Really Tired of Fighting Hospice Ignorance......

[tencat]

Hi all. I'm feeling SOOOO discouraged right now, and I hope some non-hospice folks are also looking at this thread because I am beyond knowing how to address hospice issues with non-hospice clinical people. I wouldn't dream of telling an ICU nurse, or a Cardiac nurse, or a PACU nurse how to do his/her job, so why do non-hospice clinical folks think they can tell me how to do mine????? Twice in a week I've been dealing with several frustrating issues: We have one patient with a g-tube that leaks around the site, and we've been through four different feeding solutions with the same results: Massive amounts of diarrhea and patient still looks like a breathing skeleton. Eating produces horrible stomach pain for patient as well. Pt. kept asking to have tube removed, a surgeon agreed to do it, then at literally the very last second before surgery, asked the patient, "Are you sure you want to starve to death? Because that's what will happen if we get rid of it." So patient panicked and said no. Sigh. THEN the surgeon's nurse proceeds to call me and chew me out because we're starving the patient to death, and isn't hospice about comfort? What kind of nurse ARE you, she asks me.....

Today I get another call from a nurse because our physician feels we shouldn't change a foley catheter on a patient who has prostate cancer and a propensity to retain urine due to blockage issues. He's worried we can't get it back in (as am I) and if that happens we'll have to send the non-ambulatory patient to the ER. This nurse chews me out for being a bad nurse because every nurse knows you change a catheter every four weeks, and what kind of nurse am I that I don't do that for the comfort of the patient?

I'm so tired. And it's got me questioning myself. Yes, indeed, what kind of a nurse am I? Sigh.

Thanks for listening.

[caliotter3]

I'm just now changing over into hospice. Nice to see what I have to look forward to. Not much different than regular home health. Can't please everybody.

[Annie57RN,OCN]

There are many people out there who are very ignorant about hospice and refuse to learn about palliative care. It's a hard road, for sure, but one that I would not give up for anything. The personal gain that I receive each and every time I see a patient die with all their needs met and wishes accomplished I am proud. For those ignorant people, I offer information and the opportunity to learn about another way and the opportunity for patient choice. Don't get frustrated, walk away and know that what you are doing is humbleing, spiritually fulfilling and my gift to others. Those who judge others and believe they know best for another, really know nothing.

[Ruby Vee, BSN]

i'm an icu nurse and wouldn't dream of telling you how to do your job. i'm just ever so grateful for the awesome hospice nurses who made my father's last hours so much more comfortable for him (and for my mother) than they would have been had he died in my icu. thank you!

[Hospicetex]

Hope today is a better day for you. It can be very frustrating at times and you sound like a great nurse doing exactly what the patient needs you to do.

[traumaRUs, MSN, APRN]

Don't you think that even as nurses, we non-hospice nurses feel somehow that death should be avoided?

My nursing background is mostly ER where we "helped" everyone to include coding a little 90'something y/o lady who had a trach/G-tube and was so contracted that we literally propped her up on pillows to do compressions! Ugh is all I can say.

I now work as an APN with dialysis pts who frequently die, frequently decide to withdraw and currently have several on hospice that still dialyze.

JMHO

[tencat]

I'm sure a lot of it does have to do with the fact that most of medicine is focused on treating and curing, and death is seen as the enemy to fight. It is hard to wrap your head around it at first. I understand that as I had a hard time adjusting my paradigm too, at first. What drives me NUTS, though, is when medical people REFUSE to understand what we do and why we do it. I understand the ignorance of a family, or a patient, but for heaven sakes, a medical person should at least have an open mind and be willing to try to understand something he/she doesn't know a lot about. I feel surrounded by a medical community that thinks we kill people in hospice.

[leslie :-D]

What drives me NUTS, though, is when medical people REFUSE to understand what we do and why we do it. I understand the ignorance of a family, or a patient, but for heaven sakes, a medical person should at least have an open mind and be willing to try to understand something he/she doesn't know a lot about. I feel surrounded by a medical community that thinks we kill people in hospice.

actually, it's the medical people, mainly doctors, who can challenge us more than anyone else.

the difference in hospice, is we KNOW that not feeding/hydrating, is indeed, a comfort measure...

because we KNOW they're dying.

often these folks (who insist on doing everything) end up causing much more distress to the DYING pt.

stand tall and proud, tencat.

your DYING pt will thank you.

(yes, it is immensely frustrating to deal with this.)

leslie

[joyfulljen]

What kind of nurse are you? You sound like one who cares deeply about the pt and wants to see real comfort provided for those you care for even if others cannot see it that way. I also get frustrated about the whole 'starve to death' drama. I wish we could do better educating the public and some of the medical community about changes that occur as a body is dying, where the body's need for food decreases.

Keep up the great work and don't be discouraged! Consider these challenges as opportunites to educate! :)

[tewdles, RN]

I am fortunate to work in a hospice that routinely has students of all disciplines educating with our staff. We benefit in a couple ways from having U of M, EMU, MSU, etc students of medicine, nursing, and social work rotating into our clinical areas on a regular basis. First it keeps us on our toes. Nobody wants to look bad professionally to a student. Second the graduates are very hospice friendly and generally better informed...many of them stick around the general area so that helps our referral rates.

But yeah, dealing with people who are almost intentionally ignorant about hospice is exhausting. Have a nice glass of cabernet, put on some music that makes you smile and pet your ____ (I have a nice rottie that is a great listener).

Cuz in the end, you know why you do what you do...and it isn't to make some ICU nurse happy. Just sayin...

[Hospice Nurse LPN, BSN, RN]

We were discussing this same thing today @ work. Seems like whenever I'm out in public in my scrubs (w/company name) lay people will ask how I like hospice and tell me how hospice took such good care of their mother/father/sister, etc. Medical people say, "oh how sad to work for hospice." I enjoy my job and can't imagine myself doing anything else. Sometimes I'm amazed that they actually pay me for doing something I love so much.

I have a pt in a nsg home who has a PEG that needed to be replaced. She had been bolus fed previously and the facility asked to have the bolus changed to pump. She wasn't tolerating the bolus feedings and they were holding the feeding once or twice/day. Our NP ordered the feeding to be given @ 50cc/hr 6p to 6a and off from 6a to 6p. The dietician @ the facility stated she wasn't getting enough feeding and changed the order to 65cc continuous w/ 300cc H2O Q shift. Lung sounds were completely diminished. (too much feeding?) Two days later, the pt pulled the new PEG out and she was transferred back to the hospital. She was inpatient for four days to adjust the feeding rate. D/C with feeding @ 45cc/hr. Dietician asked me today if we just planning to just starve the woman. *biting tongue* She stated she was going to change the feeding back to 65cc/hr w/ the 300cc H2O Q shift. I called the NP to let her know-she said she'll go to the nsg home in the morning. It's frustrating to try and explain to another professional that we aren't starving the pt--they aren't tolerating the food and it makes them uncomfortable. I believe that's why the pt pulled the PEG out. She's non verbal and her belly was probably hurting.

Well, enough ranting. OP--you sound like the kind of nurse I'd like to take care of me.

[AtlantaRN, RN]

we get it from both sides don't we?? critical care, icu, med/surg folks that just don't "get it"...we can't MAKE them tolerate the tube feedings (their stomachs aren't processing the food.....hence vomiting or leaking around the peg).

right now we have a patient who is cardiac but also downs syndrome-family insists on keeping a foley (a #12), pt on 8mg coumadin AND plavix....so when foley replaced, what happens? blood in the bag x 2 days....now urine is darker,but no frank blood....family member calls on call last weekend to say foley is stopped up-I go, it flushes fine,(foley tube was crimped under the covers--famiily member says "oh i've straighted that tube 100 times today" i really don't believe her because she is 500+ pounds and have never seen her standing) one fleck of blood stuck inside clear bsb tube....family member tells me "if this doesn't clear up by next week, i'm calling 911 and going to hospital.....which is her right. We have him for cardiac. there is no clinical reason for him to have the foley (we just need to know he is urinating, (we aren't in the hospital with core measures to prove we are diuresing him for reimbursement). SO-said family member texts primary nurse this morning says "we don't want you as a nurse anymore..." well, they have been through 2 nurses, you have 3 left to choose from.......frankly, this is a ridiculous situation and i can guarantee this patient won't be gone in 6 months, this patient should NEVER have been admitted imho.

SO-we do our best to educate and try to let it go....i'm truly frustrated over this one...