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?
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..
you should not post as if you know for a fact what happens to people after they die. you're imposing your religious values on others. saying more or less that someone will go to h*ll because he/she committed suicide...if that's what you believe, that's one thing, but don't lay that trip on someone else.
it's not suicide if someone chooses to no longer continue aggressive life support. if you don't get that, you really shouldn't work in any area where this issue could remotely come up. i would hate to think of you standing there judging some poor soul who has had it with chemo/rads/other life-extending treatment.
Thanks for your opinions. It is indeed a very tragic situation, and has become harder as I got to know her more personally. I really like this lady and never have cared for an ALS patient before. She still has limited movement of one arm, that is IT. Even her tongue is paralyzed. It is a blessing for her that she can still write short notes.
Her chart doesn't include what happened before she came. She wrote the story, best she could. So I had to figure it out best I could. I agree she needs a psych eval, she is depressed, cries a lot. I know who the social worker is, and will talk with her. I guess I am afraid that suddenly, everything will happen very quickly, psych eval, hospice admission, admit to an ICU somewhere and turn off the ventilator, without giving the poor thing a chance to have her say, to be guided in talking with her family. She needs an advocate present when she is talking with them. That is what I'm going to tell the social worker. I need to hear that someone is LISTENING to this lady, especially her family.
CDK, I understand your shock. Please try to remember, if God wants her to live, she will live after the vent is turned off, right? He's given us the knowledge to keep loved ones with us awhile longer than we used to be able to, but he gets us all in the end. No one's soul never wears out.
This is one of the most horrible diseases imaginable. These people really suffer. I took care of a nurse (of course, ever notice, nurses seem to have nasty things happen?) recently. She opted to be ventilated when necessary.
She was in a really nice nursing home, but had to be transferred to a facility that would take trachs and vents as she got closer to needing this. She cried frequently. She was able to tap into a network of support agencies for people
specifically with this disease so that may be something to look for. They provided her with a special computer to communicate with as well as a Hoyer lift, and specialized WC. Staff had difficulty with her decision to prolong her life because she was so difficult to care for physically (heavy and immobile), and very needy emotionally (understandable). I think the ombudsman idea is a good one, BTW. It's tough all around with this disease.
This is one of the most horrible diseases imaginable.
i agree.
my son had to do a paper on als.
in his conclusion, he stated while the disease slowly chips away at the very essence of one's being, their cognitive abilities remain intact: and that he's not sure if he would want to be 'aware', if he suffered with this disease.
this poor lady needs 1. permission to die and 2. atc ms04.
cdk, you need to research this disease process before you so blantantly profess your morals. It is probabley one of the worst nightmares out there, and that patient legally, and ethically had a right to refuse life support. I am absolutely appalled that they would not honor her request. I am sure at the time of resuscitation she was not able to protest, and now after the fact it is a liability the hospital is hopefully jumping on to rectify. But, cognition all there, there should be no question, period.
Specializes in Open Heart/ Trauma/ Sx Stepdown/ Tele.
Maybe the social worker, case manager, ethics committee need a push...have a situation at work that if not for the nurses and md's ethics would never have been called in....sad.
I took care of someone in this very situation many, many years ago; a man with ALS who was intubated against his wishes, became vent dependent, and would cry multiple times every single day, begging the staff in the nursing home to shut off his vent. I left the facility before he passed away, but I will never, ever forget that poor soul lying on that bed, pleading for someone to take him off the vent
Saddest thing I ever saw was on 20/20. Doctor Kevorkian helped an ALS patient to commit suicide with fumes from his own van. It showed the man crying and saying his goodbyes to his partner and baby daughter, and his partner said the hardest thing she has ever done is wheel him in his wheelchair down to that van one last time.
I will never forget that. Worst disease I can imagine.
I took care of someone in this very situation many, many years ago; a man with ALS who was intubated against his wishes, became vent dependent, and would cry multiple times every single day, begging the staff in the nursing home to shut off his vent. I left the facility before he passed away, but I will never, ever forget that poor soul lying on that bed, pleading for someone to take him off the vent
This is torture. How can we allow this to happen to human beings? We are more compassionate to our pets when they are suffering.
I see this conflict frequently in dialysis. Often a patient will decide to stop treatment and the family will object. I think this is selfish and unnecessary. I think it's okay to question and make sure that it's what they truly want versus just having a bad day. Beyond that though, I respect the patient's wishes.
What is even more horrible we have an employee who is rabidly pro-life. Whenever a pateint wants to stop treatment he works extra hard to talk them out of it. He even went to so far as to visit the home of a patient who had stopped treatment to try and talk her out of it. I think this is unethical and unbelievably insensitive. He has no right to foist his personal beliefs on a patient. It's bad enough they have come to a place where they may want to let go. They don't need an employee guilt-tripping them into continuing their treatment when they really don't want to.
I work in ICU and I can say that sometimes even though the patient wishes to be a DNR when the time comes and the patient is no longer capable of communicating their wishes ie arrest, confusion and the family decides they want everything done to keep their loved ones alive then it is the family wishes that the MD's usually follow. It is sad that this is common practice even when a living will is present. Sounds like in this case that is what happened with this lady.
I think it is wrong of any of us to judge someone unless we know the shoes they've walked in. I cannot see how anyone could say this woman was wanting to kill herself. She has lived her life and she knows that in order to continue to live her life she must depend on life support. It is everyone's right to be a DNR. I believe that eveyone knows his/her wishes and those should be honored.
What is even more horrible we have an employee who is rabidly pro-life. Whenever a pateint wants to stop treatment he works extra hard to talk them out of it. He even went to so far as to visit the home of a patient who had stopped treatment to try and talk her out of it.
is your employer aware of this persons' actions?
not only is that unprofessional and inappropriate, it might be construed as harrassment.
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PANurseRN1
1,288 Posts
you should not post as if you know for a fact what happens to people after they die. you're imposing your religious values on others. saying more or less that someone will go to h*ll because he/she committed suicide...if that's what you believe, that's one thing, but don't lay that trip on someone else.
it's not suicide if someone chooses to no longer continue aggressive life support. if you don't get that, you really shouldn't work in any area where this issue could remotely come up. i would hate to think of you standing there judging some poor soul who has had it with chemo/rads/other life-extending treatment.