I have had limited occational contact with a 50 yo patient who has been brought to the facility with ALS or Lou Gerhigs disease. She is ventilaor dependent. She communicates by writing on a board, very slowly and hard to read. My heart goes out to this woman. Her mind is perfect, but she is trapped in this body and is 5 years with this disease. She was brought to this facility because no one else in her area would take a ventilator patient. So she is an hour away from her family, who comes on the weekend. She says she was put on the ventilator without her permission, the family insisted. She has decided to end her life. She told me she'd be gone in two weeks.
I've questioned the two Respiratory Therapists who work with her. One explained that the wheels to begin this process have begun. she and her family will need visits from social workers and hospice. Then she'll be transfered to an ICU closer to her family and sedated with MS and taken off of the ventilator. One says she will be snowed and completely comfortable and have an easy death. The other said it doesn't always come easily, the MS helps some but not entirely.
The patient and I had a limited conversation about this and it left me rattled. I found I had trouble talking with her about her death. She obviously is having trouble with her decision. She said her family says she owes her grandchildren to stay here. I responded that I was so sorry she has this terrible disease and was so rattled I don't know what else I said. She cried and I hugged her. I had to leave, I'd already spent so much time, communication from her is very slow.
I don't know that religious counsel has been in, or if she even wants it. I worry that this lady isn't recieving the emotional attention she needs (from myself or anyone else). I would think that hospice would be coming every day to start this process but I've not seen anyone visit her yet.
I feel guilty that I've had her as my patient 4-5 times but spent my time with her concentrating on tubefeeds, meds, ventilator, treatments, and haven't taken the time to be there for her emotionally.
I'll see her again later this week, dont' know if I'll be assigned to her, but wondered if you could help me with a few thoughts on how to do a better job this time? It might be my last time to see her. How do I say goodbye?
I was present at a ventilator discontinuation on an ALS patient. I was a coordinator at the time and had worked with this patient in another hospital. She asked for me to be present. We went through the process involving ethics, her family and her doctor. She made the decision and picked the day. She had been on a vent for a year. We should never take this decision away from a patient who is alert and competent. When we as a profession have nothing else to offer and the patient is comfortable with their decision it is the only humane thing to do. She said goodbye to her family, asked them to leave the room, and asked me to stay and hold her hand. She passed peacefully after being sedated and the vent removed. It was my honor to be there.
I was present at a ventilator discontinuation on an ALS patient. I was a coordinator at the time and had worked with this patient in another hospital. She asked for me to be present. We went through the process involving ethics, her family and her doctor. She made the decision and picked the day. She had been on a vent for a year. We should never take this decision away from a patient who is alert and competent. When we as a profession have nothing else to offer and the patient is comfortable with their decision it is the only humane thing to do. She said goodbye to her family, asked them to leave the room, and asked me to stay and hold her hand. She passed peacefully after being sedated and the vent removed. It was my honor to be there.
Thank you for sharing this. I so wish that all of these patients could have the benefit of other caring human beings allowing them to pass on peacefully.
Again, this board has helped me deal with something I encountered in nursing that I couldn't do very well on my own. I honor you who helped me here. I'll see my lady tomorrow. It might be the last time I see her, but I'll make time for her for sure.
i never said i wanted to see this person suffer.. every pt is a person and not just a pt.. everyone needs to calm down a bit.. the only thing i was getting at is if she knew or if anyone has told her, sat with her and talked a little with her about the lord.. if she then still rejects and does not want to live.. then be all means stand by her side and pray for her, talk with her, be her loving friend till the time comes. next time she cries and you’re with her, ask her why she cries.. don’t make her write anything.. you ask the questions and have her blink for yes or no.. i dunno, just a thought..
not only is that unprofessional and inappropriate, it might be construed as harrassment.
leslie
Yes, the employer is aware. Unfortunately when it comes to this particular employee, our manager looks the other way when he breaks rules. It is a source of a lot of friction in our clinic. The rest of us have to follow rules but he doesn't.
Anyway, I think what he did was deplorable and completely unacceptable. He had no right to do this. If I were the manager I would have disciplined him some way.
she was put on the ventilator against her will.. can anyone tell me why this happened..? if she was meant to die, then she would have died.. i'm just saying that if it's not your time to die and you decide to end it before your time, it's the same as killing yourself.. if you kill yourself, then you will not go to a better place..
speaking of god, he needs to help me right this second....
so, you believe that god is vengeful and unforgiving? and that because we knew my father did not want heroic measures, including all forms of life support, that we're guilty of murder because we took him off the vent???
oh, man, say it ain't so...
my father was meant to die - because when we took him off the vent, he died - therefore, he wasn't meant to live in the first place and the vent was an interference...he always said "if you take me off, and i die, i was meant to die; if you take me off and i live, i was meant to live". i couldn't agree more, really....
i never said i wanted to see this person suffer.. every pt is a person and not just a pt.. everyone needs to calm down a bit.. the only thing i was getting at is if she knew or if anyone has told her, sat with her and talked a little with her about the lord.. if she then still rejects and does not want to live.. then be all means stand by her side and pray for her, talk with her, be her loving friend till the time comes. next time she cries and you're with her, ask her why she cries.. don't make her write anything.. you ask the questions and have her blink for yes or no.. i dunno, just a thought..
i posted midway through the thread...if i misinterpreted you somehow, please forgive me....:blushkiss
but you must see where we got what we got from your original post.
I was present at a ventilator discontinuation on an ALS patient. I was a coordinator at the time and had worked with this patient in another hospital. She asked for me to be present. We went through the process involving ethics, her family and her doctor. She made the decision and picked the day. She had been on a vent for a year. We should never take this decision away from a patient who is alert and competent. When we as a profession have nothing else to offer and the patient is comfortable with their decision it is the only humane thing to do. She said goodbye to her family, asked them to leave the room, and asked me to stay and hold her hand. She passed peacefully after being sedated and the vent removed. It was my honor to be there.
It was being there with my daddy that gave me the last push to nursing school - and I too thought how lucky I was to have been there. It was the entire point of my admissions essays - that nursing is a privilege, that nurses are there when people are born and again when they die; it is truly a privilege.
There needs to be a family conference including the S/W and the doctor. The family will have a very hard time accepting this but they could be offered pro-active bereavement counselling through hospice. Sounds like the family need active intervention to help them deal with the feelings of guilt and future loss. And yes, I agree with the previous poster - the patient needs advocacy without personal judgmental attitudes from nursing.
i dunno how you get god is vengeful and unforgiving from two posts.. i just hope the right decision is made by the pt and all efforts to help her is on the way..
i dunno how you get god is vengeful and unforgiving from two posts.. i just hope the right decision is made by the pt and all efforts to help her is on the way..
you did say that if you choose to discontinue your support, you're ending your own life, and you do not go to a better place, or something quite similar. from that i drew that you were taking such denial of care as suicide, and that god would not forgive you for it. that would make god a vengeful and unforgiving god, which i do not believe him to be.
Also, it is important for a chaplain to be involved. Cdk001 brought up a good point - what if the family is afraid to d/c life support b/c of their religious beliefs? They may feel that taking her off the vent is equivalent to ending her life. Which family member wants to be responsible for making that decision?
Hopefully the pain and the suffering isn't too drawn out, for the pt. and the family.
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lsyorke, RN
710 Posts
I was present at a ventilator discontinuation on an ALS patient. I was a coordinator at the time and had worked with this patient in another hospital. She asked for me to be present. We went through the process involving ethics, her family and her doctor. She made the decision and picked the day. She had been on a vent for a year. We should never take this decision away from a patient who is alert and competent. When we as a profession have nothing else to offer and the patient is comfortable with their decision it is the only humane thing to do. She said goodbye to her family, asked them to leave the room, and asked me to stay and hold her hand. She passed peacefully after being sedated and the vent removed. It was my honor to be there.