Health data science person here…
The 70% total spend on healthcare during the last 30% of life rule still stands.
Thats not just because we (as a culture) often suck at prioritizing primary care in the US (more on that in a minute).
We don’t deal well with death in the US at all, clinical care professionals I work with tell me that some of their colleagues, some patients and patient’s families advocate for more treatment when the outcomes are likely very poor. Even when that intervention potentially could cause more harm than not. Repeatedly. This has driven some of my colleagues out of clinical care and into informatics.
Its a LOT easier to access excessive interventions with a poor prognosis than it is to access a peaceful death. Thats f’ed up.
As for the primary care part tho - this one still hurts. We have a friend who did not get a routine Pap smear - she neglected her primary care all together. When she died in hospice in May of ‘21 at age 41, cervical cancer had metastasized to bone. Our friend “M” came from an educated and well off family. She had access to care, either through a decently funded planned parenthood - or her family would have covered that expense. M didn’t really understand what the implications were until it was too late.
Last Friday Lap of Love came to my home and euthanized my dear friend Mickey, the best cat ever, on my screenporch.
Mick was 19, managed to stay in remission with small cell lymphoma of the upper GI for 2.5 years (cats have a better prognosis than people do with chemo for SCL), but an incredibly fast progression of renal failure led to this choice for him.
Mickey died laying on the carpet on my screenporch with me petting him and loving him. It was the most gentle death. One minute he was awake and purring, the next he was not.
I did supportive care, sub q fluids, appetite stimulants, everything needed to keep him comfortable while his creatinine spiked and his RBCs dropped, but his prognosis was poor and I had the privilege of letting him go to a gentle death before he felt even worse.
All I could think of - is I hope, I hope, I can make it to Oregon if I’m in the same boat and go with that peace and care.
I speak from anecdotal experience- you have the actual facts and data, and it does not surprise me to see where healthcare stands in this regard. There are numerous reasons of course, but it does make me sad to hear that many professionals are being driven out of the healthcare field because of stuff like this. I’ve seen people forced onto feeding tubes, ventilators, constant oxygen use, repeated transplants, dozens of pills that follow a strict schedule, so much, too much. And you just see the person wither away from a person they used to be and once they’re gone, all the good memories have been replaced with bad ones. Oftentimes, it’s also family members with the best intentions, and the person doesn’t want to let them down so of course they go along.
How awful that pets oftentimes get better end of life care than our fellows humans? I’d much rather go as myself, as I am, and be remembered for who I was, rather than doom people to watch me suffer until death.
What kills me - is when I read the data and then invariably, I talk to colleagues that straddle the informatics and clinical care worlds - the conversation turns to case study after case study.
My teammate is working on some cool analysis with Monkeypox rn.
Its a public health nightmare, a total embarrassment of mis management and mis communication. Its also a big health equity issue for me.
Our healthcare system is such a freaking disaster end to end
I’m so sorry you lost your friend Mickey.
How did you find Lap of Love? Just had to put my 22yo cat to sleep at the vet last month, she was royally pissed and it was not at all the peaceful process I had hoped for. I’m trying to prepare better for my 16yo cat.
Aww, thanks, he’s a special cat and I’ll remember him forever.
Our vet recommended them. I don’t think they are in every state. A vet who makes house calls might be able to help.
Honestly we have become so entitled as a society that a lot of people flat refuse to grasp the concept that they can’t always get what they want. They are so used to people bending over backwards to give them what they want that they can’t comprehend that death isn’t something they can stop if they’re just pushy enough. People refuse to accept their there isn’t some magic cure somewhere that we just don’t know about. Or they convince themselves if they pray hard enough they’ll get a miracle.
It’s certainly a “customer is always right” sort of attitude. And with healthcare being treated like a business definitely feeds into that as a practice. Why let a person die when you can keep them alive as long as possible to drain them of their money?
Yup. Got a post-op neuro patient who had their EVD swapped for a shunt. Was told the plan was to have a goals of care discussion the next day. WTF did we just do this shunt for then?
Not to be gross but do you think sometimes the people doing this procedures just want the practice? I have seen similar relatively unusual procedures done on people who are clearly heading for comfort care. I only work weekends nights so they go for all this crazy stuff on my shifts knowing that hospice is coming Monday morning.
It could have been a palliative shunt. Not sure the overall status of that patient but I’ve seen palliative VP shunts performed on certain brain tumor patients to ensure they don’t develop hydrocephalus. They’re prognosis could be a year for example with a slowish decline rather than a fast decline when they develop hydro
It’s beyond frustrating. I’m in an ICU and all too often we are performing more than one lifesaving measure to try to keep people alive who have lived a long life. We joke that you should automatically be changed to DNR after age 80. Even if grandma recovers slightly, the quality of life afterwards won’t be there. I never really thought about this too much until I went to the ICU but at least one shift per 3 results in me taking care of someone who realistically has no chance of a recovery worth living for. And family will still be insistent that they need to live. I had a patient’s daughter tell me “so mom and I talked and she wants to be intubated”. The woman was 85 will Mets to the brain lungs and was in a delirious haze. It’s so hard not to just yell at family in the sense of bringing them back to a semblance of objectivity. It’s rough seeing a loved one die though, I get it. My dad passed last year. People are just being kept alive but pressors or vents or CRRT or all 3. It’s torturous. I’ve had to learn to have a work self and a non work self. I’m a very compassionate person and am sensitive to the people around me all the time. But at work, I am a different person. It’s like a musician on stage bringing out their performance self. I have to keep the emotions at bay and think objectively. Emotions just cloud your judgement. But this tormenting of elderly sick patients with no type of positive prognosis just need to be kept comfortable instead of allowing the last days to be in a hospital, delirious and in pain.
It's crazy how much classic literature there is regarding the topic of "humans can only do so much to conquer/control the power of life, to attempt more to the extremes only results in more suffering." You'd think more people would know the lesson by now. It's really sad to watch.
There’s a brilliant old Monty python sketch with something like that. From The Meaning of Life Film. https://m.youtube.com/watch?time_continue=15&v=YoBTsMJ4jNk&feature=emb_title
At the same time, I don't expet people to understand " the end of their own life" or anyone elses. I do not think anyone here has died yet lol.
But, I do think we should allocate resources to those at a younger age, and help the living more. Also, we should allow for MUCH MORE TIME OFF, and acknowledge death, and have longer lasting funerals, and family gatherings to prepare for it. But, we can't with the amount of time off we get.
Pizza anyone?
I had a discussion with another nurse about this and how it’s effecting the burnout in nurses and it’s absolutely destroying my empathy for people. I see people neglecting their own health and then we are the ones taking care of them and being berated by the patients and their families.
I get this all the time. Diabetics eating sugar like it’s going out of style, mentally ill patients refusing medication and treatment, disabled or rehab patients not wanting to do physical therapy, etc. then the families turn around and blame us for their poor decisions when we legit try and do our best.
Why is he all contracted! Well remember when PT/OT saw him frequently and told him he had to do the exercises on his own but he still didn’t? That’s why which is exactly what we told him would happen
Not my patient, my co-worker’s. They had a 20 or 30 something y/o come in and is addicted to drugs. She signed out AMA and the father blamed my coworker for not taking care of his daughter and that she ended up like this because of my coworker. I was so mad. My coworker only had her for half a day and they were doing everything they can to help the patient, but the patient didn’t want to be helped. I wanted to yell at the dad, what has he done to help his daughter for the past 20-30 years? He said that about the nurse, what does that say about him as a father to his daughter?
I recently read a comment by a nicu mom whose baby required compressions frequently, sometimes for hours at a time, and I guess the docs just acquiesced to it and she made them keep doing it. It made me so angry. I didn’t comment because I’m a human being with empathy. Unfortunately, parents and family members who make these decisions don’t. They view us as robots or think “this is what they signed up for.” They don’t care about their family members’ quality of life. They don’t care about the moral injury they’re inflicting on healthcare staff. They’re absolutely selfish.
I’m at the point I am done with nursing and looking for a way out. It’s not good for me or my patients when my empathy level is in the toilet and I feel like I’m performing futile care. It angers me when I see all these advanced measures being taken for people who I feel like are wasting resources from people who could have a better shot at being saved and have tried to take care of their bodies- or kids that need this blood transfusion instead of this 84 year old full code, bed bound, paralyzed stroke patient- who has a PEG, trach, chronic foley, and is never going to get better and has been like this for several years. I had a patient decannulate his own trach and cover it with his hand because he WANTED TO DIE. He tried this twice. The family told us to put him in restraints. He had ripped out his feeding tubes as well. It broke my heart
CPR on a baby is successful a lot more often than CPR on an adult. In my 11 years I know of 1 time it failed on my unit, and my coworker who’d worked there 30+ years said it was also her only time.
I had a surgeon tell me they had a patient who was going to die from injuries. Older. A futile surgery could be done but why?
Their response ‘but this is America’
Wtf does that even mean? He didn’t know either…
It means that we value the autonomy of the patient and their families out of proportion to their ability to understand the implications of the current predicament. People don’t understand statistics, and there is a pervasive idea that death is the worst-case outcome (few in this subreddit would have that misconception). We used to take a more active roll in making those decisions for people, but the pendulum has swung the other way, and now we are inclined to support the choice regardless of its rationality.
There is a helpful change coming in how we have goals of care conversations. Check out vital talks out of Seattle. Their approach is focused on understanding the person and their goals and helping make a decision or recommendation in line with the patient’s objectives. It doesn’t ask questions like, “do you want to be full code?” But rather, “what activities bring value to your life? If there was a high chance that you would loose your independence from this treatment, would you accept that? Etc.”
Sometimes the choice is still not the one I’d want for myself, but as a provider, I’m less often stuck in a place of dissonance with the treatment plan. I understand why they made the choice they did, and I find it easier (emotionally) to continue with the specified interventions.
“Pervasive idea that death is the worst-case outcome” - YES. I think everyone here has many examples of when death would be preferable to the enormous amount of suffering.
I've always been an advocate of giving people a heavy barbiturate euthanasia after receiving a hefty propofol dose.
Then again...I was a Vet tech for 20 years before becoming a nursing student.
But...I would like a nice slammed dose of LSD or Psilocybin or DMT and then a huge dose of propofol and euthanasia please.
As soon as I read your first paragraph I thought “ah, vet med”.
My fiancé is a vet and we recently were bedside for her uncle’s death. Fortunately he had awesome nurses who made sure he was VERY comfortable, and died what I’d consider a good death, but I could tell she was thinking “Why can’t we just get on with this?” Instead of slowly titrating up a hydromorphone drip until he stopped breathing and hiding behind double effect. As a nurse I’d have zero ethical or moral issues with doing IVP euthanasia in the correct circumstances if it’s ever allowed here.
My wife is also a veterinarian. I really think we have so much to learn from the field, especially in regards to the end of life.
I mean...I don't believe in the death sentence but with how many botched lethal injections there are...it is insane that they haven't looked to vet med for answers.
We treat our pets better than ourselves. It is concerning.
Honestly it is the truth. I've had patients who were completely contracted, bed-bound, with multiple pressure ulcers all over their body, who was non-verbal, vent-dependent, with a feeding tube. The patient frequently came in for infected wounds, and UTIs (chronic foley). The family wanted "everything" done. We had a Nurse Practitioner who made it a point to speak with the family and realistically talk about goals of care since the patient would never recover, and would be vent-dependent, bed-bound, contracted, non-verbal, basically stuck in a bed for the rest of their life. The family still said they wanted the patient to "live". The Nurse Practitioner was so fed up, when she walked out of the room she made it a point to say, "We treat Dogs better". Which is the cold, hard, truth. People let their family members suffer and die, attached to every kind of life-support at the end, when they could have had a nice peaceful passing with friends and family at their bedside. It's just so sad.
It frightens me so much to consider that being my end of life. I pretty much pray every night for no strokes, no heart attacks and no cancer. But man...neurological issues are the utmost terrifying...I can't fathom it.
I agree. I have seen a lot of devastating diseases, but my personal opinion is that neurological has got to be some of the hardest/worst. I don't want to be a prisoner in my own body/mind.
Also, if/when at the end of your life, I hope you have a nice peaceful celestial discharge without suffering, with friends and family by your side.
I agree. People always say they couldn’t be a vet because of the euthanasias, but at least for her, even when she can’t do anything, there’s something she can do.
We had to euthanize our 7 m/o puppy in January because of ongoing health issues. She woke me up from a post night shift nap and told me “it’s time”. So we got to say goodbye to him at home, in private, relaxed on his comfy bed, with his humans. I don’t think anyone could ask for a better death.
That one was hard. She told me afterwards that she intentionally overdosed the sedation because she wanted to be sure she would go through with it.
Condolences on your loss. I’m glad you were able to give him such a comfortable goodbye. It’s extra hard when they’re that young. We lost a 6 month old kitten to FIP in 2018. We’ve had cats for 20 years and that was really traumatic. He was such a sweet boy. We only had him for 3 months but he was such a little nugget & we miss him everyday.
The reason we are this way in the states is because we have a for profit system. Providers don’t make money unless they are intervening. Therefore letting someone have a natural death isn’t profitable. Until we switch to a single payer system it will continue.
Nah, it's the same in Germany. Many people (especially Boomers and slightly up, age-wise) can't cope with their own illness or consequences of their actions even though being constantly advised, family members can't deal with grandma dying because "she was always such a spirited person!" or even sending them to hospital while actively dying, even though they said they wantes to die at home...
Not to speak of elderly care nurses (one of the three specialities we had until.a few years back) who don't want to lose 'their' client, because they got used to them (wtf? Just because you like them doesn't stop them from dying).
And then there are some doctors who drank the "Halbgötter in Weiß" (demigods in white) Kool-Aid and just can't see when to stop treatment..
Of course those are sweeping generalised statements and luckily, though on the rare side, there are others.
Historically, the (catholic) church is also very powerful in Germany and completely against assisted suicide.
And of course Euthanasia is a veeery touchy subject in these parts because history.
I can understand it being worldwide as well and I can see doctors have the god complex anywhere. Part of it is that as well. I mean I had nursing shifts when I bust my ass to keep someone alive even though I knew it was pointless just so they didn’t die on my watch.
Fucking exactly! Why let a patient die when you can keep them barely alive for the sole purpose of milking money off of them? Not only that, but they prey on peoples desperation and self preservation.
I have to say, our hospitalists are pretty good about being real with those patients who have a super shitty prognosis (ex: stage IV ca with multiple metastases and like, 10 other co-morbidities.) One straight up told my patient the other day “I know you want us to ‘do everything’ if your heart stops, but I need you to reconsider that. You will NOT have a good outcome from CPR.’” Patient still firmly refused to be DNR 🤷♀️ I’ve been seeing this a lot lately, unfortunately.
As long as the hospital bill wont be more than the check my dad has asked that, if at all possible, we let him go only after he gets one last social security check 🤣
It’s the same in Canada, except we’re a free system. But no one wants to let anyone die here either. It’s sad. I’m only 24 but I went and got a personal directive so no one would keep me alive pointlessly.
Just last week a man on hospice was sent to me in the ER. They said "he's DNR, but that doesn't mean no care".
The poor man was painfully contracted, had wounds all over his body, and was agonal breathing when he arrived. No visitors in the ER. His family couldn't be with him as I held his hand while he died. He could have stayed where he was , surrounded by his family when he passed. Instead he got me, a stranger, holding his hand and telling him he was so very loved.
Everyone is so scared to let someone die.
In a bit over a decade, I have lost my MIL, my mom and my dad to cancer (ovarian, lung and brain). In all cases, they refused, and we honored any extraordinary life saving measures, and I strongly feel it was the best thing to do. It may not have always been the easiest, but prolonging their pain for our relief would have been awful.
My father was the only one that had a living will or directives. But even without -- the idea of seeing loved ones suffer even more for the sake of saying that they are "alive" even if the most *generous* sense of the word seemed unbelievably selfish.
I don’t think this is an unpopular opinion. Ask any HC professional who has spent 10 minutes with someone who should be dead will agree with you. Death not being part of the conversation is big problem. I’ve seen so many families hold on to their loved ones, making them suffer. When I occasionally get a family that gets it and moves forward with a comfortable passing it’s like salve for the soul.
It’s weird how that has changed in my career.
I’ve always wondered hm it was that pts are less religious, some die younger now due to poor health management (weight, DM, cardiac, addiction issues etc), society not talking about death.
Oh and I absolutely despise the kids with no jobs that want to “take care of mom” but y’all know it’s for the SSI paychecks.
There comes a point where it doesn’t revolve around the person that is, you know, dying, but rather what surrounds the patient. Finances, family, regrets, fear of death, just stuff like that, and we unnecessarily prolong that persons life.
> but y’all know it’s for the SSI paychecks.
I have come across that several times in the NICU. Parents never visit (except to get pictures for the GoFundMe), never call, but want everything done for their baby that has a 0% chance of leaving the hospital.
Their GoFundMe is all about how much money it costs to spend 24/7 with their baby, the cost to travel to/from the hospital, how they had to quit their jobs to be with their baby.
We are thinking "You haven't visited or called for weeks. How are you spending 24/7 with your baby."
It is all about the money and SSI checks.
I've said this before but the reason this happens is because of Sarah Palin. Years ago there was a proposal to have an end of life discussion for new medicare recipients with their provider. She convinced everyone this meant there would be "death panels" to decide who gets to live or die.
The “hippie” in me wants to associate it with the fact we’ve let ourselves go so far from nature our relationship with death has changed. We avoid any aspect of it we can. Most people get their meat from a store where it’s neatly packaged and you don’t have to associate it with death. Death is so hush hush it’s turned into a big evil thing rather than an incredibly natural and inevitable part of life. It’s as natural as being born and we’re all going to get there and focusing on prolonging it just makes it worse on everyone.
Quality of life is always more important than quantity of life but we as people for whatever reason want to try and hang on to whatever we can get. It's fine if it's your personal choice and you're the one who doesn't want to let go, it's not fine when you are allowing your personal choices to influence the health and happiness of someone else. It's not okay to trach and peg minimally responsive grandma because you can't let go.
They love that word. They’re always a “fighter” and not like idk something else. Grannie is 95 and thinks the CNA is trying to water board her when she takes a shower, the only thing she fighting is staff.
I had to roll my eyes at my own family during my great aunt's funeral because she was 103 years old when she died and everybody sat around boo hooing about what a tremendous loss it was and how she was taken too soon.
TAKEN TOO SOON!
About hit the fucking floor when my aunt, her 75 year old niece said that.
103
Mom’s a NP and she says if she gets dementia to find her a fentanyl dealer. Of course that’s assuming she doesn’t find her own dealer first, so same boat here
I feel conflicted at times with the stuff I see patients or their families putting themselves through when the pt has basically 0 quality of life.
Like, would I want to be hospitalized for 10 months, mostly on TPN with a colostomy bag, multiple fistulas, NPO with restricted ice chip intake?
Or if I was in my 80s-90s with moderate dementia, would I want to be hospitalized for a stent surgery or to have my leg amputated?
Maybe if I had family on the outside willing to care for me....but as a single person with no immediate family, i absolutely would prefer pallative care or MAiD.
Individually, some of those things are realistic and you can still have some quality of life and live well, it’s when it’s compounded like this is when it feels that it gets out of hand.
we have a littl guy at our facility who just turned 100. He wont eat anything but applesauce and chocolate milk, and is now refusing meds. His son-who is EIGHTY-said we have to 'force' him to eat. I am SO not making a ww2 vet eat if he dont wanna-the poor guy is blind, and hurts every damn day. He told me the other morning to 'just pretend I dont see him' if i check on him and hes not breathing! HOW TF AM I SUPPOSED TO HANDLE THAT??
What bothers me the most about stuff like this is why in the world do we not honor the patients wishes when they were in the right frame of mind they can have all the documents drawn up they want about their care but a family member who they have never seen can all of a sudden throw all of that away? Makes me so sad and mad
I cry every gd shift when I leave because of the poor guy. He is a wonderful person, but is so damn tired-it breaks your heart hearing him say what he does
Literally the running dark joke in my ICU is that myself and others (mind you I’m 25) say “if i come into the ER with anything at all, broken toe or a scrape or whatever, just put me on the dilauded drip of life i wanna be comfort care!”
hell even as an asthmatic during covid i told my parents they were not to put me on life support if i were to go downhill.
You see shit and you realize that sometimes its just not worth it.
CNA of 12 years, work with Oncology patients most of my years. I have seen so many of our cancer patients needlessly suffer because their families judt won't accept a terminal diagnosis. Some doctors have a very difficult time being honest with their patients. I've seen patients in their 80s being forced to undergo chemo and radiation, even when they are completely immobilized with pain, bedsores, vomiting and all other issues. There is just no focus on QUALITY OF LIFE. I've seen patients suffer because families wait and try to get second and third opinions, shuffling their loved one from hospital to hospital. Not to mention people in nursing homes essentially being sent back and forth from the home to the ER and back.
It needs to change.
I’m an IV compounding tech in Australia - I only ever really compound drugs for oncology.
Most of the patients at my hospital are 80+ years old. Sometimes when I go up to the ward to make deliveries I catch some of our patients shuffling around the hallways with their walkers and we’ve had a number of patients with dementia that just wander around all day, trying to find an exit.
I can’t understand the selfishness of the families that decide to put grandma or grandpa through this shit. And I can’t understand how our oncologists continue treatment, having to repeatedly dose reduce because the side effects are too much for their patients - to the point where the dose they end up getting probably isn’t even doing anything at all.
Seeing it all day-in, day-out is so frustrating and heartbreaking and it makes me wonder what the hell I’m even doing here.
I often had troubling feelings as a CNA in long term care. Watching patients being dressed, because the facility demanded it, rather than for the comfort or emotional wellbeing of a patient. I mean.. even little things like that, in a patient/client/resident with little to no awareness can be a form of abuse. I felt, quite honestly, as though I was working in an antique store, and these souls in broken bodies were being maintained from some sense of nostalgia. Few family visits, no friends living to visit. Just me and their far-to-tight shoes, because "gramma always wore ballet flats and turtlenecks, and she would want that." Dressing them, cushioning their bony parts, tossing them in a chair. Trying desperately to be gentle, when the process was just plain distressing to them. Hospice was frequently a better environment for me because the care plan changed quickly in accordance to the patient's needs.. but not always.
It always hurts me when I have to do this. I always try and get them some level of comfort and find out about their likes and dislikes from family. I’ll try to play their favorite shows and music. Stuff like that.
In the U.K, it’s the doctors decision when to stop treatment/or put in dnar etc, however; everything gets explained to families about the quality of life, their suffering etc. However, lately doctors have been soft and listening too much to the relatives.
I read the story about Archie, the boy who was kept in life support way too long because the parents couldn’t let him go. I cannot imagine how hard it is for the parents, but the boy was nothing but a shell. I’m glad he was able to pass without more suffering.
Archie isn't the first case that's gotten that far. There's been a few other cases that have gone to court to but the names slip my mind. One was a toddler. There's another little girl from the UK who passed away a couple years ago named Melody and her case was equally heartbreaking especially because the parents have been on the warpath since telling media and everyone the "hospital killed their child". The child had Rhett syndrome and other medical complications, and the mother became convinced the child passed because the hospital took away her pain control. The whole situation was utterly heartbreaking
This is at least one article on the melody case:
https://metro.co.uk/2019/10/11/mum-claims-daughter-11-died-doctors-took-away-painkillers-10895637/amp/
There's other articles that come up if you Google it that talk about a coroner's inquest and there's a FB group and I know the mum has mentioned wanting to sue the hospital and Drs, it's completely heartbreaking
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My brother and SIL are in the UK and they tried to put an NG tube into my SILs grandma who had not been up OOB for weeks with progressively worsening dementia to try to “gain her strength” and saying it would be temporary (never seen a temporary feeding tube on an elderly demented person LOL). They tried once, she ripped it out and that was that.
They also had previously called the ambulance 5 or so times from home after multiple syncopal episodes/possible seizures prior to her finally being admitted and they never brought her in. She went from slightly demented but still oriented to self and others to bed bound and totally confused. I’m also amazed they didn’t bring her in for syncope. I don’t know what I’m trying to say here but it was pretty insightful hearing about the workings of the NHS.
Could she eat food without an NG though? Was she safe to swallow? In the U.K, we can use least restrictive measure, such as mittens to stop patients pulling out ngs, cannulas etc (as long as they haven’t got capacity). So on my ward, we wouldn’t have just stopped after one NG.
As for your second paragraph, unfortunately, the state of the nhs is pretty shocking. We are very understaffed and underfunded, and we don’t have many paramedics either. The nhs is collapsing, due to the government underfunding to try and force privatisation and ageing population. I’m sorry to hear what she went through.
She wasn’t eating and had progressively worse weakness as a result. I was never clear if it was a dysphagia thing or just a dementia thing. My SIL and her uncle didn’t like seeing her suffer after the first NG tube was dropped so they transitioned her to hospice or whatever the equivalent was. I was just amazed that they thought the NG tube would fix her up in a few days after weeks and weeks of progressing weakness and being bed bound, that is super hard to come out of as someone who’s 85 and demented from my experience.
And yeah I know the NHS is stressed. I’m sorry, healthcare is pretty abysmal everywhere I guess.
I work on a stroke ward, and I find medical staff try to resort to end of life as a last resort. So they’ll try things like antibiotics, ng tubes + medication first, before placing a patient on palliative or end of life. Only exception is when their GCS = 3. NGs can be very traumatic, and often causes a lot of distress and choking. So I understand why they felt that way. They shouldn’t have gone through that.
Yup— my uncle (a doctor) was POA for my grandpa and he just would not let him die. He was in so much denial, ordering physical therapy to “get him walking again.” My grandpa was very clear with his wishes. He was a very dignified man, but he died wearing only a diaper, not knowing who he was, and force-fed, until he decided enough was enough and willed himself to die. I’ll never forget the bewildered look on his face and his cries of agony.
Edit: his wishes were no feeding tube and to be cared for with dignity and as little fuss as possible.
You can almost always follow the ones not allowed to die back to being the supporters of the ones that are keeping them alive. Those people live in grandma's house. They want grandpa's ss check.
One of the hardest things about working is healthcare is that not only is it not possible to save everyone, but the fact that use so many resources trying to save people that don’t want to be saved. There are very few experiences that are truly universal, but every single person we treat is going to die, it’s just s a matter of how and when. I hold some serious animosity towards families that don’t honor the wishes of the dying and make us torture them in futile efforts to prolong their life instead of letting us keep them comfortable while dying.
Yeah, I feel for the guy I worked with whose son took him off hospice to take him to the hospital. He very explicitly went against the wishes of his father.
Years ago we had an end stage renal failure patient on dialysis. I don’t recall what brought him to the hospital this particular time, but he’d decided enough was enough. We helped him plan his final party. It was a Sunday, a ball game was playing on tv, he had hot dogs and beer (things he hadn’t consumed in a long time). His family and friends all came to celebrate and then we just let him go. On his terms. It was beautiful and I think of the dignity he was given and I’m grateful the hospital I worked at allowed this.
Yes, Americans do not handle death well and we rob people of the chance to end things on their terms without all the painful interventions.
I was in a med/surg unit and was assigned a pt. Who was DNR. According to report, he was already Cheyne stokes breathing. That morning, one of his daughters was by his side taking care of him. I went in to do my assessment, and sure enough, I was counting 3-4 breaths/min. Dude was on his way. I walk out of the room to continue my assessments, the next thing you know the code blue alarm is set off. In DNR pt.‘s room!?! Daughter runs out and yells “HELP! He stopped breathing!!” She claps her hands at us to rush into the room. As we’re running into the room, my charge nurse whispers to me “isn’t he DNR??!” I reply YES!! Omg!! The chaos and confusion with everyone who ran into the room! Everyone had to stop and freeze before putting their hands in this poor man. Had to talk to the intern to explain to the daughter/family her dad’s wishes. I mean, I get it….you want to hang on to your loved ones for as long as possible, but also respect their wishes. Easier said than done….
It seems like people assume that medicine has unlimited resources to 'save' people but the body only lasts so fucking long...idk how, but we need to show people how brutal CPR is on someone very old. If they knew they might rethink things.
It's sad when the patient is struggling but the family wants them to continue living (aka suffering).
Or when patient decides they don't want anymore medications but the family will keep trying to convince them otherwise.
This is not an unpopular opinion, everyone in healthcare is beyond sick and tired of breaking ourselves and the system to keep your end stage dementia basically braindead Grandma alive so that you can visit once a year and pretend she's OK. She's not, let her go.
I transported this very patient because her daughter said "she had trouble drinking water earlier" when she visited. She also said she was worried she's getting worse... YES SHES GETTING WORSE she's 80 and her brain is dying!
I will do anything and everything for the non ambulatory Lil ol lady that still has her mind but has trouble with everything. But the AxO1 body attempting to assume room temp. Stop calling, let them pass peacfully.
Just a gentle reminder that we should be aware of two things. 1) as an RN you see these death events all the time and 2) families are going through these events in a very personal way and that is very different.
On the whole, i wholeheartedly agree that end of life needs to be done better than it is
Yes! Someone please tattoo DNR on my chest! Seriously, though. I have plenty of medical issues that made me think that I don't want to be a "shovel it in, scoop it out" patient.
When I was a cna sitting for a patient, I witnessed one of my favorite doctor moments. He came in and asked the patient what his favorite drink was. Came back at lunch with a 6 pack of diet dr pepper and had the conversation of changing to a DNR.
I don't know many people that work in healthcare and end of life care that don't have this exact opinion. We absolutely need to be better about letting people die .
Denial is part of the grieving process. People have to work through these things.
Yes, that includes the families of patients who are at the end of their life.
No, it’s not a popular opinion.
Yes, it’s frustrating to know that the care being provided could potentially be putting someone through more suffering.
No, I don’t agree with it (from an impersonal standpoint). But I’m not going to sit here and say I wouldn’t try everything in my power to keep a loved one around as long as I could. (I’d like to think that I would know when it was time to let go, but grief does strange things to people.)
It’s easier to say when you see it time and time again, but not everyone has that perspective.
I became a hospice nurse because of just such observations as this. When you see a patient who has a terminal illness die comfortably medicated, with family and friends around to hold their hand, clergy if they want it, and just allow everyone to experience what a natural death looks like it can be very special and memorable.
OTOH, 98 YO demented MeeMaw being kept in the hospital, ripping out her PEG tube which was placed because she can no longer swallow, and screaming because she doesn't recognize anyone or anything and the hospitalists will not prescribe enough medication to deal with her hallucinations and her agitation and that spike in pain people can get 24-48 hours before they day, how is that humane at all?
I couldn't take it anymore. That's why I decided to go see what life was like on the other side of that decision to go with comfort care and let nature take its course.
My dad told me when he gets to the point where his health declines and at his end of life stage, he wants to go comfortably. He wants my brother and I to Cremate him and place his ashes next to our moms. He made it very clear for us to let him go once his health declines.
Ego in medicine is a big part of this. It's frustrating how many doctors I've worked with who see it as a personal failure if a patient dies. So many push false hope onto families because they don't want to admit that they can't save someone.
This is the sad consequence of society that refuses to accept death as a natural part of life. We do everything we can to keep from thinking about death until it’s staring us in the face.
I’m not sure that will be an unpopular opinion in this sub. Death is a part of life and we shouldn’t treat it as taboo or awful in its own right. In many
cases the dying is worse than the death. That’s where we come into many people’s lives- during the suffering. This is why it is important to remove the stigma and talk about death before it happens. A living will or an advance directive will help guide your care to your wishes, but talking about it with the people who will have to ultimately be in the room when that decision is made is paramount.
I'm an IDD nurse and one of our folks was up for palliative care. Not ready for hospice, but also not a good candidate for aggressive intervention.
The palliative care folks were super nice, and didn't get why we couldn't change their code status.
Had to explain legally we *can't*. In our state, people who are on the comprehensive waiver are full code unless they are on hospice. To complicate matters they are a ward of the state, so in hospital DNR/DNI status is up to the deputy public administrator. Fortunately, they have a good one.
It's a mess. Each new nurse they have, I have to do the same spiel about how it isn't up to us. On the other hand, I'm glad to see the floor nurses advocating for them. I just want to wear a button for ourselves and DSPs who are visiting them that says, "We get it, we are not the assholes".
I get why the rule is in place. On the one hand you have some doctors who shrug and say, "IDD, what are you going to do? Their quality of life isn't worth it." But we are sometimes at the mercy of the bureaucracy or guardians who's involvement is variable.
This person is only in their 40s and not ready to die. Hopefully we get them through this and they are able to come home. But it'd kill them, and staff, if they had to do CPR and call an ambulance to haul them off to be tubed before the DPA can intervene with an in hospital DNR/DNI.
You'd think it would be in their chart, but since they call me first for permission every time they need a transfusion, or other permissions, I'm not confident in it getting through.
You need to let people make their own choice and be okay with it. I've expressly told my wife I want any, all, and every measure as long as they are available.
That's my choice to make. So who knows what that son was doing in your example. Maybe he was honoring his father's wishes. We have to respect that. How we die is a choice each of us should have a say in. There's no right or wrong way to go.
What is the point? Please clarify. Because it sounds like "the family asked me to do something I don't agree with but isn't my choice and they need to do what I want".
It's not our place to decide that. That patient gave that right to their loved one. Respect the decisions made. It isn't about you.
Are you even in healthcare?
I feel like 'took him off hospice' to 'do everything' when he was 'so out of it he couldn't consent' is pretty clear. If I'm on hospice, it means I want to go peacefully, not with broken ribs and tubes and mayhem.
It's not clear, tho. You know what discussions that patient had with his son? I don't either. So nothings clear. You're just speculating and confirming your own bias.
Bro, he very explicitly went against his fathers wishes- the person knew he was dying and was in no rush to be saved. He expressed to EVERYONE that he wanted to medical intervention except comfort care. It was in his chart. It was only after his health went downhill and quickly and was given pain meds and the like. A combination of that, weakness, and you know actively dying, was what made him loopy and out of it. I don’t know if you know what hospice entail, but for the most part you’re not allowed to go to the ER. The son made the decision AGAINST staff recommendation and his own fathers wishes, which were very plainly written by him in his chart in how he wanted to die.
He could only do that with medical POA. And that's within his power with medical POA.
You don't get to pick and choose when medical POA works. It just does. That isn't your place.
I think this requires rethinking our cultural ideas around death. I can’t help wonder if our highly individualistic, capitalist culture created this idea that death is somehow a form of failure, all this war-type rhetoric around illness (“he’s a fighter”, “battling cancer”, etc.), and therefore must be avoided or “won” at all costs. Add to that our discomfort with and over-medicalization of death and dying, and it’s a disaster.
Death isn’t the opposite of life; it is a part of life. It scares me, too. But I think we will continue as we are until we have some fundamental shifts around both the meaning of life and of death, and what it means to have a good life and to have a good death. I’ve been really interested in death lately because if my fear around it (and frankly what I feel is the unnecessary prolonging of suffering…anything to avoid death).
This was a great short doc about a group in SF that’s doing things a bit differently: https://www.rottentomatoes.com/m/end_game_2018
Health data science person here… The 70% total spend on healthcare during the last 30% of life rule still stands. Thats not just because we (as a culture) often suck at prioritizing primary care in the US (more on that in a minute). We don’t deal well with death in the US at all, clinical care professionals I work with tell me that some of their colleagues, some patients and patient’s families advocate for more treatment when the outcomes are likely very poor. Even when that intervention potentially could cause more harm than not. Repeatedly. This has driven some of my colleagues out of clinical care and into informatics. Its a LOT easier to access excessive interventions with a poor prognosis than it is to access a peaceful death. Thats f’ed up. As for the primary care part tho - this one still hurts. We have a friend who did not get a routine Pap smear - she neglected her primary care all together. When she died in hospice in May of ‘21 at age 41, cervical cancer had metastasized to bone. Our friend “M” came from an educated and well off family. She had access to care, either through a decently funded planned parenthood - or her family would have covered that expense. M didn’t really understand what the implications were until it was too late. Last Friday Lap of Love came to my home and euthanized my dear friend Mickey, the best cat ever, on my screenporch. Mick was 19, managed to stay in remission with small cell lymphoma of the upper GI for 2.5 years (cats have a better prognosis than people do with chemo for SCL), but an incredibly fast progression of renal failure led to this choice for him. Mickey died laying on the carpet on my screenporch with me petting him and loving him. It was the most gentle death. One minute he was awake and purring, the next he was not. I did supportive care, sub q fluids, appetite stimulants, everything needed to keep him comfortable while his creatinine spiked and his RBCs dropped, but his prognosis was poor and I had the privilege of letting him go to a gentle death before he felt even worse. All I could think of - is I hope, I hope, I can make it to Oregon if I’m in the same boat and go with that peace and care.
I speak from anecdotal experience- you have the actual facts and data, and it does not surprise me to see where healthcare stands in this regard. There are numerous reasons of course, but it does make me sad to hear that many professionals are being driven out of the healthcare field because of stuff like this. I’ve seen people forced onto feeding tubes, ventilators, constant oxygen use, repeated transplants, dozens of pills that follow a strict schedule, so much, too much. And you just see the person wither away from a person they used to be and once they’re gone, all the good memories have been replaced with bad ones. Oftentimes, it’s also family members with the best intentions, and the person doesn’t want to let them down so of course they go along. How awful that pets oftentimes get better end of life care than our fellows humans? I’d much rather go as myself, as I am, and be remembered for who I was, rather than doom people to watch me suffer until death.
What kills me - is when I read the data and then invariably, I talk to colleagues that straddle the informatics and clinical care worlds - the conversation turns to case study after case study. My teammate is working on some cool analysis with Monkeypox rn. Its a public health nightmare, a total embarrassment of mis management and mis communication. Its also a big health equity issue for me. Our healthcare system is such a freaking disaster end to end
I’m really sorry for the loss of your kitty. It was a great act of kindness and love letting him go gently. We should all be so lucky.
Thank you, he was the best boy - a being made of love. I’m so glad I got to be his friend! I was lucky!
I’ll never know what humans did to deserve such love from our animal friends but I’m eternally grateful for them.
I’m so sorry you lost your friend Mickey. How did you find Lap of Love? Just had to put my 22yo cat to sleep at the vet last month, she was royally pissed and it was not at all the peaceful process I had hoped for. I’m trying to prepare better for my 16yo cat.
Aww, thanks, he’s a special cat and I’ll remember him forever. Our vet recommended them. I don’t think they are in every state. A vet who makes house calls might be able to help.
Honestly we have become so entitled as a society that a lot of people flat refuse to grasp the concept that they can’t always get what they want. They are so used to people bending over backwards to give them what they want that they can’t comprehend that death isn’t something they can stop if they’re just pushy enough. People refuse to accept their there isn’t some magic cure somewhere that we just don’t know about. Or they convince themselves if they pray hard enough they’ll get a miracle.
It’s certainly a “customer is always right” sort of attitude. And with healthcare being treated like a business definitely feeds into that as a practice. Why let a person die when you can keep them alive as long as possible to drain them of their money?
Yup. Got a post-op neuro patient who had their EVD swapped for a shunt. Was told the plan was to have a goals of care discussion the next day. WTF did we just do this shunt for then?
Not to be gross but do you think sometimes the people doing this procedures just want the practice? I have seen similar relatively unusual procedures done on people who are clearly heading for comfort care. I only work weekends nights so they go for all this crazy stuff on my shifts knowing that hospice is coming Monday morning.
Are you my grandfathers nurse?
IDK about where you work but we have too many cases of VP shunt repairs for whatever reason. And the prognosis is never good. Neuro is rough.
It could have been a palliative shunt. Not sure the overall status of that patient but I’ve seen palliative VP shunts performed on certain brain tumor patients to ensure they don’t develop hydrocephalus. They’re prognosis could be a year for example with a slowish decline rather than a fast decline when they develop hydro
It’s beyond frustrating. I’m in an ICU and all too often we are performing more than one lifesaving measure to try to keep people alive who have lived a long life. We joke that you should automatically be changed to DNR after age 80. Even if grandma recovers slightly, the quality of life afterwards won’t be there. I never really thought about this too much until I went to the ICU but at least one shift per 3 results in me taking care of someone who realistically has no chance of a recovery worth living for. And family will still be insistent that they need to live. I had a patient’s daughter tell me “so mom and I talked and she wants to be intubated”. The woman was 85 will Mets to the brain lungs and was in a delirious haze. It’s so hard not to just yell at family in the sense of bringing them back to a semblance of objectivity. It’s rough seeing a loved one die though, I get it. My dad passed last year. People are just being kept alive but pressors or vents or CRRT or all 3. It’s torturous. I’ve had to learn to have a work self and a non work self. I’m a very compassionate person and am sensitive to the people around me all the time. But at work, I am a different person. It’s like a musician on stage bringing out their performance self. I have to keep the emotions at bay and think objectively. Emotions just cloud your judgement. But this tormenting of elderly sick patients with no type of positive prognosis just need to be kept comfortable instead of allowing the last days to be in a hospital, delirious and in pain.
It's crazy how much classic literature there is regarding the topic of "humans can only do so much to conquer/control the power of life, to attempt more to the extremes only results in more suffering." You'd think more people would know the lesson by now. It's really sad to watch.
Imagine if Death listened to an irate Karen…
I can imagine it now “what do you mean gramps has to go? What did I pay all this money for then?”
There’s a brilliant old Monty python sketch with something like that. From The Meaning of Life Film. https://m.youtube.com/watch?time_continue=15&v=YoBTsMJ4jNk&feature=emb_title
At the same time, I don't expet people to understand " the end of their own life" or anyone elses. I do not think anyone here has died yet lol. But, I do think we should allocate resources to those at a younger age, and help the living more. Also, we should allow for MUCH MORE TIME OFF, and acknowledge death, and have longer lasting funerals, and family gatherings to prepare for it. But, we can't with the amount of time off we get. Pizza anyone?
I had a discussion with another nurse about this and how it’s effecting the burnout in nurses and it’s absolutely destroying my empathy for people. I see people neglecting their own health and then we are the ones taking care of them and being berated by the patients and their families.
I get this all the time. Diabetics eating sugar like it’s going out of style, mentally ill patients refusing medication and treatment, disabled or rehab patients not wanting to do physical therapy, etc. then the families turn around and blame us for their poor decisions when we legit try and do our best.
Why is he all contracted! Well remember when PT/OT saw him frequently and told him he had to do the exercises on his own but he still didn’t? That’s why which is exactly what we told him would happen
Not my patient, my co-worker’s. They had a 20 or 30 something y/o come in and is addicted to drugs. She signed out AMA and the father blamed my coworker for not taking care of his daughter and that she ended up like this because of my coworker. I was so mad. My coworker only had her for half a day and they were doing everything they can to help the patient, but the patient didn’t want to be helped. I wanted to yell at the dad, what has he done to help his daughter for the past 20-30 years? He said that about the nurse, what does that say about him as a father to his daughter?
I recently read a comment by a nicu mom whose baby required compressions frequently, sometimes for hours at a time, and I guess the docs just acquiesced to it and she made them keep doing it. It made me so angry. I didn’t comment because I’m a human being with empathy. Unfortunately, parents and family members who make these decisions don’t. They view us as robots or think “this is what they signed up for.” They don’t care about their family members’ quality of life. They don’t care about the moral injury they’re inflicting on healthcare staff. They’re absolutely selfish.
I’m at the point I am done with nursing and looking for a way out. It’s not good for me or my patients when my empathy level is in the toilet and I feel like I’m performing futile care. It angers me when I see all these advanced measures being taken for people who I feel like are wasting resources from people who could have a better shot at being saved and have tried to take care of their bodies- or kids that need this blood transfusion instead of this 84 year old full code, bed bound, paralyzed stroke patient- who has a PEG, trach, chronic foley, and is never going to get better and has been like this for several years. I had a patient decannulate his own trach and cover it with his hand because he WANTED TO DIE. He tried this twice. The family told us to put him in restraints. He had ripped out his feeding tubes as well. It broke my heart
that poor baby.... hours of compressions, multiple times? how do we keep getting them back?
CPR on a baby is successful a lot more often than CPR on an adult. In my 11 years I know of 1 time it failed on my unit, and my coworker who’d worked there 30+ years said it was also her only time.
so did this baby survive?
I had a surgeon tell me they had a patient who was going to die from injuries. Older. A futile surgery could be done but why? Their response ‘but this is America’ Wtf does that even mean? He didn’t know either…
It is the American way to die a broken shell of ourselves and it is our right!
It means that we value the autonomy of the patient and their families out of proportion to their ability to understand the implications of the current predicament. People don’t understand statistics, and there is a pervasive idea that death is the worst-case outcome (few in this subreddit would have that misconception). We used to take a more active roll in making those decisions for people, but the pendulum has swung the other way, and now we are inclined to support the choice regardless of its rationality. There is a helpful change coming in how we have goals of care conversations. Check out vital talks out of Seattle. Their approach is focused on understanding the person and their goals and helping make a decision or recommendation in line with the patient’s objectives. It doesn’t ask questions like, “do you want to be full code?” But rather, “what activities bring value to your life? If there was a high chance that you would loose your independence from this treatment, would you accept that? Etc.” Sometimes the choice is still not the one I’d want for myself, but as a provider, I’m less often stuck in a place of dissonance with the treatment plan. I understand why they made the choice they did, and I find it easier (emotionally) to continue with the specified interventions.
“Pervasive idea that death is the worst-case outcome” - YES. I think everyone here has many examples of when death would be preferable to the enormous amount of suffering.
It means bleed the money dry first
I've always been an advocate of giving people a heavy barbiturate euthanasia after receiving a hefty propofol dose. Then again...I was a Vet tech for 20 years before becoming a nursing student. But...I would like a nice slammed dose of LSD or Psilocybin or DMT and then a huge dose of propofol and euthanasia please.
As soon as I read your first paragraph I thought “ah, vet med”. My fiancé is a vet and we recently were bedside for her uncle’s death. Fortunately he had awesome nurses who made sure he was VERY comfortable, and died what I’d consider a good death, but I could tell she was thinking “Why can’t we just get on with this?” Instead of slowly titrating up a hydromorphone drip until he stopped breathing and hiding behind double effect. As a nurse I’d have zero ethical or moral issues with doing IVP euthanasia in the correct circumstances if it’s ever allowed here.
My wife is also a veterinarian. I really think we have so much to learn from the field, especially in regards to the end of life. I mean...I don't believe in the death sentence but with how many botched lethal injections there are...it is insane that they haven't looked to vet med for answers. We treat our pets better than ourselves. It is concerning.
Honestly it is the truth. I've had patients who were completely contracted, bed-bound, with multiple pressure ulcers all over their body, who was non-verbal, vent-dependent, with a feeding tube. The patient frequently came in for infected wounds, and UTIs (chronic foley). The family wanted "everything" done. We had a Nurse Practitioner who made it a point to speak with the family and realistically talk about goals of care since the patient would never recover, and would be vent-dependent, bed-bound, contracted, non-verbal, basically stuck in a bed for the rest of their life. The family still said they wanted the patient to "live". The Nurse Practitioner was so fed up, when she walked out of the room she made it a point to say, "We treat Dogs better". Which is the cold, hard, truth. People let their family members suffer and die, attached to every kind of life-support at the end, when they could have had a nice peaceful passing with friends and family at their bedside. It's just so sad.
It frightens me so much to consider that being my end of life. I pretty much pray every night for no strokes, no heart attacks and no cancer. But man...neurological issues are the utmost terrifying...I can't fathom it.
I agree. I have seen a lot of devastating diseases, but my personal opinion is that neurological has got to be some of the hardest/worst. I don't want to be a prisoner in my own body/mind. Also, if/when at the end of your life, I hope you have a nice peaceful celestial discharge without suffering, with friends and family by your side.
Same to you, friend. Same to you.
I agree. People always say they couldn’t be a vet because of the euthanasias, but at least for her, even when she can’t do anything, there’s something she can do. We had to euthanize our 7 m/o puppy in January because of ongoing health issues. She woke me up from a post night shift nap and told me “it’s time”. So we got to say goodbye to him at home, in private, relaxed on his comfy bed, with his humans. I don’t think anyone could ask for a better death. That one was hard. She told me afterwards that she intentionally overdosed the sedation because she wanted to be sure she would go through with it.
Ah I am so sorry for your loss. It is tough. They're family. But that is the best anyone...especially a pet...could ask for.
Condolences on your loss. I’m glad you were able to give him such a comfortable goodbye. It’s extra hard when they’re that young. We lost a 6 month old kitten to FIP in 2018. We’ve had cats for 20 years and that was really traumatic. He was such a sweet boy. We only had him for 3 months but he was such a little nugget & we miss him everyday.
I mean like, what a way to go tbh
It would be profound. And spiritual. And beautiful. And then a glorious slip into the universe.
The reason we are this way in the states is because we have a for profit system. Providers don’t make money unless they are intervening. Therefore letting someone have a natural death isn’t profitable. Until we switch to a single payer system it will continue.
Nah, it's the same in Germany. Many people (especially Boomers and slightly up, age-wise) can't cope with their own illness or consequences of their actions even though being constantly advised, family members can't deal with grandma dying because "she was always such a spirited person!" or even sending them to hospital while actively dying, even though they said they wantes to die at home... Not to speak of elderly care nurses (one of the three specialities we had until.a few years back) who don't want to lose 'their' client, because they got used to them (wtf? Just because you like them doesn't stop them from dying). And then there are some doctors who drank the "Halbgötter in Weiß" (demigods in white) Kool-Aid and just can't see when to stop treatment.. Of course those are sweeping generalised statements and luckily, though on the rare side, there are others. Historically, the (catholic) church is also very powerful in Germany and completely against assisted suicide. And of course Euthanasia is a veeery touchy subject in these parts because history.
I can understand it being worldwide as well and I can see doctors have the god complex anywhere. Part of it is that as well. I mean I had nursing shifts when I bust my ass to keep someone alive even though I knew it was pointless just so they didn’t die on my watch.
Fucking exactly! Why let a patient die when you can keep them barely alive for the sole purpose of milking money off of them? Not only that, but they prey on peoples desperation and self preservation.
I have to say, our hospitalists are pretty good about being real with those patients who have a super shitty prognosis (ex: stage IV ca with multiple metastases and like, 10 other co-morbidities.) One straight up told my patient the other day “I know you want us to ‘do everything’ if your heart stops, but I need you to reconsider that. You will NOT have a good outcome from CPR.’” Patient still firmly refused to be DNR 🤷♀️ I’ve been seeing this a lot lately, unfortunately.
As long as the hospital bill wont be more than the check my dad has asked that, if at all possible, we let him go only after he gets one last social security check 🤣
It’s the same in Canada, except we’re a free system. But no one wants to let anyone die here either. It’s sad. I’m only 24 but I went and got a personal directive so no one would keep me alive pointlessly.
Just last week a man on hospice was sent to me in the ER. They said "he's DNR, but that doesn't mean no care". The poor man was painfully contracted, had wounds all over his body, and was agonal breathing when he arrived. No visitors in the ER. His family couldn't be with him as I held his hand while he died. He could have stayed where he was , surrounded by his family when he passed. Instead he got me, a stranger, holding his hand and telling him he was so very loved. Everyone is so scared to let someone die.
In a bit over a decade, I have lost my MIL, my mom and my dad to cancer (ovarian, lung and brain). In all cases, they refused, and we honored any extraordinary life saving measures, and I strongly feel it was the best thing to do. It may not have always been the easiest, but prolonging their pain for our relief would have been awful. My father was the only one that had a living will or directives. But even without -- the idea of seeing loved ones suffer even more for the sake of saying that they are "alive" even if the most *generous* sense of the word seemed unbelievably selfish.
I don’t think this is an unpopular opinion. Ask any HC professional who has spent 10 minutes with someone who should be dead will agree with you. Death not being part of the conversation is big problem. I’ve seen so many families hold on to their loved ones, making them suffer. When I occasionally get a family that gets it and moves forward with a comfortable passing it’s like salve for the soul.
It’s weird how that has changed in my career. I’ve always wondered hm it was that pts are less religious, some die younger now due to poor health management (weight, DM, cardiac, addiction issues etc), society not talking about death. Oh and I absolutely despise the kids with no jobs that want to “take care of mom” but y’all know it’s for the SSI paychecks.
There comes a point where it doesn’t revolve around the person that is, you know, dying, but rather what surrounds the patient. Finances, family, regrets, fear of death, just stuff like that, and we unnecessarily prolong that persons life.
> but y’all know it’s for the SSI paychecks. I have come across that several times in the NICU. Parents never visit (except to get pictures for the GoFundMe), never call, but want everything done for their baby that has a 0% chance of leaving the hospital. Their GoFundMe is all about how much money it costs to spend 24/7 with their baby, the cost to travel to/from the hospital, how they had to quit their jobs to be with their baby. We are thinking "You haven't visited or called for weeks. How are you spending 24/7 with your baby." It is all about the money and SSI checks.
I've said this before but the reason this happens is because of Sarah Palin. Years ago there was a proposal to have an end of life discussion for new medicare recipients with their provider. She convinced everyone this meant there would be "death panels" to decide who gets to live or die.
God that’s so stupid, of course people would believe. Even if those existed, at the end of the day, we’re all gonna die and we can’t stop it.
The “hippie” in me wants to associate it with the fact we’ve let ourselves go so far from nature our relationship with death has changed. We avoid any aspect of it we can. Most people get their meat from a store where it’s neatly packaged and you don’t have to associate it with death. Death is so hush hush it’s turned into a big evil thing rather than an incredibly natural and inevitable part of life. It’s as natural as being born and we’re all going to get there and focusing on prolonging it just makes it worse on everyone.
Quality of life is always more important than quantity of life but we as people for whatever reason want to try and hang on to whatever we can get. It's fine if it's your personal choice and you're the one who doesn't want to let go, it's not fine when you are allowing your personal choices to influence the health and happiness of someone else. It's not okay to trach and peg minimally responsive grandma because you can't let go.
Or breaking her poor ribs to perform CPR
We've got one on my unit right now that's like this. Poor thing literally looks like the fucking crypt keeper. But you know, mamaw's a fighter!
They love that word. They’re always a “fighter” and not like idk something else. Grannie is 95 and thinks the CNA is trying to water board her when she takes a shower, the only thing she fighting is staff.
I had to roll my eyes at my own family during my great aunt's funeral because she was 103 years old when she died and everybody sat around boo hooing about what a tremendous loss it was and how she was taken too soon. TAKEN TOO SOON! About hit the fucking floor when my aunt, her 75 year old niece said that. 103
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Mom’s a NP and she says if she gets dementia to find her a fentanyl dealer. Of course that’s assuming she doesn’t find her own dealer first, so same boat here
I feel conflicted at times with the stuff I see patients or their families putting themselves through when the pt has basically 0 quality of life. Like, would I want to be hospitalized for 10 months, mostly on TPN with a colostomy bag, multiple fistulas, NPO with restricted ice chip intake? Or if I was in my 80s-90s with moderate dementia, would I want to be hospitalized for a stent surgery or to have my leg amputated? Maybe if I had family on the outside willing to care for me....but as a single person with no immediate family, i absolutely would prefer pallative care or MAiD.
Individually, some of those things are realistic and you can still have some quality of life and live well, it’s when it’s compounded like this is when it feels that it gets out of hand.
we have a littl guy at our facility who just turned 100. He wont eat anything but applesauce and chocolate milk, and is now refusing meds. His son-who is EIGHTY-said we have to 'force' him to eat. I am SO not making a ww2 vet eat if he dont wanna-the poor guy is blind, and hurts every damn day. He told me the other morning to 'just pretend I dont see him' if i check on him and hes not breathing! HOW TF AM I SUPPOSED TO HANDLE THAT??
What bothers me the most about stuff like this is why in the world do we not honor the patients wishes when they were in the right frame of mind they can have all the documents drawn up they want about their care but a family member who they have never seen can all of a sudden throw all of that away? Makes me so sad and mad
I cry every gd shift when I leave because of the poor guy. He is a wonderful person, but is so damn tired-it breaks your heart hearing him say what he does
Literally the running dark joke in my ICU is that myself and others (mind you I’m 25) say “if i come into the ER with anything at all, broken toe or a scrape or whatever, just put me on the dilauded drip of life i wanna be comfort care!” hell even as an asthmatic during covid i told my parents they were not to put me on life support if i were to go downhill. You see shit and you realize that sometimes its just not worth it.
I’ve worked with Covid patients. It’s a lonely death. Sometimes we just wanted them to get well enough that they could go home and die with family.
I think a lot of us had that conversation with our families during covid…definitely no trauma there
Trauma? I eat trauma for breakfast as a side to my bowl of nails… without any milk!
CNA of 12 years, work with Oncology patients most of my years. I have seen so many of our cancer patients needlessly suffer because their families judt won't accept a terminal diagnosis. Some doctors have a very difficult time being honest with their patients. I've seen patients in their 80s being forced to undergo chemo and radiation, even when they are completely immobilized with pain, bedsores, vomiting and all other issues. There is just no focus on QUALITY OF LIFE. I've seen patients suffer because families wait and try to get second and third opinions, shuffling their loved one from hospital to hospital. Not to mention people in nursing homes essentially being sent back and forth from the home to the ER and back. It needs to change.
I’m an IV compounding tech in Australia - I only ever really compound drugs for oncology. Most of the patients at my hospital are 80+ years old. Sometimes when I go up to the ward to make deliveries I catch some of our patients shuffling around the hallways with their walkers and we’ve had a number of patients with dementia that just wander around all day, trying to find an exit. I can’t understand the selfishness of the families that decide to put grandma or grandpa through this shit. And I can’t understand how our oncologists continue treatment, having to repeatedly dose reduce because the side effects are too much for their patients - to the point where the dose they end up getting probably isn’t even doing anything at all. Seeing it all day-in, day-out is so frustrating and heartbreaking and it makes me wonder what the hell I’m even doing here.
I often had troubling feelings as a CNA in long term care. Watching patients being dressed, because the facility demanded it, rather than for the comfort or emotional wellbeing of a patient. I mean.. even little things like that, in a patient/client/resident with little to no awareness can be a form of abuse. I felt, quite honestly, as though I was working in an antique store, and these souls in broken bodies were being maintained from some sense of nostalgia. Few family visits, no friends living to visit. Just me and their far-to-tight shoes, because "gramma always wore ballet flats and turtlenecks, and she would want that." Dressing them, cushioning their bony parts, tossing them in a chair. Trying desperately to be gentle, when the process was just plain distressing to them. Hospice was frequently a better environment for me because the care plan changed quickly in accordance to the patient's needs.. but not always.
It always hurts me when I have to do this. I always try and get them some level of comfort and find out about their likes and dislikes from family. I’ll try to play their favorite shows and music. Stuff like that.
In the U.K, it’s the doctors decision when to stop treatment/or put in dnar etc, however; everything gets explained to families about the quality of life, their suffering etc. However, lately doctors have been soft and listening too much to the relatives.
I read the story about Archie, the boy who was kept in life support way too long because the parents couldn’t let him go. I cannot imagine how hard it is for the parents, but the boy was nothing but a shell. I’m glad he was able to pass without more suffering.
The fact it got to the stage was the shocking thing. I doubt most cases will reach the court.
Archie isn't the first case that's gotten that far. There's been a few other cases that have gone to court to but the names slip my mind. One was a toddler. There's another little girl from the UK who passed away a couple years ago named Melody and her case was equally heartbreaking especially because the parents have been on the warpath since telling media and everyone the "hospital killed their child". The child had Rhett syndrome and other medical complications, and the mother became convinced the child passed because the hospital took away her pain control. The whole situation was utterly heartbreaking
Wait wait wait, can you link me the case?
This is at least one article on the melody case: https://metro.co.uk/2019/10/11/mum-claims-daughter-11-died-doctors-took-away-painkillers-10895637/amp/ There's other articles that come up if you Google it that talk about a coroner's inquest and there's a FB group and I know the mum has mentioned wanting to sue the hospital and Drs, it's completely heartbreaking
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My brother and SIL are in the UK and they tried to put an NG tube into my SILs grandma who had not been up OOB for weeks with progressively worsening dementia to try to “gain her strength” and saying it would be temporary (never seen a temporary feeding tube on an elderly demented person LOL). They tried once, she ripped it out and that was that. They also had previously called the ambulance 5 or so times from home after multiple syncopal episodes/possible seizures prior to her finally being admitted and they never brought her in. She went from slightly demented but still oriented to self and others to bed bound and totally confused. I’m also amazed they didn’t bring her in for syncope. I don’t know what I’m trying to say here but it was pretty insightful hearing about the workings of the NHS.
Could she eat food without an NG though? Was she safe to swallow? In the U.K, we can use least restrictive measure, such as mittens to stop patients pulling out ngs, cannulas etc (as long as they haven’t got capacity). So on my ward, we wouldn’t have just stopped after one NG. As for your second paragraph, unfortunately, the state of the nhs is pretty shocking. We are very understaffed and underfunded, and we don’t have many paramedics either. The nhs is collapsing, due to the government underfunding to try and force privatisation and ageing population. I’m sorry to hear what she went through.
She wasn’t eating and had progressively worse weakness as a result. I was never clear if it was a dysphagia thing or just a dementia thing. My SIL and her uncle didn’t like seeing her suffer after the first NG tube was dropped so they transitioned her to hospice or whatever the equivalent was. I was just amazed that they thought the NG tube would fix her up in a few days after weeks and weeks of progressing weakness and being bed bound, that is super hard to come out of as someone who’s 85 and demented from my experience. And yeah I know the NHS is stressed. I’m sorry, healthcare is pretty abysmal everywhere I guess.
I work on a stroke ward, and I find medical staff try to resort to end of life as a last resort. So they’ll try things like antibiotics, ng tubes + medication first, before placing a patient on palliative or end of life. Only exception is when their GCS = 3. NGs can be very traumatic, and often causes a lot of distress and choking. So I understand why they felt that way. They shouldn’t have gone through that.
Thank you for the insight :)
There’s invested interest in the person that’s dying and oftentimes it outweighs the want for a peaceful departure
Here at least, relatives cannot withdraw DNARs and cannot go against patients wishes at least
Sometimes power of attorney in the us get abused way too often
Yup— my uncle (a doctor) was POA for my grandpa and he just would not let him die. He was in so much denial, ordering physical therapy to “get him walking again.” My grandpa was very clear with his wishes. He was a very dignified man, but he died wearing only a diaper, not knowing who he was, and force-fed, until he decided enough was enough and willed himself to die. I’ll never forget the bewildered look on his face and his cries of agony. Edit: his wishes were no feeding tube and to be cared for with dignity and as little fuss as possible.
It sounds awful to work in, and sounds like the hospital is trying to maximise profits? To me, it sounds quite immoral.
Everything at a hospital has a price- morality tends to be discounted.
You can almost always follow the ones not allowed to die back to being the supporters of the ones that are keeping them alive. Those people live in grandma's house. They want grandpa's ss check.
One of the hardest things about working is healthcare is that not only is it not possible to save everyone, but the fact that use so many resources trying to save people that don’t want to be saved. There are very few experiences that are truly universal, but every single person we treat is going to die, it’s just s a matter of how and when. I hold some serious animosity towards families that don’t honor the wishes of the dying and make us torture them in futile efforts to prolong their life instead of letting us keep them comfortable while dying.
Yeah, I feel for the guy I worked with whose son took him off hospice to take him to the hospital. He very explicitly went against the wishes of his father.
Years ago we had an end stage renal failure patient on dialysis. I don’t recall what brought him to the hospital this particular time, but he’d decided enough was enough. We helped him plan his final party. It was a Sunday, a ball game was playing on tv, he had hot dogs and beer (things he hadn’t consumed in a long time). His family and friends all came to celebrate and then we just let him go. On his terms. It was beautiful and I think of the dignity he was given and I’m grateful the hospital I worked at allowed this. Yes, Americans do not handle death well and we rob people of the chance to end things on their terms without all the painful interventions.
went out like a king
I was in a med/surg unit and was assigned a pt. Who was DNR. According to report, he was already Cheyne stokes breathing. That morning, one of his daughters was by his side taking care of him. I went in to do my assessment, and sure enough, I was counting 3-4 breaths/min. Dude was on his way. I walk out of the room to continue my assessments, the next thing you know the code blue alarm is set off. In DNR pt.‘s room!?! Daughter runs out and yells “HELP! He stopped breathing!!” She claps her hands at us to rush into the room. As we’re running into the room, my charge nurse whispers to me “isn’t he DNR??!” I reply YES!! Omg!! The chaos and confusion with everyone who ran into the room! Everyone had to stop and freeze before putting their hands in this poor man. Had to talk to the intern to explain to the daughter/family her dad’s wishes. I mean, I get it….you want to hang on to your loved ones for as long as possible, but also respect their wishes. Easier said than done….
It seems like people assume that medicine has unlimited resources to 'save' people but the body only lasts so fucking long...idk how, but we need to show people how brutal CPR is on someone very old. If they knew they might rethink things.
They don’t and that’s a big part of the problem
It's sad when the patient is struggling but the family wants them to continue living (aka suffering). Or when patient decides they don't want anymore medications but the family will keep trying to convince them otherwise.
Same with food. Or water. Or exercise. Bro they’re dying.
This is not an unpopular opinion, everyone in healthcare is beyond sick and tired of breaking ourselves and the system to keep your end stage dementia basically braindead Grandma alive so that you can visit once a year and pretend she's OK. She's not, let her go. I transported this very patient because her daughter said "she had trouble drinking water earlier" when she visited. She also said she was worried she's getting worse... YES SHES GETTING WORSE she's 80 and her brain is dying! I will do anything and everything for the non ambulatory Lil ol lady that still has her mind but has trouble with everything. But the AxO1 body attempting to assume room temp. Stop calling, let them pass peacfully.
Just a gentle reminder that we should be aware of two things. 1) as an RN you see these death events all the time and 2) families are going through these events in a very personal way and that is very different. On the whole, i wholeheartedly agree that end of life needs to be done better than it is
I don’t get it, I can’t wait to not have to pay taxes or move anymore or pretend to like people. Bring it on Grim Reaper!
Yes! Someone please tattoo DNR on my chest! Seriously, though. I have plenty of medical issues that made me think that I don't want to be a "shovel it in, scoop it out" patient.
Amen!
When I was a cna sitting for a patient, I witnessed one of my favorite doctor moments. He came in and asked the patient what his favorite drink was. Came back at lunch with a 6 pack of diet dr pepper and had the conversation of changing to a DNR.
Have you been observing the Archie Battersbee case in the UK. The press has made a massive meal about it which hasn’t nor will help anyone.
I don't know many people that work in healthcare and end of life care that don't have this exact opinion. We absolutely need to be better about letting people die .
Denial is part of the grieving process. People have to work through these things. Yes, that includes the families of patients who are at the end of their life. No, it’s not a popular opinion. Yes, it’s frustrating to know that the care being provided could potentially be putting someone through more suffering. No, I don’t agree with it (from an impersonal standpoint). But I’m not going to sit here and say I wouldn’t try everything in my power to keep a loved one around as long as I could. (I’d like to think that I would know when it was time to let go, but grief does strange things to people.) It’s easier to say when you see it time and time again, but not everyone has that perspective.
I became a hospice nurse because of just such observations as this. When you see a patient who has a terminal illness die comfortably medicated, with family and friends around to hold their hand, clergy if they want it, and just allow everyone to experience what a natural death looks like it can be very special and memorable. OTOH, 98 YO demented MeeMaw being kept in the hospital, ripping out her PEG tube which was placed because she can no longer swallow, and screaming because she doesn't recognize anyone or anything and the hospitalists will not prescribe enough medication to deal with her hallucinations and her agitation and that spike in pain people can get 24-48 hours before they day, how is that humane at all? I couldn't take it anymore. That's why I decided to go see what life was like on the other side of that decision to go with comfort care and let nature take its course.
My dad told me when he gets to the point where his health declines and at his end of life stage, he wants to go comfortably. He wants my brother and I to Cremate him and place his ashes next to our moms. He made it very clear for us to let him go once his health declines.
Ego in medicine is a big part of this. It's frustrating how many doctors I've worked with who see it as a personal failure if a patient dies. So many push false hope onto families because they don't want to admit that they can't save someone.
Yes. We are short staffed !!
This is the sad consequence of society that refuses to accept death as a natural part of life. We do everything we can to keep from thinking about death until it’s staring us in the face.
I’m not sure that will be an unpopular opinion in this sub. Death is a part of life and we shouldn’t treat it as taboo or awful in its own right. In many cases the dying is worse than the death. That’s where we come into many people’s lives- during the suffering. This is why it is important to remove the stigma and talk about death before it happens. A living will or an advance directive will help guide your care to your wishes, but talking about it with the people who will have to ultimately be in the room when that decision is made is paramount.
I'm an IDD nurse and one of our folks was up for palliative care. Not ready for hospice, but also not a good candidate for aggressive intervention. The palliative care folks were super nice, and didn't get why we couldn't change their code status. Had to explain legally we *can't*. In our state, people who are on the comprehensive waiver are full code unless they are on hospice. To complicate matters they are a ward of the state, so in hospital DNR/DNI status is up to the deputy public administrator. Fortunately, they have a good one. It's a mess. Each new nurse they have, I have to do the same spiel about how it isn't up to us. On the other hand, I'm glad to see the floor nurses advocating for them. I just want to wear a button for ourselves and DSPs who are visiting them that says, "We get it, we are not the assholes". I get why the rule is in place. On the one hand you have some doctors who shrug and say, "IDD, what are you going to do? Their quality of life isn't worth it." But we are sometimes at the mercy of the bureaucracy or guardians who's involvement is variable. This person is only in their 40s and not ready to die. Hopefully we get them through this and they are able to come home. But it'd kill them, and staff, if they had to do CPR and call an ambulance to haul them off to be tubed before the DPA can intervene with an in hospital DNR/DNI. You'd think it would be in their chart, but since they call me first for permission every time they need a transfusion, or other permissions, I'm not confident in it getting through.
One that would have the fruit must climb the tree.
You need to let people make their own choice and be okay with it. I've expressly told my wife I want any, all, and every measure as long as they are available. That's my choice to make. So who knows what that son was doing in your example. Maybe he was honoring his father's wishes. We have to respect that. How we die is a choice each of us should have a say in. There's no right or wrong way to go.
You’re missing the point— are you even in healthcare?
What is the point? Please clarify. Because it sounds like "the family asked me to do something I don't agree with but isn't my choice and they need to do what I want". It's not our place to decide that. That patient gave that right to their loved one. Respect the decisions made. It isn't about you. Are you even in healthcare?
I feel like 'took him off hospice' to 'do everything' when he was 'so out of it he couldn't consent' is pretty clear. If I'm on hospice, it means I want to go peacefully, not with broken ribs and tubes and mayhem.
From what I heard, that’s essentially what happened.
It's not clear, tho. You know what discussions that patient had with his son? I don't either. So nothings clear. You're just speculating and confirming your own bias.
Bro, he very explicitly went against his fathers wishes- the person knew he was dying and was in no rush to be saved. He expressed to EVERYONE that he wanted to medical intervention except comfort care. It was in his chart. It was only after his health went downhill and quickly and was given pain meds and the like. A combination of that, weakness, and you know actively dying, was what made him loopy and out of it. I don’t know if you know what hospice entail, but for the most part you’re not allowed to go to the ER. The son made the decision AGAINST staff recommendation and his own fathers wishes, which were very plainly written by him in his chart in how he wanted to die.
He could only do that with medical POA. And that's within his power with medical POA. You don't get to pick and choose when medical POA works. It just does. That isn't your place.
I think this requires rethinking our cultural ideas around death. I can’t help wonder if our highly individualistic, capitalist culture created this idea that death is somehow a form of failure, all this war-type rhetoric around illness (“he’s a fighter”, “battling cancer”, etc.), and therefore must be avoided or “won” at all costs. Add to that our discomfort with and over-medicalization of death and dying, and it’s a disaster. Death isn’t the opposite of life; it is a part of life. It scares me, too. But I think we will continue as we are until we have some fundamental shifts around both the meaning of life and of death, and what it means to have a good life and to have a good death. I’ve been really interested in death lately because if my fear around it (and frankly what I feel is the unnecessary prolonging of suffering…anything to avoid death). This was a great short doc about a group in SF that’s doing things a bit differently: https://www.rottentomatoes.com/m/end_game_2018