Published Sep 22, 2012
OnlybyHisgraceRN, ASN, RN
738 Posts
There are many things I love about nursing, however there are some things that are really soul crushing. Like, having a 90 year old patient, who is a full code, trached, has a peg, multiple pressure sores, infections, renal failure, heart failure, S/P CVA , GCS of 8 or less and the family wants EVERYTHING done.
Maybe it is just me but if it were my loved one I would not want them to suffer. I've been on the other side. I know what it is like to have someone you love become sick and be at deaths door. I know what it is like to hang on to a that little bit of hope that makes you believe that their prognosis will change; and sometimes it does.
However, it pains me to see a 90 year old, who is frail and clearly is miserable to be made a full code to appease the family. I know it is hard to let go of loved ones, at the same time it should be just as hard to see them suffer.
I feel for the husband of my 90 year old patient. They had been married 60 plus years. Every time he comes to visit her, tears swell in my eyes. He is so affectionate and caring towards her and honestly believes she will return to baseline and come back home.
I can't imagine what he must be feeling. I empathize with him. When he asks me how she is doing? I lie and say she's comfortable. That comforts him. Even though I know she isn't comfortable. The 25mcg of fentanyl ordered doesn't even touch the surface of managing her pain and discomfort, and ofcourse the doc doesn't want to order anything else despite the plea of us nurses.
We offered hospice, we offered counseling, we offered support but to no avail. The husband still refuses and wants us to do everything we can for his wife. Every time I touch his wife she grimaces and gives me a look of agony. All I can do is say "I'm sorry" every time I have to assess, suction, or change a dressing. I hate seeing my patient suffer, especially those who are in their 80's to 90's. They lived a long life, why can't the family understand this and let them die with dignity, instead of tubes inside every orifice of their body?
Once again, this is soul crushing. I feel guilty for feeling like this, but I see this so often and sometime wonder how much more I can take.
loriangel14, RN
6,931 Posts
I see this over and over. It is indeed heartbreaking.The silent plea in their eyes when you have to move or touch them is agonizing for the nurses.Why on earth you would want a loved one to linger in such a state is beyond me.We recently had one who's daughter wouldn't allow any pain meds as her mother was dying.The daughter was concerned that the med would make mind cloudy and wouldn't be able to talk to the family.The awful part was that the daughter was an RN.
iluvivt, BSN, RN
2,774 Posts
Nurses and doctors truly know the limitations of modern medicine but sadly many others DO NOT. I cannot stress how helpful a multidisciplinary approach in this kind of situation can be and it can often steer the family into making more human decisions.
Sometimes a physician DOES NOT have the courage to discuss this with family members and their training has led them to feel a sense of defeat if they do not continue to aggressively treat the patient. So they just keep on going until someone says STOP and that is usually nursing personnel and on occasion a family member. Palliative care nurses can often intervene in these types of situations and meet with the physicians and then family members so they get a true and accurate picture of the patient's prognosis. if a palliative care team or ethics team is not available then nurses must address the issues with the MDs on the case. Sometimes it just takes someone to get the ball rolling and usually that is after it is clear the outcome is not going to be good.
I know it is heartbreaking for the family but I would be absolutely honest if they asked how their loved one is doing. If they were suffering with every little thing I would tell them that was the situation even with pain medication administration. That will at least get them thinking and I have even MDs order more pain medication...even enough so that one of those doses may just be their last.
Yes I see this happen frequently...but I also have seen a a recent effort for nurses and doctors and palliative care teams to steer families into decisions to stop aggressive treatment and switch to palliative care. I have found that families are very comforted when they know a plan is in place to keep their loved one from suffering as much or not at all and there is a dedicated group of professionals to help them . I can say...It's darn well about time.
I have also seen family meetings with many members of the team present that absolutely fell on deaf ears. Even being brutally honest doesn't always work.
But you are right. There are some doctors that don't know when to say enough. Fortunately the ones I deal with are mostly pretty good.I have seen doctors talk until they are blue in the face about the futility of doing anything but provide comfort measures and the families still refuse to budge.
jadelpn, LPN, EMT-B
9 Articles; 4,800 Posts
Generationally, this couple (and many many others) come from a time and core values where the husband is the protector, the decision maker. That is what made a "good husband" and honorable man. He would perhaps think it inappropriate and almost "abusive" to withdraw treatment or cut back on treatment of his wife. That is not what a good husband "does". Perhaps still a conversation could have occured once or many times in their 60 year history where the wife could have said "do everything" and not understanding what "everything" is--and husband is clinging to that request. He perhaps doesn't see that as suffering, but her wishes being carried out, God's will.....it is a different set of values with people who are in their 90's. I have also had a husband say "she was a good wife, and a good mother and I need to take care of her now" or "I have put her through hell at times over our married years, now I need to do what's right"
There does need to be a family meeting. One to acknowledge that the husband has been dilligent in "doing his duty" as a good husband, (and he DOES need to hear that) however, the time has come where decisions need to be made. Now that the patient has been trached and pegged, she could conceivably go on like this for a long, long time. However, pain control needs to be addressed. He needs to know (as do the adult children) what the course of care for this patient entails. When he asks "how is she" I would most definetely say "I am having a difficult time controlling her pain" and assure him that you will speak to the MD about it. He needs to hear from the MD that she will not ever regain conciousness, that she will not be able to see him or the kids or the grandkids, and that the skin breakdown that she has do put her in a great deal of pain and that should he want to continue care, it would also result in diaylsis, which is not something that she will be able to tolerate. And what palliative care is--it is NOT "stop everything now and let her smother and starve to death" which is what often families think.
It can be heart wrenching to watch and care for this type of family dynamic. But we also need to take into consideration that there are different values at play here, as well as conversations that may or may not have occured between this family that we were not a party to. We can only educate, and educate again, and treat the best we can in the circumstances that exist.
MomRN0913
1,131 Posts
I went from icu to hospice because of this. I couldn't take cracking LOL's ribs during codes because families couldn't let go.
PMFB-RN, RN
5,351 Posts
When he asks me how she is doing? I lie and say she's comfortable. That comforts him. Even though I know she isn't comfortable. The 25mcg of fentanyl ordered doesn't even touch the surface of managing her pain and discomfort, and ofcourse the doc doesn't want to order anything else despite the plea of us nurses.QUOTE]*** I don't think your primary patient, his wife, is being well served when you mislead her husband. In your place I would give an honest description of my assessment of her pain and comfort level. We all know that some times families only hear what they want, but not always. It is possible that he really doesn't know how uncomfortable his wife is and he might make different decision if he knew. Either way you must give him the best information based on your professional assessment. I also think a frank and honest discuission witht he family of what happens during a code, how brutal it is and how low the sucsess rate is, is in order. As for being full code. I would ignore it if she arrests. I simply don't code people like that anymore. I have refused to code a number of similar type patients. The first time I thought I would get fired but nothing happend. Usually my refusal, when stated clearly, acts as a bucket of cold water on a bunch of amped up residents and floor nurses. I simply say "I can not participate in this code for ethical and moral reasons". At the very least it makes everybody else think about what they are about to do. If you can't do that I would make sure as many family members as possible are in the room during yoyur attempt to code her. Let them see. Hopefully they will call a halt very quickly.
*** I don't think your primary patient, his wife, is being well served when you mislead her husband. In your place I would give an honest description of my assessment of her pain and comfort level. We all know that some times families only hear what they want, but not always. It is possible that he really doesn't know how uncomfortable his wife is and he might make different decision if he knew. Either way you must give him the best information based on your professional assessment. I also think a frank and honest discuission witht he family of what happens during a code, how brutal it is and how low the sucsess rate is, is in order.
As for being full code. I would ignore it if she arrests. I simply don't code people like that anymore. I have refused to code a number of similar type patients. The first time I thought I would get fired but nothing happend. Usually my refusal, when stated clearly, acts as a bucket of cold water on a bunch of amped up residents and floor nurses. I simply say "I can not participate in this code for ethical and moral reasons". At the very least it makes everybody else think about what they are about to do. If you can't do that I would make sure as many family members as possible are in the room during yoyur attempt to code her. Let them see. Hopefully they will call a halt very quickly.
threebrats46
90 Posts
I feel the same way. It breaks my heart! We had one 80 yr old lady on a vent who was blistering and leaking from her skin,the son refused to DNR her. When she finally passed,there was a code and of course she didnt make it and the son refused to accept it and had to be removed by security because he was begging the staff to save his mother.
redhead_NURSE98!, ADN, BSN
1,086 Posts
Is that legal for you to not do a code? I think you need to find someone else to code them and not just stand there, frankly. I mean, I do wish people wouldn't do the whole "do everything" to their relatives when they have a feeding tube etc. To me, the feeding tube is the coup de grace. I place a high priority on eating. If I can't taste things and swallow them and I'm over 80 years old, I'm checking out. Maybe not everyone is like that and their wishes should be respected. The other day I shipped out a guy who had quite the length of necrotic bowel removed with a HUGE abdominal wound closed with stitches that looked like they might gap + colostomy + a wound drain bag on the other side, he is over 85 years old and has dementia, just yells at the top of his lungs when you even touch him. He had periods of lucidity and I just wanted to ask him if he wants to keep living like this and see what his answer was. His sister was the decision maker and my case manager said "She just wants to keep his check" but PTA he was in a nursing home and we returned him there, so you know it's unlikely that his sister is getting his check.
Is that legal for you to not do a code?
*** In my state it is. I am proteced by the concious claus law. The same one that permits pharmacists to refuse to dispence birth control. I have had a long discussion about this with my hospital's risk manager (a lawer). Either way in my view it is immoral and I will refuse to take part reguardless of the concequences to my career. I am my patient's advocate.
I think you need to find someone else to code them and not just stand there, frankly.
*** That isn't an issue. The whole code team (of which I am a primary member as rapid response nurse and code administrator)responds to all codes. I don't stop anyone else from coding a patient, I just refuse to take part myself. In each case I had certain knowlage that the patient did NOT want to be coded but their wishes had been disreguarded by family members and spineless physicians.
NutmeggeRN, BSN
2 Articles; 4,678 Posts
When my dad was dying in the ER (sp CVA of a year and a GI Bleed that day) the ER resident offered to bring him to the CT if we wanted....my mom wanted to say yes (she is an old school nurse, if the doc says, it must be true) but my dad pleaded with us prior to this admission to not allow any extra treatment measures. He looked at me and shook his head no...I said no , my brother said no ( he is a FF EMT) my sister thought about it for about half minute and we decided no......Mom agreed......I'm so glad because my dad died within the hour and he may well died in the CT Scanner.....alone....
It will be 8 years on Tues.....I miss him everyday...but we made the right decision, for him
The even confusing part is that the husband wanted the drugs but no compressions.