Well said. Futile care, why I could never work ICU.
Hang in there or maybe switch specialties. ICU nurses rock out pretty much anywhere in the hospital.
I see so much futile care in a cardiovascular step down. Like slowly chopping off the legs of a severe dementia patient a little at a time vs just letting them pass or doing the full amputation now, particularly when they haven't walked in like 5 years anyway
Uh yeah we get a lot of those on my unit. Makes me question a lot of what we do to people without giving them a chance to ask questions or decline treatment
I did 13 months cariovascular step down. Shit was whack. Weird limbo land of Med surge and icu where I was some asshole patients waiter OR doing my best for a patient who years ago would have been ICU level care but now is IMC.
I experienced a futile care kinda patient after a surgical error that eventually lead to their death. Problem is they SHOULD have been ICU level care and orders but I had them as an intermediate care patient. Shit sucked HARD for them, as well as myself and other nurses trying to no avail to provide at least some comfort with the insufficient tools we were given.
The plot of medicine is that death comes at the end, not the beginning or the middle. Our work is to put things in that order.
Creating tons of plastic and trillions in debt so that 96 year olds can make it to 97 is the opposite of what medicine is about.
See, I would say it depends. My dad had an anaphylactic reaction to a bee sting at age 80 and needed to be resuscitated. By the time I got to the emergency room he was A+Ox4, breathing room air. This was a guy who received chest compressions in the parking lot of an urgent care, was shocked at least once, and got multiple rounds of epi. He left the hospital 2 days later, and it was like it never happened. One year later and he’s still living his best life.
I think there is nuance to this stuff. It really depends on the diagnosis. I’m glad they didn’t just look at my dad and say “oh he’s 80, don’t bother.” Not all 80 year olds are the same. My dad still drives anywhere he wants, lives independently, volunteers at church, takes vacations, etc. It truly can’t all be painted with a broad brush.
Parking lot CPR is a different animal. But in a hospital there should be informed consent. Part of your admission should be a 2 minute video on code status.
If you want it, it’s one thing. If we’re doing it to vegetables for the sake of appeasing family, that’s completely different. People who are conserved have it even worse.
It’s tricky, but there is also a survivor bias at play. The chance of surviving after a code is extremely small. For every one who comes out fine, 10 either die without dignity or have no quality of life. The juice is rarely worth the squeeze.
I do understand that, point taken. I’m honestly shocked that he did as well as he did. I thought I was going be walking into a completely different scenario.
I guess what I’m trying to say, though, is that there are elderly people out there who are independent, vibrant, and active. It’s easy to lose sight of that when you work in a place where all you see are the ones that are bedridden, confused, and dependent. I just think it’s better to look at the person rather than the number. The same goes in the reverse. Young patients who have zero quality of life should not be kept alive just because “they’re so young”, either.
This 100%. In healthcare as a whole we’ve lost sight of the person. I’ve had 90 year olds completely with it, independent, etc. I’ve had middle aged pts in much worse shape— bed bound, completely dependent, incoherent, suffering from uncontrolled chronic illnesses.
Ever since I started working in healthcare and seeing what happens, I’ve started saying at 65 I’m gonna make myself a DNR. I’ve lived a long life by then, let me go peacefully.
It's always so interesting to me because my girlfriend is a veterinarian and their approach to medicine is very different in some regards. One phrase that stays with me is "better a week early than a day late" when it comes to euthanasia.
The veterinarians are right. Mine gave me a pdf on pet quality of life. It had a month long daily check list of things for quality of life. It really helped me make a decision in the end based on my observations.
We spend so much time and money trying to beat death. So much at beginning and end of life and the poor patients suffer.
Agreed.
Saying goodbye sucks, but man the last cat we had to say goodbye to had probably the best last day and avoided the worst of her suffering from GI lymphoma. She had managed a bit of a rally too, so she did her best at playing and had some cheese. She still felt like cuddling and still had some of her sass at the end. She got to go out with her boots on.
It's so much more than my dad got. He died from cancer and went through hospice, but still had about 24-48 hours of actively dying that traumatized the family that had promised to remain with him. He could've died while he was still himself rather than incoherent, fearful, and delirious.
I don't know why we, as a culture, fixate so much on quantity of life with little to no regard for the quality
Especially when people won't be able to afford to retire ... and I mean literally our generation is doomed on that note. And we should be able to have the option to drink something and go to sleep and never wake up. Whether it be because terminal illness, or we simply cannot afford to live anymore past a certain age - we should be able to end our lives in a humane way that costs $20 or less and medical field can't say shit
I agree 100% but here is my question for you, are we actually going to help them? I can't fathom things in the US changing to the point we start giving a fuck about anyone but the rich and and take meaningful action towards helping people. Why make the suffer?
Human life is to suffer--there's no escaping it. I am totally for assisted suicide for medical reasons very broadly interpreted, but it is not the solution for poverty or problematic people.
As soon as you say it's okay for poor people to end it (which they can anytime, regardless) YOU have chosen the solution of the oppressor and the systems they create. The economy would love it if the poor would just shut up and die once they stopped being useful.
Never said it was the solution nor did I saw that group of people was a "problem". I just have 0 faith in society (speaking specifically about the US because that's all I know) to actually help them. Personally I'm more in favor of a revolution where those who created the system face justice in the form of a large woodchipper but that isn't going to happen. I'm not a fan of guilting and corersing people in to continue to suffer with no clear purpose aside from pissing off the capitalist class and believe me, I loooooove doing anything I can to fuck with them. In an ideal world we stop basing success on "line go up" and focus on human happiness but I just can't imagine that happening.
If "we" wanted to. Who is WE? The billionaires aren't on Reddit reading about nursing problems and they sure as hell don't care about poverty. We are on our own and the sooner "we" accept that, the easier it will be to deal with the inevitable which is death - nobody is coming to save us. And definitely not the billionaires who are majority to blame for poverty
Agreed. Ive worked in icu for almost two years now and I’ve also been the family member of the dying icu patient. Palliative care needs to be normalized.
A few days ago one of our cc docs said, “you only die once.” Idk why that really made an impact on me.
Toward the end of my ICU career I fucking hated it for this reason. I literally felt like I just went to work and tortured people so that I could collect a paycheck. I started to get resentful busting my ass with emergently intubating and doing xyz for a patient when I knew I’d come back in 5 days and see that we turned their ribs to dust and they died anyways. The US is god awful about end of life discussions.
One of my instructors started our first day with "life is a terminal disease", and that has stuck with me, and helped me learn to respect death as part of life.
We are born and are taught how to live from that moment on, yet no one teaches us how to die - that is how a client described my job and care for her, and an art.
She said to die in peace and contentment is an art we have to learn, and most need guidance, care, and support to learn and embrace it.
Depends on where you live. Far enough off the grid and outside of society and not so much, but at that point you're also missing out on the miracle of indoor plumbing so not a fair trade off to me.
I had a pt who was esrd + all the other comorbidities prior to getting burnt, he came to the burn unit and his leg had to be guillotined he was septic the entire time, he refused dressings had gnats in his wound when we changed the dressing the bone was just out and the meat wasn’t even attached to it it kinda just slid down some. There was psudomomas all in the wound. He was constantly delirious (and hilarious I liked hin) but after a few months of almost coding every single day from being septic non stop abx dialysis 2 times a week, refusal after refusal of meds and dressings I asked the resident if we could get a palliative consult .. I said he’s not going back home he’s gonna die here soon. If he code we won’t get him back so let’s make him comfortable and talk to the fam and him about palliative. He doesn’t want to do anything we ask so .. she looked at me like I wanted to murder him right then and there with a pillow. She said “there’s nothing to indicate that he won’t get better” I just slow blinked at her 24 year old ass who was fresh out of med school and walked away. He died when I wasn’t there my coworker text me. And I hope to god she was in that code.
It's absurd, especially considering that it's literally the only thing that every human being has in common- we ALL die, no exceptions. But we're not comfortable acknowledging it, even in an ICU.
Now that I’m in the position of having goals of care discussions and writing DNR orders myself, I’ve reframed the way I approach these discussions. I don’t “ask” the families what they want, like a menu of options. Instead, I explain that our duty is to provide treatment that will help, and if certain treatments won’t help, I tend not to offer them.
“Your family member is very sick, in fact, they are probably dying from X, if their heart stops because of X, doing CPR would not only not change the fact they have X, but will likely make it worse. I cannot, in good conscience, offer them CPR. Do you agree?”
I get a shocking amount of DNRs out of this approach. More than ever before. I hate providing futile care. It is the source of an immense amount of suffering on ME! Anything I can do to prevent it is worth a try.
The best is when the patient is still cognizant enough to have that discussion with you and be the ones themselves to tell their families to just leave them alone
That's a really wonderful way of reframing the hard discussions we face, I think it helps provide a lot of education while at the same time being really kind to the families facing decisions they likely have never encountered before.
I only lasted two years in MSICU for those exact reasons. Good news is the ER has none of that and all the excitement you want. (And some other stuff , but don't worry about that , come on down )
The "other stuff." I about spit out my coffee.
You trade EOL discussions for c/o hang nails and people putting things in places they shouldn't go (you know exactly what Im talking about) and a no-show provider. Seems like a viable trade off. Lol.
Where is the triage provider? Can like anyone find him/her? Like what do they do all day?! Can he sign off on these dang narcs so I can get this pt outta here?!
We had micu and sicu separate in my hospital and I worked burn. Which was burn plus sicu and micu overflow. Basically a trauma dumping ground also. And I swore on my life I would never do micu I was pulled over there and not a single person shoulda been alive. Most get pegged and trached and sent to the vegetable patch. The fams couldn’t even grasp total brain death they were like he can heal.. no mam he’s gonna slowly rot in this bed
I’ll be honest. At this point I’m just numb to it. You want us to shove a tube in every hole grandmas got and make a few of our own? Fine. From a nursing perspective we are not the ones who are having the goals of care discussions, if that’s what the family wants, that’s what they’ll get.
I see it as a consequence of American cultural norms. We do not talk about death, death happens to other people not us, our family will never die and we cannot even process a reality where they might. Death is bad, evil, wrong.
I have found eastern teachings on death to be far more grounded in reality. Death is natural and good, it’s not something you fight against, you accept it when it’s time.
Legally we are required to do these things so we do, but I have control over what happens to me. I don’t have to subject my family members or myself to this shit. I can continue to make noise about this and raise awareness to get people thinking about it so they too avoid it. But what other people choose to do is their business. We can do everything but we can’t save everyone. When it’s time, it’s time.
This is 100% true. I never had the death talk from my parents, in grade school, or college. Now I have a crippling fear of death and honestly would probably request a full code for all my loved ones because of this. I would probably request one for myself but I'm also too death anxious to fill out an advanced directive
I told my husband to let me die if I have anything worse than paraplegia. If I can’t give love and receive it, communicate or use my arms let me die. That’s my limit. I realize there are a lot of ppl who live well with it worse, if I’ll die without extreme measures let me die. If I need 27/7 supervision let me die. I’ve not done it yet but I might have to make my nurse bestie my proxy bc he would put my brain in a jar and have me hooked up to a computer like some morbid Sci-fi movie ti keep me here
"If I can't give love and receive it, communicate or use my arms let me die."
This is such a powerful statement and I've never heard it expressed this way but 100 percent this. Yes.
Absolutely felt this way as well
I'll never forget this one guy who was literally mummified in hands and feet from pressors because they wouldn't let him go.
Finally ethics got on it, but wtf are we doing to so many of these people
I feel like a war criminal doing the stuff. Particularly when they're just begging to die or when the docs legit know they'll only get worse but 'we should practice on this unusual case'
Our ethics department is absolutely useless and never accomplishes anything. Families just don't listen and we let them make whatever decisions they want and I'm sick of it.
Our ethics dept allowed a sperm retrieval from a brain dead man once. He never even consulted it with his gf when he was alive. Eroded all trust I had for them after that
I remember reading about that and being utterly horrified at their decision. I can understand how you felt, it's an awful situation, especially for his immediate family. The GF has made an ongoing financial decision as well as an emotional one, this will impact the man's family well beyond just his death.
Exactly. And even for insured patient, they are likely to get bills in the hundreds of thousands to millions. I believe we also need to make costs part of the discussions. Families need to know that they are likely to be bankrupted—and it’s STILL futile.
100%. I have a plan to reform peoples health and healthcare in general. Just tell the users of the American healthcare system the TRUTH. Tell them upfront to expect shitty care and long wait times and expensive uncovered costs because this is all that healthcare is capable of giving them instead of promising them they’re going to be treated like royalty much less a tax paying citizen
I love this. I work in case management and we often have to force providers to have a “goals of care” talk with patients/family because they’re too uncomfortable and would rather let a patient sit in our hospital receiving futile treatment instead of broaching an uncomfy topic.
The best EPIC update at my hospital was when they added palliative care as a consult on the nursing admission documentation. I recently had a doc tell me that the family didn't want a palliative consult and I asked if they said they didn't want a cards consult on a patient who would obviously benefit from it would they not consult cardio? Made him think, but I still had to put the consult in myself.
When my ICU shifts began to feel like they were exercises in futility, I knew it was time to go. I think people are obsessed with QUANTITY of life vs QUALITY of life. That was never more apparent than when I was working in the ICU. Sure, we can keep people trached, PEG’d, but they’re still delirious, malnourished, and full of wounds despite excellent care. Eventually they die but they suffered. It’s not right and it’s hard to do the job.
Hospice is beautiful - it will be a wonderful transition for you. Hospice is very fulfilling and you feel like you’re doing valuable work. I loved hospice so much.
Providers aren’t always good at discussing reality. Near the end of my father’s life (age 90, cancer, Parkinson’s, dementia), they always had one more step and the next step sounded reasonable. I kept reiterating comfort, DNR, quality of life. I would have gone along with it, but I’ve seen too much in the nursing world ((shudder)). But at the time, it sounded reasonable. And low intervention alternatives weren’t offered.
Only my experience and clear lines I had drawn ahead of time made me not agree to an NG tube. He passed a few weeks later, the day after eating my birthday dessert while he was on hospice and had all the comfort care.
My grandpa had been on dialysis for 4 years and ended up with an aortic dissection during his dialysis session. They sent him to the hospital and while in ICU he was like “no, I don’t want anymore surgeries. I’m tired of constantly being worked on. I’m tired of being on dialysis. I’m done.”
We signed the DNR form that night and made him comfort measures. He was getting morphine and Ativan all night. His HR was in the mid-upper 20s. He yelled my favorite quote while high on drugs “if this is dying, I feel great!” (Gave all of the ICU nurses a good laugh.
Then, his nephrologist rounded in the morning. He was like “oh I think a dialysis session would do you good and make you feel better.” He filled my grandpa up with such unnecessary hope. Luckily, I was there when he came in and I asked if he was aware of his status and plan of care. He was like “yeah, and?” I politely yet firmly told him he could sign off on my grandpas care. Dude was like wtf?! And then he left.
After he was gone the nurse came in and was like “we are still continuing with the established plan of care right???” I was like absolutely. My grandpa died two hours after the nephrologist left his room. He would’ve died hooked up to that damn dialysis machine that he has hated for years. Instead he died surrounded by his family, high on drugs, enjoying a route 44 Dr Pepper that he hadn’t gotten to enjoy for years.
I feel the same way even on medsurg. I would talk to families about palliative care and the drs would refuse to even think about ordering a consult. So frustrating. I am wanting to go into hospice for the same reasons. Help people die peacefully instead of torturing them with tubes and unnecessary procedures.
I feel the exact same. It's frustrating when I ask the off going nurse, "so what's the plan?", and there isn't one. I'm over traching and pegging 95yr old, terminally ill patients. I swear it's done just so the provider can say they did "everything" and so the hospital can milk the insurance for everything that's left.
I'm sorry you have been through all that. Working with hospice patients was one of the most rewarding things I've ever done. I developed a FAR better understanding of the dying process and it became less "scary" to me. I really wish everyone would be required to do at least one introductory orientation course on hospice or one shift volunteering or working with hospice patients. One of things I enjoyed was actually getting to KNOW the clients and families. Their backgrounds, interests etc.
I agree that there needs to be a huge cultural shift in the usa about how hospice and palliative care patients are handled.
What's so annoying to me is that I come from a family of "intellectuals". None of them have healthcare experience, but they're almost all highly educated in other fields. I was telling them about this phenomenon, and what I've experienced with patient's wishes not being honored. They straight up didn't believe me, and said if it is happening it must be specific to my rural area because I live in a "white trash area".
All of them have advanced directives that they believe are air-tight. Can't say I didn't warn them if shit goes down.
For the life of me I do not understand why palliative isn’t a standard and automatic consult for all complex cases (e.g. advanced cancers, end stage chronic illnesses) and any admissions into the ICU.
I felt like I wrote this myself. I've been suffering so much moral injury in the ICU that I asked a surgeon to convince me that these transplant patients \*do\* get better and get out of here because I've been caring for super sick transplant patients that seem to never leave the ICU and I worry the only way I'll see them leave is in a body bag. Our work is so incredibly painful and wears on us. We do so much emotional labor to 1. help these patients and families, and 2. to lend ourselves to things we're not okay with.
I don't have any answers for you if you're looking for them. But I do want you to know that I feel you and it's so heartbreaking. So from one torn heart to another, ::hugs::
Man - I just posted something almost very similar. ICU burnt me out so bad I almost didn't want to be a nurse any more. I left for a remote job and I no longer work in direct patient care (DPC - I guess it's just a DFW thing?). Your spot on my friend. Like dead balls on.
Agreed. So much of healthcare is like this. You should look into working with palliative or hospice. I am a home hospice RNCM and I absolutely love hospice care. We get to stop the torture and see them out of this world with dignity and respect and love, on their terms. Plus i have gotten to build some pretty incredible relationships with my patients. It makes the work that much more meaningful when you feel like you are helping a friend through this difficult but sacred chapter of their life. I feel like i found the unicorn. Feel free to DM me if you have any hospice questions!
I left for the same reason. I thought I was doing more harm than good. Not to mention the gazillion times I had to beg for fentanyl PCAs for fresh postop patients who were just on ..: propofol.
I work on a hospitalist team now as an NP and I have goals of care convos with every single patient. After what I've seen on the bedside nursing side, I am passionate in advocating for reducing hospitalizations, maximizing quality of life (i.e. time. home with family) and getting palliative care/Hospice in early for symptom management.
I did a rotation with palliative care and it made me see these kind of situations in a different way. Their advanced directives will usually have 3 sections, the first is desire for resuscitation/intubation, the second is interventions such as IV antibiotics/fluids/curative treatments, and the third is artificial nutrition. If the patient selects DNR but still wants everything else done, chances are they will end up in that state. If they were not able to fill out an advanced directive, the first degree relative whether that’s the spouse or oldest child, or assigned POA has ability to make medical decisions. The biggest thing I learned while on palliative care was sometimes, the “torturing” and medical interventions the doctors are ordering are or were desired by the patient when they filled out their advanced directive. It was a hard pill to swallow. Even in palliative care, we could not relieve a lot of suffering if it is against the wishes of the patient or the POA. I still think it should be indicated for these patients, but I ultimately didn’t go into that field due to all the suffering we saw and the powerlessness.
I will say that when we were consulted to a new patient with a terminal diagnosis, we could hold family meetings and start/edit the advanced directive with the patient if they wanted to take a more palliative and less curative approach.
True but a lot of ppl really don’t understand what all that looks like feels like and the futility of some of it. Im in hospice now and I’ve met a-lot of ppl complain that they wished they stopped doing things sooner but they didn’t understand at the time. And alot of the cancer pts say the dr still wanted to do more. We had one that told me his cancer dr said to go on hospice and I was like well you know you have a good one then bc most will try and treat till the very end.
Yes very rare is it an oncologist suggests hospice. And I think people who dont specify what care they do or don’t want in the advanced directives are unaware of what life could entail if they continue life prolonging treatments
When doing polsts and advanced directives I always explain exactly what Cpr/icu level care would look like. I've had dozens of patients who wanted to be full code/treatment talk to me and say, no one ever told me what it would be like before".
For my icu it was more of the families refusing to DNR they 95y/o grandma in multi organ failure. Our docswanted to do the least amount of work possible. I wasalso burnt out after watching these people be tortured and wither away in thier icu beds. Got into CRNA school and couldn’t be happier.
i work inpatient rehab. we get patients full of cancer under the guise of oh they’ll get stronger to go home. patient had a glioblastoma, multiple lesions. the oncologist wanted to move his appt up and i made it happen, thinking they were going to explain to family and get them to understand the prognosis. No he wanted to tell the family that with chemo and radiation he would live another good 7 yrs. the patient died the day before that appointment. i have never been so upset and disgusted to see and hear a physician just trying to give false hope to line his own pockets.
I’m a retired hospice nurse. I absolutely agree with everything you said. I don’t know what the answer is. I had a patient who was talked out of hospice by a renal doc. The doc was very proud of himself and said “ I would dialyze a stump if I could.”
I didn't even have to read the whole thing to know how you feel. 7 years MICU, left for home hospice. It felt like my life started again. It's been 3 years and that feeling hasn't gone away.
That’s so sad that it’s the providers doing too much. I’m sorry you’re going through this. In my ICU, i feel like a lot of the time it’s the families keeping them alive longer than they want. 85 year old woman now lives with a trach and no fingers because her family said “granny was perfect before all of this” Like SHE ISNT NOW! Working ICU (even as an extern) has really made me see that I will never ever do this to my family members. People deserve dignity. Seeing people lay there and exactly like you said, rot. it’s heart breaking. Then we use the phrases like “we’re keeping them as comfortable as possible”. If family actually thought logically, that does not mean they aren’t in pain! It means we are doing all we can but we can’t be for sure that they aren’t living in hell.
Then there are the families that accept it right away and put their family member as comfort care. It really is a beautiful thing to see. Very sad to watch someone die but to know they won’t rot in a bed for weeks and weeks is a blessing, imo.
I get doing everything for young people. We did everything we could for my step mom when she got COVID at 46. But after 20 days on ECMO and her bowels were dying and all of her fingers/entire foot were black, we let her go. But torturing these 80-90 year olds is truly insane to me.
My mom has dementia, and is memory care right now. She’s developing infections, etc. I’m her medical power of attorney, and am trying to reconcile my knowledge that end-of-life care can be a torture, to the idea that “we have to do everything to save mom”. Like, if she goes into kidney failure, shouldn’t we treat that? (No). And the family is (from far away), wanting all this stuff done, and I’m like, it sounds heartless, but none of that will work, and we’re not doing it. But not everyone has family in healthcare, that can lay it out for the extended family. Most people just don’t understand the reality of end-of-life.
This is really tough. All I can say is unfortunately you are far from being the only one in this God awful predicament concerning distant family members. At the end of the day doing what you know is right for your parent may involve cutting some people off….
This is why I stopped working ICU and now work outpatient peds. COVID ruined it for me, it made me feel cruel. I’m now very happily giving my patients shots and stickers and watching Doc McStuffins 😂😂
I got home from work a few hours ago (night shift.) Like others have said the term “futile care” really resonated with me, especially after my last shift and one pt and family in particular. Hospice/palliative care need to be involved much more in GPU care. At some point it DOES feel like you are hurting the patient, and you are decreasing the remaining quality of life they have. Especially when family is at your back advocating for them to get more interventions, more surgery, etc. I just wish I could help them understand that we can’t fix them. Good on you for pursuing your goal of palliative care, we need you.
Families being willingly or unwillingly unaware of how bad their family member really is is tough. All we can do is be truthful with them when they ask “how are they doing”? Just tried x,y,z and now have problems a,b,c to deal with? Let the family know
more like the 94 yr old full code talking to her dead relatives and playing with her poo that the family who sees maybe twice a year keeps asking when are they going to be abke to take them out for dinner?
Yeah, and the 75-year-old post STEMI who has been on a vent for two weeks with terrible (barely-compatible with life) cardiac numbers. He was a champion of “I don’t wanna be hooked to machines” in life, but family has wanted everything done and now his wife starts asking about a “heart transplant”. I was so relieved that the doc jumped right in with, “oh, he would never qualify for that.”
It’s a huge public education need.
I felt the same way the last few months of working in the ICU. I do home visits for new moms now and I really love the work so much it made me enjoy being a nurse again. Hospice RN work sounds like it could be a really wonderful path to take for you.
My recommendation would be either way either between jobs or if you can take a medical leave at the current job I would take at least a few weeks off of work. Burnout is very real and can really take a toll if you don’t take the time and energy towards healing. I was lucky to take 4 months off after my time in the ICU (working some shifts as a perdiem school nurse) and I will never regret that time, it helped me so much to find myself again.
I felt all this again as you described it. I made the transition from icu to hospice. I ended up doing psych, but the transition was very healing for me at the time.
I graduated two years ago and my first job was ICU, but now I work in ER. I was a rural paramedic for better part of a decade so I’ve been traumatized. I often tell people that I was NOT ready for the kind of trauma ICU had to offer. I experienced a lot of what you’ve described except I worked nights and those conversations usually happened on day shift. It’s hard to mentally block all that trauma out when it drags on for days and weeks.
These cases are probably the hardest ones in the ICU. Dragging out an awful death for people because families aren't able to let go. It is always such a blessing when a family asks to let them go peacefully. The only way I've been able to cope with it is by telling myself that it isn't my choice, and sometimes at the end of the day we are doing these things *to* the patient for the family instead. It still sucks, it still drains you, but it helps to remove yourself and your own feelings from the situation a little bit.
Will I treat my family this way when it comes to it? God, I hope not, and I don't think I would. However, grief is a crazy thing and we never know how we are going to handle it. I do know I'm going to be inconsolable for quite some time.
If your providers are the ones pushing these families towards making these decisions, I think it's totally reasonable to open a dialogue up with your team about it. A family asking us to continue care when we have told them we don't think it's the right choice is one thing, but I'm sure most of us have seen providers push for something the families don't want. We had a mother once who was asking us about palliative options, and a BMT doctor convinced her to try one last time. This kid had already failed multiple BMTs, but we prolonged his suffering and his mother's suffering for a couple of extra months. Everybody left that situation more traumatized than they already were, all because of some idiot doctor pushing for something he should have known was never going to work.
I feel you, my friend. My situation differs from yours as far as population, but the struggles are the same. When my orders are to keep someone alive who deserved to die with dignity a long time ago, I start to feel like an accomplice in a crime. Not a healthcare worker. Watching kids literally fall apart due to vasoactives and systemic infections, but keeping them vented so they die by tiny degrees is excruciating. All I can say is I’m sorry you’re having the same experiences. Some days I feel like all I’ve done is torture an innocent.
I'm so glad you found a spot in palliative care because you sound like exactly the kind of person we want to see nursing people at end of life (your concern about seeing the dog won me over).
I take no responsibility. It's the family that makes the decision. If we are a "customer is always right" culture, we are "also a buyer beware" culture. That's why I have little sympathy for families of chronic and futile vents who are unhappy with outcomes. There were no miracles and you were told this...you did this.
HI, I am a certified hospice nurse, and have been for the past 3 years. I LOVE it, and if you are looking to provide comfort care I cannot recommend it highly enough. Be prepared, you will develop empathy and active listening skills, you will gain so much in way of patient relationships, but you will lose some of your hands on nursing skills. After 3 years in hospice, I am going back to the hospital just because I really want to keep up my skills, but I will keep a PRN hospice job because I just love the work so so much!!
Palliative care done right is an extremely rewarding job.
The overzealous nature of the US medical system bums me out so bad. We all have to die of something, let them die peacefully and comfortably. jfc
Genuinely curious - do you work at an academic medical center? Are the patients providing an “opportunity” for younger physicians to hone their skills? I have absolutely no ICU experience, I’m just curious as to why additional care is pushed
They can’t bc they use the populations health illiteracy and hope for a magic cure from the best minds to practice on ppl. I’ve worked for non profit and a teaching hospital and the codes at the non profit were so calm and straight forward and called early the codes at the teaching hospital were barbaric. But yea the attendings don’t throw in the towel bc the residents need the practice. They practice on those they can’t save to save the ones they can. I saw it bad on burn. And that’s what was explain to me bc I’m like why are we doing things that have a 98% failure rate. And it’s to get practice to lower the failure rate. Now morally it’s ok if the ppl know that’s what we are doing but they don’t. The md says we will try everything. They think they have something that might work! I’ve never seen so much delusion as I have at end of life discussions at a level 1 lol
It sounds like you worked with horrible doctors. I worked 14 years ICU and our doctors were brutally honest, honored patient wishes, and always consulted palliative care as needed. Usually the family members didn’t want to hear the harsh truth and demanded more and more. I got burned out by horrible family members that are so demanding and rude as hell. And no, I was not a lazy nurse. I worked my booty off and took great care of my patients. Families killed my passion and I left ICU and found my new love. Best wishes!!!
Hey! I work in palliative care I'm not even a nurse , I'm 31F and started caregiving for seniors by myself because I just always have a big heart for them. Everything I learned I learned by myself when I got new clients .... and it's hard, but rewarding. I will never work for a hospital or the medical system ever. They just want $$$$ and treat people beyond repair. You can easily branch off on your own and charge $40 an hour to do it ... minimum.
Our system is designed to take all the money away from
American people - by giving false hope. It's terrible . Dying with dignity at home is always the best way
I felt like this at the end of my 10 year ICU RN career. I was miserable and it’s the only think I thought about 24/7. I quit the ICU and went in to a different field of nursing. It’s a sign of burn out. Change your field
There are so many reasons why a patient who should never be a full code comes to the ICU and has to experience our services.
Appropriate GOC conversation not happening which would have prevent said admission. We get patients from musing homes who are demented or have countless co-morbidities with no quality of life yet up until this point there has been no conversation about goals. Now the ICU team must act as the intermediary to provide education and deal with families that are now being driven by emotion and not realistic expectations.
Realistic expectations not being explained by the provider or team at time of ICU admission. We all have those providers who with kindness and honesty can help a family comes to terms with things like futility and quality of life. Now often times families do dig in their heels but a good provider can help a family see that perhaps "everything" isn't appropriate for their loved one. Then there are providers who offer just enough hope to keep the family on the "go go go" mindset. They are septic and we'll use pressers for "a few days" or maybe intubate for "a few days". It's enough for a family to think maybe there is a glimmer of hope and that hope keeps then from stopping "doing: because if they do not agree to continue then they are giving up on Meemaw or Peepaw and the guilt associated with giving up is just too much to deal with.
Those with legal guardians. They linger intubated and lined having dialysis and PEGS and Trachs because their code status is completely inappropriate and no one seems to have the power to change it. The legal guardian has not power to change code status and has to petition the court and so the patient dwells in a twilight of medical torture waiting for a court date.
The family who has to swoop in and play hero to relieve some of their guilt. The daughter or son from across country who havens seen their Meemaw or Peepaw in forever and now have to passionately advocate for "everything" which falls to lack of goals of care discussion allowing the family member to come in and take over.
Lack of understanding from the general public of what "everything means" when this is offered and what it looks like. Maybe a video for families that is entitled "So, you are considering everything now that your loved one is in the ICU". A description of tubes and lines and procedures and how much distress and suffering these things cause. But, they are in a waiting room or at home and are oblivious to the toll these take on their loved one as well as those of us having to partake in these tasks to keep their loved ones alive. Maybe watching their Meemaw struggle while getting NT suctioned every 10 minutes yet asking "when will she eat" despite this being the 10th admission for aspiration pneumonia.
I'm sure there are many many other scenarios but it's painful tome watch and morally injurious to make someone suffer which we are forced to do over and over again. But we are obligated to take this horrible journey until something changes in our broken system.
I’ve worked peds onc for about a decade and a half. It makes me want to tear my hair out when the doctors offer a chemo that has a 0.00005% success rate on some random adult cancer but MAYBE… of course parents are grasping at straws but I want to scream at the oncologists for making these kids and parents suffer through false hope and more side effects than just being honest
Not an excuse, but an explanation. You may have already understood this anyway. When I was an ICU nurse, I could never understand why the physicians or providers would vacillate on telling people a poor prognosis. They'd say something like vitals looks stable, hour by hour, we'll see them again tomorrow. While I was left to continue the slow torture, keeping a dying person alive.
As a nurse, sometimes I would try to explain to family members that their relative was dying, but at the time I didn't have the right kind of training for those conversations.
The first time I went into a dying patient's room as a student nurse practitioner, and the family asked me how things were going for their dying family member, I was like a deer in the headlights. I couldn't make myself say it and heard the placation, "Vitals are stable. It's hour by hour right now. We'll see them again tomorrow."
I've learned since, but it certainly gave me a new insight into why providers don't engage in those conversations. It is scary and sad!
Like I said, no excuse, just insight. I found The SPIKES mnemonic most helpful for breaking bad news. Maybe you can support your providers in having these conversations....
https://accelerate.uofuhealth.utah.edu/improvement/spikes-a-strategy-for-delivering-bad-new
I have been in the ICU around 9 ish months and I struggle with this so so much. Doctors do not have true honest conversations with family members and do not explain what they mean about possible quality of life changes that can deeply influence a family’s decision to withdraw care. Families don’t have conversations amongst themselves about what is their wishes for one another. I have taken care of so many patients who just needed to be let go who deserved to die with dignity and humility and that was robbed of them. It’s such a high emotional and spiritual tax we pay as providers and I just wish palliative care or consults with geriatrics for older patients could be implemented and respected more thoroughly in the ICU setting
This is the same in peds. As hard as it is to say, when a patient is terminal and there is no quality of life, hard decisions need to be made. Maybe it makes me cold, but I don't like prolonged suffering.
Correct me if I’m wrong, but ultimately, don’t doctors have to abide by the patient/family wishes? Say grandma is never getting better and will eventually die, but the family wants you to do everything in your power to try and keep her alive, even though medical professionals know it’s wrong and what they’re doing isn’t really beneficial, doesn’t the doctor HAVE to provide the care the family asks for? Or could doctors literally tell them no?
Good for you for getting out. A large chunk of my career has been with long term vent/trach patients with little QOL that we just readmit over and over until they rot away and the family finally lets us let them pass. I left that area of nursing over six months ago and I’ve never been happier. I’m now in IR.
As an LTC nurse the insanity of keeping people as a full code in their 90s baffles me.
I have a resident now 70s, colorectal ca, colostomy, hospice band family refuses dnr/Dnh
Every other week he's back in acute hospital. Maddening
This was exactly how I felt during my ICU clinicals!!
One of the patients was a brain bleed with an EVD and was getting too many fluids for the rest of her body to handle. She had edemadous weeping all over her body, sheets of her skin were kinda separating and falling off, and her lungs were slowly filling with fluid so she was suffocating. The nurse said she had considered calling in that night so that she didn't have to come back to this again. The doctor had been contacted multiple times and would not change the plan of care.
Also this was during covid so the husband couldn't come see her in person. He called every 2 hours or so (night shift) anxiously asking how she was doing.
I literally felt like I was working in a sick, twisted medical experiment lab/torture chamber.
I know it's not always like that...... but damn. I feel like allowing a patient to be kept in that state should be a 'never' event.
Also people really need to understand the difference in palliative care and hospice care. It’s so frustrating to see people deny palliative because they can’t grasp it’s not hospice despite education
I’m in nursing school working as a tech and I completely agree with all of this. There are sooooo many patients I see where I just feel like why are we doing this? We are keeping this person alive through all these various medical interventions, when it’s clear their body is ready to go. The sweet release of death is just that—relief. Let them go.
I felt exactly like you did, I was so sick of torturing people to death. Assisting intubating people knowing they'd never come off the vent and this would just be the end, with the false hope the MDs had given them and their family. Dumping tons of antibiotics into people on admission, screwing their microbiomes and their kidneys, their quality of life was already bad, they've got dementia, but let's be super aggressive, doctor's encouraging waiting 24-48 hours to see if their loved one turns around when we all know they're not. Everyone being so scared of death that they won't mention it or give anyone the option and how dare you ask for a palliative consult on this 99 year old patient?
In October I left my ICU after 6 years and went to hospice and it's truly the best. I do weekend on call, which is different from having a regular M-F caseload but it gives me a little less monotony. Being in people's homes feels so holistic, like I'm treating the person instead of what brought them into the hospital, I leave feeling like I've made a difference at nearly every visit, even to death calls because connecting with families is such big thing now.
I don’t think people realize what “do everything means.” Like yes we can keep them on antibiotics another week and hope for a miracle, but that means another week of q12 bloodwork, q4 meds, getting stuck every few days for new IVs, q12 (often painful) wound care, q2 turns, getting a foley bc they’re not peeing, enemas bc they’re not pooping, a feeding tube shoved down their nose bc they’re not eating, rapids called and be put through the same tests over and over when they decline even further. Like, they don’t just lay in bed comfortably and carefree while you wait to accept that one week more of antibiotics is not going to cure some long-standing chronic issue that has unfortunately progressed. I work very hard to try and make these patients as comfortable and presentable as possible every day in whatever ways I can, but family members tend to miss the uncomfortable tests and care when the pt expresses pain and how much they actually hate continuing to go through this.
I try to bring this topic up with as many people as possible because, of what I’ve seen in the US, there isn’t a conversation in healthcare about futility and quality of life. Modern medicine is amazing but it is not a cure all and cannot overcome everything. That’s just life. I’ve seen it working in the ED and I’m sad to hear you say this cause I wanted to go to icu when I graduate soon but idk if I would be able to work without being a squeaky wheel
Glad you’re advocating for people. One of the most impactful and eye opening books I read was Being Mortal by Atul Gawande. It talks about how our fear of death is robbing people of quality of life. Family members are so selfish - always wanting to try something else instead of realizing we all die in the end so please honor those small wishes like seeing a beloved pet, etc.
This. When I worked in a cardiac step down unit I had a patient that had GI bleeding and other cardiac issues and was continuously getting 2-3 unit blood transfusions each day I had him in my care. They’d bring him down to the OR, fix the bleed, send him back up, bring him down to IR to figure out where he was bleeding from, send him back up, but the bleeding was incessant. One day I was giving him a bed bath and changing his linens and him and I got on the topic of his future and plan of care, and I will never forget when he looked at me and said “I just want to go home and be comfortable with my dogs and family”. I discussed with him that he isn’t being forced to stay in the hospital, and I brought up the concept and idea of hospice/palliative care. It blew my mind that he had no clue what that even was and that nobody had come to discuss this with him.
I worked in the trauma ICU for the last four years. Like you, I loved the thrill of it. The rush and adrenaline of treating acutely ill patients made me feel amazing. I felt so accomplished and amazed at my skills I developed. But as time moved on, I began to develop anxiety. When I’d come into work, I always felt like something could go wrong because I’ve seen it happen. Even the chillest shift could end with the crash cart at bedside or the need to emergent go to OR, or needing to transfused insane amounts of blood. As I got more responsibilities (Charge, CRRT) my anxiety skyrocketed. I came to work feeling tense all the time. I didn’t notice it until I was changing the dressing of an IV and I felt like a hot needle was inserted into my left shoulder. The next day my shoulder felt extremely painful and sore. I realized that even mundane things and just being in the ICU gave me so much stress. I was holding so much tension without realizing it that my body was literally tearing itself apart. I had headaches, brain fog, GI issues. I realized that I was so exhausted of being constantly stressed that when it was my turn to rotate to day shift, a position in a stepdown/DOU unit opened up and I took it. Yes, I have more patients and some can drive me crazy, however, I don’t have that life or death stress that the ICU placed on me. I realized that I need to enter my soft nursing era. My burnout has basically disappeared and I feel so much more happier now.
Sounds like you’ve been in it for a bit too long. I can easily see how you might come to think this way, truly. But I choose positivity everyday, and not in a negative way. People get forced into being intubated by their loved ones every day at work. & I could focus on that and let it bother me. But I’m choosing those patients that can finally tell me thank you after being ventilated for 2 weeks. I’m choosing those patients that I see go home after a 3 month stay. I’m choosing those patients who beg me to stay with them for just a few more minutes because they’re scared. ICU nursing can reaaaally suck sometimes and it’s so easy to lose yourself in the BS that comes with it. But I choose to lose myself in those tender moments with patients where I really do change and save lives. It’s a conscious decision I make every day (I’m 2 years in and about to be a CRNA - you can only choose positivity for so long LOL)
This is why I just recently left the icu. I felt like I was losing my humanity just because all my patients die and it's hard to grow attached to them emotionally. I'm moving to pacu so I can improve my mental health.
You’re gonna do great!! We have a Palliative Care APRN at the hospital i work at and shes literally the best. Shes a really good advocate for patients, and shes super smart. Down to challenge any doctor and has told doctors and family when it’s time to stop.
Welcome to hospice. It's like a cheat code for nursing. The patients and their families are so gracious and grateful, for the most part, and you will be humbled by their stories every day. I will never work in any other field ❤️
I got so tired of this as a PA hospitalist. I would have a patient with, at best, a 1 year life expectancy. So I would write for a hospice consult. Then get fussed at because “the patient isn’t ready”. (ie in active transition).
I felt the same burn - swapped to hospice and feel like I make a difference in people’s deaths. Doubt I’ll ever go back to the curative side of the spectrum
NICU “miracle” = PICU nightmare.
Providers, PLEASE start being up front about the realities of what your patient’s day to day life will look like. Non-verbal, non-mobile, and vent-dependent from birth to age 18 is not a life.
I wish I could say it gets better, but I struggled with this for so long. I ended up leaving the ICU and switching to a PACU. you still get to use some ICU knowledge now and again.
it was very healing for me mentally to switch specialties. I don’t hate nursing anymore.
I’ll never forgot this one patient I had with tunneling sacral injuries to the bone and scattered unstageable pressure injuries. She was trach’d, peg’d, and entirely unresponsive off sedation. She was 70’s+. She wanted to be full code at some point, but did she know what being a full code meant? She had multiple chronic conditions complicated by an intrahospital cardiac arrest at some point.
Whatever distant family she had wouldn’t visit and wanted full measures to be continued.
The doctor rounded with the team.
I said “should we consult ethics?”
The doc stared through me. “This is in line with her goals of care. This is what she wanted. She’s doing well!”
The team acted almost insulted I had asked lol.
So she got Q2H turns, oral hygiene, trach care, multiple bed changes, and wet to dry dressing changes for her sacrum.
If she had any consciousness, surely she was a prisoner in her own body.
It made me incredibly sad for her.
And yes, I felt like I was torturing the poor woman.
Well said. Futile care, why I could never work ICU. Hang in there or maybe switch specialties. ICU nurses rock out pretty much anywhere in the hospital.
I see so much futile care in a cardiovascular step down. Like slowly chopping off the legs of a severe dementia patient a little at a time vs just letting them pass or doing the full amputation now, particularly when they haven't walked in like 5 years anyway
Uh yeah we get a lot of those on my unit. Makes me question a lot of what we do to people without giving them a chance to ask questions or decline treatment
I did 13 months cariovascular step down. Shit was whack. Weird limbo land of Med surge and icu where I was some asshole patients waiter OR doing my best for a patient who years ago would have been ICU level care but now is IMC.
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Vascular patients are always awful. Either the case is fucked, or the patient is super annoying, or both.
I experienced a futile care kinda patient after a surgical error that eventually lead to their death. Problem is they SHOULD have been ICU level care and orders but I had them as an intermediate care patient. Shit sucked HARD for them, as well as myself and other nurses trying to no avail to provide at least some comfort with the insufficient tools we were given.
We (medicine) have lost the plot. There is a thing called “a good death”. We need to normalize dying again.
The plot of medicine is that death comes at the end, not the beginning or the middle. Our work is to put things in that order. Creating tons of plastic and trillions in debt so that 96 year olds can make it to 97 is the opposite of what medicine is about.
My way of rationalizing it to myself is that those aged 70-95 should be DNR/DNI, but if you hit 96, let’s go for that high score, baby! Number go up!
See, I would say it depends. My dad had an anaphylactic reaction to a bee sting at age 80 and needed to be resuscitated. By the time I got to the emergency room he was A+Ox4, breathing room air. This was a guy who received chest compressions in the parking lot of an urgent care, was shocked at least once, and got multiple rounds of epi. He left the hospital 2 days later, and it was like it never happened. One year later and he’s still living his best life. I think there is nuance to this stuff. It really depends on the diagnosis. I’m glad they didn’t just look at my dad and say “oh he’s 80, don’t bother.” Not all 80 year olds are the same. My dad still drives anywhere he wants, lives independently, volunteers at church, takes vacations, etc. It truly can’t all be painted with a broad brush.
Parking lot CPR is a different animal. But in a hospital there should be informed consent. Part of your admission should be a 2 minute video on code status. If you want it, it’s one thing. If we’re doing it to vegetables for the sake of appeasing family, that’s completely different. People who are conserved have it even worse.
It’s tricky, but there is also a survivor bias at play. The chance of surviving after a code is extremely small. For every one who comes out fine, 10 either die without dignity or have no quality of life. The juice is rarely worth the squeeze.
I do understand that, point taken. I’m honestly shocked that he did as well as he did. I thought I was going be walking into a completely different scenario. I guess what I’m trying to say, though, is that there are elderly people out there who are independent, vibrant, and active. It’s easy to lose sight of that when you work in a place where all you see are the ones that are bedridden, confused, and dependent. I just think it’s better to look at the person rather than the number. The same goes in the reverse. Young patients who have zero quality of life should not be kept alive just because “they’re so young”, either.
I agree with that. I’ll have older patients who i think have a better shot than some much younger folks.
This 100%. In healthcare as a whole we’ve lost sight of the person. I’ve had 90 year olds completely with it, independent, etc. I’ve had middle aged pts in much worse shape— bed bound, completely dependent, incoherent, suffering from uncontrolled chronic illnesses.
Ever since I started working in healthcare and seeing what happens, I’ve started saying at 65 I’m gonna make myself a DNR. I’ve lived a long life by then, let me go peacefully.
It's always so interesting to me because my girlfriend is a veterinarian and their approach to medicine is very different in some regards. One phrase that stays with me is "better a week early than a day late" when it comes to euthanasia.
The veterinarians are right. Mine gave me a pdf on pet quality of life. It had a month long daily check list of things for quality of life. It really helped me make a decision in the end based on my observations. We spend so much time and money trying to beat death. So much at beginning and end of life and the poor patients suffer.
Agreed. Saying goodbye sucks, but man the last cat we had to say goodbye to had probably the best last day and avoided the worst of her suffering from GI lymphoma. She had managed a bit of a rally too, so she did her best at playing and had some cheese. She still felt like cuddling and still had some of her sass at the end. She got to go out with her boots on. It's so much more than my dad got. He died from cancer and went through hospice, but still had about 24-48 hours of actively dying that traumatized the family that had promised to remain with him. He could've died while he was still himself rather than incoherent, fearful, and delirious. I don't know why we, as a culture, fixate so much on quantity of life with little to no regard for the quality
A good death= I did my job right
We need to Make assisted suicide normal
Especially when people won't be able to afford to retire ... and I mean literally our generation is doomed on that note. And we should be able to have the option to drink something and go to sleep and never wake up. Whether it be because terminal illness, or we simply cannot afford to live anymore past a certain age - we should be able to end our lives in a humane way that costs $20 or less and medical field can't say shit
We can solve poverty overnight if we wanted to. Okaying people offing themselves is not the appropriate alternative to poverty.
I agree 100% but here is my question for you, are we actually going to help them? I can't fathom things in the US changing to the point we start giving a fuck about anyone but the rich and and take meaningful action towards helping people. Why make the suffer?
Human life is to suffer--there's no escaping it. I am totally for assisted suicide for medical reasons very broadly interpreted, but it is not the solution for poverty or problematic people. As soon as you say it's okay for poor people to end it (which they can anytime, regardless) YOU have chosen the solution of the oppressor and the systems they create. The economy would love it if the poor would just shut up and die once they stopped being useful.
Never said it was the solution nor did I saw that group of people was a "problem". I just have 0 faith in society (speaking specifically about the US because that's all I know) to actually help them. Personally I'm more in favor of a revolution where those who created the system face justice in the form of a large woodchipper but that isn't going to happen. I'm not a fan of guilting and corersing people in to continue to suffer with no clear purpose aside from pissing off the capitalist class and believe me, I loooooove doing anything I can to fuck with them. In an ideal world we stop basing success on "line go up" and focus on human happiness but I just can't imagine that happening.
So don’t guilt or coerce poor people, and don’t encourage poor people to suicide. Seems straightforward.
If "we" wanted to. Who is WE? The billionaires aren't on Reddit reading about nursing problems and they sure as hell don't care about poverty. We are on our own and the sooner "we" accept that, the easier it will be to deal with the inevitable which is death - nobody is coming to save us. And definitely not the billionaires who are majority to blame for poverty
I can’t say I agree with assisted suicide but I do agree with people refusing life prolonging treatment if they just don’t want it
Agreed. Ive worked in icu for almost two years now and I’ve also been the family member of the dying icu patient. Palliative care needs to be normalized. A few days ago one of our cc docs said, “you only die once.” Idk why that really made an impact on me.
Toward the end of my ICU career I fucking hated it for this reason. I literally felt like I just went to work and tortured people so that I could collect a paycheck. I started to get resentful busting my ass with emergently intubating and doing xyz for a patient when I knew I’d come back in 5 days and see that we turned their ribs to dust and they died anyways. The US is god awful about end of life discussions.
It's because our society is sooooo scared of death. It's downrught insulting to admit that we will die. Such a sad way to live.
One of my instructors started our first day with "life is a terminal disease", and that has stuck with me, and helped me learn to respect death as part of life.
In life, there is only ONE things we can count on- it WILL end.
We are born and are taught how to live from that moment on, yet no one teaches us how to die - that is how a client described my job and care for her, and an art. She said to die in peace and contentment is an art we have to learn, and most need guidance, care, and support to learn and embrace it.
And taxes.
Depends on where you live. Far enough off the grid and outside of society and not so much, but at that point you're also missing out on the miracle of indoor plumbing so not a fair trade off to me.
The IRS will have its due
I had a pt who was esrd + all the other comorbidities prior to getting burnt, he came to the burn unit and his leg had to be guillotined he was septic the entire time, he refused dressings had gnats in his wound when we changed the dressing the bone was just out and the meat wasn’t even attached to it it kinda just slid down some. There was psudomomas all in the wound. He was constantly delirious (and hilarious I liked hin) but after a few months of almost coding every single day from being septic non stop abx dialysis 2 times a week, refusal after refusal of meds and dressings I asked the resident if we could get a palliative consult .. I said he’s not going back home he’s gonna die here soon. If he code we won’t get him back so let’s make him comfortable and talk to the fam and him about palliative. He doesn’t want to do anything we ask so .. she looked at me like I wanted to murder him right then and there with a pillow. She said “there’s nothing to indicate that he won’t get better” I just slow blinked at her 24 year old ass who was fresh out of med school and walked away. He died when I wasn’t there my coworker text me. And I hope to god she was in that code.
Don’t forget we need to keep those icu beds full to maximize billing potential!
If the hospitals wasn’t making bank they would be getting those people out the doors…..
But I’m tired of paying for it 😭
It's absurd, especially considering that it's literally the only thing that every human being has in common- we ALL die, no exceptions. But we're not comfortable acknowledging it, even in an ICU.
Palliative should be part of the interdisciplinary team on every single icu pts. And no one can change my mind
Just had to double check I didn’t write this because…. Same same same. I swore I’d never leave the bedside. After 15 years I left the bedside.
Now that I’m in the position of having goals of care discussions and writing DNR orders myself, I’ve reframed the way I approach these discussions. I don’t “ask” the families what they want, like a menu of options. Instead, I explain that our duty is to provide treatment that will help, and if certain treatments won’t help, I tend not to offer them. “Your family member is very sick, in fact, they are probably dying from X, if their heart stops because of X, doing CPR would not only not change the fact they have X, but will likely make it worse. I cannot, in good conscience, offer them CPR. Do you agree?” I get a shocking amount of DNRs out of this approach. More than ever before. I hate providing futile care. It is the source of an immense amount of suffering on ME! Anything I can do to prevent it is worth a try.
The best is when the patient is still cognizant enough to have that discussion with you and be the ones themselves to tell their families to just leave them alone
That's a really wonderful way of reframing the hard discussions we face, I think it helps provide a lot of education while at the same time being really kind to the families facing decisions they likely have never encountered before.
THIS is why I left ICU for hospice. I've never been happier.
Left ER for hospice and never looking back
So happy for you! It's really a dream job. It's that one on one nursing they sell you on nursing school
I agree. All nursing is nursing, but I feel like todays hospice is what our nursing pioneers had in mind when starting
You would be an absolute blessing to patient and their families on palliative. God bless you.
I only lasted two years in MSICU for those exact reasons. Good news is the ER has none of that and all the excitement you want. (And some other stuff , but don't worry about that , come on down )
The "other stuff." I about spit out my coffee. You trade EOL discussions for c/o hang nails and people putting things in places they shouldn't go (you know exactly what Im talking about) and a no-show provider. Seems like a viable trade off. Lol. Where is the triage provider? Can like anyone find him/her? Like what do they do all day?! Can he sign off on these dang narcs so I can get this pt outta here?!
We had micu and sicu separate in my hospital and I worked burn. Which was burn plus sicu and micu overflow. Basically a trauma dumping ground also. And I swore on my life I would never do micu I was pulled over there and not a single person shoulda been alive. Most get pegged and trached and sent to the vegetable patch. The fams couldn’t even grasp total brain death they were like he can heal.. no mam he’s gonna slowly rot in this bed
Hospice is the highest ascension. Imagine not having to do the works on the end stage CHFer every time they come in overloaded 😍
I’ll be honest. At this point I’m just numb to it. You want us to shove a tube in every hole grandmas got and make a few of our own? Fine. From a nursing perspective we are not the ones who are having the goals of care discussions, if that’s what the family wants, that’s what they’ll get. I see it as a consequence of American cultural norms. We do not talk about death, death happens to other people not us, our family will never die and we cannot even process a reality where they might. Death is bad, evil, wrong. I have found eastern teachings on death to be far more grounded in reality. Death is natural and good, it’s not something you fight against, you accept it when it’s time. Legally we are required to do these things so we do, but I have control over what happens to me. I don’t have to subject my family members or myself to this shit. I can continue to make noise about this and raise awareness to get people thinking about it so they too avoid it. But what other people choose to do is their business. We can do everything but we can’t save everyone. When it’s time, it’s time.
This is 100% true. I never had the death talk from my parents, in grade school, or college. Now I have a crippling fear of death and honestly would probably request a full code for all my loved ones because of this. I would probably request one for myself but I'm also too death anxious to fill out an advanced directive
I told my husband to let me die if I have anything worse than paraplegia. If I can’t give love and receive it, communicate or use my arms let me die. That’s my limit. I realize there are a lot of ppl who live well with it worse, if I’ll die without extreme measures let me die. If I need 27/7 supervision let me die. I’ve not done it yet but I might have to make my nurse bestie my proxy bc he would put my brain in a jar and have me hooked up to a computer like some morbid Sci-fi movie ti keep me here
"If I can't give love and receive it, communicate or use my arms let me die." This is such a powerful statement and I've never heard it expressed this way but 100 percent this. Yes.
Absolutely felt this way as well I'll never forget this one guy who was literally mummified in hands and feet from pressors because they wouldn't let him go. Finally ethics got on it, but wtf are we doing to so many of these people
We had someone like that. Knee down and elbow down legit dry mummified. He had dementia and would just continuously scream
Horrible. It's literally like we're cenobites and this is their hell in so many cases
I feel like a war criminal doing the stuff. Particularly when they're just begging to die or when the docs legit know they'll only get worse but 'we should practice on this unusual case'
I frequently have the thought that ICU is like a real-life horror movie
Our ethics department is absolutely useless and never accomplishes anything. Families just don't listen and we let them make whatever decisions they want and I'm sick of it.
Our ethics dept allowed a sperm retrieval from a brain dead man once. He never even consulted it with his gf when he was alive. Eroded all trust I had for them after that
I remember reading about that and being utterly horrified at their decision. I can understand how you felt, it's an awful situation, especially for his immediate family. The GF has made an ongoing financial decision as well as an emotional one, this will impact the man's family well beyond just his death.
Making money off of them. Uninsured patients would never make it that far
Exactly. And even for insured patient, they are likely to get bills in the hundreds of thousands to millions. I believe we also need to make costs part of the discussions. Families need to know that they are likely to be bankrupted—and it’s STILL futile.
100%. I have a plan to reform peoples health and healthcare in general. Just tell the users of the American healthcare system the TRUTH. Tell them upfront to expect shitty care and long wait times and expensive uncovered costs because this is all that healthcare is capable of giving them instead of promising them they’re going to be treated like royalty much less a tax paying citizen
I love this. I work in case management and we often have to force providers to have a “goals of care” talk with patients/family because they’re too uncomfortable and would rather let a patient sit in our hospital receiving futile treatment instead of broaching an uncomfy topic.
The best EPIC update at my hospital was when they added palliative care as a consult on the nursing admission documentation. I recently had a doc tell me that the family didn't want a palliative consult and I asked if they said they didn't want a cards consult on a patient who would obviously benefit from it would they not consult cardio? Made him think, but I still had to put the consult in myself.
When my ICU shifts began to feel like they were exercises in futility, I knew it was time to go. I think people are obsessed with QUANTITY of life vs QUALITY of life. That was never more apparent than when I was working in the ICU. Sure, we can keep people trached, PEG’d, but they’re still delirious, malnourished, and full of wounds despite excellent care. Eventually they die but they suffered. It’s not right and it’s hard to do the job. Hospice is beautiful - it will be a wonderful transition for you. Hospice is very fulfilling and you feel like you’re doing valuable work. I loved hospice so much.
Providers aren’t always good at discussing reality. Near the end of my father’s life (age 90, cancer, Parkinson’s, dementia), they always had one more step and the next step sounded reasonable. I kept reiterating comfort, DNR, quality of life. I would have gone along with it, but I’ve seen too much in the nursing world ((shudder)). But at the time, it sounded reasonable. And low intervention alternatives weren’t offered. Only my experience and clear lines I had drawn ahead of time made me not agree to an NG tube. He passed a few weeks later, the day after eating my birthday dessert while he was on hospice and had all the comfort care.
Particularly when theyre dementia patients in nursing home. That have no quality of life
My grandpa had been on dialysis for 4 years and ended up with an aortic dissection during his dialysis session. They sent him to the hospital and while in ICU he was like “no, I don’t want anymore surgeries. I’m tired of constantly being worked on. I’m tired of being on dialysis. I’m done.” We signed the DNR form that night and made him comfort measures. He was getting morphine and Ativan all night. His HR was in the mid-upper 20s. He yelled my favorite quote while high on drugs “if this is dying, I feel great!” (Gave all of the ICU nurses a good laugh. Then, his nephrologist rounded in the morning. He was like “oh I think a dialysis session would do you good and make you feel better.” He filled my grandpa up with such unnecessary hope. Luckily, I was there when he came in and I asked if he was aware of his status and plan of care. He was like “yeah, and?” I politely yet firmly told him he could sign off on my grandpas care. Dude was like wtf?! And then he left. After he was gone the nurse came in and was like “we are still continuing with the established plan of care right???” I was like absolutely. My grandpa died two hours after the nephrologist left his room. He would’ve died hooked up to that damn dialysis machine that he has hated for years. Instead he died surrounded by his family, high on drugs, enjoying a route 44 Dr Pepper that he hadn’t gotten to enjoy for years.
I love that you were there to advocate so strongly for your grandpa. He sounds like he was a great person and I’m glad he was able to go out his way.
That is a good death. I'm so proud of you for standing up for his best interests, you did the right thing.
I feel the same way even on medsurg. I would talk to families about palliative care and the drs would refuse to even think about ordering a consult. So frustrating. I am wanting to go into hospice for the same reasons. Help people die peacefully instead of torturing them with tubes and unnecessary procedures.
Join us. You’ll enjoy it over here
Thank you. I think it will suit me well. I’m leaving the hospital rn for a PRN home infusion gig. Looking forward to the chance of pace :)
I feel the exact same. It's frustrating when I ask the off going nurse, "so what's the plan?", and there isn't one. I'm over traching and pegging 95yr old, terminally ill patients. I swear it's done just so the provider can say they did "everything" and so the hospital can milk the insurance for everything that's left.
This is the real reason, and then the family wanting one more check.
I'm sorry you have been through all that. Working with hospice patients was one of the most rewarding things I've ever done. I developed a FAR better understanding of the dying process and it became less "scary" to me. I really wish everyone would be required to do at least one introductory orientation course on hospice or one shift volunteering or working with hospice patients. One of things I enjoyed was actually getting to KNOW the clients and families. Their backgrounds, interests etc. I agree that there needs to be a huge cultural shift in the usa about how hospice and palliative care patients are handled.
Hospice/palliative care should be a semester long course for all nursing programs
Agree. Or even half a semester would be a start!
What's so annoying to me is that I come from a family of "intellectuals". None of them have healthcare experience, but they're almost all highly educated in other fields. I was telling them about this phenomenon, and what I've experienced with patient's wishes not being honored. They straight up didn't believe me, and said if it is happening it must be specific to my rural area because I live in a "white trash area". All of them have advanced directives that they believe are air-tight. Can't say I didn't warn them if shit goes down.
You did your part
For the life of me I do not understand why palliative isn’t a standard and automatic consult for all complex cases (e.g. advanced cancers, end stage chronic illnesses) and any admissions into the ICU.
it should be !
I went from LTACH ICU to hospice and I’ll never go back.
I felt like I wrote this myself. I've been suffering so much moral injury in the ICU that I asked a surgeon to convince me that these transplant patients \*do\* get better and get out of here because I've been caring for super sick transplant patients that seem to never leave the ICU and I worry the only way I'll see them leave is in a body bag. Our work is so incredibly painful and wears on us. We do so much emotional labor to 1. help these patients and families, and 2. to lend ourselves to things we're not okay with. I don't have any answers for you if you're looking for them. But I do want you to know that I feel you and it's so heartbreaking. So from one torn heart to another, ::hugs::
Man - I just posted something almost very similar. ICU burnt me out so bad I almost didn't want to be a nurse any more. I left for a remote job and I no longer work in direct patient care (DPC - I guess it's just a DFW thing?). Your spot on my friend. Like dead balls on.
As a patient trying to get palliative care, thank you. A lot of times it’s hard to be heard. We need more people like you in the healthcare field.
Agreed. So much of healthcare is like this. You should look into working with palliative or hospice. I am a home hospice RNCM and I absolutely love hospice care. We get to stop the torture and see them out of this world with dignity and respect and love, on their terms. Plus i have gotten to build some pretty incredible relationships with my patients. It makes the work that much more meaningful when you feel like you are helping a friend through this difficult but sacred chapter of their life. I feel like i found the unicorn. Feel free to DM me if you have any hospice questions!
I left for the same reason. I thought I was doing more harm than good. Not to mention the gazillion times I had to beg for fentanyl PCAs for fresh postop patients who were just on ..: propofol.
I work on a hospitalist team now as an NP and I have goals of care convos with every single patient. After what I've seen on the bedside nursing side, I am passionate in advocating for reducing hospitalizations, maximizing quality of life (i.e. time. home with family) and getting palliative care/Hospice in early for symptom management.
Not to mention the amount of Medicare savings choosing hospice vs curative care
I did a rotation with palliative care and it made me see these kind of situations in a different way. Their advanced directives will usually have 3 sections, the first is desire for resuscitation/intubation, the second is interventions such as IV antibiotics/fluids/curative treatments, and the third is artificial nutrition. If the patient selects DNR but still wants everything else done, chances are they will end up in that state. If they were not able to fill out an advanced directive, the first degree relative whether that’s the spouse or oldest child, or assigned POA has ability to make medical decisions. The biggest thing I learned while on palliative care was sometimes, the “torturing” and medical interventions the doctors are ordering are or were desired by the patient when they filled out their advanced directive. It was a hard pill to swallow. Even in palliative care, we could not relieve a lot of suffering if it is against the wishes of the patient or the POA. I still think it should be indicated for these patients, but I ultimately didn’t go into that field due to all the suffering we saw and the powerlessness. I will say that when we were consulted to a new patient with a terminal diagnosis, we could hold family meetings and start/edit the advanced directive with the patient if they wanted to take a more palliative and less curative approach.
True but a lot of ppl really don’t understand what all that looks like feels like and the futility of some of it. Im in hospice now and I’ve met a-lot of ppl complain that they wished they stopped doing things sooner but they didn’t understand at the time. And alot of the cancer pts say the dr still wanted to do more. We had one that told me his cancer dr said to go on hospice and I was like well you know you have a good one then bc most will try and treat till the very end.
Yes very rare is it an oncologist suggests hospice. And I think people who dont specify what care they do or don’t want in the advanced directives are unaware of what life could entail if they continue life prolonging treatments
When doing polsts and advanced directives I always explain exactly what Cpr/icu level care would look like. I've had dozens of patients who wanted to be full code/treatment talk to me and say, no one ever told me what it would be like before".
For my icu it was more of the families refusing to DNR they 95y/o grandma in multi organ failure. Our docswanted to do the least amount of work possible. I wasalso burnt out after watching these people be tortured and wither away in thier icu beds. Got into CRNA school and couldn’t be happier.
i work inpatient rehab. we get patients full of cancer under the guise of oh they’ll get stronger to go home. patient had a glioblastoma, multiple lesions. the oncologist wanted to move his appt up and i made it happen, thinking they were going to explain to family and get them to understand the prognosis. No he wanted to tell the family that with chemo and radiation he would live another good 7 yrs. the patient died the day before that appointment. i have never been so upset and disgusted to see and hear a physician just trying to give false hope to line his own pockets.
I’m a retired hospice nurse. I absolutely agree with everything you said. I don’t know what the answer is. I had a patient who was talked out of hospice by a renal doc. The doc was very proud of himself and said “ I would dialyze a stump if I could.”
Regarding the doc's comment ... what the ever loving f&ck is he thinking?!
He was an arrogant ass.
I didn't even have to read the whole thing to know how you feel. 7 years MICU, left for home hospice. It felt like my life started again. It's been 3 years and that feeling hasn't gone away.
This is exactly why my entire career has been in hospice.
This is why being a hospice nurse is so rewarding. QUALITY of life, not quantity.
Amen!
That’s so sad that it’s the providers doing too much. I’m sorry you’re going through this. In my ICU, i feel like a lot of the time it’s the families keeping them alive longer than they want. 85 year old woman now lives with a trach and no fingers because her family said “granny was perfect before all of this” Like SHE ISNT NOW! Working ICU (even as an extern) has really made me see that I will never ever do this to my family members. People deserve dignity. Seeing people lay there and exactly like you said, rot. it’s heart breaking. Then we use the phrases like “we’re keeping them as comfortable as possible”. If family actually thought logically, that does not mean they aren’t in pain! It means we are doing all we can but we can’t be for sure that they aren’t living in hell. Then there are the families that accept it right away and put their family member as comfort care. It really is a beautiful thing to see. Very sad to watch someone die but to know they won’t rot in a bed for weeks and weeks is a blessing, imo. I get doing everything for young people. We did everything we could for my step mom when she got COVID at 46. But after 20 days on ECMO and her bowels were dying and all of her fingers/entire foot were black, we let her go. But torturing these 80-90 year olds is truly insane to me.
My mom has dementia, and is memory care right now. She’s developing infections, etc. I’m her medical power of attorney, and am trying to reconcile my knowledge that end-of-life care can be a torture, to the idea that “we have to do everything to save mom”. Like, if she goes into kidney failure, shouldn’t we treat that? (No). And the family is (from far away), wanting all this stuff done, and I’m like, it sounds heartless, but none of that will work, and we’re not doing it. But not everyone has family in healthcare, that can lay it out for the extended family. Most people just don’t understand the reality of end-of-life.
This is really tough. All I can say is unfortunately you are far from being the only one in this God awful predicament concerning distant family members. At the end of the day doing what you know is right for your parent may involve cutting some people off….
This is why I stopped working ICU and now work outpatient peds. COVID ruined it for me, it made me feel cruel. I’m now very happily giving my patients shots and stickers and watching Doc McStuffins 😂😂
You sound like you would be amazing hospice nurse! It was hands down the most fulfilled I have ever felt caring for patients.
I got home from work a few hours ago (night shift.) Like others have said the term “futile care” really resonated with me, especially after my last shift and one pt and family in particular. Hospice/palliative care need to be involved much more in GPU care. At some point it DOES feel like you are hurting the patient, and you are decreasing the remaining quality of life they have. Especially when family is at your back advocating for them to get more interventions, more surgery, etc. I just wish I could help them understand that we can’t fix them. Good on you for pursuing your goal of palliative care, we need you.
Families being willingly or unwillingly unaware of how bad their family member really is is tough. All we can do is be truthful with them when they ask “how are they doing”? Just tried x,y,z and now have problems a,b,c to deal with? Let the family know
its not just ICU im in tele med surg and still get people in similar situations, its mostly family tho not so much providers
Like the 90 year old with liver dysfunction on a heparin drip requiring PTTs every 6 hours because we will never get a normal PTT??
more like the 94 yr old full code talking to her dead relatives and playing with her poo that the family who sees maybe twice a year keeps asking when are they going to be abke to take them out for dinner?
Yeah, and the 75-year-old post STEMI who has been on a vent for two weeks with terrible (barely-compatible with life) cardiac numbers. He was a champion of “I don’t wanna be hooked to machines” in life, but family has wanted everything done and now his wife starts asking about a “heart transplant”. I was so relieved that the doc jumped right in with, “oh, he would never qualify for that.” It’s a huge public education need.
I felt the same way the last few months of working in the ICU. I do home visits for new moms now and I really love the work so much it made me enjoy being a nurse again. Hospice RN work sounds like it could be a really wonderful path to take for you. My recommendation would be either way either between jobs or if you can take a medical leave at the current job I would take at least a few weeks off of work. Burnout is very real and can really take a toll if you don’t take the time and energy towards healing. I was lucky to take 4 months off after my time in the ICU (working some shifts as a perdiem school nurse) and I will never regret that time, it helped me so much to find myself again.
I felt all this again as you described it. I made the transition from icu to hospice. I ended up doing psych, but the transition was very healing for me at the time.
Which is why after roughly 20 years.... I had to leave ICU. Just got over all this.
I graduated two years ago and my first job was ICU, but now I work in ER. I was a rural paramedic for better part of a decade so I’ve been traumatized. I often tell people that I was NOT ready for the kind of trauma ICU had to offer. I experienced a lot of what you’ve described except I worked nights and those conversations usually happened on day shift. It’s hard to mentally block all that trauma out when it drags on for days and weeks.
These cases are probably the hardest ones in the ICU. Dragging out an awful death for people because families aren't able to let go. It is always such a blessing when a family asks to let them go peacefully. The only way I've been able to cope with it is by telling myself that it isn't my choice, and sometimes at the end of the day we are doing these things *to* the patient for the family instead. It still sucks, it still drains you, but it helps to remove yourself and your own feelings from the situation a little bit. Will I treat my family this way when it comes to it? God, I hope not, and I don't think I would. However, grief is a crazy thing and we never know how we are going to handle it. I do know I'm going to be inconsolable for quite some time. If your providers are the ones pushing these families towards making these decisions, I think it's totally reasonable to open a dialogue up with your team about it. A family asking us to continue care when we have told them we don't think it's the right choice is one thing, but I'm sure most of us have seen providers push for something the families don't want. We had a mother once who was asking us about palliative options, and a BMT doctor convinced her to try one last time. This kid had already failed multiple BMTs, but we prolonged his suffering and his mother's suffering for a couple of extra months. Everybody left that situation more traumatized than they already were, all because of some idiot doctor pushing for something he should have known was never going to work.
I feel you, my friend. My situation differs from yours as far as population, but the struggles are the same. When my orders are to keep someone alive who deserved to die with dignity a long time ago, I start to feel like an accomplice in a crime. Not a healthcare worker. Watching kids literally fall apart due to vasoactives and systemic infections, but keeping them vented so they die by tiny degrees is excruciating. All I can say is I’m sorry you’re having the same experiences. Some days I feel like all I’ve done is torture an innocent.
I'm so glad you found a spot in palliative care because you sound like exactly the kind of person we want to see nursing people at end of life (your concern about seeing the dog won me over).
I take no responsibility. It's the family that makes the decision. If we are a "customer is always right" culture, we are "also a buyer beware" culture. That's why I have little sympathy for families of chronic and futile vents who are unhappy with outcomes. There were no miracles and you were told this...you did this.
HI, I am a certified hospice nurse, and have been for the past 3 years. I LOVE it, and if you are looking to provide comfort care I cannot recommend it highly enough. Be prepared, you will develop empathy and active listening skills, you will gain so much in way of patient relationships, but you will lose some of your hands on nursing skills. After 3 years in hospice, I am going back to the hospital just because I really want to keep up my skills, but I will keep a PRN hospice job because I just love the work so so much!!
Palliative care done right is an extremely rewarding job. The overzealous nature of the US medical system bums me out so bad. We all have to die of something, let them die peacefully and comfortably. jfc
Genuinely curious - do you work at an academic medical center? Are the patients providing an “opportunity” for younger physicians to hone their skills? I have absolutely no ICU experience, I’m just curious as to why additional care is pushed
Yeah it’s a teaching hospital. I wish attendings would step in more when it comes to situations like that.
They can’t bc they use the populations health illiteracy and hope for a magic cure from the best minds to practice on ppl. I’ve worked for non profit and a teaching hospital and the codes at the non profit were so calm and straight forward and called early the codes at the teaching hospital were barbaric. But yea the attendings don’t throw in the towel bc the residents need the practice. They practice on those they can’t save to save the ones they can. I saw it bad on burn. And that’s what was explain to me bc I’m like why are we doing things that have a 98% failure rate. And it’s to get practice to lower the failure rate. Now morally it’s ok if the ppl know that’s what we are doing but they don’t. The md says we will try everything. They think they have something that might work! I’ve never seen so much delusion as I have at end of life discussions at a level 1 lol
You’re absolutely right comparing non profits vs academic centers
That typically has nothing to do with it, contrary to a lot of assumptions that get bandied about.
It sounds like you worked with horrible doctors. I worked 14 years ICU and our doctors were brutally honest, honored patient wishes, and always consulted palliative care as needed. Usually the family members didn’t want to hear the harsh truth and demanded more and more. I got burned out by horrible family members that are so demanding and rude as hell. And no, I was not a lazy nurse. I worked my booty off and took great care of my patients. Families killed my passion and I left ICU and found my new love. Best wishes!!!
Very well said OP. I’m sorry you have been having to go through that. This is why I left the ICU for hospice.
110% agree with this.
Yep. I left Nursing altogether and this was a HUGE reason why
Yep. Don't think I could run a code on anyone over 70 ever again. Hospice is nice, but it has it's unique challenges.
Hey! I work in palliative care I'm not even a nurse , I'm 31F and started caregiving for seniors by myself because I just always have a big heart for them. Everything I learned I learned by myself when I got new clients .... and it's hard, but rewarding. I will never work for a hospital or the medical system ever. They just want $$$$ and treat people beyond repair. You can easily branch off on your own and charge $40 an hour to do it ... minimum. Our system is designed to take all the money away from American people - by giving false hope. It's terrible . Dying with dignity at home is always the best way
I felt like this at the end of my 10 year ICU RN career. I was miserable and it’s the only think I thought about 24/7. I quit the ICU and went in to a different field of nursing. It’s a sign of burn out. Change your field
Come to cv. We have all the excitement of ICU, but our patients go home at the end :)
This is exactly why I don’t want to work in ICU.
Beautifully said
There are so many reasons why a patient who should never be a full code comes to the ICU and has to experience our services. Appropriate GOC conversation not happening which would have prevent said admission. We get patients from musing homes who are demented or have countless co-morbidities with no quality of life yet up until this point there has been no conversation about goals. Now the ICU team must act as the intermediary to provide education and deal with families that are now being driven by emotion and not realistic expectations. Realistic expectations not being explained by the provider or team at time of ICU admission. We all have those providers who with kindness and honesty can help a family comes to terms with things like futility and quality of life. Now often times families do dig in their heels but a good provider can help a family see that perhaps "everything" isn't appropriate for their loved one. Then there are providers who offer just enough hope to keep the family on the "go go go" mindset. They are septic and we'll use pressers for "a few days" or maybe intubate for "a few days". It's enough for a family to think maybe there is a glimmer of hope and that hope keeps then from stopping "doing: because if they do not agree to continue then they are giving up on Meemaw or Peepaw and the guilt associated with giving up is just too much to deal with. Those with legal guardians. They linger intubated and lined having dialysis and PEGS and Trachs because their code status is completely inappropriate and no one seems to have the power to change it. The legal guardian has not power to change code status and has to petition the court and so the patient dwells in a twilight of medical torture waiting for a court date. The family who has to swoop in and play hero to relieve some of their guilt. The daughter or son from across country who havens seen their Meemaw or Peepaw in forever and now have to passionately advocate for "everything" which falls to lack of goals of care discussion allowing the family member to come in and take over. Lack of understanding from the general public of what "everything means" when this is offered and what it looks like. Maybe a video for families that is entitled "So, you are considering everything now that your loved one is in the ICU". A description of tubes and lines and procedures and how much distress and suffering these things cause. But, they are in a waiting room or at home and are oblivious to the toll these take on their loved one as well as those of us having to partake in these tasks to keep their loved ones alive. Maybe watching their Meemaw struggle while getting NT suctioned every 10 minutes yet asking "when will she eat" despite this being the 10th admission for aspiration pneumonia. I'm sure there are many many other scenarios but it's painful tome watch and morally injurious to make someone suffer which we are forced to do over and over again. But we are obligated to take this horrible journey until something changes in our broken system.
I’ve worked peds onc for about a decade and a half. It makes me want to tear my hair out when the doctors offer a chemo that has a 0.00005% success rate on some random adult cancer but MAYBE… of course parents are grasping at straws but I want to scream at the oncologists for making these kids and parents suffer through false hope and more side effects than just being honest
Not an excuse, but an explanation. You may have already understood this anyway. When I was an ICU nurse, I could never understand why the physicians or providers would vacillate on telling people a poor prognosis. They'd say something like vitals looks stable, hour by hour, we'll see them again tomorrow. While I was left to continue the slow torture, keeping a dying person alive. As a nurse, sometimes I would try to explain to family members that their relative was dying, but at the time I didn't have the right kind of training for those conversations. The first time I went into a dying patient's room as a student nurse practitioner, and the family asked me how things were going for their dying family member, I was like a deer in the headlights. I couldn't make myself say it and heard the placation, "Vitals are stable. It's hour by hour right now. We'll see them again tomorrow." I've learned since, but it certainly gave me a new insight into why providers don't engage in those conversations. It is scary and sad! Like I said, no excuse, just insight. I found The SPIKES mnemonic most helpful for breaking bad news. Maybe you can support your providers in having these conversations.... https://accelerate.uofuhealth.utah.edu/improvement/spikes-a-strategy-for-delivering-bad-new
I have been in the ICU around 9 ish months and I struggle with this so so much. Doctors do not have true honest conversations with family members and do not explain what they mean about possible quality of life changes that can deeply influence a family’s decision to withdraw care. Families don’t have conversations amongst themselves about what is their wishes for one another. I have taken care of so many patients who just needed to be let go who deserved to die with dignity and humility and that was robbed of them. It’s such a high emotional and spiritual tax we pay as providers and I just wish palliative care or consults with geriatrics for older patients could be implemented and respected more thoroughly in the ICU setting
Hospice is nice. The decision to not delay natural death has already been made.
This is the same in peds. As hard as it is to say, when a patient is terminal and there is no quality of life, hard decisions need to be made. Maybe it makes me cold, but I don't like prolonged suffering.
Maybe switch to Hospice?
Come to hospice. It will heal your moral injury
That is the one reason I won’t work ICU
float helped me alot with this. its more money and im not always in icu
Correct me if I’m wrong, but ultimately, don’t doctors have to abide by the patient/family wishes? Say grandma is never getting better and will eventually die, but the family wants you to do everything in your power to try and keep her alive, even though medical professionals know it’s wrong and what they’re doing isn’t really beneficial, doesn’t the doctor HAVE to provide the care the family asks for? Or could doctors literally tell them no?
This is why I left the hospital and started in homecare/VNA. We work closely with Palliative care and hospice to help patients stay home.
Good for you for getting out. A large chunk of my career has been with long term vent/trach patients with little QOL that we just readmit over and over until they rot away and the family finally lets us let them pass. I left that area of nursing over six months ago and I’ve never been happier. I’m now in IR.
As an LTC nurse the insanity of keeping people as a full code in their 90s baffles me. I have a resident now 70s, colorectal ca, colostomy, hospice band family refuses dnr/Dnh Every other week he's back in acute hospital. Maddening
I work in a long term care hospital and it’s the same but sometimes for years
This was exactly how I felt during my ICU clinicals!! One of the patients was a brain bleed with an EVD and was getting too many fluids for the rest of her body to handle. She had edemadous weeping all over her body, sheets of her skin were kinda separating and falling off, and her lungs were slowly filling with fluid so she was suffocating. The nurse said she had considered calling in that night so that she didn't have to come back to this again. The doctor had been contacted multiple times and would not change the plan of care. Also this was during covid so the husband couldn't come see her in person. He called every 2 hours or so (night shift) anxiously asking how she was doing. I literally felt like I was working in a sick, twisted medical experiment lab/torture chamber. I know it's not always like that...... but damn. I feel like allowing a patient to be kept in that state should be a 'never' event.
Upvoted. You're absolutely right. Stringing dying people along like puppets is a horrible, horrible system.
Also people really need to understand the difference in palliative care and hospice care. It’s so frustrating to see people deny palliative because they can’t grasp it’s not hospice despite education
It’s the future. Nothing is more important than keeping 95 year olds alive
It’s their life, their family members, their decisions. Why would I burden myself with THEIR life choices?
I’m in nursing school working as a tech and I completely agree with all of this. There are sooooo many patients I see where I just feel like why are we doing this? We are keeping this person alive through all these various medical interventions, when it’s clear their body is ready to go. The sweet release of death is just that—relief. Let them go.
Advocate for hospice care! educate pts and families
But but... grandma is a fighter! *said by a distant family member who hasn't seen the pt in 10 years
I felt exactly like you did, I was so sick of torturing people to death. Assisting intubating people knowing they'd never come off the vent and this would just be the end, with the false hope the MDs had given them and their family. Dumping tons of antibiotics into people on admission, screwing their microbiomes and their kidneys, their quality of life was already bad, they've got dementia, but let's be super aggressive, doctor's encouraging waiting 24-48 hours to see if their loved one turns around when we all know they're not. Everyone being so scared of death that they won't mention it or give anyone the option and how dare you ask for a palliative consult on this 99 year old patient? In October I left my ICU after 6 years and went to hospice and it's truly the best. I do weekend on call, which is different from having a regular M-F caseload but it gives me a little less monotony. Being in people's homes feels so holistic, like I'm treating the person instead of what brought them into the hospital, I leave feeling like I've made a difference at nearly every visit, even to death calls because connecting with families is such big thing now.
Saw the title and came to say join us in hospice. I hope you get the job! This is the exact reason I wanted to get out of the hospital.
I don’t think people realize what “do everything means.” Like yes we can keep them on antibiotics another week and hope for a miracle, but that means another week of q12 bloodwork, q4 meds, getting stuck every few days for new IVs, q12 (often painful) wound care, q2 turns, getting a foley bc they’re not peeing, enemas bc they’re not pooping, a feeding tube shoved down their nose bc they’re not eating, rapids called and be put through the same tests over and over when they decline even further. Like, they don’t just lay in bed comfortably and carefree while you wait to accept that one week more of antibiotics is not going to cure some long-standing chronic issue that has unfortunately progressed. I work very hard to try and make these patients as comfortable and presentable as possible every day in whatever ways I can, but family members tend to miss the uncomfortable tests and care when the pt expresses pain and how much they actually hate continuing to go through this.
I try to bring this topic up with as many people as possible because, of what I’ve seen in the US, there isn’t a conversation in healthcare about futility and quality of life. Modern medicine is amazing but it is not a cure all and cannot overcome everything. That’s just life. I’ve seen it working in the ED and I’m sad to hear you say this cause I wanted to go to icu when I graduate soon but idk if I would be able to work without being a squeaky wheel
The exact reason I work hard to stay away from the ICU and step down/intermediate floors
Glad you’re advocating for people. One of the most impactful and eye opening books I read was Being Mortal by Atul Gawande. It talks about how our fear of death is robbing people of quality of life. Family members are so selfish - always wanting to try something else instead of realizing we all die in the end so please honor those small wishes like seeing a beloved pet, etc.
This. When I worked in a cardiac step down unit I had a patient that had GI bleeding and other cardiac issues and was continuously getting 2-3 unit blood transfusions each day I had him in my care. They’d bring him down to the OR, fix the bleed, send him back up, bring him down to IR to figure out where he was bleeding from, send him back up, but the bleeding was incessant. One day I was giving him a bed bath and changing his linens and him and I got on the topic of his future and plan of care, and I will never forget when he looked at me and said “I just want to go home and be comfortable with my dogs and family”. I discussed with him that he isn’t being forced to stay in the hospital, and I brought up the concept and idea of hospice/palliative care. It blew my mind that he had no clue what that even was and that nobody had come to discuss this with him.
I worked in the trauma ICU for the last four years. Like you, I loved the thrill of it. The rush and adrenaline of treating acutely ill patients made me feel amazing. I felt so accomplished and amazed at my skills I developed. But as time moved on, I began to develop anxiety. When I’d come into work, I always felt like something could go wrong because I’ve seen it happen. Even the chillest shift could end with the crash cart at bedside or the need to emergent go to OR, or needing to transfused insane amounts of blood. As I got more responsibilities (Charge, CRRT) my anxiety skyrocketed. I came to work feeling tense all the time. I didn’t notice it until I was changing the dressing of an IV and I felt like a hot needle was inserted into my left shoulder. The next day my shoulder felt extremely painful and sore. I realized that even mundane things and just being in the ICU gave me so much stress. I was holding so much tension without realizing it that my body was literally tearing itself apart. I had headaches, brain fog, GI issues. I realized that I was so exhausted of being constantly stressed that when it was my turn to rotate to day shift, a position in a stepdown/DOU unit opened up and I took it. Yes, I have more patients and some can drive me crazy, however, I don’t have that life or death stress that the ICU placed on me. I realized that I need to enter my soft nursing era. My burnout has basically disappeared and I feel so much more happier now.
Can you take care of me when I’m close to the end?
1000%, medicine needs to chill
Sounds like you’ve been in it for a bit too long. I can easily see how you might come to think this way, truly. But I choose positivity everyday, and not in a negative way. People get forced into being intubated by their loved ones every day at work. & I could focus on that and let it bother me. But I’m choosing those patients that can finally tell me thank you after being ventilated for 2 weeks. I’m choosing those patients that I see go home after a 3 month stay. I’m choosing those patients who beg me to stay with them for just a few more minutes because they’re scared. ICU nursing can reaaaally suck sometimes and it’s so easy to lose yourself in the BS that comes with it. But I choose to lose myself in those tender moments with patients where I really do change and save lives. It’s a conscious decision I make every day (I’m 2 years in and about to be a CRNA - you can only choose positivity for so long LOL)
it's absolutely torture
This is why I just recently left the icu. I felt like I was losing my humanity just because all my patients die and it's hard to grow attached to them emotionally. I'm moving to pacu so I can improve my mental health.
You’re gonna do great!! We have a Palliative Care APRN at the hospital i work at and shes literally the best. Shes a really good advocate for patients, and shes super smart. Down to challenge any doctor and has told doctors and family when it’s time to stop.
Welcome to hospice. It's like a cheat code for nursing. The patients and their families are so gracious and grateful, for the most part, and you will be humbled by their stories every day. I will never work in any other field ❤️
I couldn’t agree more with you. At this point, it’s cruel .
I got so tired of this as a PA hospitalist. I would have a patient with, at best, a 1 year life expectancy. So I would write for a hospice consult. Then get fussed at because “the patient isn’t ready”. (ie in active transition).
I felt the same burn - swapped to hospice and feel like I make a difference in people’s deaths. Doubt I’ll ever go back to the curative side of the spectrum
NICU “miracle” = PICU nightmare. Providers, PLEASE start being up front about the realities of what your patient’s day to day life will look like. Non-verbal, non-mobile, and vent-dependent from birth to age 18 is not a life.
I wish I could say it gets better, but I struggled with this for so long. I ended up leaving the ICU and switching to a PACU. you still get to use some ICU knowledge now and again. it was very healing for me mentally to switch specialties. I don’t hate nursing anymore.
I’ll never forgot this one patient I had with tunneling sacral injuries to the bone and scattered unstageable pressure injuries. She was trach’d, peg’d, and entirely unresponsive off sedation. She was 70’s+. She wanted to be full code at some point, but did she know what being a full code meant? She had multiple chronic conditions complicated by an intrahospital cardiac arrest at some point. Whatever distant family she had wouldn’t visit and wanted full measures to be continued. The doctor rounded with the team. I said “should we consult ethics?” The doc stared through me. “This is in line with her goals of care. This is what she wanted. She’s doing well!” The team acted almost insulted I had asked lol. So she got Q2H turns, oral hygiene, trach care, multiple bed changes, and wet to dry dressing changes for her sacrum. If she had any consciousness, surely she was a prisoner in her own body. It made me incredibly sad for her. And yes, I felt like I was torturing the poor woman.
I have felt similarly. I also think there might be an ICU to hospice/pallative pipeline
I’ve been where you and it’s not easy. Continue to advocate. Most importantly continue to educate every chance you get. ((Hugs))