End-of-Life Education for the family?

icyounurse, BSN, RN · May 17, 2009

I dont know what the official answer here is, but as an ICU nurse who has been placed in that position often I think it really just depends on the situation. However, I always tell them they need to discuss their wishes with the docs. Sometimes with certain families I dont breech this type of discussion at all if the situation isnt right.

But if a family member asks me specific questions about their end of life options, I always answer honestly and simply. I have never had a doctor be upset at me for it. Quite the opposite- many are more than relieved to have that DNR order as it is more appropriate for so many of our elderly frail terminal patients.

whipping girl in 07, RN · May 17, 2009

I have only had one instance where a physician was upset with me that end-of-life discussions took place without his involvement. A patient's daughter asked me specific questions on a Sunday when this particular surgeon was not on duty, I answered them to the best of my ability and told her to make sure she talked to the doctor when he was available on Monday. I think he was given the impression I brought it up, which I didn't. I have never broached the subject myself but if someone asked me questions I answered them. It is not fair to families to blow them off, especially when they are dealing with a physician who often rounds so early they can't catch him. And honestly I've seen some docs completely avoid the situation and expect the nurses to run interference so they don't have to deal with it.

Nurses have an important role in helping families come to difficult decisions. We spend a lot more time with the patient and family and develop more of a relationship. We can certainly soften the blow. But I believe ultimately it's the physician's responsibility to initiate that difficult conversation with the family.

Trailer · May 18, 2009

Thank you very much, it sounds like this isn't something that is specifically a nursing function. Well, actually with both responses it sounds like it may be or may not be. But I thought we were supposed to educate our patients. It's all very confusing.

SunnyAndrsn · May 18, 2009

Thank you very much, it sounds like this isn't something that is specifically a nursing function. Well, actually with both responses it sounds like it may be or may not be. But I thought we were supposed to educate our patients. It's all very confusing.

I think it can be very confusing. If the family of the pt. seems confused, then perhaps it's time to let the MD know that there is confusion about care options. In the meantime, it's appropriate to let the family know that they have care options--and will need to discuss those options with the MD. Sometimes a social services/hospice consult (in our LTC, our SW helps get the hospice referal) is the way to go and the easiest option to get those comfort measures.

I try to feel the family out--what do they want, does the pt. have a POA and/or advanced health care directives? I try to chart specifically on that as well--"family indicates they are interested in a comfort care focus at this time, MD notified".

I guess if it is a question of what comfort cares involve, I try to be general until they can have a more specific conversation with the MD.

It can be tricky to educate, advocate, and yet not offer medical advice. I'm surprised a nurse was fired over something like this though, I wonder what happened to the pt in this case? Was the comfort care focus appropriate for that pt?

rngolfer53 · May 18, 2009

On another forum a nurse posted that they were fired for having an end-of-life discussion with a dying patient's family. Supposedly, the family thank them and cried because they needed to know what options were available and none of the MDs were talking with them.
I guess this nurse told them they could elect comfort measures only, and when the MD found out about it, the nurse was fired without warning because the MD insisted on it.
Do you think, we as nurses, are allowed to have such discussions with patients? In school it seems they teach we are to advocate for our patients and tell them about their healthcare rights, but if one can be fired for it, I'd rather know before making the mistake.

Well, I work in hospice, so obviously one won't get fired for talking about EOL. The opposite would be closer to the truth.

I didn't read the post about the nurse getting fired for having that discussion so I can't comment about the particulars. One shouldn't get fired for having that talk, if that was all that was going on. If the nurse was stepping into the MDs role, for instance by making a prognosis, then that's a problem.

There is a real lack of EOL discussions in general, and it is by no means confined to MDs. Our hospice agency still gets way to many referrals with the Pt a few days from death. For sure, it's impossible to tell who is "responsible" for the late referral, since Pts and families can tune out any mention of death as the most likely course of the disease.

I haven't looked at it, but I would guess that 10-15% of our families don't want the Pt to know they're on hospice services. Imho, it's the family in denial more often than the Pt.

BTW, Hospice Fast Facts has tips on initiating this discussion, as well as lots of other useful stuff.

http://www.eperc.mcw.edu/ff_index.htm

MichelleB34 · May 18, 2009

I think it is within the nurses role to answer questions from the patient and or family honestly and within the scope of our practice. But of course the decision to place the patient on comfort care has to be made by the physician after discussion with patient and/or family in regards to the patient's wishes. Once the decision is made to place the patient on comfort care the nurse is often taking care of the family as well as the patient. ie answering questions, assuring them their loved one will be kept comfortable, providing emotional support, etc.

mama_d, BSN, RN · May 18, 2009

I work with a lot of oncology patients, so it definitely comes up. Usually the patients have a good idea of what they want, but are unsure of how to implement the paperwork process to get it in writing, at which point we turn it over to pastoral care.

I can't say that I've ever had a doc be upset with me about discussing EOL issues with a patient.

pagandeva2000, LPN · May 18, 2009

I think it is insane that a nurse can be recommended for termination for something like this. What bothers me even more is that I am not hearing what sort of support was offered to her from nursing administration.

Trailer · May 20, 2009

I think it is insane that a nurse can be recommended for termination for something like this. What bothers me even more is that I am not hearing what sort of support was offered to her from nursing administration.

Well, since I was last in here I have had an in-depth discussion with this nurse, and she sent me some information. It is the note she wrote in the patients progress notes, and this note is what the MD referred to as having read. Without any names there isn't any identifying information, so I will go ahead and post it in here. When I read it, I thought it was basic education, but she says she was fired without any warning after the MD read it (and then said he wouldn't admit any patients if this nurse was still working there):

30 Apr 09 1800: Pt on vent + sedation gtts are on but pt is struggling against restraints. Daughter @ BS and I disucssed c her that we are unable to sedate him appropriately becasue his blood pressure drops too far and @ this time the MD does not want him on vasopressors. We discussed end-of-life options and DNR/DNI. I expressed to her that the pt appears to me to have gotten worse over the last seven days rather than better (edema, decreased BP, cardiac issues, increased FiO2 to maintain sats, lung sounds, etc). Pt. family in tears thanked me for discussing EOL, DNR/DNI, "because" she said, "No one is telling us anything." She stated: "I needed to hear this." I said to her that Dr --- may have a different opinion and that she is he MD, but that in my experience a pt in this condition @ his age often does not improve and they may want to begin to thin about the possibility of LTC c tracheostomy, PEG tub, and longterm vent support vs. comfort measures only.

According to this nurse, she had this discussion because the patient had been left badly gagging and struggling on the vent for three days, was getting worse every day, and the wife (who was somewhat "simple" according to the daughter) beleived he was getting better because the MD would come in the room take a quick look and walk out saying "Looks good!" She said they wouldn't sedate him enough because they would have to start vasopressors and the talk among the residents was that if they started vasopressors they would never get the patient transferred out of their ICU. She said the patient actually died on May 5th, six says after she had this talk with the family.