Published Nov 6, 2009
Avery205
6 Posts
I love being a nurse. I went back to school at age 33 to become an RN. I've had my share of helping to save lives as well as being there in the final moments of life for patients who are on hospice. I've seen many patients who have or will have such a poor quality of life that it seems cruel to keep them going by any means necessary while families sit there like an audience for a performance and watch their family member wither away as I do my job to keep them dry, turned, bathed, fed (if possible), and comfortable. As a nurse, I see things from a different persective than family members, yet try to understand that this is their family member whom they don't want to live without. Often, I wish that hospice or at least a change is code status was more of a norm than a fear or taboo subject for patients and family members. I get tired of seeing so much suffering by patients while family members sit there with a blind eye turned to their family member's quality of life.
My dilemma right now is that I have a family member in this situation. I am wishing that I could be that family member to turn a blind eye to what he is going through and hope for the best like everyone else. The thing is that I can't. I am an RN and I know what his day is like and his quality of life and I pray for him like everyone else in the family, but my prayer is not that he gets better and comes home, it's that he dies peacefully. But that is not happening. He has been in the hospital since the end of July when he collapsed. The paramedics did CPR and defibrillated him twice and intubated him on the way to the hospital and it has been a series of ups and downs from there. On his best day since that time, he was able to eat some soup and walk 10 feet with a walker. He already had COPD and heart disease among other things, but now also has an AICD, CHF and renal failure in addition to his multiple infections over the last few months (VRE, cdiff, etc.) He was intubated earlier in the week and remains on a vent with the possibility of now also needing dialysis.
This family member is my step father in law. He has a large family and step family with a lot of family dynamics. He is the typical patient that no one wants to take care of because of the entire picture. When I found out yesterday that they may start him on dialysis I just cried and cried for him. I don't want to lose him either, but I don't want him to suffer like this. He is a very proud, strong man and I think he would would want to live like this. I have a difficult time talking with my husband about it. I just try to listen, because when I give my opinion or advice I just seem cold and insensitive because I can't turn off the RN in me.
Any advice as how to handle my feelings on this yet be sensitive to the family would be greatly appreciated. Thank you for letting me vent.
SuesquatchRN, BSN, RN
10,263 Posts
I got nuthin'. I went through something very similar with my dad and you can't help.
{{{Avery}}}
canoehead, BSN, RN
6,901 Posts
Just put a bug in a few ears, "Do you think he'd like to keep going like this? Maybe it's better to just let him rest." Sounds like you aren't in a decision making position but bringing up the subject may open some doors.
GLORIAmunchkin72
650 Posts
As a professional your job is to continue caring for your patient until he or she takes the last breath. It does not matter what your personal feelings are or whether you agree with the family or not. I wouldn't have very many residents if every decision was based on quality of life.
escapebigd
261 Posts
I think as a part of his family you should try to be sensitive to your husbands, and all of the familys needs, and gently voice your opinion on how he does have a terrible quality of life right now, and that it may be time to let him have some peace. Try to not think like a nurse about this, but more as a family member and what you see him going through and let that be how you voice your opinion. I know I'm not a nurse yet so it was a lot easier to do that when my grandfather was dying.
Straydandelion
630 Posts
As an RN I can see your point, you understand what he is going through. Is he alert at all? If so, I am sure he has already thought of alternatives. As a family member, I would just support the rest as best I could and leave it up to him and close relatives to decide the outcome.
If not alert, possibly asking close family members what they think his choices would be if he was?
Any decision you make will be specific for your family as a family member more then an RN at this time... it is good to vent though, and sorry, I don't have any good advice for you, take care!
Thank you for your responses. It is true that I am not in a position to make decisions. I know my husband and a couple of his sisters have come to the realization that he will not get better and that he is at the end of his life. They have tried to discuss what his wishes would be. In fact, he signed health advocate papers stating that he didn't want to be kept alive by a machine and they are all aware of it. He is on a vent, has an AICD (that has fired more than a dozen times since implanted), and now they're talking dialysis. I'm not sure how many more machines they can put him on before adhering to his wishes! I believe they (when I say they, I mean my mother in law and my father in laws sons that are also health advocates) are justifying it by thinking that these machines are only temporary. I know that the doctor did talk to them about how poor his quality of life will be "if" he does come off the vent. My mother in law won't go up to the hospital by herself anymore because she is afraid to have to make any decisions by herself. I really think that she does not want to be the one to make the decision to stop treatment because then everyone would say it was her decision. I do beleive that if his sons brought up the idea that she would agree with it, because then it wouldn't be all on her shoulders. Maybe I will try talking to my husband about this.
My father in law is a great man. He is 73 and has led an accomplished life. His stories amaze me. I will miss him dearly, I just hate to see him go out like this. Again thank you for your responses and letting me vent.
Orca, ADN, ASN, RN
2,066 Posts
Sustaining life processes is not the same as living. This man doesn't have what most of us would call a life. His day consists of continuous monitoring, medications, medical procedures and machines. That is not the kind of existence that most people would want, especially when there is no hope of a return to a normal life. In a situation like this, the real question is whether the person is being kept alive for his own sake, or to delay the family having to deal with the pain of coping with the person's death.
Sometimes the best way to show that you love someone is to simply say "goodbye".
mamamerlee, LPN
949 Posts
I had many talks with my family over the years about end-of-life care. It isn't easy, and when the time actually comes, it still takes your breath away.
What would your FIL want? He said no machines, yet he is already dependent on them. Very scary to your family.
When my dad was actively dying, I had to force an issue about getting a tube for feeding. He had already turned it down, then the docs tried to get me to talk him into it. I had to say out loud to the docs - his kidneys are already shutting down. He was still AAO at that time, refused the tube again, and stated that he wasn't hungry. He made it very clear to us that he wasn't go to have the tube. He clearly understood the ramifications. He just wanted relief from his foot pain -neuropathy. We arranged for a morphine gtt, which started on a Wednesday, he died on that Friday morning.
It is so hard to make those decisions, my heart aches for you.
((((hugs))))
KneKno
106 Posts
Has there been an ethics consult to discuss his wishes with the family? Or, has a hospital chaplain been involved? Maybe the decsion-makers need to discuss options with a 3rd party. My prayers are with you and your family.
freefalr
112 Posts
avery, i hear you. i'm so sorry you and your family are going through this. it is really, really difficult being a nurse and knowing the situation from that vantage point, and also having to process all the emotions that go along with having a sick loved one. i am sorry for your father-in-law, and i hope those making the decisions for him will do their best to honor his wishes, even in the face of heartbreak and inevitable loss. i don't have anything helpful to offer, i just want you to know i am sending prayers your way. ((avery)):heartbeat
catshowlady
393 Posts
I don't have much either. The hospital's ethics committee may be able to help, since he did have advance directives in place. If theirs is like mine, if nothing else, they can help clarify the picture, answer questions, and open up discussions for his family. An ethics consult does not have to result in a specific decision.
Sorry for what you are going through. :icon_hug:
:paw: