Denial, not just a river in Egypt

[AtlantaRN, RN]

Sad situation. Patient has been to the emergency 5 times in the last 7 days. ER doc told family today, stage IV cancer,

if he comes in again, we will stabilize him and send him home, there is "nothing more can be done". Family did not want

patient to be admitted til noon on saturday, but when he had respiratory difficulty this evening, they called and I went out.

Called pharmacist on call, he put together an ekit, called dme, they were sending out oxygen (his sats were 95-97 on room air, but with IV lung ca, better to have it and not need it than need it and not have it).........

Pt with 3+ edema to ankles, lungs wet......there is a bag of 1000 ml NS in the room-wife wants me to hang it because at the ER they only gave him 500ml........................pt with hx X2 mi's and one he had a stroke while on the table for open heart. When I wouldn't hang the fluids, secondary to wet lungs and 3+ edema....wife changed her mind, we "jumped the gun" with hospice.......she crossed her arms and pushed the chair away from the table... Poor man is pasty pale color, 3+ edema to ankles. I tried to educate that hospice is all about comfort, and symptom control. She couldn't understand why, because the home health nurses were giving him fluids every other day, why wouldn't I give him fluids.......tried to explain that his body isn't using the fluids he has in his system now. wet lung sounds and swelling to ankles, if I give him fluid it will get worse. and in the field, I don't have IV lasix in my bag to reverse him having fluid overload.........just so sad. He has only been sick for 3 months.

Son gets it, he is going to talk to his brother tomorrow morning, and wife wants home health nurse to evaluate him in the morning and she wants HER to give him the bag of fluids (I called the home health nurse to give her a heads up), but really, fluids is the last thing he needs.....He really needs a comfort kit at home and oxygen just in case. Once she made her mind up, that was it---she asked "so the marketer said if i needed someone to come and sit with him while I go grocery shopping, you would come out," I educated that on the weekends, i'm the primary nurse and i have a backup nurse, that more people are available for giving family a break during the week.....she said "they said I could call you for anything," you can, I replied, but I have to take the emergency calls before respite calls. I also educated that we don't replace the family...............((there are 2 sons there to help her also)). so hard for folks to go from aggressive care to comfort care.

Just a sad situation all the way around.

Thank you for listening.

linda

[tewdles, RN]

This is the season isn't it, Linda?

Sounds like you did everything just like a pro. As they say, we have to meet these patients and families "where they are"...problem is, some of them are not in the palliative universe with us...they are still in the curative orbit. It is unfortunate that so many people suffer at end of life because we are unable to adequately deal with the ignorance and grief and fear of the family members.

You didn't say what the patient felt about all of this. My guess was that the patient was too ill to speak for himself and is allowing his wife to make all decisions. Sounds like the "marketer" sold them on hospice without discussing the philosophy of hospice...that is wrong in my estimation.

It is hard to know, sometimes, what you are walking into when you go out for an admission. We become accustomed to walking into a home and generating a family/pt assessment in the first 90 secs. I often make it a point to spend the first several minutes of my initial/admission visit speaking directly with the patient, with the DPOA present. At that time I tell them what I know (ER visits, terminal dx, doctor recommendations, etc) and ask them what they feel, and want, and fear. Of course, this is a mute point if the pt is unresponsive, but even then, I speak to them first, telling the unresponsive pt why I am there....which is "too help you be more comfortable until this is over". This practice has helped me get past some of the hurdles that you faced...BUT NOT ALWAYS. Bottom line is that sometimes the needs of the primary caregiver are going to outshine the needs of the dying patient!

I agree with you, I would have refused the IV fluids. I personally do not know a nurse in a visiting capacity that would start or continue IV fluids when the patient is obviously too wet already. Sounds like he needs aldactone not fluids. Hopefully you left a good resource with them outlining the process of death...

Keep your chin up...you help far more people than not, and what you do is valuable. My guess is you will see this man again when he is actively dying...unless his wife takes him to the ER so that he can die there.

[SuesquatchRN, BSN, RN]

I see something similar all the time in LTC. Family makes the resident comfort care and then the next thing you know that kids are upset she isn't eating, want to know why we d/ced the Lasix (um, she isn't drining, either) and start interfering with all sorts of things that we have done to make the person comfortable. Not everything can be cured.

Hang in there.

[Flutteryby]

Does being straight forward help? When families are like this, is it ok to tell them....They are dying, do you understand that? (yes/no) and then begin to educate them based on their answer. I found myself questioning our hospice nurse as to why this or that was happening. I think I was asking too many questions and I was thinking my husband was going to live in hospice for several months not weeks. Our nurse held my hand and said, honey he's dying, that is why these things are happening. Then we had a conversation about what my expectations were, and she corrected me. That conversation is what changed everything for us.

[AtlantaRN, RN]

Wife verbalizes patient is sick, but doesn't want us to say the word "hospice." that was a red flag (i've had families in the past ask me to take off my badge because it says "hospice'). husband comatose. wife verbalized it was the "chemo" that made him have back pain--couldn't be the bone mets. Wife said hospice is "jumping the gun". she brought out all his stuff from when he had his chemo and a certificate when he got his last chemo. she verbalized he is sick, but he is not dying today. I had her visualize his color, listening to his lungs without a stethescope--he had expiratory wet gurguling. had her look at ankles n w hx chf n x2 mi's...fluid is backing up. she wouldnt accept a hospital bed either so at least airway would b more open n allow lungs to expand-with him flat on a regular bed, his rib cage just collapsed on itself-especially when lying on his side. Wifes rationalization for fluids was that it "worked before", when he was dehydrated, it would bump him up and he could walk and participate---but he was clearly past the point of no return.....but she wasn't hearing it. The one son understood, but he isn't poa. Just hope he passes peacefully in his sleep, and not in the er on a hard gurney.

[tewdles, RN]

AAAhhhhh Atlanta...these cases are so sad and heartbreaking...aren't they? I think we all have families who don't want us to use the word hospice. My employer allows us to make that call ourself, of course, and I typically don't agree or go along. I am pretty direct with the family and if they want me to lie to a perfectly alert and oriented person I will request a change of case. I don't mind not mentioning hospice to the confused patient who may become agitated ... and I don't mind not making a big deal out of "you're in hospice now dude" but I am not going to deceive people at the end of their life. My conscience cannot take that. If families are seriously in denial and it is affecting our ability to have a meaningful and effective POC I invite them to the next IDT. If they will not come I plan a family meeting with multiple disciplines in the home ASAP. I will not give IV fluids to someone who is already fluid overloaded, that is just wrong and I don't care what the wife says. Thank you for standing your ground as you advocated for safety and comfort for this poor guy.

I actually stood in a kitchen one day with a son and mother speaking about the father/spouse in the other room... the guy was transitioning, probably had fewer than 5-6 days left (don't remember exactly). One of them said something similar about not "dying today". I paused for a moment and then told them that at that very moment "Joe" was in the process of dying. That the 3 of us were actually in the process of both living and dying, although we were much more engaged in the living part and only dying passively as we age etc...but that "Joe" was now only passively living and more actively engaged in the process of dying. This worked for them and I continue to keep it in my bag of ideas for families who are struggling with this journey and process.

I hope too that your guy gets to have a comfortable and dignified death. But I am reminded that sometimes people hold on to things tightly. I reminds me of the time my mom bought an Easter chick for my then young daughter. She loved that little chick so much I doubt it lived an hour...just couldn't get her to put it down.

[tencat]

Ah yes....Denial.....love it. If you think it will help, be straight up with the wife. Although it sounds like the wife might toss you out on your ear if you mention death. I would go about it by trying to get the son to approach it with mom, since he gets it. It is sad, and it happens so often with hospice.

[AtlantaRN, RN]

found out this morning that fam went with another hospice that will do the fluids. marketer for my company is *issed....said I should have notified branch manager.....i notified referring md, med director, my manager of clinical practice, dme, and pharmacist on call. i refuse to do a patient harm to make wife happy. wrong is wrong. I know marketer is all about numbers, and if we don't have patients, we don't have jobs....but i'm not going to harm a patient to pacify a wife. my manager and branch mgr stand behind me.....

atl rn

[leslie :-D]

found out this morning that fam went with another hospice that will do the fluids. marketer for my company is *issed....said I should have notified branch manager.....i notified referring md, med director, my manager of clinical practice, dme, and pharmacist on call. i refuse to do a patient harm to make wife happy. wrong is wrong. I know marketer is all about numbers, and if we don't have patients, we don't have jobs....but i'm not going to harm a patient to pacify a wife. my manager and branch mgr stand behind me.....

atl rn

all ethical people, would stand behind you, atlanta.

that other hospice shouldn't even be open for business.

leslie

[tewdles, RN]

The other hospice will likely also have conflicts with the nurses and the hydration issue. Truth is, if it had been appropriate your hospice would have provided this intervention as well. The family will likely encounter the same situation with the new hospice...nurses who assess the situation and then contradict what marketing told them based upon patient needs. That said, there are some who will provide this regardless of what impact it will have on the patient.

Kudos to you for standing up for what is right and ethical. Kudos to your management for supporting you even when it cost the agency some $$.

[rngolfer53]

Does being straight forward help? When families are like this, is it ok to tell them....They are dying, do you understand that? (yes/no) and then begin to educate them based on their answer. I found myself questioning our hospice nurse as to why this or that was happening. I think I was asking too many questions and I was thinking my husband was going to live in hospice for several months not weeks. Our nurse held my hand and said, honey he's dying, that is why these things are happening. Then we had a conversation about what my expectations were, and she corrected me. That conversation is what changed everything for us.

emphasis added

I think I've had one family that asked too many questions. Much more often it's too few. Questions allow a nurse to assess where the Pt and family are r/t knowledge, emotional state, degree of realism, etc. That means I can better gauge what they're going to need to provide care, keep Pt comfortable and able to fulfill the goals he/she has.

Keep on asking. My .

[Hal_Dol]

Hello All:

Just had a case of Alzheimer's patient whose wife insisted he liked the TV on all night. Patient had been awake about 36 hours---mumbling/ babbling (no specific words)/lip smacking. I had turned the TV off to see if lowering the stimuli in his room would help. Wife woke up for her "nightly check" of patient and turned TV back on. No difference either way; Ativan didn't help either.

Lesson:

I'm updating MY living will to specifically say the TV must be off. My fear is that the attending hospice worker will have the TV on and I'll die at 4:10 AM.....with the last thing I'll hear being an infomercial for how to make money in real estate!

Tewdles wrote in earlier post, "I hope too that your guy gets to have a

comfortable and dignified death."