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?
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.
I could understand that concern if this was a situation where family members were making a decision for their loved one. But it is not. The patient has clearly stated her own wishes.
I don't know how you guys feel about the part about telling the person about God in reference to them deciding to be taken off the vent. I think I would allow the chaplain to handle that. I am myself a Christian but I think at that time I would have to make the decision to be the persons' nurse and not their pastor. Their friend perhaps, but I think the separation of minister and nurse are important for obtaining good ethics. I am not saying that the religions part isn't important, it is. I think though to be involved in the medical part it might be wise to relay this the chaplain. It might be okay to talk about this subject as long as it is not pushing it on them. I don't know, I know that I live in a place that is close to alot of different ethnicities and if I had alot of different beliefs put on me by my nurse it would be stressful at a time like that.
It might be okay to talk about this subject as long as it is not pushing it on them.
no patient, especially at the end of their life, wants to be burdened with guilt or God's wrath. if the pt. has religious concerns, they should be referred to the chaplain, i agree.
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..
it is not a nurse's role to talk to patients about any god or the nurse's perception of god (lord). it is the christian religion (and sometimes jewish) that refers to god as "lord." why are you assuming she is christian or that this is the god that should be discussed with her? if you cannot separate these issues you are operating as an evangelist and not a nurse.
i feel really sad for this patient, she is so young but so debilitated...
is there any way this patient can talk to a psychlogist, make sure she made a right decision?
i don't understand your question.....make 'what' right decision? to stop ventilatory support? there is nothing reversible in this disease process. this lady can no longer speak, eat or swallow. the only thing she gets to decide is dying on the vent or off of it. i thought she was crying because she did not want to be vented and her wishes were totally disregarded. this poor soul needs an advocate.
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..
if she wants to talk to someone about her religion, fine. but you should not try to drag religion into this situation. if she asks someone to pray for her and that person is comfortable doing so, fine. but to pray for someone by that person's bedside if the pt. doesn't want it is intrusive and insensitive. this is not the time to prostelytize.
and you did suggest she was going to h*ll for wanting to die.
Specializes in Acute Med, Pediatric Hematology-Oncology.
this really is a sad case. it's not sad because the family is having difficulty handling it. or even that this woman has an irreversible condition. what is sad is that the medical wishes of a competent individual are being ignored. it doesn't matter that it takes this woman a long time to communicate. she is communicating. she is letting her wishes be known. and she is being ignored.
there is a difference between helping a patient kill themselves and removing life sustaining measures, or stopping treatment. i only hope that someone realizes this soon and respects her wishes.
It is not a nurse's role to talk to patients about any god or the nurse's perception of god (Lord). It is the Christian religion (and sometimes Jewish) that refers to god as "Lord." Why are you assuming she is Christian or that this is the god that should be discussed with her? If you cannot separate these issues you are operating as an evangelist and not a nurse.
I agree. While the nurse should offer to contact the appropriate spiritual advisor, it is not appropriate to push one religion.
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..
note, i placed the bold emphasis. i just ask that all please remember that some people get very offended when others, especially healthcare providers, assume that they are christian. it would be more appropriate to refer the pt to a chaplain, most chaplain's that i know of are trained to offer spiritual comfort to any type of faith without advocating or condemning any one faith/belief system.
I wasn't able to read the entire section and all of the posts, but was there any legally binding information like a health care advance directive and living will prior to this deterioration and placement on a vent? I know she could always change her mind but was there one to begin with?
I filled mine out at 20years of age. Why? So my family would not have to make the hardest decisions like that one and live with the question "Did we make the right decision? " for the rest of their lives. I highly encourage even the patients that are admitted for an infected hang-nail to complete theirs and make it legal.
I did see posts regarding "patient advocacy" and I truely believe in that, however, patient advocacy started the first day of diagnosis (5 years ago) and the nurses responsibilities started the day of diagnosis as well.
We didn't have this lady as an assignment today. I did visit with her before I left, and I also spoke with the staff, it was hard because everyone was so busy, but I managed to ask a few questions.
She will be transfered to a Hospice, supported by an Ambu bag, they'll admit her, medicate her and stop Ambu-ing. What she has chosen is called terminal weaning. Get this. Hospice can't/won't take her as a patient while she is on the vent. So they have taken a preliminary history (probably by phone/fax) but she is not allowed daily visits by them. I didn't ask why, I bet I know why. Their visits are nonreimbursable if she is on life support. If you think this isn't true, ask any hospice approved by Medicare/Medicaid, I think they'll tell you. Why would they send an employee to visit her if they won't be paid? While she is in the nursing home Medicaid is paying for her care, and they won't pay for two agencies to care at the same time, it's one or the other. Medicaid and Insurances (I think) are the same, doesn't matter. It's considered double billing, am I right?
Anyway, that said, She told me she was allowed an outing with her family a few days ago, accompanied by RT. She seemed to be rather unimpressed by this outing. Maybe it is a mental weapon not to make a big deal about it, or thing about it too much. She was able to talk so that I could understand her today (no writing!). She is quite certain of her decision, and comfortable with it. She knows she is doing what is best for her, she said that, not me. I won't go into all that she said, but I felt better, I think she is comfortable and she said she isn't too afraid, just a little.
I told her goodbye, and that I'd not forget her, and she thanked me and said to thank the students. We did say a few more private things to each other.
I've had a really busy full day and I'm too tired type more right now. Google "terminal weaning" to learn more about this process. From what I read, there aren't any standards of care with this. I mean, no set amount and type of medication so that the feeling of air hunger isn't felt 100% of the time.
Jolie, BSN
6,375 Posts
I could understand that concern if this was a situation where family members were making a decision for their loved one. But it is not. The patient has clearly stated her own wishes.