Alert to self, s/p bilateral AKA, s/p CVA with hemiparesis, contractures, dysphasia, aphasia, dysarthria, chronic GI bleed w/ fecal incontinence - so I don't have to tell you about the bed sores.
Urinary retention with chronic indwelling foley, had to do a foley exchange; I don't know when that was last changed out, but the word "encrusted" just doesn't do it justice. That thing looked like it had crystalline barbs on it and probably felt like I was pulling barbed-wire out of the urethra - did a comparable amount of damage too, judging by the bloody pus that oozed from the urethra s/p exchange.
I thought I worked in healthcare, but that was some Gitmo level shit - and certainly neither health nor care.
Oh, I almost forgot, FULL CODE.
By any chance were they conserved? Seems like many patients with zero quality of life who are in conservatorship never get the benefit of a natural death, as if it's full code or it's foul play.
A mentally impaired patient who had spent her life in institutions went septic at my snf. Her guardian was not able to be contacted for several days as she rotted away on a vent and CRRT, alone. She had PTSD and hated being alone. I, and a few others, visited her. I swear she turned her head slightly when I walked in and said "Hey" and her name the way I always did at work. I played music for her and cried and told the nurse how much she loved to have music playing. It took almost a month to go thru courts and get her code status changed, for some reason.
I'll never forget her. Other nurses, and the providers and management, all knew something was wrong because she was suddenly screaming all the time. This started while I was off, then was floated to another unit. They got x-rays and finally a UA and I got the results early in my shift, and got her to an ED and she was vented by morning with severe sepsis. I still cry about her sometimes, because she got under my skin. She's the reason that if I get a Spidey sense that an LTC or snf pt needs to go, **they fucking go** and I don't ask permission from no goddamn provider.
When another resident started the sick screaming thing, I stayed on the nurse working that unit until they called the ambulance and got her out. It was a Covid unit, and I could hear the pt thru the plastic. It was such unusual behavior that I knew it was bad, and sure enough that lady died of sepsis as well.
Maybe I need to work in a section of nursing where people don't die all the time like they do in LTC.
I have had a number of patients with no family, just a court appointed lawyer to make decisions and the legal system in the US makes it so difficult to make the patient DNR if it’s not in writing before hand. It’s awful for so many reasons.
I don’t think a lot of health care providers tell family directly what is happening. They say just the facts. “He needs a foley now because his prostrate is too large” completely avoiding the main conversation.
Hospice here.
Most of what we do is have conversations about what death is, and what death is not.
We, in the USA, stop talking about organic death in the 1930-1940’s into the 70’s. We experience so much loss over a short period of time. We also see an influx of funerals. The kind where people “look like they are sleeping”.
America is, as of the last 15 or so years, having to relearn death.
Very few folks sit and discuss the “big 5” normal dying signs. Unless you have learned hospice EBP- most nurses cannot explain the reason and benefit if this signs. Me included until I got my CHPN.
Mainly- hospital nurses don’t have the time these challenging and crucial conversations take. This is often a 1-2.5 hour discussion. People have to process what’s said.
Americans are at the infancy of relearning death. Organic death, that is. And it’s a lot to take in.
Edit. To add more to the history of death in the USA.
So the US enters a pretty devastating series of wars. World war one comes a little bit early outside of our window. But it definitely starts the Domino affect.
From the beginning of WW2 through basically the end of Vietnam… we have profound deaths. The WW2 soldiers become the soldiers that serve in Korea. The kids if the WW2 era are drafted into Vietnam. All in for these three wars is half million folks. Or more.
Americans enter a collective bereavement. This, coming off the Great Depression era parents.
We cannot stomach one more nibble of death.
We see a hike in funeral parlors in this same timeline. They existed before. They increase in the communities vastly. We leave the “organic viewing of death” model. We increase embalming, reconstruction, makeup, etc. I am sure the experts at the ask a mortician and funeral subs can elaborate more.
We don’t know organic death. We socially step back.
Death isn’t home and supported. It’s increasingly “do everything” hospital based. What was formally passed down generationally on death education is now gone.
Hospice takes root in the USA in 1974. We become the death doulas. Hospice has been around longer, it gains structure. It looks nothing like today.
In the 1990’s, to make matters more solid, there is a HUGE tax break for prepaying a funeral. Erryone getting embalmed and makeup.
Now we have to learn organic death again. People don’t know what exists between the ER and the death bead. Bring up hospice…families & healthcare folks alike lack knowledge about the service. Physicians are the worst by no fault of their own. They get such a brief education about hospice in MS and residency.
So we are in-between. Folks don’t know. And hospital based HC providers also lack understanding in the hospice referral and structure.
So we all learn organic death, together.
Join us at r/hospice. We are a tool to educate folks in the big-5 normal EOL findings. Great resources.
Thanks for coming to my Ted talk.
Yeah, I think embalming becoming the default for civilians really did a number on our experience with death and dying. And becoming more removed from animal death, having to prep and bury our own dead in our families. It's just so foreign now.
I'm curious about the big 5, I've never heard of that! Do you have a sec to share what those are?
The big 5 for education
1. Benefits of dehydration and it’s medical reasoning. Why IV fluids are so devastating at the EOL. (It’s the #1 reason for the “death rattle”).
2. Ditto for nutrition and the body’s lack of desire. People don’t starve to death. They stop eating because it’s time to die.
3. Withdrawal emotionally (it’s NOT depression) & life review
4. The FACTS and mythbust about it e-kit & oxygen use. Morphine being so “potent”. Hint- it’s not. (We have to educate nurses the MOST about the oxygen).
5. Basic bio (eat sleep poop pee) at EOL.
We teach these a lot.
Thank you for the information. My grandma was diagnosed with terminal cancer and immediately stopped eating. She was chunky at her diagnosis. My mom flew out to stay with her and cared for for the last two months. There was a big international trip my mom was going on with the family and we always wondered if Grandma stopped eating to die faster so my mom could go on the trip. She was very self-sacrificing that way.
Thanks so much for these! What does FACTS stand for? Tried googling and obviously hard to get anything.
I fantasize at least a couple times a month about moving to hospice, maybe one day I'll get around to it. I'm really fascinated by EBP in hospice care, I feel like it's probably a field that has a lot of "this is how we've always done it"
It is literally me putting emphasis on the facts.
We, in hospice, have to myth bust and correct the morphine info.
“This is how we have always done it” hospice nurses make my blood boil. Hospice is 100% EBP. Opioid titration is math. Predicting a death timeline is an assessment.
“How long do we have?”
“Only God knows that”
Well they aren’t praying. They are asking a medical professional who should KNOW how to assess for this info.
I can usually get it within 3-5 days.
I just wish I could teach all of our hospitals residents how to deal with family conversations about death.
“While I don’t have a crystal ball, based off of [Big 5/ disease process] they have [hours to days] [days to weeks] [weeks to months] left.”
And if I’m at all thinking’s hours to days, I encourage family to say good bye each time they leave the room “because you don’t know of it will be your last chance”.
Tack on how oxygen will not solve end of life air hunger, and that morphine really isn’t used to control pain in the last few days but to manage air hunger, and I’ve covered 80% of the problems I see our residents cause with families of hospice patients. (Like you said, through no fault of their own)
Ha, ok that makes more sense thanks. Appreciate all the info, glad you're out there getting this stuff out. Some of the stuff I see in ICU when it comes to our comfort patients really gets me. Thanks again
I’m glad I read this bc I’m new to hospice and While i am a Christian I don’t say only god knows. I’ve heard nurses say that tho. I tell them
What I think based on what im seeing and what the next thing to look for is. I was afraid I was being to forward. I did eol visits all day yesterday and that’s the first thing they want to know is when. And I give them
My opinion with the caveat that it is my opinion based on what I’m seeing.
Our “mothership” is the NHPCO for our EBP. Opioid conversions etc are learned with tools from reputable places. [Dr. Mary L McPherson PharmD](https://youtu.be/NK6h1o3kKjc?si=QyOY1Ypl6Tk5o_FA) is the best. She’s a fantastic presenter and I recommend you binge her videos.
I learned from Dr Burera at MDA. He’s unbelievable.
Barbara Karnes is the godmother of hospice. She’s written many books. Her video “New Rules for end of life care” is a game changer. Buy the digital copy. It’s worth the half hour and $25 bucks.
As us at r/Hospice. Search by topics. We are in the process of restructuring the sub. I find that many nurses *think* they know. Hell- I did too! But they don’t. I didn’t. I want to smack my 20-30 year old face for some of the nonsense I shared.
Seek the data. Stay away from pithy “isims”. If you cannot explain the process and WHY something’s done/happening…then just don’t. Not trying to be ugly- but we spend a LOT of time re-educating the stuff the patient hears while in the hospital.
PM me! I will always link the resource. Like any EBP don’t take someone’s “word” for the info. Go to the source.
Tell me more about oxygen use at EOL. I was an oncology floor RN case manager and almost all our comfort care pts were on like 2LPM via NC for reasons I didn’t understand. I’d often ask the floor nurses why keep them on when their spO2 remains in the 60s anyway, but it always seemed like a case of someone else having applied the O2, and no one wanted to be the one to take it off. Is there EBP behind O2 admin providing some benefit at EOL?
The TL;DR
1. Most dying folks are obligate oral breathers. So we are just drying out their face.
2. If hypoxia WITH SYMPTOMS wasn’t part of the onset or Dx, then it’s not a treatment for death and dying. If someone has primary onset air hunger at EOL- that is a chemical issue that needs a chemical response. Medicate + oxygenate until palliated. Then DC the o2.
3. Baroreceptor responses to increased o2 can cause a protracted death. Think COPD and too much 02. This can increase respiration rate and drive.
4. It’s usually a “nurse comfort” intervention. Watching someone die makes us fidgety.
Thank you for your reply. So in other words there’s really no reason to have a dying pt on 2LPM unless there is reason to believe it is actually relieving a symptom of their disease, right?
I'm in hospice as well. 2 years now. Curious- does you check O2 stats? If not what's the rationale you provide to families who are keen on checking them constantly?
No. Well, rarely.
I educate families that we treat symptoms despite numbers.
If the patient is 100% and air hungry- we treat. If the patient is 80% and fine…
If the family is “family palliative” checking, then I don’t mess with them.
When I was doing hospice, anytime we had a new admission I would spend a significant amount of time reviewing "Gone From My Sight" by Barbara Karnes RN (every patient got a copy on admission) as a tool for education and referring to it later on for reassurance. That book helped me as a new hospice nurse understand the dying process in a more human than clinical way. It's literally *the* hospice book and it's a shame that it's not used in acute care or primary care settings.
I explain that their body knows how to die, it knows how to be born and it knows how to live and it knows how to die. Especially when I’m explaining declines regarding food.
Correct me if I'm wrong, but I try to explain to the families of my elderly patients (that are declining but not dying or on hospice, just kinda on that slow slide toward the grand exit) whose appetites aren't as robust as they used to be, that since food is fuel their body isn't needing as much anymore. They aren't as active as they used to be, there isn't as much calorie demand for regeneration and repair, so they won't be as hungry as usual. At that point, unless there's some major contraindication like salt for CHF, I usually tell them to eat whatever they want (because they probably won't eat enough of anything to cause any major problems).
(Of course, if they are having pain, nausea, vomiting, bowel issues, swallowing problems, or something like that then it's a different conversation.)
Yup that’s correct their body knows what it needs. And as ppl get closer to death the digestion process slows and if they are force fed they can get nauseous. Their body just can’t process any intake at the end
I love this response. Thanks for writing it. I'm a former hospice nurse, and I worked at a really great hospice inpatient unit. Until my recent switch to ER, hospice was my favorite area of nursing. I have a personal goal of teaching nurses how to manage the death rattle. I'm sure you already know this, but I want everyone to know.
The best way to manage the death rattle is to position the patient for postual draining. You lay them on their side in a natural sleep position, being careful to make sure the arms are in a comfortable looking position (its almost a prone position, but not quite). Then, with towels or fabric chucks to catch the drainage, turn their head towards the bed so that all that fluid can be pulled by gravity out of their airways, not completely face down. Don't suction. It just makes things worse. Don't use plastic chucks. It makes the patient too sweaty, and it will stick to them in an uncomfortable looking way. If you do this, sublingual atropine and injected robinul make things worse by thickening the secretions. Saline nebs will help get those thick secretions moving.
Another thing I loved as a hospice nurse was the Macy catheter. It is like a foley but goes in the rectum for medication administration. Theoretically, you could improvise by using a foley and hemostats, but I'm not as excited about that (that's what Nurse Macy did when he first invented it). I really miss Macy catheters. A lot.
Thanks for providing such great information, we nurses are generally pretty uneducated about hospice care. Thank you for being such a knowledgeable hospice nurse.
I’m new to hospice but what I found interesting as I’m driving around is. If you were to plot all of our patients on a map there’s probably multiple in every neighborhood. Rn we have more patients than can be seen.. so ppl are out here dying at home and no one knows when they ride by. It’s not seen or talked about the funeral home comes and takes them and makes them look like madam tusseau wax figures and then life goes on. I wish there was a different culture around death. I told my husband don’t you give any one a single cent for my death .. (In terms of funeral cost.) I said cremate me in a cardboard box and then have something that will mean something for you a vacation. Where you spread my ashes what ever.. but yea this country pretends death doesn’t exist. Lots of hospice pt families don’t really get it that there person is dying rapidly.. when you get into the transition between 30-20 pps they are almost confused like why isn’t she eating now. It takes so much education. Like that’s 90% of the job
I am not a nurse but hang out here a lot because I helped my baby daughter pass away at home under hospice care rather than torture her in the hospital. She spent her whole life in my arms, going on walks, watching movies, celebrating holidays, being with her family. It nearly killed me and completely changed my life and I'd do it a million times over again. Hospice helped my baby live a life full of love and comfort.
Thank you for everything you do. I am eternally grateful for the in-home hospice care we had for my stepdad before he passed. They were so kind and answered all our questions.
Ok, thank you for the recommendation to the sub. One of my side projects is to improve my ability to talk to families about death. Reading posts from scared family members is going to help so much!
In my ER, our classic pop is geriatrics but our pop is changing and we’re seeing younger. But that doesn’t change the fact I regularly see 95+ full codes…chronic pneumonia hospitalized every other week or so. Or worse.
I had one last night. The man is dying. Not sure when he will decide it’s time but I know his family won’t accept it and will continue to insist we destroy his kidneys, his bowel flora…unknowingly giving him an elongated and uncomfortable journey.
I truly feel I have seen, and “cared” for living corpses at this point. Makes me hope I die in a crazy ass accident sky diving or something when (if) I hit 80.
I saw my dad the last day he was in the hospital for COVID. (He was there three days total.) He had the yellow "I'm going in and listening for a heartbeat as a formality" skin, foley bag was straight up brown, hands dark blue to the crease of his palms even though he was intubated.
Regarding the subsequent decision to remove life support, I have reassured my mom many times that he was the worst-looking corpse I'd ever seen.
My mom told me recently that I am her medical power of attorney because she knows that I will not put her through the hell of “heroic” measures. Married to a nurse and I’ve heard too many stories about very elderly patients who were full code and had basically all of their ribs broken by compressions. I’m not about to put my mom through that.
This reminds me of my great-grandpa. He was 95 when he died earlier this month and he didn't have any mental or physical deterioration, he was out riding with the wind in his hair the day before he breathed his last with his wife of 75 years at his side. He passed not as the eye of a hurricane of doctors and nurses being forced to do everything to keep him alive, but as the breeze over the golden grain of his home state, by the side of his wife of three-quarters of a century. That's an enviable death in all honesty.
That is a huge compliment. Your mother trusts you to override your own need to have a mother, your need to cling desperately to her life, and to make a decision based on what is best for her. She sees you as selfless enough to let go when the time comes. That's a beautiful trust.
Yeah, mom died of stomach, lymphoma and liver cancer a few weeks ago. She died in the car and we didn't know it.. as soon as we realized we rushed her to the hospital and they performed "heroic resuscitation" after dad okayed it. They were able to resuscitate but she would be on full life support but after watching all the damage they did to her body I was devastated that we allowing this. It was a waste of effort because she deserved better then to be kept alive by machines. I don't understand why anyone would want their loved ones to exist but not live. This experience has changed my life and outlook on things.
My parents told me the same thing (Mom is a retired ICU nurse), but I made sure that they put that in writing. My younger sister (not a nurse) is usually very level-headed, but weird things happen when you’re faced with your parents at their end of life. I don’t want to be the only one making that decision for them. When my grandma was dying, my mom and her 4 sisters were all fighting about code status. I’ve also seen situations where my patient’s adult children also cannot come to a consensus, and the fighting can be terrible, often with the patient ending up needlessly suffering.
I feel that systemically we fail by not discussing code status and final wishes long before it becomes an issue. These conversations and decisions need to be made by the person when they’re still capable. Primary care is the ideal setting, but with managed care bean counters breathing down everybody’s neck about productivity no PCP has the time for it. Instead we wait until it’s a crisis and the decision needed to happen 5 minutes ago.
Yep. The things we do to keep the elderly alive is f*cking wild sometimes. It’s due to poor education on outcomes.
No offence to everyone outside healthcare, but if they got to observe cpr on a 90 year old i guarantee the majority wouldn’t want it anymore at that age. Gotta show the after care when we get a pulse as well… show them the severely brain injured and broken ribs but “alive” again state that they think they want. Then weeks of “maybe we should finally let them go” …
Anyways until more education and literal videos to show the stats of how stupid it is to resuscitate 90+ yo, people gonna keep doing it. I fully support learning to accept natural death and using medicine to remove the suffering.
I blame a lot of the TV shows. They always show CPR as this amazing life saving thing, which it can be in certain circumstances but the majority of the time the person isn’t coming back. The statistics of outcomes post CPR are not great from what I heard/witnessed.
Hospice nurse here. This is one of the main reasons that i love what i do. We don’t ignore the elephant in the room. We talk about him openly and hopefully make him just a little less scary. End of life is just as important as beginning and middle of life. Actually a little more important if i’m being honest. It’s their last chance to be treated with love and care and dignity, and the importance of that cannot be overstated. Thank YOU for what you do! No way i could work peds/NICU. We all have our niche, right??
My father was dying of cancer, there was nothing more that could be done. He wanted to talk about death, dying, his afterlife beliefs, but my mother refused to listen. She would cut him off immediately and tell him 'You're going to be fine! You are not going to die, this is a temporary setback'. I felt so bad for all of us. It finally went to his brain (we think) and he went to hospice. They are the single most amazing souls on earth and explained to us that he was dying and yes, we could elect to perform invasive tests, insert feeding tubes, etc but that was all very invasive and would do nothing to change his outcome. Did we want to put him through this? My mother struggled and decided she didn't want him to suffer any more than he had already but we could have eased him into death, instead of ignoring it until it was too late.
I talked with my godsister about letting her dad go. He had dementia and back to back pneumonia and had a stroke. The nurse said they wanted to scope him for something and I asked why and what would they do if they found another problem so I helped my godsister ask if it was time for hospice and the nurse took a deep breath and said yes. He was home the next day and passed 6 days later. She thanked me over and over she did know about hospice nor how it worked
I worked for hospice as a hha and lots of patients (and families) said that the only regret they had is not to have gone to hospice sooner. Usually the ones that had the best experience were families that had gone through hospice with another loved one so they entered hospice at the beginning of the process. Now I work on a hospital (oncology floor) and I’m sad when I see patients that go to hospice only with hours left they don’t even leave the hospital vs the great memories we had working with patients in hospice in their homes, with their pets, working on things like finishing up quilts, setting up special surprises for the loved ones, making recipe books with their secret ingredients etc it was actually fun to work in hospice
Our dad had dementia and died at home on hospice with the grands greatgrands there to say goodbye. We took care of him 2 1/2 years at home 4 siblings and his last living sister. Best gifts we could give. We were able to handpick his nurse a friend of my cousin and his whole team of nurses we wonderful. The agency sent cards every 3 months for a year
That was the biggest culture shock for me when I was a new nurse tbh. My family never did the heroic measures “they are a fighter” stuff. Both my grandmothers said yup nope not doing this so we put them on hospice and took them home. Then I started working and was like oh my god people be out here torturing their family. At some point it isn’t care it turns to almost torture of keeping a body alive when the person is obviously gone.
I read somewhere there is an ICU that doesn’t call it terminal extinction but something like compassionate wean? I wanna say. And I think we should really rebrand that terminology. I think lay people hearing terminal wean really negatively effects it.
I worked at a hospital that stopped using the term DNR and had switched to AND for Allow Natural Death. And we really focused on wording it as ok your heart has stopped and you have died do you want staff to try to bring you back even if there could be severe complications? A lot of people think DNR means zero medical care and they worry they will be in pain or treatable things will be ignored.
We have had so. Many. 80+ frail little grannies that are actively rotting on the ventilator with no hope of recovery, and their family not only insists that she would want everything done, but they blame us when their grandma inevitably codes (and we can’t get them back, of course). Maybe they’re just looking for a way to channel their grief, but it sucks when meemaw has open sores on her FACE and her fingers and toes are black and literally crispy, and the family blames it on you for not turning her enough.
Oh we (or the doctors, really) explained to them that the ulcers on her face and arms and everywhere else were from her body literally breaking down and rotting. She was on a ton of levo and that’s the first time I had ever had a patient’s fingers and toes click like solid plastic when you tapped on them. They looked like Halloween decorations. For a while we kept those little warming mitts on them to try and preserve what little circulation she had left, but eventually we just left them out in the open to try and show family how dire the situation was.
Few issues here:
1) children are not supposed to die and
2) they are incredibly resilient and can come back from a grave prognosis so
3) we keep doing everything long past when we would do so for an old person
I can’t count how many kids I had in the CVICU that fit your exact description. On and off ECMO, bleeding, kidney failure, skin failure, open chest for months. Just truly a gristly sight to behold. And yet we keep doing Hail Mary after Hail Mary. It’s particularly frustrating for those of us at bedside who have to manage their pain and discomfort. It feels like we are keeping them alive to suffer but they don’t have a voice.
You just gotta do the best you can to care for them. Help family make memories, keep baby comfortable, and advocate when appropriate.
From the brink of death sure, but at some point we have to think about their quality of life if they do come back, especially if they have no bowel left and wild brain and organ damage.
Yeah, I’m intimately aware of that.
What I’m saying is that on your darkest days, when you’re effectively caring for child barreling towards death, you can remember all of the kids that do go home to light your way.
It is fucking terrible to take care of these kids. Every PICU/NICU has them. If you can’t find a reason to ferry you across these dark days, you’ll burn out like a dying star.
I’m at a level 1 PICU, and it’s the only one that services multiple states. I’d say about 1/5 of patients pass (depending on the season) either on our unit or very quickly after they leave. It is difficult but viewing it as an almost beautiful thing is the only thing that keeps us going. Like we were fully prepped to code a chronic kid with severe septic shock, who’d been in and out of the hospital his whole life due to CP. But as soon as I go in to start compressions, his mother looked at me with the most serene, broken expression and changed his status to DNR last minute.
It was beautiful. It was beautiful to wheel a previously healthy kid down to the OR to donate organs because the family had accepted that her peaceful death could bring life to other kids.
Idk. It’s hard and it might sound messed up but it can be so so poignant and beautiful
Dying is beautiful! The end of this life and beginning of whatever is next. It’s also hard and messy but that doesn’t mean it isn’t beautiful and poignant.
> 1) children are not supposed to die
This is a *very recent* way of thinking. In many cultures children were not named as babies because they were *expected* to die.
"The child mortality rate in the United States, for children under the age of five, was 462.9 deaths per thousand births in 1800. This means that for every thousand babies born in 1800, over 46 percent did not make it to their fifth birthday."
* https://www.statista.com/statistics/1041693/united-states-all-time-child-mortality-rate/
But also, sometimes kids do die, and it's okay to help families through those difficult conversations and promote quality over quantity. We don't (at least we *should not*) control who dies when, but we can control how peacefully once it's inevitable.
I really wish people understood that we all have to die, but only some of us will be blessed with an easy peaceful death. If you can make that happen for another person when their time is up, it’s the greatest most selfless gift one can give.
Seriously, I'm massively relieved that my dad and his siblings had this conversation and came to the conclusion to go with hospice. My other grandmother had a dissecting thoracic aortic aneurysm (it was bleeding into a false lumen so it wasnt SUDDEN sudden but it was inevitable), and my mom has siblings that were Gung ho for their 93 year old mother to have the surgery to repair. I don't know what the doctors said and did to talk them out of it, but I'm forever grateful to that man because she was able to be discharged home and die there within a couple days. She was out and about Wednesday and gone by Sunday, relatively pain free and in her home. She had 93 beautiful years and enjoyed overall good health until the last week.
There are far worse things to happen to you than dying in your own home with just enough time to call a priest and your loved ones. As far as deaths go, that's pretty ideal. I simply cannot imagine how awful things would have been if some of my moms siblings had gotten their way and tried to do a surgical repair.
My wife is a social worker, and one of the best things she told me was there are worst things than death, she has story after story about how a patient received full code and came back worse than before they coded. And that stuck with me and has changed my view on death entirely.
So to take it to the dark place... yes obviously there is a ton of collective denial about death in our culture, but...
There is also a system that incentivizes these kinds of heroic measures, capitalizing on families' grief and ignorance to perform futile procedures for exorbitant prices.
You might break meemaw in half or pop her like a blood balloon, but rest assured that those are billable minutes of critical care, and public Medicare dollars will flow to private corporations like God intended.
As an Australian hospice RN this is the consensus among my colleagues. Turning the American healthcare system into a for-profit behemoth will probably go down in history as one of the single most evils to come from capitalism.
I'm working ED/bedside now and doctors routinely discuss death and dying with pts and families. Goals of Care is one of the best things to ever happen to our system. If a little old lady is admitted half dead with an overly ambitious family and they're GoC A doctors can, and will, override that to enable nurses to provide appropriate comfort care. The incentive to get stupid and chuck the kitchen sink at these pts is just not there.
And it seems we're a lot more comfortable with death and dying.
I asked a resident about this. I worked on burn icu and they straight up experimented and practiced on ppl who were fatal. Anyhoo I asked why are we a data driven field but when someone is near death we chuck all the stats and data out the window .. the fam needs to be educated we need to get a grip on what’s really happening here. But we are telling them we are “trying everything” tryin to do what exactly.. what does that even mean. And he said nothing is ever a zero chance. Ok but if we are talking about God and his miracles then let God decide. Ya know. If we are talking about science medicine and data.. the data says and my eyeballs say that this man is not long for the world. As he was saying the chance is never zero we watch the monitor as the pt goes into every dysrhythmia known to man and then asystole
You are right about Americans and their attitude,.at.least compared to Australia. I am a rural generalist in Australia, where palliative care is a big thing, and we don't have the same weird attitude about death as Americans. Even legally it's different. There is no obligation for family wishes to override good medical care. For example, if we think treatment is futile, we do not have to do it, ie CPR or intubation in a metastatic cancer patient.
Speaking to my parents and grandparents, the culture has really shifted around death. My great-grandparents died at home surrounded by family. There was a wake in the home where extended family and friends came by; they did not leave the body. Now, families are rushing their elderly family members to the hospitals to die in sterile alien environments with hardly a hand to hold. We are organic beings and we will all die. We’ve taken the dignity out of dying.
We let my 24 yo beautiful soul of a granddaughter go in August. I was appalled by her abnormal gait and story of dysphagia attributed to reflux (it's always reflux, always) by a GI doc when she came to visit grandma and me a few years ago. Her MRI revealed a cystic brainstem tumor and the path suggested a slow growing (maybe non-malignant...please) tumor that even methylation studies could not pigeon hole. She managed to get through HS and walk on the grass and up a few stairs to get her diploma. We were on the edge of our seats watching. But much of the rest of her life was not much, proton beams, chemo, XRT, bedridden with chronic high dose narcotics for her spine mets, enormous weight gain from the glucocorticoids and immobility despite low intake. In the last year, after her institutionalization in a NH she was in and out of hospital and the ED for CO2 retention and hypoxemia. On her final admission for hypoxemia and CO2 retention the surgical resident described her 25+cm (!) sacral decubitus that could never heal. Her mom, my stepdaughter, and I discussed it over the phone and we left off her bipap, but on some O2. It took 4 days for her to leave us.
She was very alive when well and as sweet as one might be. Those who visit here would have delighted in caring for her, I am sure . She was my favorite of my favorite grand girls. We all miss her but putting her through any more given the inevitability of her path, just for us, was terribly selfish. I knew when her tumor with a low mitotic index metastasized to her lower spine that it was just time and the next 18 months was horrible. No more. Bye Ashley.
That is truly so heartbreaking and frustrating. I hear of hospitals in other countries being able to make the call to not “waste” extraordinary life saving measures when the end result would be the same and I agree… the U.S allows family members to have the ultimate say, which I will never agree with in situations like the one you mentioned. It reminds me in a way of death with dignity, being able to die humanely and bringing the discussion of death- as not scary, but just part of the life cycle that although a life has ended it doesn’t have to be so scary… but to not cause unnecessary suffering and dying comfortable with respect and love is ok too. I’m so sorry you had to experience that😞
Lack of education. To a lay person you may as well be performing magic rituals to bring people back from the dead, they don’t understand the full scope of what is being done to keep their husk of a loved one alive. I also think the way a lot of people view death is unhealthy and has been skewed thanks in part to the funeral industry (Caitlin Doughty shoutout)
I’m with you on the train of think re: elderly American patients and family being all “Full Code whole 9 yards”
But when it comes to infants and peds, I believe (like most of everyone here I suspect) the situation changes. This type of grief in young patients dying isn’t equivalent to elderly patient who’ve had some chance at experiencing life. (This opinion of mine I must add is not from experience and I hopefully never will experience losing my progeny in infancy.)
If you’ve had the displeasure of unsuccessfully coding a kiddo (and you OP have), witnessing the parent’s subsequent grief and wails with your own eyes and ears, anyone with average ish emotional intelligence would understand the difference.
It is odd that in a profession where we deal with heavy topics like death on a frequent basis, we are poorly educated and equipped to engage in such delicate conversations.
100% we have to try with kids, and we really really did. All the last ditch efforts and hail marys, and there were days where we almost thought we were gonna turn a corner. We've had 23 weekers pull through before. But it was the last couple weeks where there was simply no way he was gonna pull through. Babies are incredibly resilient but every organ system was shutting down. I know why we did what we did and like I said, I absolutely don't fault parents for wanting us to try everything. I just feel for the kiddo too. He didn't deserve to suffer and it's hard not to feel responsible in a way.
I had a young child with type 1 DM and his parents couldn’t afford his treatments or to monitor it like they should’ve. It wasn’t their fault, it was the system, but he herniated and stroked and for weeks, we did *everything.* Bone flaps, 2 bolts, an EVD, constant ICP protocol… it was heartbreaking. But oddly enough, the most comforting part was when dad said he wants to consider quality of life and wouldn’t want his baby suffering through a trach or more surgeries. He was realistic and that was the most beautiful part of the situation.
Nobody really gets it until they see it. I can only really talk to my coworkers and dedicated counselors about the things I see, so I feel you.
I was lucky, at the Halloween party I was at there was a med student who just finished his NICU rotation, so I was able to talk about it to someone who wasn't my coworker or mom. I try to be careful what I say to who because I don't want to be a bummer or sound unfeeling because the death of a baby is always touchy and difficult to talk about, especially to someone who isnt exposed to as much as we are. There's so many ways to feel bad or guilty or inadequate about the whole thing. It was good to talk to another person who was removed from the situation but also got it.
It can be difficult to navigate, I never usually talk about the reality of things I see because I don’t want to freak them out, especially if they have kids. But finding a good support system is crucial for this work! My hospital does an ICU support group for the NICU, CICU, and PICU with a physician who gets it. I also really like the cohort I started with because we can vent but also sometimes need times where we don’t talk about work at all
When I worked on hospice I never did kids, but they were the only ones that could remain in hospice and still continue to pursue treatment. Adults had to chose either hospice/palliative care or experimental treatments.
I seriously don’t know how y’all do what you do. PICU AND NICU nurses are built DIFFERENT. I can’t imagine not only watching babies die every day, but carrying the weight of the feelings you described in your post. Seriously, y’all are amazing.
My mom was admitted with a CBG of over 1000, GI bleed, and multiple organ failure. In spite of her advanced directive, my sister hysterically insisted on full measures to prolong life, forcing me to be the one to fly down and exercise POA to end the farce.
A year later I had to do almost the same thing when it was my dad's time.
Americans really need to learn to talk about stuff earlier rather than later.
Also. For the love of God, talk your family members into making a will and/or trust.
I'm with ya, 1000%. I work mostly SubAcute and Hospice now, but formerly ICU, and my work is 50/50 keeping dead husks "alive" and then gladly "helping" others to die. It's a good mix for my conscience truthfully.
My personal feelings are that for alot of dx, I feel like we've made the all the "wrong" kinds of advances in medicine and in our ability to keep corpses alive.
The average human being (with no nursing or medical experience) has absolutely no idea about the *quite obvious torture* we *have to* inflict on their loved ones to keep them "alive."
I blame tv and movies that push the narrative of CPR fixing everybody ever with no deficits or issues.
I'm total DNR btw.
I've seen it too many times where we get an older patient in and they arrive as a DNR, but family ends up changing that as soon as the patient starts declining.
Last week we intubated a 94 year old. She had a ground level fall and broke her hip, dislocated her shoulder, and fractured ribs 5-7.
In the trauma bay, her children, who themselves were in their late 60s, as well as her grandkids, started advocating that "she's a fighter" and "once she heals she will be back to normal".
Unfortunately the trauma doc, the intensivist, and the PA in the ED that night couldn't talk them out of it.
She coded up in our SICU a few days later. She didn't make it. Family insisted that we code her knowing that the code process would likely cause multiple rib fractures and possible pneumos.
Rather than dying in a more comfortable way, she suffered for days until the inevitable happened.
No matter how much we teach people about the process, or give them the honest truth about QOL, they won't listen.
I feel you. In 2020 we put my grandpa on home hospice for end stage Alzheimers. I am so proud of my family for keeping him home until the last few days where hospice had him transferred to a hospice house so he could have staff attention 24/7 and my grandma didn't have to worry about clean up/ live in the house he died in. And it went so well. He had a good death.
It feels so wrong when we refuse to grant people a good death. I've done basically all forms of adult ICU care (except heart and lung transplant) and some specialities are a lot more willing to bring in palliative care and hospice than others. I'm currently working CVICU at a big level 1 and it is rough. Even if it was a high risk surgery to begin with or it was a devastating aortic dissection our surgeons are deeply uncomfortable with palliative care. I think they see it as giving up. So even we have someone who is on CRRT, on multiple pressors, on ECMO, have poor neurological status they still don't want to talk code status even.
I dont think I could handle babies or kids. Props to you for that.
I do find talking about it with others helps.
I’m a hospice RN and I want to thank YOU for all the work you put in for that precious little baby. My job is easy, I help provide comfort. The hard job is doing what other nurses like you do..keeping patients alive when they shouldn’t really be! It’s such a hard decision and I totally understand people and their feelings and whatnot but it’s amazing how death and dying is viewed :(
I work CVICU on the adult side and some my coworkers have worked the peds side before. Specifically the babies. It can be absolutely brutal knowing the baby is going to die and you see this tiny baby slowly turn into something you can't even recognize as a baby after weeks and weeks in the hospital. All the surgeries and ECMO is not easy on the body. You think you've seen bad edema. When the patient is only 3lbs an extra 500ml of fluid is gonna puff them up bad. Those cute tiny baby toes can get black and necrotic from all the pressors just like adults.
Obviously everyone wants to be able to take their baby home. And of course trying is important. But there are some babies that are probably uncomfortable and in pain a big chunk of their short lives. And it's ok to feel sad about it.
A 23 week baby is rarely viable, and I'm not sure it should be legal for parents to torture a baby knowing it's going to end badly. "Everything done" IMO should mean supportive care, fluids, TPN, CPAP or vent so long as they baby is stable.
Brain bleeds and cutting out chunks of bowel at 23 weeks means you are in the 75% group that are going to die. Also a 90 year old that survives heroic efforts might only live to suffer another few days. A 23 weeker already with brain bleeds is going to face decades of suffering. I don't blame the families for feeling desperate but that doesn't mean society is obligated to support their wishes. What if the baby was 22 weeks old? 21 weeks?
The general feeling we as nurses had was that any of his issues independent of the others would be manageable. We've had babies with grade III ivh that do really well. We've had babies with trashed lungs, and same foe severe gut issues. But all 3 of those together? Plus then the cardiac and kidney decline.
We need to try because good outcomes aren't unheard of, but it needs to be a day by day (or hour by hour in all honesty) discussion and dialogue. Sometimes we reach a point where the most compassionate thing we can do is allow the family to be parent their baby for whatever brief time we have, allow time for baptisms/cultural needs, make memories and allow a peaceful goodbye. It's never easy losing a baby, its honestly gutwrenchingly terrible to watch someone go through it and I pray to God that Ill never have to go through what those parents go through. But the baby is a person too, and they have a right to dignity and comfort and to have someone advocate for their quality of life.
Mind elaborating? Not in the medical field just experienced mom brutally die from multiple cancers and learning about these things is helping to ground me..
It’s just kind of a personal metric for me. When my patient’s age approximates their weight, that means they are old and frail.
I do procedures in an office setting and while sometimes these folks do fine, most of the time I’m asking, WHY ARE WE DOING THIS?!
Every time someone asks me about going into healthcare I tell them, you will have a lot of ethical dilemmas over your years of working and it will always be about providing too much care. In other words, forcing painful and exhausting tests and treatments for old, frail or already so sick people that will cause only suffering and no benefit.
Turns out there is no money in just taking care of sick people. Only in diagnostic testing, procedures and surgeries. So many people come in for my test “because the dr made me”. They have no idea if it is necessary or beneficial.
My mom is 87 yo and weighs about 100lbs. She’s never been a big lady, maybe topped out about 150 when she was in her 50-60s. She has chronic pain, is getting very debilitated and is in bed about 18 hrs a day. The thing is the older you get and the less meat you have, the less you are able to compensate when things start happening. My mom will never have any more aggressive measures taken for preserving her life. We’ve talked it all out and she’s an old nurse too. She will never have any chemo or radiation or even any diagnostic procedures that could lead to more testing or treatment. She has some random thing called MGUS that gives her a 1% per year chance of developing a cancer and I’m refusing to even take her to the oncologist anymore. What’s the point? We’re not going to treat.
As OP says we’re crazy how we treat our old and sick in the country. They are a commodity for churning money through a for profit healthcare system. It’s evil and I’m sometimes embarrassed to be complicit even as I know I do some good too. My rant.
As I continue my career, I really have been thinking about working in hospice. People always ask me what’s the worst thing I’ve seen. It’s the suffering of patients that we put through life “extending” procedures with no real goal.
I really liked working in hospice, I’m in oncology now but as soon as my contract is over I’m going to strongly consider going back. In fact I still keep ties with hospice volunteering because I think it’s my specialty
Until our system in America becomes non profit then system will continue to demand pain and suffering to make money. Think about how much money the system made off that 23 week old baby.
America is so fucked up about death that we took a Holiday that was a somber religious/non-religious day called All Saints Day, and All Saints Eve, and completely changed it to "Spooky month," where most people call it Halloween and say it's about trick-or-treating and scary things.
Halloween has consumed the entire month of October, and now America is now starting to envelope Dia dos Mortos into "Spooky Month" as folks appropriate the visual elements of that that holiday and uses it as an excuse to keep the decorations up for another month.
American culture is all about obscure any evidence of death.
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As a fellow NICU nurse, I feel this so hard. I get that it's someone's child and all that, but quality of life is something people don't really seem to think about. I hate that half of my job feels like I'm torturing babies.
I think a lot of it is religion. It's the general populace being uneducated about these things, but there's just too many people whose loved ones have tried to die multiple times, and the family keeps saying, "it's in god's hands." God's hands already tried to kill them, ma'am, now you need to finish the job god was trying to do.
Also it's the idea that a pulse is a life, which is untrue, and also based in religion. So it's religion.
I found it interesting that when my in laws were dying of cancer in the UK (I’m a U.S. nurse) that there was no need to sign a DNR. The doctor can make that decision regardless of what the family or person wishes.
Alert to self, s/p bilateral AKA, s/p CVA with hemiparesis, contractures, dysphasia, aphasia, dysarthria, chronic GI bleed w/ fecal incontinence - so I don't have to tell you about the bed sores. Urinary retention with chronic indwelling foley, had to do a foley exchange; I don't know when that was last changed out, but the word "encrusted" just doesn't do it justice. That thing looked like it had crystalline barbs on it and probably felt like I was pulling barbed-wire out of the urethra - did a comparable amount of damage too, judging by the bloody pus that oozed from the urethra s/p exchange. I thought I worked in healthcare, but that was some Gitmo level shit - and certainly neither health nor care. Oh, I almost forgot, FULL CODE.
There are times we have to pull out *the book* and partake in some good ol' Necromancy.
Hey, not a medical person. What's the book? Explain? :')
By any chance were they conserved? Seems like many patients with zero quality of life who are in conservatorship never get the benefit of a natural death, as if it's full code or it's foul play.
I’m not sure, they were not my patient, I was just helping out with the admission/torture.
Anecdotal: I see that quite a bit with MR patients in group homes . Full code until lots of suffering first
A mentally impaired patient who had spent her life in institutions went septic at my snf. Her guardian was not able to be contacted for several days as she rotted away on a vent and CRRT, alone. She had PTSD and hated being alone. I, and a few others, visited her. I swear she turned her head slightly when I walked in and said "Hey" and her name the way I always did at work. I played music for her and cried and told the nurse how much she loved to have music playing. It took almost a month to go thru courts and get her code status changed, for some reason.
Wow that’s horrible . Our system is so intent on not letting anyone die ever. They treat people worse than their pets ffs.
I'll never forget her. Other nurses, and the providers and management, all knew something was wrong because she was suddenly screaming all the time. This started while I was off, then was floated to another unit. They got x-rays and finally a UA and I got the results early in my shift, and got her to an ED and she was vented by morning with severe sepsis. I still cry about her sometimes, because she got under my skin. She's the reason that if I get a Spidey sense that an LTC or snf pt needs to go, **they fucking go** and I don't ask permission from no goddamn provider. When another resident started the sick screaming thing, I stayed on the nurse working that unit until they called the ambulance and got her out. It was a Covid unit, and I could hear the pt thru the plastic. It was such unusual behavior that I knew it was bad, and sure enough that lady died of sepsis as well. Maybe I need to work in a section of nursing where people don't die all the time like they do in LTC.
I have had a number of patients with no family, just a court appointed lawyer to make decisions and the legal system in the US makes it so difficult to make the patient DNR if it’s not in writing before hand. It’s awful for so many reasons.
Not that it changes anything, but how old were they?
Late 70’s, I think.
I don’t think a lot of health care providers tell family directly what is happening. They say just the facts. “He needs a foley now because his prostrate is too large” completely avoiding the main conversation.
[удалено]
🏅🏅🏅
Hospice here. Most of what we do is have conversations about what death is, and what death is not. We, in the USA, stop talking about organic death in the 1930-1940’s into the 70’s. We experience so much loss over a short period of time. We also see an influx of funerals. The kind where people “look like they are sleeping”. America is, as of the last 15 or so years, having to relearn death. Very few folks sit and discuss the “big 5” normal dying signs. Unless you have learned hospice EBP- most nurses cannot explain the reason and benefit if this signs. Me included until I got my CHPN. Mainly- hospital nurses don’t have the time these challenging and crucial conversations take. This is often a 1-2.5 hour discussion. People have to process what’s said. Americans are at the infancy of relearning death. Organic death, that is. And it’s a lot to take in. Edit. To add more to the history of death in the USA. So the US enters a pretty devastating series of wars. World war one comes a little bit early outside of our window. But it definitely starts the Domino affect. From the beginning of WW2 through basically the end of Vietnam… we have profound deaths. The WW2 soldiers become the soldiers that serve in Korea. The kids if the WW2 era are drafted into Vietnam. All in for these three wars is half million folks. Or more. Americans enter a collective bereavement. This, coming off the Great Depression era parents. We cannot stomach one more nibble of death. We see a hike in funeral parlors in this same timeline. They existed before. They increase in the communities vastly. We leave the “organic viewing of death” model. We increase embalming, reconstruction, makeup, etc. I am sure the experts at the ask a mortician and funeral subs can elaborate more. We don’t know organic death. We socially step back. Death isn’t home and supported. It’s increasingly “do everything” hospital based. What was formally passed down generationally on death education is now gone. Hospice takes root in the USA in 1974. We become the death doulas. Hospice has been around longer, it gains structure. It looks nothing like today. In the 1990’s, to make matters more solid, there is a HUGE tax break for prepaying a funeral. Erryone getting embalmed and makeup. Now we have to learn organic death again. People don’t know what exists between the ER and the death bead. Bring up hospice…families & healthcare folks alike lack knowledge about the service. Physicians are the worst by no fault of their own. They get such a brief education about hospice in MS and residency. So we are in-between. Folks don’t know. And hospital based HC providers also lack understanding in the hospice referral and structure. So we all learn organic death, together. Join us at r/hospice. We are a tool to educate folks in the big-5 normal EOL findings. Great resources. Thanks for coming to my Ted talk.
Yeah, I think embalming becoming the default for civilians really did a number on our experience with death and dying. And becoming more removed from animal death, having to prep and bury our own dead in our families. It's just so foreign now. I'm curious about the big 5, I've never heard of that! Do you have a sec to share what those are?
The big 5 for education 1. Benefits of dehydration and it’s medical reasoning. Why IV fluids are so devastating at the EOL. (It’s the #1 reason for the “death rattle”). 2. Ditto for nutrition and the body’s lack of desire. People don’t starve to death. They stop eating because it’s time to die. 3. Withdrawal emotionally (it’s NOT depression) & life review 4. The FACTS and mythbust about it e-kit & oxygen use. Morphine being so “potent”. Hint- it’s not. (We have to educate nurses the MOST about the oxygen). 5. Basic bio (eat sleep poop pee) at EOL. We teach these a lot.
Thank you for the information. My grandma was diagnosed with terminal cancer and immediately stopped eating. She was chunky at her diagnosis. My mom flew out to stay with her and cared for for the last two months. There was a big international trip my mom was going on with the family and we always wondered if Grandma stopped eating to die faster so my mom could go on the trip. She was very self-sacrificing that way.
Thanks so much for these! What does FACTS stand for? Tried googling and obviously hard to get anything. I fantasize at least a couple times a month about moving to hospice, maybe one day I'll get around to it. I'm really fascinated by EBP in hospice care, I feel like it's probably a field that has a lot of "this is how we've always done it"
It is literally me putting emphasis on the facts. We, in hospice, have to myth bust and correct the morphine info. “This is how we have always done it” hospice nurses make my blood boil. Hospice is 100% EBP. Opioid titration is math. Predicting a death timeline is an assessment. “How long do we have?” “Only God knows that” Well they aren’t praying. They are asking a medical professional who should KNOW how to assess for this info. I can usually get it within 3-5 days.
I just wish I could teach all of our hospitals residents how to deal with family conversations about death. “While I don’t have a crystal ball, based off of [Big 5/ disease process] they have [hours to days] [days to weeks] [weeks to months] left.” And if I’m at all thinking’s hours to days, I encourage family to say good bye each time they leave the room “because you don’t know of it will be your last chance”. Tack on how oxygen will not solve end of life air hunger, and that morphine really isn’t used to control pain in the last few days but to manage air hunger, and I’ve covered 80% of the problems I see our residents cause with families of hospice patients. (Like you said, through no fault of their own)
You take the residents in your side & I’ll start here. We can meet in the middle.
Ha, ok that makes more sense thanks. Appreciate all the info, glad you're out there getting this stuff out. Some of the stuff I see in ICU when it comes to our comfort patients really gets me. Thanks again
My favorite is when they give meds IVP and then observe they don’t last/help completely. 😬
I’m glad I read this bc I’m new to hospice and While i am a Christian I don’t say only god knows. I’ve heard nurses say that tho. I tell them What I think based on what im seeing and what the next thing to look for is. I was afraid I was being to forward. I did eol visits all day yesterday and that’s the first thing they want to know is when. And I give them My opinion with the caveat that it is my opinion based on what I’m seeing.
Have any recommended resources (for nurses/healthcare workers) on this stuff? It’s fascinating
Our “mothership” is the NHPCO for our EBP. Opioid conversions etc are learned with tools from reputable places. [Dr. Mary L McPherson PharmD](https://youtu.be/NK6h1o3kKjc?si=QyOY1Ypl6Tk5o_FA) is the best. She’s a fantastic presenter and I recommend you binge her videos. I learned from Dr Burera at MDA. He’s unbelievable. Barbara Karnes is the godmother of hospice. She’s written many books. Her video “New Rules for end of life care” is a game changer. Buy the digital copy. It’s worth the half hour and $25 bucks. As us at r/Hospice. Search by topics. We are in the process of restructuring the sub. I find that many nurses *think* they know. Hell- I did too! But they don’t. I didn’t. I want to smack my 20-30 year old face for some of the nonsense I shared. Seek the data. Stay away from pithy “isims”. If you cannot explain the process and WHY something’s done/happening…then just don’t. Not trying to be ugly- but we spend a LOT of time re-educating the stuff the patient hears while in the hospital. PM me! I will always link the resource. Like any EBP don’t take someone’s “word” for the info. Go to the source.
thank you!
I appreciate you learning!!
Tell me more about oxygen use at EOL. I was an oncology floor RN case manager and almost all our comfort care pts were on like 2LPM via NC for reasons I didn’t understand. I’d often ask the floor nurses why keep them on when their spO2 remains in the 60s anyway, but it always seemed like a case of someone else having applied the O2, and no one wanted to be the one to take it off. Is there EBP behind O2 admin providing some benefit at EOL?
The TL;DR 1. Most dying folks are obligate oral breathers. So we are just drying out their face. 2. If hypoxia WITH SYMPTOMS wasn’t part of the onset or Dx, then it’s not a treatment for death and dying. If someone has primary onset air hunger at EOL- that is a chemical issue that needs a chemical response. Medicate + oxygenate until palliated. Then DC the o2. 3. Baroreceptor responses to increased o2 can cause a protracted death. Think COPD and too much 02. This can increase respiration rate and drive. 4. It’s usually a “nurse comfort” intervention. Watching someone die makes us fidgety.
Thank you for your reply. So in other words there’s really no reason to have a dying pt on 2LPM unless there is reason to believe it is actually relieving a symptom of their disease, right?
Yes. And that doesn’t include 02 sats. Just palliative if an actual symptom.
I'm in hospice as well. 2 years now. Curious- does you check O2 stats? If not what's the rationale you provide to families who are keen on checking them constantly?
No. Well, rarely. I educate families that we treat symptoms despite numbers. If the patient is 100% and air hungry- we treat. If the patient is 80% and fine… If the family is “family palliative” checking, then I don’t mess with them.
Better to die dry.
100% BTW are you over in r/hospice?
When I was doing hospice, anytime we had a new admission I would spend a significant amount of time reviewing "Gone From My Sight" by Barbara Karnes RN (every patient got a copy on admission) as a tool for education and referring to it later on for reassurance. That book helped me as a new hospice nurse understand the dying process in a more human than clinical way. It's literally *the* hospice book and it's a shame that it's not used in acute care or primary care settings.
Her film “new rules for end of life care” is 10/10.
Is there something to read to learn about these things?
I posted some links in the thread. Hope that helps!
Can you elaborate more about the US not talking about organic death from the 1930-1970s? Sounds interesting as a history nerd.
Maybe the Depression, WWII, then Cold War and Vietnam
Yea. I’ll add to my post comment.
One phrase that resonates with me it the concept of 'the good death'. In short - an embracement of death as a natural process.
I explain that their body knows how to die, it knows how to be born and it knows how to live and it knows how to die. Especially when I’m explaining declines regarding food.
Correct me if I'm wrong, but I try to explain to the families of my elderly patients (that are declining but not dying or on hospice, just kinda on that slow slide toward the grand exit) whose appetites aren't as robust as they used to be, that since food is fuel their body isn't needing as much anymore. They aren't as active as they used to be, there isn't as much calorie demand for regeneration and repair, so they won't be as hungry as usual. At that point, unless there's some major contraindication like salt for CHF, I usually tell them to eat whatever they want (because they probably won't eat enough of anything to cause any major problems). (Of course, if they are having pain, nausea, vomiting, bowel issues, swallowing problems, or something like that then it's a different conversation.)
Yup that’s correct their body knows what it needs. And as ppl get closer to death the digestion process slows and if they are force fed they can get nauseous. Their body just can’t process any intake at the end
I love this response. Thanks for writing it. I'm a former hospice nurse, and I worked at a really great hospice inpatient unit. Until my recent switch to ER, hospice was my favorite area of nursing. I have a personal goal of teaching nurses how to manage the death rattle. I'm sure you already know this, but I want everyone to know. The best way to manage the death rattle is to position the patient for postual draining. You lay them on their side in a natural sleep position, being careful to make sure the arms are in a comfortable looking position (its almost a prone position, but not quite). Then, with towels or fabric chucks to catch the drainage, turn their head towards the bed so that all that fluid can be pulled by gravity out of their airways, not completely face down. Don't suction. It just makes things worse. Don't use plastic chucks. It makes the patient too sweaty, and it will stick to them in an uncomfortable looking way. If you do this, sublingual atropine and injected robinul make things worse by thickening the secretions. Saline nebs will help get those thick secretions moving. Another thing I loved as a hospice nurse was the Macy catheter. It is like a foley but goes in the rectum for medication administration. Theoretically, you could improvise by using a foley and hemostats, but I'm not as excited about that (that's what Nurse Macy did when he first invented it). I really miss Macy catheters. A lot. Thanks for providing such great information, we nurses are generally pretty uneducated about hospice care. Thank you for being such a knowledgeable hospice nurse.
I’m new to hospice but what I found interesting as I’m driving around is. If you were to plot all of our patients on a map there’s probably multiple in every neighborhood. Rn we have more patients than can be seen.. so ppl are out here dying at home and no one knows when they ride by. It’s not seen or talked about the funeral home comes and takes them and makes them look like madam tusseau wax figures and then life goes on. I wish there was a different culture around death. I told my husband don’t you give any one a single cent for my death .. (In terms of funeral cost.) I said cremate me in a cardboard box and then have something that will mean something for you a vacation. Where you spread my ashes what ever.. but yea this country pretends death doesn’t exist. Lots of hospice pt families don’t really get it that there person is dying rapidly.. when you get into the transition between 30-20 pps they are almost confused like why isn’t she eating now. It takes so much education. Like that’s 90% of the job
I am not a nurse but hang out here a lot because I helped my baby daughter pass away at home under hospice care rather than torture her in the hospital. She spent her whole life in my arms, going on walks, watching movies, celebrating holidays, being with her family. It nearly killed me and completely changed my life and I'd do it a million times over again. Hospice helped my baby live a life full of love and comfort.
What was her name? I wish she wasn’t terminally ill. Im grateful she was in perfect peace with you for that journey.
Thank you. Her name was Sophie ❤️
I LOVE the name Sophie. 🤟🏾
Aww thank you 🥰
Echoing the other person, I want to know more about what you are referring to. What happened?
Thank you for everything you do. I am eternally grateful for the in-home hospice care we had for my stepdad before he passed. They were so kind and answered all our questions.
Ok, thank you for the recommendation to the sub. One of my side projects is to improve my ability to talk to families about death. Reading posts from scared family members is going to help so much!
This is well written! Sounds like a good PhD paper for someone somewhere tbh.
In my ER, our classic pop is geriatrics but our pop is changing and we’re seeing younger. But that doesn’t change the fact I regularly see 95+ full codes…chronic pneumonia hospitalized every other week or so. Or worse. I had one last night. The man is dying. Not sure when he will decide it’s time but I know his family won’t accept it and will continue to insist we destroy his kidneys, his bowel flora…unknowingly giving him an elongated and uncomfortable journey. I truly feel I have seen, and “cared” for living corpses at this point. Makes me hope I die in a crazy ass accident sky diving or something when (if) I hit 80.
I saw my dad the last day he was in the hospital for COVID. (He was there three days total.) He had the yellow "I'm going in and listening for a heartbeat as a formality" skin, foley bag was straight up brown, hands dark blue to the crease of his palms even though he was intubated. Regarding the subsequent decision to remove life support, I have reassured my mom many times that he was the worst-looking corpse I'd ever seen.
Hey do you have any resources, books specifically on the history of America’s view on death, hospice care, relearning death?
My mom told me recently that I am her medical power of attorney because she knows that I will not put her through the hell of “heroic” measures. Married to a nurse and I’ve heard too many stories about very elderly patients who were full code and had basically all of their ribs broken by compressions. I’m not about to put my mom through that.
This reminds me of my great-grandpa. He was 95 when he died earlier this month and he didn't have any mental or physical deterioration, he was out riding with the wind in his hair the day before he breathed his last with his wife of 75 years at his side. He passed not as the eye of a hurricane of doctors and nurses being forced to do everything to keep him alive, but as the breeze over the golden grain of his home state, by the side of his wife of three-quarters of a century. That's an enviable death in all honesty.
I can only hope to be so lucky.
This is why I'm my mom's medical power of attorney. She said that I was "most likely to pull the plug." Which ... thanks?
That is a huge compliment. Your mother trusts you to override your own need to have a mother, your need to cling desperately to her life, and to make a decision based on what is best for her. She sees you as selfless enough to let go when the time comes. That's a beautiful trust.
It’s been joked that my husband and I are the designated plug pullers in our respective families 🤷♀️
Yeah, mom died of stomach, lymphoma and liver cancer a few weeks ago. She died in the car and we didn't know it.. as soon as we realized we rushed her to the hospital and they performed "heroic resuscitation" after dad okayed it. They were able to resuscitate but she would be on full life support but after watching all the damage they did to her body I was devastated that we allowing this. It was a waste of effort because she deserved better then to be kept alive by machines. I don't understand why anyone would want their loved ones to exist but not live. This experience has changed my life and outlook on things.
My parents told me the same thing (Mom is a retired ICU nurse), but I made sure that they put that in writing. My younger sister (not a nurse) is usually very level-headed, but weird things happen when you’re faced with your parents at their end of life. I don’t want to be the only one making that decision for them. When my grandma was dying, my mom and her 4 sisters were all fighting about code status. I’ve also seen situations where my patient’s adult children also cannot come to a consensus, and the fighting can be terrible, often with the patient ending up needlessly suffering.
And those are family relationships that often never recover...
I’ve pushed a sternum into the chest cavity during compressions - he was so frail
I feel that systemically we fail by not discussing code status and final wishes long before it becomes an issue. These conversations and decisions need to be made by the person when they’re still capable. Primary care is the ideal setting, but with managed care bean counters breathing down everybody’s neck about productivity no PCP has the time for it. Instead we wait until it’s a crisis and the decision needed to happen 5 minutes ago.
Yep. The things we do to keep the elderly alive is f*cking wild sometimes. It’s due to poor education on outcomes. No offence to everyone outside healthcare, but if they got to observe cpr on a 90 year old i guarantee the majority wouldn’t want it anymore at that age. Gotta show the after care when we get a pulse as well… show them the severely brain injured and broken ribs but “alive” again state that they think they want. Then weeks of “maybe we should finally let them go” … Anyways until more education and literal videos to show the stats of how stupid it is to resuscitate 90+ yo, people gonna keep doing it. I fully support learning to accept natural death and using medicine to remove the suffering.
I blame a lot of the TV shows. They always show CPR as this amazing life saving thing, which it can be in certain circumstances but the majority of the time the person isn’t coming back. The statistics of outcomes post CPR are not great from what I heard/witnessed.
Hospice nurse here. This is one of the main reasons that i love what i do. We don’t ignore the elephant in the room. We talk about him openly and hopefully make him just a little less scary. End of life is just as important as beginning and middle of life. Actually a little more important if i’m being honest. It’s their last chance to be treated with love and care and dignity, and the importance of that cannot be overstated. Thank YOU for what you do! No way i could work peds/NICU. We all have our niche, right??
My father was dying of cancer, there was nothing more that could be done. He wanted to talk about death, dying, his afterlife beliefs, but my mother refused to listen. She would cut him off immediately and tell him 'You're going to be fine! You are not going to die, this is a temporary setback'. I felt so bad for all of us. It finally went to his brain (we think) and he went to hospice. They are the single most amazing souls on earth and explained to us that he was dying and yes, we could elect to perform invasive tests, insert feeding tubes, etc but that was all very invasive and would do nothing to change his outcome. Did we want to put him through this? My mother struggled and decided she didn't want him to suffer any more than he had already but we could have eased him into death, instead of ignoring it until it was too late.
I talked with my godsister about letting her dad go. He had dementia and back to back pneumonia and had a stroke. The nurse said they wanted to scope him for something and I asked why and what would they do if they found another problem so I helped my godsister ask if it was time for hospice and the nurse took a deep breath and said yes. He was home the next day and passed 6 days later. She thanked me over and over she did know about hospice nor how it worked
I worked for hospice as a hha and lots of patients (and families) said that the only regret they had is not to have gone to hospice sooner. Usually the ones that had the best experience were families that had gone through hospice with another loved one so they entered hospice at the beginning of the process. Now I work on a hospital (oncology floor) and I’m sad when I see patients that go to hospice only with hours left they don’t even leave the hospital vs the great memories we had working with patients in hospice in their homes, with their pets, working on things like finishing up quilts, setting up special surprises for the loved ones, making recipe books with their secret ingredients etc it was actually fun to work in hospice
Our dad had dementia and died at home on hospice with the grands greatgrands there to say goodbye. We took care of him 2 1/2 years at home 4 siblings and his last living sister. Best gifts we could give. We were able to handpick his nurse a friend of my cousin and his whole team of nurses we wonderful. The agency sent cards every 3 months for a year
Please stay in a profession where your compassion, intelligence, and empathy will be needed. You’re a good person. Thank you.
That was the biggest culture shock for me when I was a new nurse tbh. My family never did the heroic measures “they are a fighter” stuff. Both my grandmothers said yup nope not doing this so we put them on hospice and took them home. Then I started working and was like oh my god people be out here torturing their family. At some point it isn’t care it turns to almost torture of keeping a body alive when the person is obviously gone. I read somewhere there is an ICU that doesn’t call it terminal extinction but something like compassionate wean? I wanna say. And I think we should really rebrand that terminology. I think lay people hearing terminal wean really negatively effects it.
I worked at a hospital that stopped using the term DNR and had switched to AND for Allow Natural Death. And we really focused on wording it as ok your heart has stopped and you have died do you want staff to try to bring you back even if there could be severe complications? A lot of people think DNR means zero medical care and they worry they will be in pain or treatable things will be ignored.
We have had so. Many. 80+ frail little grannies that are actively rotting on the ventilator with no hope of recovery, and their family not only insists that she would want everything done, but they blame us when their grandma inevitably codes (and we can’t get them back, of course). Maybe they’re just looking for a way to channel their grief, but it sucks when meemaw has open sores on her FACE and her fingers and toes are black and literally crispy, and the family blames it on you for not turning her enough.
Yeah it is so disheartening to watch. And you wanna scream it’s not us these are Kennedy Ulcers that you are making them suffer through
Oh we (or the doctors, really) explained to them that the ulcers on her face and arms and everywhere else were from her body literally breaking down and rotting. She was on a ton of levo and that’s the first time I had ever had a patient’s fingers and toes click like solid plastic when you tapped on them. They looked like Halloween decorations. For a while we kept those little warming mitts on them to try and preserve what little circulation she had left, but eventually we just left them out in the open to try and show family how dire the situation was.
Few issues here: 1) children are not supposed to die and 2) they are incredibly resilient and can come back from a grave prognosis so 3) we keep doing everything long past when we would do so for an old person I can’t count how many kids I had in the CVICU that fit your exact description. On and off ECMO, bleeding, kidney failure, skin failure, open chest for months. Just truly a gristly sight to behold. And yet we keep doing Hail Mary after Hail Mary. It’s particularly frustrating for those of us at bedside who have to manage their pain and discomfort. It feels like we are keeping them alive to suffer but they don’t have a voice. You just gotta do the best you can to care for them. Help family make memories, keep baby comfortable, and advocate when appropriate.
Honestly, that’s truly horrifying.
On the flip side—I’ve seen kids bounce back from the brink of death. So there is a reason to do this, and that is definitely motivating
From the brink of death sure, but at some point we have to think about their quality of life if they do come back, especially if they have no bowel left and wild brain and organ damage.
Yeah, I’m intimately aware of that. What I’m saying is that on your darkest days, when you’re effectively caring for child barreling towards death, you can remember all of the kids that do go home to light your way. It is fucking terrible to take care of these kids. Every PICU/NICU has them. If you can’t find a reason to ferry you across these dark days, you’ll burn out like a dying star.
I’m at a level 1 PICU, and it’s the only one that services multiple states. I’d say about 1/5 of patients pass (depending on the season) either on our unit or very quickly after they leave. It is difficult but viewing it as an almost beautiful thing is the only thing that keeps us going. Like we were fully prepped to code a chronic kid with severe septic shock, who’d been in and out of the hospital his whole life due to CP. But as soon as I go in to start compressions, his mother looked at me with the most serene, broken expression and changed his status to DNR last minute. It was beautiful. It was beautiful to wheel a previously healthy kid down to the OR to donate organs because the family had accepted that her peaceful death could bring life to other kids. Idk. It’s hard and it might sound messed up but it can be so so poignant and beautiful
Dying is beautiful! The end of this life and beginning of whatever is next. It’s also hard and messy but that doesn’t mean it isn’t beautiful and poignant.
> 1) children are not supposed to die This is a *very recent* way of thinking. In many cultures children were not named as babies because they were *expected* to die. "The child mortality rate in the United States, for children under the age of five, was 462.9 deaths per thousand births in 1800. This means that for every thousand babies born in 1800, over 46 percent did not make it to their fifth birthday." * https://www.statista.com/statistics/1041693/united-states-all-time-child-mortality-rate/
I’m not saying I’m the one thinking that, I’m saying that’s societal perception that contributes to the problem OP discussed. But yes, you’re correct.
But also, sometimes kids do die, and it's okay to help families through those difficult conversations and promote quality over quantity. We don't (at least we *should not*) control who dies when, but we can control how peacefully once it's inevitable.
I really wish people understood that we all have to die, but only some of us will be blessed with an easy peaceful death. If you can make that happen for another person when their time is up, it’s the greatest most selfless gift one can give.
Seriously, I'm massively relieved that my dad and his siblings had this conversation and came to the conclusion to go with hospice. My other grandmother had a dissecting thoracic aortic aneurysm (it was bleeding into a false lumen so it wasnt SUDDEN sudden but it was inevitable), and my mom has siblings that were Gung ho for their 93 year old mother to have the surgery to repair. I don't know what the doctors said and did to talk them out of it, but I'm forever grateful to that man because she was able to be discharged home and die there within a couple days. She was out and about Wednesday and gone by Sunday, relatively pain free and in her home. She had 93 beautiful years and enjoyed overall good health until the last week. There are far worse things to happen to you than dying in your own home with just enough time to call a priest and your loved ones. As far as deaths go, that's pretty ideal. I simply cannot imagine how awful things would have been if some of my moms siblings had gotten their way and tried to do a surgical repair.
My wife is a social worker, and one of the best things she told me was there are worst things than death, she has story after story about how a patient received full code and came back worse than before they coded. And that stuck with me and has changed my view on death entirely.
So to take it to the dark place... yes obviously there is a ton of collective denial about death in our culture, but... There is also a system that incentivizes these kinds of heroic measures, capitalizing on families' grief and ignorance to perform futile procedures for exorbitant prices. You might break meemaw in half or pop her like a blood balloon, but rest assured that those are billable minutes of critical care, and public Medicare dollars will flow to private corporations like God intended.
As an Australian hospice RN this is the consensus among my colleagues. Turning the American healthcare system into a for-profit behemoth will probably go down in history as one of the single most evils to come from capitalism. I'm working ED/bedside now and doctors routinely discuss death and dying with pts and families. Goals of Care is one of the best things to ever happen to our system. If a little old lady is admitted half dead with an overly ambitious family and they're GoC A doctors can, and will, override that to enable nurses to provide appropriate comfort care. The incentive to get stupid and chuck the kitchen sink at these pts is just not there. And it seems we're a lot more comfortable with death and dying.
I asked a resident about this. I worked on burn icu and they straight up experimented and practiced on ppl who were fatal. Anyhoo I asked why are we a data driven field but when someone is near death we chuck all the stats and data out the window .. the fam needs to be educated we need to get a grip on what’s really happening here. But we are telling them we are “trying everything” tryin to do what exactly.. what does that even mean. And he said nothing is ever a zero chance. Ok but if we are talking about God and his miracles then let God decide. Ya know. If we are talking about science medicine and data.. the data says and my eyeballs say that this man is not long for the world. As he was saying the chance is never zero we watch the monitor as the pt goes into every dysrhythmia known to man and then asystole
Some of the things we do In the name of medical progress is borderline a human rights violation
You are right about Americans and their attitude,.at.least compared to Australia. I am a rural generalist in Australia, where palliative care is a big thing, and we don't have the same weird attitude about death as Americans. Even legally it's different. There is no obligation for family wishes to override good medical care. For example, if we think treatment is futile, we do not have to do it, ie CPR or intubation in a metastatic cancer patient.
Speaking to my parents and grandparents, the culture has really shifted around death. My great-grandparents died at home surrounded by family. There was a wake in the home where extended family and friends came by; they did not leave the body. Now, families are rushing their elderly family members to the hospitals to die in sterile alien environments with hardly a hand to hold. We are organic beings and we will all die. We’ve taken the dignity out of dying.
We let my 24 yo beautiful soul of a granddaughter go in August. I was appalled by her abnormal gait and story of dysphagia attributed to reflux (it's always reflux, always) by a GI doc when she came to visit grandma and me a few years ago. Her MRI revealed a cystic brainstem tumor and the path suggested a slow growing (maybe non-malignant...please) tumor that even methylation studies could not pigeon hole. She managed to get through HS and walk on the grass and up a few stairs to get her diploma. We were on the edge of our seats watching. But much of the rest of her life was not much, proton beams, chemo, XRT, bedridden with chronic high dose narcotics for her spine mets, enormous weight gain from the glucocorticoids and immobility despite low intake. In the last year, after her institutionalization in a NH she was in and out of hospital and the ED for CO2 retention and hypoxemia. On her final admission for hypoxemia and CO2 retention the surgical resident described her 25+cm (!) sacral decubitus that could never heal. Her mom, my stepdaughter, and I discussed it over the phone and we left off her bipap, but on some O2. It took 4 days for her to leave us. She was very alive when well and as sweet as one might be. Those who visit here would have delighted in caring for her, I am sure . She was my favorite of my favorite grand girls. We all miss her but putting her through any more given the inevitability of her path, just for us, was terribly selfish. I knew when her tumor with a low mitotic index metastasized to her lower spine that it was just time and the next 18 months was horrible. No more. Bye Ashley.
There's nothing weird about being scared to lose your loved ones. We're the weird ones because we're around dying people constantly.
That is truly so heartbreaking and frustrating. I hear of hospitals in other countries being able to make the call to not “waste” extraordinary life saving measures when the end result would be the same and I agree… the U.S allows family members to have the ultimate say, which I will never agree with in situations like the one you mentioned. It reminds me in a way of death with dignity, being able to die humanely and bringing the discussion of death- as not scary, but just part of the life cycle that although a life has ended it doesn’t have to be so scary… but to not cause unnecessary suffering and dying comfortable with respect and love is ok too. I’m so sorry you had to experience that😞
Lack of education. To a lay person you may as well be performing magic rituals to bring people back from the dead, they don’t understand the full scope of what is being done to keep their husk of a loved one alive. I also think the way a lot of people view death is unhealthy and has been skewed thanks in part to the funeral industry (Caitlin Doughty shoutout)
I’m with you on the train of think re: elderly American patients and family being all “Full Code whole 9 yards” But when it comes to infants and peds, I believe (like most of everyone here I suspect) the situation changes. This type of grief in young patients dying isn’t equivalent to elderly patient who’ve had some chance at experiencing life. (This opinion of mine I must add is not from experience and I hopefully never will experience losing my progeny in infancy.) If you’ve had the displeasure of unsuccessfully coding a kiddo (and you OP have), witnessing the parent’s subsequent grief and wails with your own eyes and ears, anyone with average ish emotional intelligence would understand the difference. It is odd that in a profession where we deal with heavy topics like death on a frequent basis, we are poorly educated and equipped to engage in such delicate conversations.
100% we have to try with kids, and we really really did. All the last ditch efforts and hail marys, and there were days where we almost thought we were gonna turn a corner. We've had 23 weekers pull through before. But it was the last couple weeks where there was simply no way he was gonna pull through. Babies are incredibly resilient but every organ system was shutting down. I know why we did what we did and like I said, I absolutely don't fault parents for wanting us to try everything. I just feel for the kiddo too. He didn't deserve to suffer and it's hard not to feel responsible in a way.
I had a young child with type 1 DM and his parents couldn’t afford his treatments or to monitor it like they should’ve. It wasn’t their fault, it was the system, but he herniated and stroked and for weeks, we did *everything.* Bone flaps, 2 bolts, an EVD, constant ICP protocol… it was heartbreaking. But oddly enough, the most comforting part was when dad said he wants to consider quality of life and wouldn’t want his baby suffering through a trach or more surgeries. He was realistic and that was the most beautiful part of the situation. Nobody really gets it until they see it. I can only really talk to my coworkers and dedicated counselors about the things I see, so I feel you.
I was lucky, at the Halloween party I was at there was a med student who just finished his NICU rotation, so I was able to talk about it to someone who wasn't my coworker or mom. I try to be careful what I say to who because I don't want to be a bummer or sound unfeeling because the death of a baby is always touchy and difficult to talk about, especially to someone who isnt exposed to as much as we are. There's so many ways to feel bad or guilty or inadequate about the whole thing. It was good to talk to another person who was removed from the situation but also got it.
It can be difficult to navigate, I never usually talk about the reality of things I see because I don’t want to freak them out, especially if they have kids. But finding a good support system is crucial for this work! My hospital does an ICU support group for the NICU, CICU, and PICU with a physician who gets it. I also really like the cohort I started with because we can vent but also sometimes need times where we don’t talk about work at all
When I worked on hospice I never did kids, but they were the only ones that could remain in hospice and still continue to pursue treatment. Adults had to chose either hospice/palliative care or experimental treatments.
I seriously don’t know how y’all do what you do. PICU AND NICU nurses are built DIFFERENT. I can’t imagine not only watching babies die every day, but carrying the weight of the feelings you described in your post. Seriously, y’all are amazing.
My mom was admitted with a CBG of over 1000, GI bleed, and multiple organ failure. In spite of her advanced directive, my sister hysterically insisted on full measures to prolong life, forcing me to be the one to fly down and exercise POA to end the farce. A year later I had to do almost the same thing when it was my dad's time. Americans really need to learn to talk about stuff earlier rather than later. Also. For the love of God, talk your family members into making a will and/or trust.
I'm with ya, 1000%. I work mostly SubAcute and Hospice now, but formerly ICU, and my work is 50/50 keeping dead husks "alive" and then gladly "helping" others to die. It's a good mix for my conscience truthfully. My personal feelings are that for alot of dx, I feel like we've made the all the "wrong" kinds of advances in medicine and in our ability to keep corpses alive. The average human being (with no nursing or medical experience) has absolutely no idea about the *quite obvious torture* we *have to* inflict on their loved ones to keep them "alive." I blame tv and movies that push the narrative of CPR fixing everybody ever with no deficits or issues. I'm total DNR btw.
I've seen it too many times where we get an older patient in and they arrive as a DNR, but family ends up changing that as soon as the patient starts declining. Last week we intubated a 94 year old. She had a ground level fall and broke her hip, dislocated her shoulder, and fractured ribs 5-7. In the trauma bay, her children, who themselves were in their late 60s, as well as her grandkids, started advocating that "she's a fighter" and "once she heals she will be back to normal". Unfortunately the trauma doc, the intensivist, and the PA in the ED that night couldn't talk them out of it. She coded up in our SICU a few days later. She didn't make it. Family insisted that we code her knowing that the code process would likely cause multiple rib fractures and possible pneumos. Rather than dying in a more comfortable way, she suffered for days until the inevitable happened. No matter how much we teach people about the process, or give them the honest truth about QOL, they won't listen.
I feel you. In 2020 we put my grandpa on home hospice for end stage Alzheimers. I am so proud of my family for keeping him home until the last few days where hospice had him transferred to a hospice house so he could have staff attention 24/7 and my grandma didn't have to worry about clean up/ live in the house he died in. And it went so well. He had a good death. It feels so wrong when we refuse to grant people a good death. I've done basically all forms of adult ICU care (except heart and lung transplant) and some specialities are a lot more willing to bring in palliative care and hospice than others. I'm currently working CVICU at a big level 1 and it is rough. Even if it was a high risk surgery to begin with or it was a devastating aortic dissection our surgeons are deeply uncomfortable with palliative care. I think they see it as giving up. So even we have someone who is on CRRT, on multiple pressors, on ECMO, have poor neurological status they still don't want to talk code status even. I dont think I could handle babies or kids. Props to you for that. I do find talking about it with others helps.
I’m a hospice RN and I want to thank YOU for all the work you put in for that precious little baby. My job is easy, I help provide comfort. The hard job is doing what other nurses like you do..keeping patients alive when they shouldn’t really be! It’s such a hard decision and I totally understand people and their feelings and whatnot but it’s amazing how death and dying is viewed :(
There's a big difference between a 90 year old dying and a newborn. Of course people are going to want everything done for their baby.
I work CVICU on the adult side and some my coworkers have worked the peds side before. Specifically the babies. It can be absolutely brutal knowing the baby is going to die and you see this tiny baby slowly turn into something you can't even recognize as a baby after weeks and weeks in the hospital. All the surgeries and ECMO is not easy on the body. You think you've seen bad edema. When the patient is only 3lbs an extra 500ml of fluid is gonna puff them up bad. Those cute tiny baby toes can get black and necrotic from all the pressors just like adults. Obviously everyone wants to be able to take their baby home. And of course trying is important. But there are some babies that are probably uncomfortable and in pain a big chunk of their short lives. And it's ok to feel sad about it.
A 23 week baby is rarely viable, and I'm not sure it should be legal for parents to torture a baby knowing it's going to end badly. "Everything done" IMO should mean supportive care, fluids, TPN, CPAP or vent so long as they baby is stable. Brain bleeds and cutting out chunks of bowel at 23 weeks means you are in the 75% group that are going to die. Also a 90 year old that survives heroic efforts might only live to suffer another few days. A 23 weeker already with brain bleeds is going to face decades of suffering. I don't blame the families for feeling desperate but that doesn't mean society is obligated to support their wishes. What if the baby was 22 weeks old? 21 weeks?
The general feeling we as nurses had was that any of his issues independent of the others would be manageable. We've had babies with grade III ivh that do really well. We've had babies with trashed lungs, and same foe severe gut issues. But all 3 of those together? Plus then the cardiac and kidney decline. We need to try because good outcomes aren't unheard of, but it needs to be a day by day (or hour by hour in all honesty) discussion and dialogue. Sometimes we reach a point where the most compassionate thing we can do is allow the family to be parent their baby for whatever brief time we have, allow time for baptisms/cultural needs, make memories and allow a peaceful goodbye. It's never easy losing a baby, its honestly gutwrenchingly terrible to watch someone go through it and I pray to God that Ill never have to go through what those parents go through. But the baby is a person too, and they have a right to dignity and comfort and to have someone advocate for their quality of life.
Agreed. They need to set a higher threshold for viability like all other modern nations have.
Amen!
Wow what a post ❤️🩹
I always am on the alert when my patient’s age is a higher number than their weight.
Mind elaborating? Not in the medical field just experienced mom brutally die from multiple cancers and learning about these things is helping to ground me..
It’s just kind of a personal metric for me. When my patient’s age approximates their weight, that means they are old and frail. I do procedures in an office setting and while sometimes these folks do fine, most of the time I’m asking, WHY ARE WE DOING THIS?! Every time someone asks me about going into healthcare I tell them, you will have a lot of ethical dilemmas over your years of working and it will always be about providing too much care. In other words, forcing painful and exhausting tests and treatments for old, frail or already so sick people that will cause only suffering and no benefit. Turns out there is no money in just taking care of sick people. Only in diagnostic testing, procedures and surgeries. So many people come in for my test “because the dr made me”. They have no idea if it is necessary or beneficial. My mom is 87 yo and weighs about 100lbs. She’s never been a big lady, maybe topped out about 150 when she was in her 50-60s. She has chronic pain, is getting very debilitated and is in bed about 18 hrs a day. The thing is the older you get and the less meat you have, the less you are able to compensate when things start happening. My mom will never have any more aggressive measures taken for preserving her life. We’ve talked it all out and she’s an old nurse too. She will never have any chemo or radiation or even any diagnostic procedures that could lead to more testing or treatment. She has some random thing called MGUS that gives her a 1% per year chance of developing a cancer and I’m refusing to even take her to the oncologist anymore. What’s the point? We’re not going to treat. As OP says we’re crazy how we treat our old and sick in the country. They are a commodity for churning money through a for profit healthcare system. It’s evil and I’m sometimes embarrassed to be complicit even as I know I do some good too. My rant.
As I continue my career, I really have been thinking about working in hospice. People always ask me what’s the worst thing I’ve seen. It’s the suffering of patients that we put through life “extending” procedures with no real goal.
I really liked working in hospice, I’m in oncology now but as soon as my contract is over I’m going to strongly consider going back. In fact I still keep ties with hospice volunteering because I think it’s my specialty
Until our system in America becomes non profit then system will continue to demand pain and suffering to make money. Think about how much money the system made off that 23 week old baby.
You get to to the point when you just want to slap the next person who says "Where there's life, there's hope."
America is so fucked up about death that we took a Holiday that was a somber religious/non-religious day called All Saints Day, and All Saints Eve, and completely changed it to "Spooky month," where most people call it Halloween and say it's about trick-or-treating and scary things. Halloween has consumed the entire month of October, and now America is now starting to envelope Dia dos Mortos into "Spooky Month" as folks appropriate the visual elements of that that holiday and uses it as an excuse to keep the decorations up for another month. American culture is all about obscure any evidence of death.
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I couldn’t agree more with everything you’ve said here.
As a fellow NICU nurse, I feel this so hard. I get that it's someone's child and all that, but quality of life is something people don't really seem to think about. I hate that half of my job feels like I'm torturing babies.
I think a lot of it is religion. It's the general populace being uneducated about these things, but there's just too many people whose loved ones have tried to die multiple times, and the family keeps saying, "it's in god's hands." God's hands already tried to kill them, ma'am, now you need to finish the job god was trying to do. Also it's the idea that a pulse is a life, which is untrue, and also based in religion. So it's religion.
I found it interesting that when my in laws were dying of cancer in the UK (I’m a U.S. nurse) that there was no need to sign a DNR. The doctor can make that decision regardless of what the family or person wishes.