can respond and is aware, your family would be crazy not to ask her if being taken off the vent is still what she wants. If she says yes, then do it, but if she says no, do not stop any treatment until she changes her mind or is totally unresponsive and brain-dead.

Sometimes folks express those wishes when they are healthy, not realizing how unhealthy they can be and still want to live.

casheroo's avatar

@tinyfaery I’m so sorry this is all happening. It seems so sudden. I know when my grandmother was in and out of consciousness, she made it clear she wanted the tubes out of her. Her children knew what she wanted. I’m sure you and your family will make the best decision (((hugs))

aprilsimnel's avatar

@tinyfaery – I hope you’re able to help your mother as best you can, and I agree with asking her what she wants if she’s still able to communicate what she wants to you. I wish everyone in your family peace.

hearkat's avatar

When I first read about the sepsis, my immediate thought was to give it a couple days to see if the antibiotics are helping… then read that the Doctors said the same thing.

If she is showing cognizance and does not seem miserably uncomfortable, I would give it the 2 days. If the antibiotics aren’t effective in that time, she will become miserable and your decision will be clearer.

As others have suggested, ask mom to give a thumbs-up if she wants to keep fighting, or to put her hand down, palm up, if she’s ready to let go (obviously, use gestures that will work based on her current motor abilities… just choose very clear motions). I hope that you will be able to get a clear idea of her desires so your mind can be at ease.

Buttonstc's avatar

If she is aware enough to respond to the doc’s direction to raise two fingers, I would assume she could answer questions of a yes or no variety. Is your Father just wearying of the whole situation of coping with her chronic illness?

I guess I’m a little curious as to why neither he nor the docs have asked her for some clue as to what she wants.

I’m so hoping that whatever happens that it will bring a sense of peace that the right decision is made for your sake and for everyone involved.

tinyfaery's avatar

I asked her specifically, twice. She nodded that yes, she wants to stop the machines. We’ll do it tomorrow if her prognosis has not changed.

madsmom1030's avatar

My heart goes out to your mother, you and your family. You will be in my families thoughts and prayers. I am glad that you were able to have your mother communicate her wishes.

Dog's avatar

(((((((TinyFaery)))))))))

mcbealer's avatar

@tinyfaery ~ you are in my thoughts. Sending much love your way.
Wish I could help in some other way.

augustlan's avatar

Sending positive thoughts and love your way, tiny.

janbb's avatar

And me as well, tiny.

hearkat's avatar

She has made her wishes indisputably clear. It is never easy to face the loss of someone so important in our lives… Cherish the time that you have now to find closure and peace. Many, many hugs for (((((((you, mom, and dad.)))))))

aprilsimnel's avatar

@tinyfaery, we will all be with you in spirit as you take as much time as you need to sort everything out. I know it’s hard. ((((((hugs))))))

forestGeek's avatar

@tinyfaery, I’m so very sorry you are going through this and my heart and thoughts go out to you and your family!

Despite how difficult this must be, I definitely think your family is doing the right thing in honoring her wishes. I would do the same as well if I were in this position.

My grandfather had a stroke in his late 70’s, and lost both his ability to talk and any use of his muscles. He lay bed ridden like that for two years, and it was the most painful thing to watch. He would just cry when me and my family would come visit. He was so active, cheerful and so full of life before the stroke, so to me that wasn’t him laying there. Though he was not on machines, he was kept alive through medication, and his quality of life was absolutely zero. I know this is a bit different than your families situation, but because I had to see this, I vowed to never look a situation such as this in a selfish way, and always honor what loved ones wish.

<<hugs>>

Darwin's avatar

I am glad your mother was able to communicate her current wishes to you. Although losing her will be heart-breaking, at least you know for certain that turning off the machines is what she wants. It will be an act of love that only next of kin can perform.

You will be in my thoughts.

tinyfaery's avatar

We removed the ventilator and stopped all meds except the antibiotics. She’s on a bit of morphine. It’s been almost 3 hours and she’s still hanging in there. The doctor is surprised. Maybe she’ll pull through.

janbb's avatar

@tinyfaery Thanks for keeping us posted. My thoughts and hopes are with you for a peaceful outcome. Hope you are able to get some rest.

Dog's avatar

Hoping.

casheroo's avatar

Lots of thoughts

SpatzieLover's avatar

(((((((((((((((((((((Comfort))))))))))))))))))))))))))))

Cupcake's avatar

I’m so sorry @tinyfaery… sending good wishes to you and your family.

mcbealer's avatar

@tinyfaery ~ May your heart be lifted by our thoughts. <<<hugs>>>

tinyfaery's avatar

I’m sitting, watching, waiting for my mother to die.

filmfann's avatar

@tinyfaery I’ve been there. I am so sorry.
If you can, lean down to her, and sing to her. It will help you both.

SpatzieLover's avatar

@tinyfaery Talk until your exhausted. Embrace lots! May she pass in peace.

janbb's avatar

Remember that whatever you feel is o.k. to feel.

hearkat's avatar

Be with her and let her know you are there. The sense of hearing is a very basic brainstem function, so even if she is not cognizant of your words, she will be comforted by your voice.
((((((((hugs))))))))

casheroo's avatar

She’s in no pain, that’s the best you can give her. Lots of love for you and your family.

Jeruba's avatar

I have kept that painful vigil too. Talk to her. Read to her. Hold her hand. Help her with the work of dying.

I hope she may have a peaceful passing. And I hope you will be peaceful in the knowledge that you honored her wishes.

Dog's avatar

What ^^ Jeruba said is exactly my wishes too.

Cupcake's avatar

I have no words of wisdom for you, but I am thinking of you and your family and hoping for peace and comfort for all of you.

tinyfaery's avatar

My mother died on November 21, 2009 at 7:35am, PST, at the age of 63. She went quick in the end.

SpatzieLover's avatar

May her soul rest peacefully.

My condolences to you and your family @tinyfaery. (((((((((HUGS!))))))))))

many of my relatives have passed in November, too….including my dad

janbb's avatar

My heart is with you, tiny. Lean on those you love like your wife, and feel secure that you honored your mother’s wishes. Give yourself the time you need to grieve.

jamielynn2328's avatar

I am so sorry for this unexpected loss. You have been in my thoughts and prayers. Sending love and blessings to you and your family. May you find some peace today and all days knowing that she will never be in pain again.

madsmom1030's avatar

My thoughts and prayers go out to you and your family during the difficult time. Be around those who love and support you. Try to remember to take care of yourself- eating and sleeping, allow yourself to grieve, and if you need to talk with someone there are wonderful grief counselors out there. my grief counselor that helped me work through my 1st husband’s death was wonderful and helped me to remember that i had to keep eating and sleeping or i would get sick- lost 10lbs in a week and a half. we are also here to offer words of support, encouragement.

Dog's avatar

I am so very sorry.
May we all be as blessed to have a family as loving as yours when it matters most.

((((((((((Tinyfaery))))))))))))))))))))

dpworkin's avatar

Oh, @tinyfaery, I am so sorry, She was so young! What a terrible ordeal for you and your family. Oleha Ha’a Shalom. May she rest in peace.

Darwin's avatar

My heart goes out to you, tf. When you can, cherish the good memories.

casheroo's avatar

(((Hugs))) So sorry for your loss.

tinyfaery's avatar

See my comment here.

madsmom1030's avatar

My heart goes out to you- it is hard to watch someone you love die. When my husband killed himself I held him close until he passed. The pain was unlike any I had ever felt. it took quite awhile to heal and there were times that I wondered if it would ever go away or hurt less. My grief counselor helped me immensely and I had an online support group that helped during those nights when sleep just wasn’t happening. they had all lost a spouse to suicide and knew how i was feeling because they had been there. they also shared what life was like several years down the road. i think it was called grief net and there are many different groups. you might consider doing that at some point since you enjoy fluther. You and your family our in my thoughts and prayers.

augustlan's avatar

Love and hugs to you and yours, tiny.

hearkat's avatar

My thoughts are with you and your father, and all whose lives were touched by knowing your mother. ((((((((hugs))))))))

aprilsimnel's avatar

@tinyfaery, please accept my deepest condolences.

Kraigmo's avatar

@tinyfaery love to you and your Mom, Dad, and whole family.

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