Question about discontinuing life support

Katnip, RN · Aug 1, 2004

First, I'm very sorry for your loss. It must have been very painful for you.

I've only been present when a few patients were removed from vents. All were on morphine drips that were enough to prevent this kind of distress from the dying patient. End of life should be as gentle as we can make it. I haven't seen this type of patient reaction, but then like I said, I haven't seen that many.

As far as preparing the family, we usually expect the patient to go quietly, so we don't tell them their family member will act like that. Talking about what to expect occurs well before the vent is disconnected, not while it's going on.

leslie :-D · Aug 1, 2004

i wasn't quite sure where to place this question. my grandfather, who, i have to mention, raised me and my sister along with the help of my grandmother, was involved in an accident on april 13 '04. he received multiple injuries on the left side broken clavicle, scapula, shoulder, all but 2-3 ribs (both sides), shattered hip, broken pelvis, femur, ankle, wrist, neck, and a tear to the aorta. he was sent to the elvis presley trauma unit in memphis, tn. while he was there he recieved amazing care from some very qualified nurses. thank god there are those that can do it. by the way, i am not a nurse yet and will begin my nursing classes soon, so i have a few questions. on may 22 we arrived at the unit and stayed most of the day (we were given unlimited access to him, and i knew enough then to know that they weren't very hopeful). anyway, during the afternoon we had asked if the vent was the only thing holding him and they said no that his heart was still holding up and that his blood pressure was stable. knowing that we went to eat and when we returned his pressure had dropped, and we were told that he could live a couple of days more b/c of the vent or we could disconnect and it would only be a few minutes. after a family meeting and a meeting with a chaplin we decided to disconnect and let him go. the staff was fine with that and agreed that it was the best step.......i was waiting to be prepared for what to expect and no one said a word, they just began disconnecting everything to make it as quiet as possible so that it would be a peaceful as possible. well, what happend after that was something i don't believe i will ever get over. he had been on morphine for a while and was nonresponsive before they started the disconnect, and then immediately when they disconnected the vent his eyes flew open and he looked at me with a horrible look on his face as if screaming from his mind that he couldn't breathe and what is going on.....he then began really struggling and turning purple and his tongue hit the roof of his mouth and he was making horrible noises and tears started pouring out of his eyes. so, my question is is this the norm, are family members usually not prepared for this, and how am i supposed to help patients when i become a nurse (which i am seriously beginning to doubt that i can now)? i feel like i will just be reliving this over and over. he was like my dad........ sorry for the long entry, but this is really bothering me, shouldn't they have prepared us even a little? and just for the record i could not have left the room regardless, i could not let him pass alone. thank you for your time, and letting me at least get this off my chest for the moment.

what a horrible experience for you....i don't know what to say but i do feel that someone should have walked you through the process. i am so very very sorry.

how long was your grandfather alive before he finally passed?

leslie

Dixiedi · Aug 1, 2004

I have seen that happen before, twice. The staff should have prepared you. Nurses are just humans. It's very emotional for the staff when they have to "turn somebody off". It's a very different perspective from what the family feels but does remain very difficult.

Most pts who are vent dependant just stop breathing and their heart follows within a couple of minutes. Your grandfather, as you said, was non-responsive when on the vent. Maybe he didn't know he was vent dependant. This does not mean there were no other brain functions working so when the vent was discontinued, he became frightened and this fear elicited the response you and your family witnessed.

It is no indication that he might have survived if he had remained on the vent. It only indicates his basic survival instincts were intact.

I believe every pt, even those who are non-responsive should be talked to, they should be told what is going on. He should have been told what was going to happen.

I find fault with the nursing staff for not preparing you or your grandfather. But again, nurses are only human and so many these days get so involved with "gadgetry" that they forget there is a human being on the other side of the machines and bodily functions they are so proud they know all about.

It's very difficult for all nurses and when you are new it will be even more so. You will learn and "get used to it". Remember, do not become emotionally involved; remain empathetic but not sympathetic. Keep an emotional distance while being supportive and understanding. And above all, always talk to your pts, even those who never respond, we just don't know enough about the brain to know how aware they are what's going on around them. And last but not least, inform families of as much as possible, they are not in the way, they are your pts best hope for an excellent outcome, even if that outcome is death.

CarrieRN2006 · Aug 1, 2004

what a horrible experience for you....i don't know what to say but i do feel that someone should have walked you through the process. i am so very very sorry.
how long was your grandfather alive before he finally passed?
leslie

Not quite sure what you mean, he was 77 when he died. The accident was April 13, he passed May 23. After the disconnect it was a excrushiating 10-15 minutes before his heart finally stopped.

leslie :-D · Aug 1, 2004

Not quite sure what you mean, he was 77 when he died. The accident was April 13, he passed May 23. After the disconnect it was a excrushiating 10-15 minutes before his heart finally stopped.

sorry i didn't clarify...i was curious as to how long he lived after the vent was disconnected.

again, i am relieved that this horrible time is over for you and your grandfather.

may you find peace and healing.

leslie

NeuroICURN · Aug 1, 2004

I am so sorry to hear of your grandfather's passing. It sounds as if he was someone that was truly special to you.

I have withdrawn all medical support from people several times and I have never had the experience you described.

My hope is that somehow you will be able to heal. I'll keep you in my thoughts and prayers.

CarrieRN2006 · Aug 1, 2004

Its nice to know that this isn't the norm for everyone, although it will never remove this experience from my memory........Thank you for your thoughts and any others that may have some other thoughts to offer also.

leslie :-D · Aug 1, 2004

carrie,

i feel safe in saying that even if we tell you that it shouldn't have happened that way, it is not going to change the outcome. it is absolutely horrible what happened.

but us telling you what went wrong, will not change anything but WILL cause much undue anguish to you.

it is obvious that this is still haunting you.

i would certainly hope that any responses you get would not encompass "they should have done this".....

i do hope you seek some crisis counselling in putting some much needed closure and peace on your situation.

leslie

CarrieRN2006 · Aug 1, 2004

I have seen that happen before, twice. The staff should have prepared you. Nurses are just humans. It's very emotional for the staff when they have to "turn somebody off". It's a very different perspective from what the family feels but does remain very difficult.
Most pts who are vent dependant just stop breathing and their heart follows within a couple of minutes. Your grandfather, as you said, was non-responsive when on the vent. Maybe he didn't know he was vent dependant. This does not mean there were no other brain functions working so when the vent was discontinued, he became frightened and this fear elicited the response you and your family witnessed.
It is no indication that he might have survived if he had remained on the vent. It only indicates his basic survival instincts were intact.
I believe every pt, even those who are non-responsive should be talked to, they should be told what is going on. He should have been told what was going to happen.
I find fault with the nursing staff for not preparing you or your grandfather. But again, nurses are only human and so many these days get so involved with "gadgetry" that they forget there is a human being on the other side of the machines and bodily functions they are so proud they know all about.
It's very difficult for all nurses and when you are new it will be even more so. You will learn and "get used to it". Remember, do not become emotionally involved; remain empathetic but not sympathetic. Keep an emotional distance while being supportive and understanding. And above all, always talk to your pts, even those who never respond, we just don't know enough about the brain to know how aware they are what's going on around them. And last but not least, inform families of as much as possible, they are not in the way, they are your pts best hope for an excellent outcome, even if that outcome is death.

Thank you for your response. Just a note, my grandfather (papa) knew he was on a vent as he had requested to be placed on it during the first week. He had been struggling to breathe so much that he thought that it would be a welcome relief to not have to work so hard to breathe. The staff said they had never had a pt request a vent before him!:) And although the staff didn't let him know that we were turning off the machines, I did. I told him that we had all talked about it and had decided that he would be better off in Jesus' arms because there was nothing else that we could do to help him.

jemb · Aug 1, 2004

Carrie, I'm so sorry that your grandfather's passing was so traumatic for all of you.

He was blessed to have your love and presence with him through his last moments, but I can understand that doesn't help you feel any better about what happened.

Is there a grief counselor at the hospital that you could see to help you through the loss and the circumstances around his death?

tsgarman, RN · Aug 2, 2004

I have been involved with several end of life issues and I have to say that I have never witnessed what you went through. I think as a nurse I would have been concerned seeing that same reaction from your grandfather. I do know that each pt reacts differently to their situation. I am truly sorry for your loss and sorry that you had to witness that reaction.