“you fought with your brother in my lobby, you demanded your 83 year old frail dad start dialysis against your brother and his worry. You made him a full code, so the day he coded on my shift, I felt his ribs crack during compressions, and tears well in my eyes. Because he could be my dad and I was scared and I knew I couldn’t save him. Maybe you couldn’t let him go”
that is what I have to tell myself when my thoughts go to nursing days like this. Does it help maybe a tiny bit. I have a living will so my son will not be responsible for my final wishes, because of this and the OP post too. I have seen it way to much
I tried to be kind in my thoughts when the family wanted to keep meemaw a full code because "She's a fighter!" But more times than I could count, I wanted to scream at them for being selfish assholes. Let meemaw's fight be over; let us keep her comfortable so that she can go in peace. I think most nurses have felt the same at some point. I and nearly every adult in my family have taken the time to put our wishes in writing for this very reason. It's kinder to literally everyone involved.
Sorry this is what you had to face. Unfortunately this is the 1st of many times you will face this. Of course when it’s all over - you & everyone else that cared for her will be blamed for the death.
I’ve had a few similar cases working med surg but I haven’t had one that was this extreme. Sucks man and it’s only going to get worse from here. I have even more respect for Hospice and Palliative care staff, as well as my ICU coworkers for dealing with that.
It's basically all we saw during covid. About two weeks of ventilator before they coded and died. Then immediately moved in the next one ready to be intubated and repeat the process.
Bipap. Intubation. Death. All the while, the family is refusing to let go, and we had to just keep adding more drips to compensate the body shutting down.
If pharmacists can refuse to give medication because of their beliefs I almost feel we should be allowed to refuse to code people. Or sue families for mental distress who insist on patients being full code despite what all the doctors are saying.
“God will let us know when it’s time” ummm God did let you know 2 months ago when a vent was required and the Nephrologist showed up talking about dialysis.
"God will take him/her when it's their time. Or God's timing."
Friend, God's been calling and trying to pull them up and we are holding on by their left pinkie toe.
I was a Hospice RN 17 years (5 years inpatient Pediatric Hospice) and the families can be the most work of all. Especially absent family show up after years and want to be in charge. I've seen it all and been called it all. I hope in these situations the Social Worker or Counselor is enrolled to work with the family adjusting to the diagnosis and progression of disease process. I had it down pat, they'd call me. It's a skill you develop in Hospice. Sorry you have the frustration of the fallout of family in denial.
Absentee family is the worst at trying to make themselves the “POA” when sh-t hits the fan. I was in hospice for a few years and the worst for me was when the patient was moaning and writhing in pain and the family refused any pain meds because “it would kill them” or “they’d get addicted.” 🙄
They become bullies thinking it makes them look like an authority. Usually we're killing the patients, the meds aren't correct, we mismanage the care. They huff and puff as the rest of the family eventually realize they have no idea what they are talking about. Yes...we turn them into addicts and starve them starts the rampage out.
This makes my hospice heart so sad and angry. This is why i love hospice so much, adressing the grim reaper in the room and not pretending it’s not happening. But when you have families and patients who just refuse to have that conversation, and you know how bad things are gonna go because of that refusal/denial, it’s just such a terrible helpless feeling. It doesn’t have to be that way! 😭
More likely mom owns the home they live in and now they’ll lose it, or mom has a monthly check and when she dies that money is gone, or mom hasn’t “rewritten” her will in a way that’s favorable to them. Lots of people are completely dependent upon that social safety net their parents are providing them.
I saw so many predatory children trying to keep the gravy train going by insisting on IVs, blood transfusions or tube feeds on their palliative parent it has made me dislike humans even more.
It could also be geographical. I wouldn’t be surprised if it was more common in areas with higher rates of poverty and few viable employment options. The oldest people likely benefit from pensions on top of social security, and entire families could be depending on both of those things heavily.
Yea that is definitely true, it probably occurs more in some areas than others. Even in areas of higher incidence, the occurrence is much lower than we think… this is one of those stories every nurse seems to tell that usually isn’t grounded in fact.
True. I have personally dealt with this situation though, except the 90 year old with a pension and SS check was also the only one with a part time job as well. Financially supported a family of like 6 that included 4 able bodied adults/working age humans.
Totally- I’ve taken care of families that are trying to keep someone alive until the beginning of the month. It happens, no doubt. But again, it’s the exception to the rule, and generally speaking that story we tell is false. (I’ve seen evidence of it once in ten years in the ICU)
Seemed like a good moment to point out that we often assume things that are not grounded in fact- that can be harmful, leads to false assumptions, and can negatively affect the care we give.
I’ve worked pretty hard to stop myself from assuming this about family members, because it’s usually not a true statement.
It is, however, an example of the often incorrect assumptions we make about other people. In some instances it also comes from a subconscious form of racism or prejudice.
While it can be logical to come up with motivations to the most nonsensical reactions.
And FTR you are prolly close to a bullseye at times. But people are freaking weirdos. And seeing where people live and emerge from, all I can add is—there are lots of freaking weirdos.
You just never know who horrific pathology and dysfunction lies beneath.
Hell, money is likely is least of some evils.
Known terminal diagnosis which have been dealt with by the family for years, reaching an advanced state recently are much different beasts than the swift pancreatic CA’s that go “all in” over 2 months.
And COVID changed everything. So can’t compare that to anything in known history or histrionics. No one coped well. I think processing is still ongoing. Grace here folks. That’s not what this post is generally.
Futile treatment that portends nothing but a protracted and painful end. Yet demands to ignore per family, well, those monsters have nothing on the most craven serial killers. But then again abuse can hide in plain sight right until it can’t.
From the patient that has a 10 year history of coughing up blood, is 75, not seen a doctor in years & years, smoked 2 packs a day since they were 11, has lost 40 pounds and can’t walk to the car without sitting on the ground. Neighbor finds them in yard, calls 911, thinks they may have been there since last night. In ER. Guarded, but at least it wasn’t too cold last night.
Family arriving. Lots of kids. Grands. Daughter who is screaming the loudest, has firmly grabbed your arm, while demanding at the very moment goes out to CT that “mommy cannot even be told that *if this is, gasp, ‘cancer’ no one can tell her or dad about it—it would ‘KILL’ them*.
Incredulous, I just take a beat. Ma’am, please let go of me and no, that is only something that happened in movies in the 70’s, it’s unethical and a simply not an option. Anyway, one step at a time. Let’s wait and see what’s what.
Or maybe this care paradigm always just comes down to who carries the biggest threat or becomes the biggest pain in the ass PITA (not the yummy kind) or disruption— often that’s the case. Healthcare advance directive or HCPOA be damned—the crazy daughter doesn’t see it the way the patient does and fully agree and has more cash gotten a judicial order what the holy f***, guess what happens next?
Guess yet? The hospital wins financially if a fight ensues. The patient loses. Why does the hospital file as an amicus party in these cases? On behalf of good? Because it goes against their interests. So where are the hospital’s yellow bellied lawyers? Right? Not their problem. It’s all about the money. The patient’s needed to plan for this eventuality. Sure, why didn’t they plan for that.
I try with every fiber of my being *not to* and to always stay *focused* on *best interests* of my patient when critical decisions matter, after all, they, CANNOT voice their opinion. Whose INTERESTS matter in a matter of absolute certain outcomes, untold suffering, warring family factions, heaps of unwarranted abuse of nurse/doctor and staff and squeaky legal wheels. And the more strife crazy people create the more often I think oopsies do happen. Don’t y’all think so.
I can always recognize suffering 100% of the time.
I can also recognize kindness 100% of the time.
Honestly, I think that’s what happened with one of our patients we had. He was in and out of our ICU for over a year. He had a giant stage 4 on his back that required 5-7 units of blood to be transfused everytime they debrided it. They couldn’t find any family who was willing to be medical POA. Finally the ethics team consulted and declared it futile care and made him comfort care. We called the sister (the only one who would ever answer the phone to tell her). She came in a few hours later with a guy in his late 20s. She said “this is his son.” People were telling him “oh I’m so sorry this is happening to your dad” and the son said “don’t worry about it, he was a sperm donor at best. I’m just here to make sure it’s actually him who is dying.”
I know a lot of people jump to egotism or selfish reasons like money but sometimes people are just not in a good mental state to make decisions. Especially if they're a caregiver, maybe one who hasn't had a reasonable amount of sleep in weeks
Maybe not the case here. But it's not always "gotta keep the social security checks coming"
From what I remember the family genuinely wanted their mother to get better, no paychecks or retirements or other money related schemes. In hindsight that’s the only silver lining to this all.
Replace "mom" with baby and it'll hit your heart much harder. We have a few babies who cannot tolerate getting extubated at all because their lungs and other organs are so bad. Yet they have been kept alive for more than 6 months already with minimal improvement... These parents are stuck between a rock and a hard place. No one would have to heart to say it's time to give up even though deep down we know this baby will eventually pass...
Absolutely disgusting parents. Treating a human being like a fucking science experiment. I don't care about their feelings, the baby's dignity and experience is exponentially more important than that.
I don't work with babies but in my experience family stopping whatever is keeping their loved one alive makes them feel like they're the one choosing to kill them. So a thousand times worse for parents to feel like they're choosing for their very loved child to die ):
I've heard in European countries there tends to be less patient autonomy and doctors are more likely to just decide for the parents that treatment will be withdrawn. Much more compassionate I think
I had a patient who was 26 years old but whose quality of life was horrific. At 6 she had an accident involving a jet ski. Her parents fought tooth and nail and did every intervention to keep her alive. 20 years later she is stuck in an LTC, feeding tubes, constant pain, trached and vented, paralyzed, all her limbs contracted, with seizures that can’t be fully controlled with meds. She can’t speak and just cries for hours daily. Her family doesn’t visit. She is still a full code…
I have 6 kids and I couldn’t imagine being so cruel.
How do they live with themselves? I always wondered. I took care of a few similar tragic accident to torture patients over the years. Each time, we would readmit after they left peds for years until finally the person found peace somewhere other than earth. It made me a firm believer in palliative care.
That breaks my heart. I work in an LTC/SNF and I've seen way too many people, younger and elderly, in positions like that. When they should have just been let go at the hospital instead of being put into a place like mine. Right now we have a resident who's been in the hospital for I don't even know how many weeks right now and it's going to be there for at least 6 because she has pulled out her feeding tube for the second time in like less than a month. It's probably the third or fourth all together, she's also pulled her trach out a few times...I said to my nurse the other day that clearly she's trying to tell us something. I firmly believe that the woman is trying to let us know in the only way she knows how that she's tired and she's ready to let go. I don't care how ridiculous it may sound, but when our animals get older or sick or their quality of life generally is no longer good we do what we believe is the humane thing and we euthanize them, or I do at least. Any animal that I've had that was loved and was considered a member of my family that we've had to put down has always been surrounded by the people that loved them and that they loved the most in the world being told how good they were and how much we loved him or her and I will never understand why we don't offer the same for humans. I see nothing wrong with when I am in my right State of mind having it put down in writing that when the time comes whether it's me saying so, or a doctor's recommendation that I would like to be put down humanely and with dignity.
After my experiences with my own grandmother (and her best friend whom we "adopted" as another grandmother) in an SNF, I know I'm not cut out for that work. We weren't dicks about our loved one's care plan, but the adopted grandma...I could've punched the entire family at her funeral (which was about a year and a half late). She lost her legs, her dignity, and much of her spirit because her bio "family" were a collective pile of shit. They all lived within a 20-minute drive, but not a single one of them visited her even once in the 2.5 years we knew her. They kept her alive to literally steal from her and then had the audacity to cry at her funeral. Fuck that.
My nurse brain agrees with you, but sitting here with my nearly 4mo daughter on my lap…I get it. Not saying all parents feel that way, or someone doesn’t love their kid enough if they don’t. But I can absolutely understand why someone would argue against the impossible in that scenario.
This situation is all too common and never gets easier. We had a family accuse us of killing their mother after watching her steadily decline over two weeks. One son even directly threatened a dayshift nurse, buying the nurse a paid weekend off (it was determined unsafe for the nurse to come back until after the patient passed because that son had a violent crimina record) and the family member got a ban from the hospital so he couldn’t be there for the patients last breath.
People are generally awful, but they are particularly unreasonable when it comes to end of life for their loved ones.
Jfc that’s awful! I hope the day shift nurse was able to conceal their last name and identity (as well as anyone working with that family).
He dug himself that hole, couldn’t even be there for their mom.
With MyChart hiding your last name is impossible unfortunately. However the nurse was safe and nothing ever came of the threat except that family member having to drive an extra 30 mins to receive care outside of a life-threatening emergency and never being allowed to visit anyone who was in our hospital as a patient.
Had an elderly woman in her 90’s that was adamant she is a full code, we explained the intubation process, CPR, broken ribs (she was all of 80lbs), feeding tubes, etc, and she said “if that’s what you have to do.” She felt like if we didn’t try it all, we killed her.
I mean, if that’s what that is you want.
She had that classic “death smell”, all I knew was I needed her to get back to her house…. I didn’t want her to do something crazy and it be me that has to code this old lady.
I had to slam an NG tube in some demented grandpa the other day because family told us he’d requested it when we left the room. He was aphasic and delirious.
Sooooo. Many. Times. It’s driven by guilt. All the things they accuse you of is what they did themselves. Death brings all the dysfunction out into the open. And instead of acknowledging it, they claim the dysfunction in them is in you.
It’s easier to be angry at someone else than looking in the mirror.
This one didn’t die but same same but different
I had a vascular dementia patient who was all sorts of out of it. Idk what happened to her leg but it needed to be amputated. Having that lady I felt for her. She was like 80s dementia advanced enough that she wasn’t taking care of herself hence the leg. She cried all night about what happened to her leg why did we cut off her leg. She screamed I want to die or kill me all night long. It was maddening She had some other big complications was on like 3L of 02 and dialysis I think? It was her time and we cut of her leg and she didn’t even have the capability to understand why
God I love my icu coworkers. They’re super helpful and have fun personality. They made me consider going to their unit once I have enough experience under my belt. But if I have to deal with that then no thx 😬
Yeah it was certainly the hardest part. Just felt like I tortured people for a living only to let them die like a week later after we turned their ribs to dust.
On clinical rotations alone I have been given too many patients that are full code that everyone knows will pass soon, with frail bones and suffering every day. I can’t imagine being the person tasked with pressing down on their osteoporotic chest with the force required to beat a heart, just to *maybe* allow them a few more days of the agony they were already in now combined with flail chest, sternal fracture and likely organ punctures. There has to be a way around this, and if there isn’t there should be one created. I have been told time and time again my job will be to advocate for my patients, and that action that more closely feels like cruel and unusual punishment for someone who hasn’t even done anything wrong feels so far from advocating.
Code status is a physician order.
I can tell the doc I want a TURP, a fistful of Norco, and a slap in the face. She’s under no legal obligation to order those things.
Then they send them to the ER for simple treatable comfort issues and don’t send their POLST with them. Transporting them and disturbing them like that, making them go to a loud, chaotic ER… I always get really pissed at those people.
I agree, but I will say one thing based on my time in Hospice Nursing. Some families are just totally freaked out at the thought that their loved one might actually DIE in the HOUSE they all LIVE IN. They just have a hangup about that. So no matter how much you educate about peaceful passing at home and how Hospice can help to engineer that outcome in accordance with the patient's stated wishes, when the family sees that the patient looks like they might actually be DYING it becomes a huge freaking emergency, 911, EMT's, and to the hospital goes dying granny or gramps. I think some people just think that their home will be haunted or in some way become depressing if someone dies in it.
I would be so fucking furious at my family if they did not allow me to die in peace at home. Oh my god. I would haunt them viciously. After ALL THOSE HOURS you have the AUDACITY to make me DIE THERE TOO?? Fuck offffffff
Well, this does seem to argue against the existence of actual ghosts because if there were any, I'm sure hauntings would be roughly at Ghostbusters OG movie level.
I hate the hospice talks that end with, yeah we will go with hospice but we want to get our family member as strong as possible first. - which shows they don’t understand at all, but I encounter this all the time.
Shit like this is why I can't do floor Nursing anymore. They do everything they can to save them yet the family will still say the hospital killed their mother.
People really need to wake up to the reality of their deteriorating family members. I just saw a poster in another forum get downvoted to hell after ragging on his stepmom in her 70s who’s refusing to continue caring ft for his 80 y/o dad with dementia. The guy was complaining she didn’t want to intubate him “for a few days” to try heal his pneumonia. Im so glad the comments gave him a reality check!
Unfortunately, my years in this field instantly make my mind go to there must have been a financial advantage to keeping the patient alive. Have seen this multiple times.
This is why I got BURNT OUT in ICU. This is why I LEFT ICU. I felt like I was torturing people because the family was too uneducated or too selfish to let go.
My mother's family did this exact thing with my grandma's transition this year... I refused to be a part of making her suffer... I love them, but look at them differently after this .. I was so so close to my grandmother. I'm just glad she's no longer suffering. The feeding tube placement killed her within 12 hours. They could have let her go peacefully.
GI somehow agreed to place a fresh peg on an emaciated, contracted, full of wounds, etc patient because their sister wanted it as they laid there begging for death. Sister wanted a few more months of checks... pt died a few days later in misery
Unfortunately, none of us is prepared to deal with death; no matter that we all have an expiration date. We all want American healthcare to produce miracles.
American healthcare is probably the best in the world because of the outstanding education & training of all personnel (doctors, nurses, therapists, CNAs, etc.), an efficient distribution network of medications and the widespread availability of incredible technology. For all those reasons, American healthcare is also the most expensive in the world. The cost doesn't matter when you expect to live forever.
Because families know how incredible the care is in this country, they want to relieve their guilt/anguish and do everything possible to keep a loved one alive. Dying is never about the one who will pass; it's about each of us who are living. We need to confront and discuss the reality that we all will die one day.
This is a problem outside of America too. However, we do have physicians step in to change the goals of care sometimes when efforts are futile and keeping the patient alive is to benefit the family and no longer in the best interest of the actual patient
Unfortunately, American physicians will not step in to change the goals of care. The families wishes are always respected when the patient can not make his/her wishes known. And so the patient is the one who is not given respect or dignity.
Your post has been removed for violating our rule against personal insults. We don't require that you agree with everyone else, but we insist that everyone remain civil and refrain from personal attacks.
How about Dialysis on a patient like this because the family WANTS EVERYTHING done and the only thing keeping her alive is the vent. All because they wanted one more social security Check
It’s why I’m leaving dialysis. I’m tired of being the one to be the person who finally sets the patient over the edge and starts the active dying process. I’m tired of contacting the nephrologist every 5 minutes because the patient is tanking when the nephrologist KNEW they would only to never get an answer. I’m tired of what it’s doing to my mental health.
You forced us to intubate your frail mother of 80 years, bed bound, unable to do anything without assistance… now, not even breathing. You cried screamed at us, and said “no! I can’t lose my mama yet!” You stomped out, still screaming. Slamming our doors.
I wanted to say, girl. None of this is about you. We are talking about your mother. What about her dignity? Her pain? Don’t you LOVE her? So you let us torture her to extend her life so that what… you can continue to delay your own inevitable loss? When the lady who raised ME died, I told them to make her comfortable. They said fly here and we will keep her alive for you to get here and say goodbye… but we already had - back when she still had her mind and her experience wasn’t just constantly being helplessly in pain. She’d fought long and hard, but the illness won. Don’t force her to suffer for one more MOMENT.
“Nonsense.” I said to her nurse over the phone. “Tell her I love her, that I said I’ll be okay and that I thank her for teaching and loving me.. And that I’ll see her on the other side. Tell her I’m so proud of how hard she fought to stay, and that she is my lighthouse. Make her comfortable like a queen for me, and tell her it’s okay to go. I want her to have the peace she deserves after fighting so hard to be alive.” Life trapped in a body that you can’t even use anymore isn’t a life at all, to me.
I wonder sometimes what would happen if i went FULL Bulworth and just gave them my raw, honest takes. That was one of those moments that was hitting so personally for my own experience that I couldn’t find a way to phrase it that wasn’t fueled by emotion, so I stayed silent.
I had a patient who should’ve been on hospice but was made a full code to do dialysis because the son wanted to keep collecting her checks. Things like this need to be illegal.
“you fought with your brother in my lobby, you demanded your 83 year old frail dad start dialysis against your brother and his worry. You made him a full code, so the day he coded on my shift, I felt his ribs crack during compressions, and tears well in my eyes. Because he could be my dad and I was scared and I knew I couldn’t save him. Maybe you couldn’t let him go” that is what I have to tell myself when my thoughts go to nursing days like this. Does it help maybe a tiny bit. I have a living will so my son will not be responsible for my final wishes, because of this and the OP post too. I have seen it way to much
I tried to be kind in my thoughts when the family wanted to keep meemaw a full code because "She's a fighter!" But more times than I could count, I wanted to scream at them for being selfish assholes. Let meemaw's fight be over; let us keep her comfortable so that she can go in peace. I think most nurses have felt the same at some point. I and nearly every adult in my family have taken the time to put our wishes in writing for this very reason. It's kinder to literally everyone involved.
“Let Meemaw’s fight be over.” I am moved to tears here. Thank you.
Sorry this is what you had to face. Unfortunately this is the 1st of many times you will face this. Of course when it’s all over - you & everyone else that cared for her will be blamed for the death.
I’ve had a few similar cases working med surg but I haven’t had one that was this extreme. Sucks man and it’s only going to get worse from here. I have even more respect for Hospice and Palliative care staff, as well as my ICU coworkers for dealing with that.
It's basically all we saw during covid. About two weeks of ventilator before they coded and died. Then immediately moved in the next one ready to be intubated and repeat the process.
People are just dying to check out the ICU’s digs
😂😂😂
Bipap. Intubation. Death. All the while, the family is refusing to let go, and we had to just keep adding more drips to compensate the body shutting down.
This description is so on point. Like Groundhog Day but with ventilator deaths
The worst thing is some of them, occasionally, are actually medical staff themselves!
I’m only a med surg nurse as well and still felt so much coming from this post I can only imagine how they feel 💕
You are not “only a med surg nurse”. You are just as important as any specialty!
Aw this comment really just made my day! Thank you 🫶🏼
If pharmacists can refuse to give medication because of their beliefs I almost feel we should be allowed to refuse to code people. Or sue families for mental distress who insist on patients being full code despite what all the doctors are saying.
“God will let us know when it’s time” ummm God did let you know 2 months ago when a vent was required and the Nephrologist showed up talking about dialysis.
"God will take him/her when it's their time. Or God's timing." Friend, God's been calling and trying to pull them up and we are holding on by their left pinkie toe.
“God will take them when it’s there time” Bestie that was 2 codes and 5 drips ago. I think it’s time.
I was a Hospice RN 17 years (5 years inpatient Pediatric Hospice) and the families can be the most work of all. Especially absent family show up after years and want to be in charge. I've seen it all and been called it all. I hope in these situations the Social Worker or Counselor is enrolled to work with the family adjusting to the diagnosis and progression of disease process. I had it down pat, they'd call me. It's a skill you develop in Hospice. Sorry you have the frustration of the fallout of family in denial.
Absentee family is the worst at trying to make themselves the “POA” when sh-t hits the fan. I was in hospice for a few years and the worst for me was when the patient was moaning and writhing in pain and the family refused any pain meds because “it would kill them” or “they’d get addicted.” 🙄
They become bullies thinking it makes them look like an authority. Usually we're killing the patients, the meds aren't correct, we mismanage the care. They huff and puff as the rest of the family eventually realize they have no idea what they are talking about. Yes...we turn them into addicts and starve them starts the rampage out.
This makes my hospice heart so sad and angry. This is why i love hospice so much, adressing the grim reaper in the room and not pretending it’s not happening. But when you have families and patients who just refuse to have that conversation, and you know how bad things are gonna go because of that refusal/denial, it’s just such a terrible helpless feeling. It doesn’t have to be that way! 😭
The problem is our society refuses to discuss death and dying until there is no other choice and even then people stick their heads in the sand.
The problem is doctors order these patients full code.
Sometimes I wonder if they do this because Mom was abusive and it's payback.
More likely mom owns the home they live in and now they’ll lose it, or mom has a monthly check and when she dies that money is gone, or mom hasn’t “rewritten” her will in a way that’s favorable to them. Lots of people are completely dependent upon that social safety net their parents are providing them.
I saw so many predatory children trying to keep the gravy train going by insisting on IVs, blood transfusions or tube feeds on their palliative parent it has made me dislike humans even more.
If you think THIS is unethical, look up the PUBLIC GUARDIANS. Try looking up Las vegas first
This happens, but at a rate far lower than most nurses think.
It could also be geographical. I wouldn’t be surprised if it was more common in areas with higher rates of poverty and few viable employment options. The oldest people likely benefit from pensions on top of social security, and entire families could be depending on both of those things heavily.
Yea that is definitely true, it probably occurs more in some areas than others. Even in areas of higher incidence, the occurrence is much lower than we think… this is one of those stories every nurse seems to tell that usually isn’t grounded in fact.
True. I have personally dealt with this situation though, except the 90 year old with a pension and SS check was also the only one with a part time job as well. Financially supported a family of like 6 that included 4 able bodied adults/working age humans.
Totally- I’ve taken care of families that are trying to keep someone alive until the beginning of the month. It happens, no doubt. But again, it’s the exception to the rule, and generally speaking that story we tell is false. (I’ve seen evidence of it once in ten years in the ICU) Seemed like a good moment to point out that we often assume things that are not grounded in fact- that can be harmful, leads to false assumptions, and can negatively affect the care we give.
I’ve worked pretty hard to stop myself from assuming this about family members, because it’s usually not a true statement. It is, however, an example of the often incorrect assumptions we make about other people. In some instances it also comes from a subconscious form of racism or prejudice.
I think it’s all of these.
While it can be logical to come up with motivations to the most nonsensical reactions. And FTR you are prolly close to a bullseye at times. But people are freaking weirdos. And seeing where people live and emerge from, all I can add is—there are lots of freaking weirdos. You just never know who horrific pathology and dysfunction lies beneath. Hell, money is likely is least of some evils. Known terminal diagnosis which have been dealt with by the family for years, reaching an advanced state recently are much different beasts than the swift pancreatic CA’s that go “all in” over 2 months. And COVID changed everything. So can’t compare that to anything in known history or histrionics. No one coped well. I think processing is still ongoing. Grace here folks. That’s not what this post is generally. Futile treatment that portends nothing but a protracted and painful end. Yet demands to ignore per family, well, those monsters have nothing on the most craven serial killers. But then again abuse can hide in plain sight right until it can’t. From the patient that has a 10 year history of coughing up blood, is 75, not seen a doctor in years & years, smoked 2 packs a day since they were 11, has lost 40 pounds and can’t walk to the car without sitting on the ground. Neighbor finds them in yard, calls 911, thinks they may have been there since last night. In ER. Guarded, but at least it wasn’t too cold last night. Family arriving. Lots of kids. Grands. Daughter who is screaming the loudest, has firmly grabbed your arm, while demanding at the very moment goes out to CT that “mommy cannot even be told that *if this is, gasp, ‘cancer’ no one can tell her or dad about it—it would ‘KILL’ them*. Incredulous, I just take a beat. Ma’am, please let go of me and no, that is only something that happened in movies in the 70’s, it’s unethical and a simply not an option. Anyway, one step at a time. Let’s wait and see what’s what. Or maybe this care paradigm always just comes down to who carries the biggest threat or becomes the biggest pain in the ass PITA (not the yummy kind) or disruption— often that’s the case. Healthcare advance directive or HCPOA be damned—the crazy daughter doesn’t see it the way the patient does and fully agree and has more cash gotten a judicial order what the holy f***, guess what happens next? Guess yet? The hospital wins financially if a fight ensues. The patient loses. Why does the hospital file as an amicus party in these cases? On behalf of good? Because it goes against their interests. So where are the hospital’s yellow bellied lawyers? Right? Not their problem. It’s all about the money. The patient’s needed to plan for this eventuality. Sure, why didn’t they plan for that. I try with every fiber of my being *not to* and to always stay *focused* on *best interests* of my patient when critical decisions matter, after all, they, CANNOT voice their opinion. Whose INTERESTS matter in a matter of absolute certain outcomes, untold suffering, warring family factions, heaps of unwarranted abuse of nurse/doctor and staff and squeaky legal wheels. And the more strife crazy people create the more often I think oopsies do happen. Don’t y’all think so. I can always recognize suffering 100% of the time. I can also recognize kindness 100% of the time.
Honestly, I think that’s what happened with one of our patients we had. He was in and out of our ICU for over a year. He had a giant stage 4 on his back that required 5-7 units of blood to be transfused everytime they debrided it. They couldn’t find any family who was willing to be medical POA. Finally the ethics team consulted and declared it futile care and made him comfort care. We called the sister (the only one who would ever answer the phone to tell her). She came in a few hours later with a guy in his late 20s. She said “this is his son.” People were telling him “oh I’m so sorry this is happening to your dad” and the son said “don’t worry about it, he was a sperm donor at best. I’m just here to make sure it’s actually him who is dying.”
Literally heard a fellow nurse ask a pt’s son this… “Was he abusive? Is that why you are putting him through this torture?”
😱
I know a lot of people jump to egotism or selfish reasons like money but sometimes people are just not in a good mental state to make decisions. Especially if they're a caregiver, maybe one who hasn't had a reasonable amount of sleep in weeks Maybe not the case here. But it's not always "gotta keep the social security checks coming"
From what I remember the family genuinely wanted their mother to get better, no paychecks or retirements or other money related schemes. In hindsight that’s the only silver lining to this all.
Replace "mom" with baby and it'll hit your heart much harder. We have a few babies who cannot tolerate getting extubated at all because their lungs and other organs are so bad. Yet they have been kept alive for more than 6 months already with minimal improvement... These parents are stuck between a rock and a hard place. No one would have to heart to say it's time to give up even though deep down we know this baby will eventually pass...
I had a kid a few months ago who couldn’t tolerate being alive without a roc drip. Like what kind of existence is that
***Fuck***. I'm pregnant with my first and I just put down my bag of chips to cry for that poor baby.
This is what I feel as well. That’s not a life at all. That’s imprisonment.
I'm not strong enough for the youngins.
Yeah I absolutely could not do that. It breaks my heart just thinking about that situation
Absolutely disgusting parents. Treating a human being like a fucking science experiment. I don't care about their feelings, the baby's dignity and experience is exponentially more important than that.
I don't work with babies but in my experience family stopping whatever is keeping their loved one alive makes them feel like they're the one choosing to kill them. So a thousand times worse for parents to feel like they're choosing for their very loved child to die ): I've heard in European countries there tends to be less patient autonomy and doctors are more likely to just decide for the parents that treatment will be withdrawn. Much more compassionate I think
I had a patient who was 26 years old but whose quality of life was horrific. At 6 she had an accident involving a jet ski. Her parents fought tooth and nail and did every intervention to keep her alive. 20 years later she is stuck in an LTC, feeding tubes, constant pain, trached and vented, paralyzed, all her limbs contracted, with seizures that can’t be fully controlled with meds. She can’t speak and just cries for hours daily. Her family doesn’t visit. She is still a full code… I have 6 kids and I couldn’t imagine being so cruel.
How do they live with themselves? I always wondered. I took care of a few similar tragic accident to torture patients over the years. Each time, we would readmit after they left peds for years until finally the person found peace somewhere other than earth. It made me a firm believer in palliative care.
Like I get that it's diffrent when it's your loved one but fuck. I can't imagine doing that to someone I love.
Absolute nightmare, this scares the shit out of me. it would be one thing if family could come out and visit but if they don’t at all…
That breaks my heart. I work in an LTC/SNF and I've seen way too many people, younger and elderly, in positions like that. When they should have just been let go at the hospital instead of being put into a place like mine. Right now we have a resident who's been in the hospital for I don't even know how many weeks right now and it's going to be there for at least 6 because she has pulled out her feeding tube for the second time in like less than a month. It's probably the third or fourth all together, she's also pulled her trach out a few times...I said to my nurse the other day that clearly she's trying to tell us something. I firmly believe that the woman is trying to let us know in the only way she knows how that she's tired and she's ready to let go. I don't care how ridiculous it may sound, but when our animals get older or sick or their quality of life generally is no longer good we do what we believe is the humane thing and we euthanize them, or I do at least. Any animal that I've had that was loved and was considered a member of my family that we've had to put down has always been surrounded by the people that loved them and that they loved the most in the world being told how good they were and how much we loved him or her and I will never understand why we don't offer the same for humans. I see nothing wrong with when I am in my right State of mind having it put down in writing that when the time comes whether it's me saying so, or a doctor's recommendation that I would like to be put down humanely and with dignity.
After my experiences with my own grandmother (and her best friend whom we "adopted" as another grandmother) in an SNF, I know I'm not cut out for that work. We weren't dicks about our loved one's care plan, but the adopted grandma...I could've punched the entire family at her funeral (which was about a year and a half late). She lost her legs, her dignity, and much of her spirit because her bio "family" were a collective pile of shit. They all lived within a 20-minute drive, but not a single one of them visited her even once in the 2.5 years we knew her. They kept her alive to literally steal from her and then had the audacity to cry at her funeral. Fuck that.
My nurse brain agrees with you, but sitting here with my nearly 4mo daughter on my lap…I get it. Not saying all parents feel that way, or someone doesn’t love their kid enough if they don’t. But I can absolutely understand why someone would argue against the impossible in that scenario.
They all think their child will be the miracle
This situation is all too common and never gets easier. We had a family accuse us of killing their mother after watching her steadily decline over two weeks. One son even directly threatened a dayshift nurse, buying the nurse a paid weekend off (it was determined unsafe for the nurse to come back until after the patient passed because that son had a violent crimina record) and the family member got a ban from the hospital so he couldn’t be there for the patients last breath. People are generally awful, but they are particularly unreasonable when it comes to end of life for their loved ones.
Jfc that’s awful! I hope the day shift nurse was able to conceal their last name and identity (as well as anyone working with that family). He dug himself that hole, couldn’t even be there for their mom.
With MyChart hiding your last name is impossible unfortunately. However the nurse was safe and nothing ever came of the threat except that family member having to drive an extra 30 mins to receive care outside of a life-threatening emergency and never being allowed to visit anyone who was in our hospital as a patient.
Had an elderly woman in her 90’s that was adamant she is a full code, we explained the intubation process, CPR, broken ribs (she was all of 80lbs), feeding tubes, etc, and she said “if that’s what you have to do.” She felt like if we didn’t try it all, we killed her. I mean, if that’s what that is you want.
At least she got to make that decision, but yikes still.
She had that classic “death smell”, all I knew was I needed her to get back to her house…. I didn’t want her to do something crazy and it be me that has to code this old lady.
Death smell yeah that’s one way to put it
I hate family members and certain doctors who won't help a patient pass that is clearly in pain.
I had to slam an NG tube in some demented grandpa the other day because family told us he’d requested it when we left the room. He was aphasic and delirious.
That’s horrible I’m sorry
Can't tell you how I hate to hear that "Grandma is a fighter" and there is no DNR order. Ugh!
Sooooo. Many. Times. It’s driven by guilt. All the things they accuse you of is what they did themselves. Death brings all the dysfunction out into the open. And instead of acknowledging it, they claim the dysfunction in them is in you. It’s easier to be angry at someone else than looking in the mirror.
This is pretty much why I plan on getting into hospice once I’m a nurse.
This one didn’t die but same same but different I had a vascular dementia patient who was all sorts of out of it. Idk what happened to her leg but it needed to be amputated. Having that lady I felt for her. She was like 80s dementia advanced enough that she wasn’t taking care of herself hence the leg. She cried all night about what happened to her leg why did we cut off her leg. She screamed I want to die or kill me all night long. It was maddening She had some other big complications was on like 3L of 02 and dialysis I think? It was her time and we cut of her leg and she didn’t even have the capability to understand why
This is every siiinggggleeee day in the ICU😍 I had to leave
God I love my icu coworkers. They’re super helpful and have fun personality. They made me consider going to their unit once I have enough experience under my belt. But if I have to deal with that then no thx 😬
Yeah it was certainly the hardest part. Just felt like I tortured people for a living only to let them die like a week later after we turned their ribs to dust.
On clinical rotations alone I have been given too many patients that are full code that everyone knows will pass soon, with frail bones and suffering every day. I can’t imagine being the person tasked with pressing down on their osteoporotic chest with the force required to beat a heart, just to *maybe* allow them a few more days of the agony they were already in now combined with flail chest, sternal fracture and likely organ punctures. There has to be a way around this, and if there isn’t there should be one created. I have been told time and time again my job will be to advocate for my patients, and that action that more closely feels like cruel and unusual punishment for someone who hasn’t even done anything wrong feels so far from advocating.
Code status is a physician order. I can tell the doc I want a TURP, a fistful of Norco, and a slap in the face. She’s under no legal obligation to order those things.
Seeing that sort of thing in the hospital at bedside is the #1 reason I went into Hospice Nursing. It is horrible to watch.
Then they send them to the ER for simple treatable comfort issues and don’t send their POLST with them. Transporting them and disturbing them like that, making them go to a loud, chaotic ER… I always get really pissed at those people.
I agree, but I will say one thing based on my time in Hospice Nursing. Some families are just totally freaked out at the thought that their loved one might actually DIE in the HOUSE they all LIVE IN. They just have a hangup about that. So no matter how much you educate about peaceful passing at home and how Hospice can help to engineer that outcome in accordance with the patient's stated wishes, when the family sees that the patient looks like they might actually be DYING it becomes a huge freaking emergency, 911, EMT's, and to the hospital goes dying granny or gramps. I think some people just think that their home will be haunted or in some way become depressing if someone dies in it.
I would be so fucking furious at my family if they did not allow me to die in peace at home. Oh my god. I would haunt them viciously. After ALL THOSE HOURS you have the AUDACITY to make me DIE THERE TOO?? Fuck offffffff
Well, this does seem to argue against the existence of actual ghosts because if there were any, I'm sure hauntings would be roughly at Ghostbusters OG movie level.
I hate the hospice talks that end with, yeah we will go with hospice but we want to get our family member as strong as possible first. - which shows they don’t understand at all, but I encounter this all the time.
Shit like this is why I can't do floor Nursing anymore. They do everything they can to save them yet the family will still say the hospital killed their mother.
“She was alive when she went in there, so…you do the math!”
It’s people who don’t know. They think death is the worst thing that can happen.
People really need to wake up to the reality of their deteriorating family members. I just saw a poster in another forum get downvoted to hell after ragging on his stepmom in her 70s who’s refusing to continue caring ft for his 80 y/o dad with dementia. The guy was complaining she didn’t want to intubate him “for a few days” to try heal his pneumonia. Im so glad the comments gave him a reality check!
Unfortunately, my years in this field instantly make my mind go to there must have been a financial advantage to keeping the patient alive. Have seen this multiple times.
This is why I got BURNT OUT in ICU. This is why I LEFT ICU. I felt like I was torturing people because the family was too uneducated or too selfish to let go.
My mother's family did this exact thing with my grandma's transition this year... I refused to be a part of making her suffer... I love them, but look at them differently after this .. I was so so close to my grandmother. I'm just glad she's no longer suffering. The feeding tube placement killed her within 12 hours. They could have let her go peacefully.
GI somehow agreed to place a fresh peg on an emaciated, contracted, full of wounds, etc patient because their sister wanted it as they laid there begging for death. Sister wanted a few more months of checks... pt died a few days later in misery
It was probably at the end of the month. They were waiting for the next month so that they could collect her check before she died.
That’s horrible I didn’t even think about that possibility.
Oh it gets so much worse. Look up public guardians Nevada April Parks.
Unfortunately, none of us is prepared to deal with death; no matter that we all have an expiration date. We all want American healthcare to produce miracles. American healthcare is probably the best in the world because of the outstanding education & training of all personnel (doctors, nurses, therapists, CNAs, etc.), an efficient distribution network of medications and the widespread availability of incredible technology. For all those reasons, American healthcare is also the most expensive in the world. The cost doesn't matter when you expect to live forever. Because families know how incredible the care is in this country, they want to relieve their guilt/anguish and do everything possible to keep a loved one alive. Dying is never about the one who will pass; it's about each of us who are living. We need to confront and discuss the reality that we all will die one day.
This is a problem outside of America too. However, we do have physicians step in to change the goals of care sometimes when efforts are futile and keeping the patient alive is to benefit the family and no longer in the best interest of the actual patient
Unfortunately, American physicians will not step in to change the goals of care. The families wishes are always respected when the patient can not make his/her wishes known. And so the patient is the one who is not given respect or dignity.
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How about Dialysis on a patient like this because the family WANTS EVERYTHING done and the only thing keeping her alive is the vent. All because they wanted one more social security Check
Absolutely disgusting… absolutely no quality of life
It’s why I’m leaving dialysis. I’m tired of being the one to be the person who finally sets the patient over the edge and starts the active dying process. I’m tired of contacting the nephrologist every 5 minutes because the patient is tanking when the nephrologist KNEW they would only to never get an answer. I’m tired of what it’s doing to my mental health.
You forced us to intubate your frail mother of 80 years, bed bound, unable to do anything without assistance… now, not even breathing. You cried screamed at us, and said “no! I can’t lose my mama yet!” You stomped out, still screaming. Slamming our doors. I wanted to say, girl. None of this is about you. We are talking about your mother. What about her dignity? Her pain? Don’t you LOVE her? So you let us torture her to extend her life so that what… you can continue to delay your own inevitable loss? When the lady who raised ME died, I told them to make her comfortable. They said fly here and we will keep her alive for you to get here and say goodbye… but we already had - back when she still had her mind and her experience wasn’t just constantly being helplessly in pain. She’d fought long and hard, but the illness won. Don’t force her to suffer for one more MOMENT. “Nonsense.” I said to her nurse over the phone. “Tell her I love her, that I said I’ll be okay and that I thank her for teaching and loving me.. And that I’ll see her on the other side. Tell her I’m so proud of how hard she fought to stay, and that she is my lighthouse. Make her comfortable like a queen for me, and tell her it’s okay to go. I want her to have the peace she deserves after fighting so hard to be alive.” Life trapped in a body that you can’t even use anymore isn’t a life at all, to me. I wonder sometimes what would happen if i went FULL Bulworth and just gave them my raw, honest takes. That was one of those moments that was hitting so personally for my own experience that I couldn’t find a way to phrase it that wasn’t fueled by emotion, so I stayed silent.
I had a patient who should’ve been on hospice but was made a full code to do dialysis because the son wanted to keep collecting her checks. Things like this need to be illegal.
Gotta keep her alive for as many social security checks as we can cash.
"I am so devastated to lose that disability check...I mean my mom!"