r/science • u/mvea Professor | Medicine • 8h ago
Cancer Study finds many doctors disregard wishes of cancer patients. Frequently, patients with advanced cancer simply want to be made as comfortable as possible as they wind down their final days. Many of these patients are receiving treatment focused on extending their lives rather than easing their pain.
https://www.upi.com/Health_News/2025/08/26/cancer-patients-treatment-wishes-study/7921756217134/2.7k
u/Harak_June 8h ago
Not surprised. I had to report my dad's hospice nurse for trying to withhold pain meds. "God wants each of us awake and aware of our loved ones as long as we can be. These just put him to sleep."
So even in end of life care, you have people who will ignore patient's wishes for their own agenda/beliefs.
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u/trying-to-be-kind 8h ago
Same thing happened to my aunt. Hospice nurses tried to withhold pain meds "because she might get addicted". What, for the two weeks she had left?
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u/deedeeEightyThree 7h ago
Makes me wonder if they weren't taking them themselves. Dark thought, but yeah. I hope someone's around to advocate for me when I pass.
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u/MechanicalBootyquake 5h ago
It’s called Drug Diversion and it’s a fairly common occurrence.
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u/lostshell 4h ago
Exactly what I thought. Bill for the drugs while pocketing them. The only witness to testify she never got them is going to be dead in a few weeks.
Drug diversion is a straight up euphemism created by the industry to hide what it is. Theft and fraud.
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u/GrossGuroGirl 5h ago
Dark thought
I would honestly rather find out they were stealing for themselves than that they chose to go into end-of-life care while secretly harboring insane ideas about dying people not needing pain medicine.
One of those is selfishness from a substance disorder. The other seems like premeditated torture.
I can at least make sense of the first one - who devotes their life to withholding medicine from hospice patients?
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u/jestina123 5h ago
Mother Teresa
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u/Protean_Protein 5h ago
Anjezë Gonxhe Bojaxhiu the Albanian, withholding comfort and care because “saving souls” is what really matters. Horrible person literally canonized by a sick death cult.
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u/HughJorgens 4h ago edited 4h ago
Yep her famous 'Hospital' was just a place for people to suffer then die. They weren't trying to cure anybody. And didn't her Nobel Prize money get kept and not used there? Edit: It was basically a painful Hospice. They did provide basic medical care like bandages and cleaning bedpans and stuff, they just made no attempt to get anybody better. Somebody Dm'd me then deleted the comment or something and said that the money thing was false. They sent a link to a r/badhistory thread. It says basically that the accusations are unproven. So a better level of believability than the accuser, but still not unproven either, which would settle the subject completely.
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u/Protean_Protein 4h ago
Malcolm Muggeridge was one of the main concocters of the mythos around her, and a billion Catholics ate up the idea that she was “helping the poor in India”—presumably most of them innocently believed that that meant giving them access to proper medical care. But all it was was proselytizing and glorying in suffering.
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u/GrossGuroGirl 5h ago
Excellent example, and exactly my point - I'd hope she was an extreme outlier, and not that a meaningful segment of the people working in end-of-life care are just... like that.
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u/just_a_wolf 3h ago
Claims against Mother Theresa are not substantiated. https://www.reddit.com/r/badhistory/s/fIIKbUiNJG
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u/BarbequedYeti 5h ago
They were.... have seen it 100 times before working in healthcare. Its so common they have their own treatment programs just for nurses and doctors who are addicts.
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u/TheRussianCabbage 3h ago
Honestly probably not dark enough. They were probably selling them to a street dealer.
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u/DarthArtero 3h ago
Understandable why you think that's a dark thought....
Unfortunately it does happen. I've no idea how common it is, just know it does happen.
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u/Ekyou 6h ago
My mom is in Palative Care for end stage COPD, one of the main reasons for that is so that she can, in theory, take all the bad-for-you meds without worry about long term risk.
She gets handed pain pills like candy (which she doesn’t even need that much of), but she got a new PCP or psychiatrist (I can’t quite remember) who was just absolutely adamant that she wasn’t going to give my mom any more Xanax. It wasn’t because of opioid interactions or anything, they just didn’t like benzos on principle.
And… I get it. But. MY MOM IS DYING. SHE HAS PANIC ATTACKS BECAUSE THE CONSTANT FEELING OF DYING IS REALLY SCARY. I don’t care if she’s a Xanax addict for the last year of her life, just give her her happy pills.
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u/Acceptable-Produce41 5h ago
How long ago was this? I work in healthcare and we just received a memo that states that they are now putting blocks to avoid having doctors prescribe their patients benzos while they are taking opiates. Something about research showing it has bad outcomes, but part of the exceptions i saw was cancer patients and hospice. Last few years i have seen how regulated controlled substances are to the point that it is becoming hard for ppl to get proper pain treatment.
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u/Ekyou 4h ago
That’s the thing is that there are potentially lethal interactions between morphine and Xanax, and if that were their fear, we would understand completely. But they said they weren’t concerned about the interaction because my mom only takes a very low dosage of morphine for air hunger. They just thought Xanax was too addictive.
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u/dnyank1 4h ago
Tough luck if you have anxiety and break your arm, I guess
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u/Rainbow_Sunshine101 3h ago
How many times can Americans do 180s on benzodiazepines and opioids? Older doctors must get a little kick on benzos where states had widespread complaining both ways often within the same decades.
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u/Swiftierest 2h ago
Sounds like a good time to threaten to report that unprofessional person to a board and request a new PCP/psychiatrist who will be able to meet the needs of the patient.
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u/WeenyDancer 5h ago
One of my parents had advanced terminal cancer, in hospice, given 'days, weeks, we don't know'', and they wouldn't manage pain with opiods for the same reason. Who tf cares?!
I will die on this hill that we have swung way too far in the other direction for pain management.
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u/Swiftierest 2h ago
I watched a Kurzgesagt video (science channel on YouTube I would link, but that's apparently a no-go here even when it is relevant and scientific in nature) where they explained why fentynal felt so good, but was a trash drug because the addiction rate and whatnot ruin your body forever.
If I'm dying, not believing in any immortal omnipotent being, shoot me so high that I see a non-existant god and make peace with them. Literally this video just made me think that everyone should be absurdly high on opioids during their final moments.
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u/TheTeflonDude 4h ago
As a caregiver in hospice I’ve lost counts of times the family of loved ones have withheld pain meds for that very reason
My ward has gotten in trouble for “giving too much” pain meds
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u/chapterpt 7h ago
If pain meds are prescribed by a doctor and controlled by nursing staff, addiction isnt a risk.
Physical dependence is a thing, but again if the order is respected as written by a doctor then at worst a person is tapered off.
The distress protocol that is typically scapolomine, dilaudid, and versed injected sub cue is common and ive administered it. When it risks letting the person check out without pain, typically a nurse finishing shift will push the meds and leave the unit.
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u/TantalusComputes2 7h ago
No idea what you mean by your last sentence
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u/Noctew 7h ago
It means: you give a cocktail that helps with the symptoms of actively dying, but also can push the patient over the edge of death, and you donʼt want to be near the patient then if youʼd have to resuscitate them. Youʼd want to find them later when they have peacefully passed away and it is too late for resuscitation.
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u/izzittho 6h ago
I presume this means when you know it’s what they want but might face some issues making it happen if you did it before end of shift, like if they don’t have their DNR or have family that would want you to ignore it but you know it wouldn’t be worth it to make them suffer a resuscitation and they’d agree?
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u/VRTemjin 5h ago
Euthanasia is taboo, so this is the nurses granting that mercy with plausible deniability.
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u/sadi89 5h ago
I do this for a living and have specific education in end of life and I’ve never heard of that cocktail. Those are all common drugs used for comfort at end of life but not given at the same time. These also don’t tend to the first line of treatment in the area that I live in.
This may be more common in an ICU setting? I’ve never worked in that environment so I can’t speak.
These meds are routinely given throughout a shift, not just at the end. Sometimes patients die shortly after administration of opioid medication sometimes they don’t. It’s more coincidence than anything else, these patients are at the very end of life and are going to die with or without medication.
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u/EusebioFOREVER 6h ago
nurse gives meds as prescribed by MD. Did you address this with the doctor?
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u/trying-to-be-kind 6h ago
Of course we did. The doctor had prescribed them without any issue; this was a case of a couple over-zealous attending nurses who were trying to dissuade the family from "overmedicating" an 85yo dying woman in extreme pain. Doctor was called in, medication was then dispensed...because family members were actively advocating for her at the time.
But what was going on behind the scenes after we left? And how many people have no one advocating for them at all? These are the real problems, unfortunately.
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u/flakemasterflake 4h ago
Ok but that’s clearly not a doctor at fault here. The misleading title refers to MDs
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u/saints21 5h ago edited 5h ago
There's a good bit of leeway in the "prescribed by MD" bit with something like a pain med. Even with drugs keeping someone alive, the nurse is the one titrating them and making adjustments based on patient condition. If they feel the current orders don't allow for enough or they've been able to titrate them down to the point of trying to ween them off, then they go to the doctor and get an order to change dosages or possibly discontinue.
That said, it's freaking hospice. Just give them whatever you can within the orders.
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u/Annual_Strategy_6206 3h ago
Happened to my spouse's Gramma in Florida. So much pain from end stage cancer
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u/an_african_swallow 17m ago
Someone in HOSPICE care might develop an addiction? God damn that’s stupid
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u/notmyfault 7h ago
Uhhhh I would have contacted the Board of Nursing. That is wildly unprofessional and unethical.
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u/tyler_t301 6h ago
once that nurse puts god on the phone with the Board, I'm sure this will all get straightened out
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u/EllipticPeach 6h ago
This happened with my grandfather recently. They were worried that his kidney function might deteriorate if they gave him the pain meds/end of life care that he needed. Which was stupid because his entire body was shutting down anyway. They also refused to place an IV for some reason, even though he physically couldn’t eat or drink or close his mouth at that point. His lips were so dry they were crusty.
I think seeing him in the hospital before he died was genuinely traumatic for me and my family because he was so obviously suffering and the staff were so matter-of-fact about it.
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u/sadi89 5h ago
The body does dry out as it dies. That’s part of the process. I’m sorry that they didn’t provide him with lip and mouth moisturizers and water sponges to help with any discomfort he may have been experiencing.
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u/EllipticPeach 2h ago
They actually did provide him with sponges but didn’t use them. They were lying on the table til my mum used them and kept using them the whole time we visited. The day before he died, my dad asked if my grandfather wanted something a bit stronger… he snuck in gramps’ favourite ale and soaked the sponge in it. The look on grandad’s face was totally worth it, he enjoyed every last drop.
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u/ycaivrp 4h ago
Doctor here. The IV would be against comfort care unless it was running pain meds. You not hydrated over IV at end of life. Ofbhis lips are dry use ice chips. iV fluid will make him more uncomfortable
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u/WickedLies21 5h ago
Hospice doesn’t do an IV at end of life for many reasons. The first, it’s invasive and painful. The second- the body knows what it’s doing. It’s supposed to dry out before they die. They no longer feel thirst or hunger. If we give IV fluids at end of life, the body cannot process it properly anymore and they end up third spacing the fluid. This means, the fluid swells up all the tissue in the body causing edema and the patient begins to basically drown in fluid in their lungs. It’s an awful way to die. In hospice, we provide mouth swabs and educate family to provide mouth care every 1-2 hours to keep their mouth & lips moist. I’m sorry that the hospital staff did not provide proper mouth care for your loved one.
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u/Pazuuuzu 4h ago
The second- the body knows what it’s doing.
No that is not how it works. The body is clinging to life as best as it can.
It's just the part that regulate fluids already broken down and an IV does not meaningfully help anymore, in fact makes it worse... But the body still trying it's best, with what it still have until the bitter end.
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u/aris_ada 7h ago
"God does not exist, please fulfill my dad's wishes" would be my answer, but if you are in a catholic hospice you're out of luck, dying in dignity is not possible there.
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u/RobsSister 2h ago
When my mom was dying, I refused to use hospice from any religious-based hospitals. I found an independent hospice who would come to her home or the hospital. They were wonderful; they ensured she was comfortable at all times and not in pain - not ever.
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u/LongPorkJones 5h ago
My wife is a hospice nurse, and the ones with this mentality are one of the bigger pains in her ass.
Depending on the company or the physician who signs off on orders, hospice nurses can have as much, as little, or more autonomy than nurses in a hospital environment.
Some come in to the field with the same mindset they had in the hospital of restricting X because of Y, while others have a mindset of "If they're in pain, they shouldn't be. If the diabetic wants one Pepsi a week, give them the damn Pepsi - the extra calories help sustain quality of life and it makes them happy. If they're anxious, give them something for it". The latter is the ultimate goal of hospice, maintaing the balance of comfort and quality of life during the dying process. The patient's needs and wishes are paramount.
Then you get fruitcakes like this who try to impose their morals on people who are at the end of their lives. They're the folks who put the biggest black mark on the field. You did the right thing by reporting them. I'm sorry that your family had to deal with that.
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u/MsCardeno 7h ago edited 7h ago
I had the opposite experience with my 47 year old mother on hospice.
She would only want pain meds some days so we gave it to her those days. Some days she would feel great and have this bounce of energy. The nurse would visit and ask why we haven’t been giving her the medicine. We said she hasn’t asked for it. She said we should be giving her the full dosage every day.
They convinced us to put her in respite care so my sister and I could have a break. She was dead 3 days later. I truly believe it’s bc they gave her the pain meds at full dosage.
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u/pantsattack 6h ago edited 6h ago
Firstly, I’m sorry for your loss and for the way the facility handled this.
But I need you to know: pain meds aren’t going to kill someone like that unless it’s an overdose or unusual reaction. And her vitals should have been measured for any reaction to the drugs. Your mother was in hospice. Even if she had lively days; she was going to die at some point. The drugs were almost certainly not the reason.
I’d be more concerned about the nurse not listening to what makes a patient most comfortable and if that somehow maybe led to a decision or (accidental) oversight that expedited your mother’s death. But, unfortunately, there’s no way to know for sure.
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u/MsCardeno 6h ago
Her heart was weak yes. She was going to die soon, yes. These things are true. The pain meds slowing your heart rate also helps speed up the process is also true.
I’m not saying they did anything wrong. I’m just saying my experience was very different than the one I was responding to.
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u/WickedLies21 5h ago
I’m a hospice nurse and have been for the last 4 years. Pain medication doesn’t speed up death. This is a very common misconception and very untrue. It doesn’t speed up or slow down the process, it just makes the dying process less painful. Any time that you move a patient- from home to a respite facility, or respite to home, we often see a significant decline in patients. When a patient is transitioning, we do not recommend transferring them at all due to this. Even a stable patient, can begin a significant decline after a move. I would blame her decline potentially on the move but I can guarantee it wasn’t the pain meds.
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u/pantsattack 6h ago
I think both your comment and the one you responded to both show the sad results when doctors/nurses don’t listen to their patients. Modern medicine is proof of the value of science, but modern hospitals and health care are truly awful and unfair sometimes.
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u/schizboi 3h ago
Im sorry but your mother was in hospice, the meds arent what killed her. Obviously this is a personal thing and im not trying to argue with you or change your mind, but I think you can let this go or consider it. It was nobodies fault, just time.
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u/Alklazaris 6h ago
I mean at that point I might as well be home.
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u/saints21 5h ago
Hospice care usually is in-home care. The idea is that you're just getting drugs/care that ease your life as opposed to getting treatment that keeps you alive. Most people with terminal illness prefer it because dying at a hospital sucks ass.
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u/0L1V14H1CKSP4NT13S 5h ago
Most physicians and medical professionals choose to die in the comfort of their own home. Make of that what you will.
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u/ladeedah1988 4h ago
Because they have proper access to pain relief. My father and a friend died a horrific death at home under home hospice care. I wasn't at the friend, but at my father and hospice did not do their job.
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u/IrrelevantPuppy 6h ago
I guarantee you that on her death bed the pain was different and god would understand.
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u/flakemasterflake 6h ago
A nurse isn't a doctor. I find it telling that the headline demonizes doctors and every anecdote references nurses
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u/weeb2k1 4h ago
I'm sorry you had to go through that. We were fortunate that my dad's care team was top-notch. He was the one who wanted to fight, while the doctors strongly encourage a palliative approach to make the most out of what time he had left. By the time we were in hospice his care manager basically said our goal was to ensure he felt little to no pain or anxiety . Not once was he denied a drug or treatment that would have made him more comfortable.
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u/Brilliant_Effort_Guy 7h ago
I wonder how much the patients families play into that decision too. I know sooo many people who have felt like doctors didn’t do ‘enough’ to keep their loved ones alive. And then the lawsuits start. I think most doctors would like to provide their patients with compassionate, comfortable treatment options but fear the repercussions. I hope one day we get to a place, at least in the US, where we aren’t so consistently and vicious fighting against natural death.
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u/NakedJaked 6h ago
Sometime you can go gentle into that good night.
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u/Brilliant_Effort_Guy 5h ago
Yes. One of my best friend’s father in law was diagnosed with ALS maybe 2 years ago. After about a year, he told the family that he planned to go to a ‘compassionate Care’ clinic in Vermont that offered medically assisted s*icide. He worked in healthcare so he knew what the prognosis was. He wanted to spend his last remaining months and days seeing his family and friend before he left. When he finally did decide it was time, his family said it was how they wish they go one day. Calm, surrounded by family, on their own terms. I thought that was so brave and beautiful.
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u/unwisest_sage 5h ago
Went through this with my wife's family and their 95 year old grandma last year. They just always felt like they medical teams weren't doing enough. But the reality is her body was so old and dilapidated that so many systems were starting to fail, and you treat one system and it just screws up another. Eventually the body is held together by shoe strings and rubber bands.
They couldn't accept she was going to pass. Like medicine is just this perfect science that should be fixing you 100 percent of the time and you should live to 150. A woman who hasn't been able to walk for 15 years. Sometimes after the funeral I heard rumors of attempting a lawsuit but that finally died down. They spent so much energy angry at doctors.
It was hard for me to sit on the sidelines through all that.
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u/Medarco 5h ago
I work in a hospital in an aging community, and we see this a ton. After enough experience with patients, you start to get a pretty good feeling of who is on their way out. I've personally witnessed over a dozen deaths in front of my eyes, and watched idk how many discharge to hospice.
But most families don't have that same experience, thankfully. Their world is shattering right in front of them, and they feel powerless. As heartless as it sounds, to us, it's just a Tuesday...
So many families demanding transfers to higher levels of care, and we're telling them the patient may not even survive the ambulance ride. No, antibiotics aren't going to matter much, meemaw has cancer and her lungs are full of tumors. Sure we can treat the pneumonia, but you need to be thinking about end of life care. Yes, there is a surgery for his heart, but papaw is 96 with ESRD and dementia, you're literally just forcing him into a momentarily prolonged tortured existence for your own ignorant conscience.
It's really really painful, and it's very easy to become jaded and burnt out.
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u/stoneandfern 5h ago
My mom has worked in an ICU for 40+ years. She has seen a lot of death. She has had families ask for brain transplants. She has people demanding CPR forever on 85+ year olds. Grief is wild.
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u/Brilliant_Effort_Guy 5h ago
Yeah seriously! The weird thing about death and dying is that it’s usually more about the people around the terminally ill person and not the actual person who is sick.
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u/PM_ME_SAD_STUFF_PLZ 4h ago
The Pitt has a great subplot involving this. I think they did a great job showing the heartbreak and grief family can go through and how it manifests as selfishness.
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u/sum_dude44 3h ago
as a Dr I promise you it's the family/POA 95% of time. I get hospice patients sent daily to ER whose families want us to "do something" to patients who are actively dying, including sometimes even CPR & intubation
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u/PM_ME_CATS_OR_BOOBS 4h ago
Sounds like the so-called "Daughter from California", insisting that everything be done no matter what the patient actually wants.
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u/sionnach 3h ago
I was just about to comment this. It happens all the time. I’ve seen it in my family twice, and I think a third time brewing where my dad needs an easy path for the next while.
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u/haw35ome 4h ago
This is why DNRs (Do Not Resuscitate) & power of attorney letters are so important. If I didn’t consent to my parents making medical decisions on my behalf, I possibly wouldn’t be here today. Twice. I have one (the latter) in place now, should it happen again.
Actually, perhaps the hospital staff would have done everything to keep me alive. I believe the “default setting” is to keep the patient alive by all means, until it is 1000% impossible to do - despite patients’ wishes
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u/flakemasterflake 6h ago
I can't believe the headline is putting this on doctors when it's always the families pushing for more until the very last minute
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u/bbossolo 5h ago
For me it was the opposite of this post, they wanted go palliative while I was blindly asking for better treatment for my mom.
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u/JuanOnlyJuan 3h ago
If they don't provide the standard of care they open themselves up to negligence lawsuits later. If your wishes are important put them in writing.
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u/real_picklejuice 2h ago
I had something like this happen when a relative suffered an aneurysm. The team, and my family, was pushed heavily on how well she would recover, so we opted to do what was necessary to extend her life.
She obviously never recovered and spent her last 12 years as a shell of her former self in a chair. Barely spoke, rarely recognized her children, couldn't comprehend that her own mother had died; just no dignity and a lot of pain.
Everyone in my family made a pact that it will never happen again if something similar falls on us.
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u/therevisionarylocust 7h ago
I find that so fascinating working in a hospital and all providers seem so burnt out and jaded how families refuse to make these sorts of patients comfort care. In my limited experience, more often than not it’s usually patients and/or their families who are holding on to extending the life in the face of grave expectations.
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u/RespecDawn 7h ago
My mom will complain about how the oncologist pushed chemo on my dad when he had advanced bone cancer. Except I drove them to the appointment she references and remember them saying she offered it as an option, but didn't think it would change anything or be very beneficial. Then they chose one more chemo themselves.
I imagine it's a tough job to sort through the memories of people who've gone through that trauma and cone out with reliable data.
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u/NoConfusion9490 5h ago
Cancer patients and their families have so much guilt over every aspect of it. They all want to do what's "right," but there's no perfect answer. It's hard to let go when you feel like you're giving up on someone. And, afterwards, it's hard not to wonder what you should have done differently.
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u/lilbelleandsebastian 1h ago
therein lies the rub - futile care shouldn't be offered at all. what most families actually want in this situation is to have the burden of choice removed because with choice comes guilt.
"your dad has stage 4 cancer and it is likely terminal, but we can give him chemotherapy to give him more time"
"i'm sorry, there's nothing more we can reasonably offer for your dad because of how advanced his cancer is. we are going to focus all of our energy on making sure he is comfortable and surrounded by family"
same case, different outcomes because the physician approached the conversation differently. people always think there is some miracle cure for cancer, so any treatment offered is seen as hope for that miracle. oncologists are rarely completely honest and even when they are, people will still ignore the negatives and cling to the positives because that's human nature.
it's a fine line between paternalism and good medicine, cancer is tricky, but i think in the US we opt for paternalistic bad medicine more often than not
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u/ineed_that 6h ago
Agreed. You’re basically sacrificing quality of life for longevity. Chemo has many side effects you’ll be chasing .. and most of these patients end up dying tragically in a hospital after multiple admissions and procedures as they pick up horrible diseases from being immunocompromised
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u/IrrelevantPuppy 6h ago
I think this points towards it being a systemic/humanity issue rather than a doctors issue. There are a group of humans who believe so strongly in their convictions about how death happens that they feel they have the right to dictate that for others. Sometimes they’re family members, sometimes they’re medical professionals.
The problem isn’t medicine, it’s these kinds of people.
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u/Complete_Photo6703 4h ago
the whole "sustain life as long as possible and extend our lifespans to be as long as possible at all costs because humans are superior" has really fucked us. I can't help but think it has a lot to do with extracting as many years of labour from us as possible.
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u/mvea Professor | Medicine 8h ago
I’ve linked to the news release in the post above. In this comment, for those interested, here’s the link to the peer reviewed journal article:
https://acsjournals.onlinelibrary.wiley.com/doi/abs/10.1002/cncr.35976
From the linked article:
Study finds many doctors disregard wishes of cancer patients
Frequently, patients with advanced cancer simply want to be made as comfortable as possible as they wind down their final days.
Doctors aren't listening to their desires, a new study indicates.
Many of these patients are receiving treatment focused on extending their lives rather than easing their pain, researchers reported Monday in the journal Cancer.
In fact, they are twice as likely to say they're receiving unwanted life-extending care than patients with other critical illnesses, results show.
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u/Soliden 7h ago
Is that taking into account palliative chemo? Couldn't treating the cancer be effective too, such as keeping the tumors small for example, be effective at managing pain and making the patient more comfortable?
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u/ineed_that 6h ago
You might be thinking of palliative radiation which is more focused on a small area. Usually cancer pain is treated with opioids and other meds
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u/FrenchHornMD 6h ago
As far as I can see in this abstract it is based on patient reports. So it is quite subjective if that is true though the manner how these reports are collected isnt clear to me. Is this a US-only study? Can't see where this data was collected. In my experience we are quite liberal with euthanasia and palliative sedation. The family is mostly the biggest slowing factor in organizing appropiate care. This being said, our experience in primary care is that it is mostly the tertiary centres which keep focussing in lifeproloning treatments. Often downplaying the severity and frankly being dishonest. But this only my experience as a European GP.
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u/HerculesIsMyDad 5h ago
This is certainly a factor, families can pressure patients into doing treatments they otherwise wouldn't want. Some patients will also just go along with whatever the doctor says and not express their wishes openly. We should of course take every opportunity to remind providers to respect patient's wishes, but I feel headlines like this will just be picked up on people who have a bone to pick with doctors, or just one particular doctor, and use it as proof that doctors all suck and their favorite "wellness" influencer has all the real answers.
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u/meowingtrashcan 5h ago
OP, do you think the methodology of this paper actually supports this article title and argument?
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u/EusebioFOREVER 6h ago
The cancer itself causes pain. If you can kill enough cancer cells you can not only extend life but also provide pain relief.
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u/Tleilaxu 7h ago edited 7h ago
This has not been my experience in clinical practice, if anything I often bring up a transition to comfort focused care and am frequently met with resistance, push back, and a desire by patients (often their families) for longevity-directed care. Obviously this is just my anecdotal experiences. But the devil lies in the details of the survey and HOW patients were asked the two questions:
Would you prefer either
1.) Medical care that focuses on extending your life as much as possible, even if it means having more pain and discomfort? OR
2.) medical care that focuses on relieving your pain and discomfort as much as possible even if that means not living as long?
Who would rationally pick number 1 over 2? Who wants suffering? The whole point of palliative chemotherapy is to not only extend life but to relieve suffering and improve quality of life which in some instances includes pain. When you are posed with a survey that gives you the option of living longer and suffering versus option 2, most would pick number 2 - which still encompasses philosophies entrenched in providing palliative chemotherapy, I think this is a flaw in the survey design. What we do as oncologic providers is not so grey.
Given the survey methodology I'm not sure I personally am convinced of its results
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u/DiabloHunter96 7h ago
Agreed. To add to this, I think there’s also something to be said about the conflict between patient’s wishes and their family’s. It was not at all infrequent to have this clash play out where the goals of care vastly change after family gets involved, only really caring about their own feelings. Sometimes they’d just wait until the patient was unable to make their own decisions before taking over. Sad situations all around.
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u/RandomBoomer 5h ago
I was appalled to learn (many years after the fact) that my mother was guilty of that interference when my grandfather was at the end of his life. She wanted the doctors to extend his life as much as possible, but fortunately my grandmother and uncle prevailed in just letting him slip away.
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u/DiabloHunter96 4h ago
The worst example I have been a part of was seeing 4 siblings concur with their mother’s stated DNR preference, only for the 1 remaining sibling (who had medical power of attorney) change the code status once parent was obtunded. The parent in question survived the acute stage, but was absolutely livid with their child.
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u/Johnny_Appleweed 7h ago edited 6h ago
As far as I can tell, what the study actually found is that 37% of patients who expressed a preference for comfort-focused care were receiving life-extension focused care. I don’t think they actually investigated the reasons why or how those decisions were made, so stating that doctors are disregarding patient wishes in the headline is pretty irresponsible. There are lots of possible explanations for that discrepancy, and while doctors disregarding patient wishes could be one of them, this study doesn’t actually show that. For all we know those patients are choosing life-extension care for their families even though they would prefer not to do it.
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u/DaisyRage7 56m ago
I completely agree. A lot of these studies end up skewing the questions to get their desired result. A postdoc in my lab did a study like this that concluded patients will accept a terminal diagnosis if they have a family to talk to about it. Every single patient in their study was millionaire. It was ludicrous.
And for what it’s worth, I lost two loved ones last year to terminal cancer, and both were treated with dignity and lived their final days in comfort.
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u/gas-man-sleepy-dude 7h ago
Article is paywalled. Abstract says, « post hoc cross-sectional analysis of baseline survey responses« .
So I am unclear how the question was asked, if these patients HAD advanced directives that were ignored vs NOT questioned by their physicians prior to starting treatment vs WERE questioned but « wanted their cancer treated ».
As an anesthesiologist every week I am involved in surgeries that patients (and their families) want that I think has little long term benefit and potentially even harm for the patient. The number of late 70, 80+ year old patients who want CPR is crazy (you are in your 80s, we provide effective CPR that likely breaks a ton of your ribs, you are on a ventilator for days to weeks, your course is going to be poor even if you are in the 10-30% we do successfully resuscitate).
Fortunately in Canada we do have access to MAID, medical assistance in dying, and many are choosing to leave their mortal coil on their terms, comfortably, with family at their sides.
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u/Majestic-Effort-541 7h ago
Honestly a lot of this comes down to how messy end-of-life care really is. Even if a patient says they’d prefer comfort over aggressive treatment families often push doctors to “do everything possible” because letting go feels like giving up.
Doctors aren’t just acting on their own either they’re working in a system that rewards intervention (financially, legally and culturally) far more than it rewards stepping back.
On top of that, the way these surveys are framed suffer longer vs. live shorter but comfortable is a bit misleading.
Palliative chemo for example isn’t always about more suffering sometimes it does bring symptom relief or a small survival benefit.
But nuance gets flattened into a binary choice which doesn’t really reflect what happens in practice.
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u/KansasKing107 5h ago
Yeah, end of life is a tough topic and there isn’t always a right or even good answer. The biggest issue I see is doctors don’t spend as much time with the patients as the family does and that leads to issues. Family members may know it’s grim but doctors see test results and don’t necessarily spend enough time with the patients to fully understand where things have truly progressed to. Plus, family members may not communicate the best and often hold out for a long shot miracle.
On top of all this, patients with advanced issues like cancer may be talking to two to four different doctors depending on the situation. You have to the primary care doctor, oncologist, radiation oncologist, and possibly a surgeon. Those doctors don’t always have good documentation or communicate well.
I don’t like people trying to equate the whole situation as the medical system trying to squeeze money out of people because it doesn’t always operate like that and it causes the conversation to shift to one of purely financial and economic considerations. That doesn’t help an actual family trying to make a real decision.
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u/mottledmussel 2h ago
But nuance gets flattened into a binary choice which doesn’t really reflect what happens in practice.
I don't think I really understood this until a very good friend of mine had a brain aneurysm.
None of the options were good and no outcome was anything close to guaranteed. His wife agonized over this was second guessed at every stage by his parents.
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u/Jimbo19091 5h ago
I have never seen this working in healthcare with dying cancer patients. Often times it is the families that want to see their 89 year old mom with cancer try and live on a breathing machine for several more months. Comfort measures and/or hospice care is pushed frequently.
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u/EusebioFOREVER 6h ago
in a hospital setting, most of the very ill are unable to communicate their wishes. As a result the decision must be made through a legal framework of health care proxy, guardianship, etc, where applicable. Many times the family can't let go, and wants every available effort made before being made CMO: comfort measures only, where most medical interventions cease. However, MD cannot legally do this without consent and this legal framework, so thein lies the delays.
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u/nanobot001 7h ago
Weird because in my experience, oncologists cannot wait to make patients palliative.
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u/DoctorPab 6h ago
The truth is YMMV. Many oncologists will lead patients on and offer them treatment “if they can get strong enough” even when it’s clear to every other doctor the patient is dying.
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u/nanobot001 6h ago
And many will say that as a way of avoiding upsetting patients, and avoiding actually saying something difficult like “you’re probably not getting any more treatment at all.”
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u/aggthemighty 6h ago
It's very YMMV. Some oncologists are comfort-focused, but some would give chemo to a corpse if they could.
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u/gnatdump6 8h ago
Unfortunately the culture can be to treat at all costs from the perspective of Doctors. Sometimes financial losses occur with patients stopping treatment (like in the US), which creates a terrible conflict of interest.
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u/OfSpock 8h ago
And the relatives sue afterwards when they miss the patient and forget about their suffering. My mother’s friends daughter filed a suit after her death. I don’t know how it went as we lost contact, but they were all ‘Mum could have been saved if the dr had done X.’
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u/gnatdump6 8h ago
Yeah, sad when people can not come to terms with death. Not everybody can be fixed or cured.
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u/juliuscaesarsbeagle 7h ago
As a disabled person born in the US, I agree, and I'd emphasize the problem is a lot bigger than cancer.
The one certainly is the us medical system will rob you before they eventually decide your poor enough to deny treatment.
I smash yes every time right to die bills show up on the ballot. We should have a say
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u/AndroidAtWork 2h ago edited 2h ago
Yea, that makes tons of sense. Oncologists acting unethically for their financial benefit. Because apparently those patients with cancer are a hot commodity and there aren't many left these days.
Gonna throw something wild at you. New patients take more time. More time is more billable hours. More studies to be ordered with new patients. More procedures for new patients. You could argue an unethical oncologist might be more financially motivated to practice poor medicine so that the patient dies more quickly than they would with an appropriate treatment plan, and then they have more time on their schedule to see new patients. Or do like other unethical oncologists have been convicted of, and diagnose/treat cancers that don't exist at all.
Nevermind the fact that there is a severe shortage of oncologists in the US. So patients that do need to see an oncologist have to wait longer.
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u/gnatdump6 1h ago
New patient intake, planning and seeing how they respond to treatment should take lots of time. Totally reasonable. Trying out different treatments to see what works takes months/years. When treatment is futile and just plain cruel is not okay. Transitions to hospice need to occur sooner.
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u/Throwawayyawaworth9 5h ago
Hey this is the focus of my research!
Disregarding patient’s wishes for palliative or hospice care, adequate pain management, or emotional support is much more common among Black and Latin American populations, people with language barriers, people of low socioeconomic status, and those who live in rural areas.
Longstanding abuse of POC by the medical system has also caused these populations to be less trusting towards healthcare providers, further delaying access to palliative and end-of-life care.
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u/Conscious-Health-438 8h ago
Human ATM's. The American healthcare system at work baby!!!
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u/thatoneguyvv 7h ago
Human euthanasia is not legal but extending their suffering at all cost is. Even cats and dogs are treated better in the end of their lives than humans.
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u/Tleilaxu 7h ago
Depends on your jurisdiction; here in Canada medical assistance in dying (MAID) is very much legal and is utilized. In some European countries similar programs exist as well - sorry to hear it doesn't exist where you live.
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u/KuriousKhemicals 7h ago
Several states, too. Until I was a teenager, my home state of Oregon was the only one and I was shocked to find that out. I think around 10 other states have implemented it in the last 20 years though.
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u/lilchileah77 6h ago
Yes, some people feel compelled to control other’s deaths for their own salvation. Catholic’s force suffering on people and have gotten involved in providing medical care so they can enact their beliefs under the protection of religious freedom. It’s not great if your only option is a catholic hospital or hospice.
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u/grrrreatscott 5h ago
My grandpa is currently in the hospital and we’ve had the opposite experience. He had decided he wanted to fight it, receive radiation treatment, etc. They had him immobile in bed so long that the arthritis in his legs was pretty bad and he was in incredible pain when they tried to move him to do radiation, and he couldn’t do it a couple days. Instead of doing ANYTHING to address that issue, the hospital doctor, who wasn’t even a part of his care team, started heavily pressuring him to just switch to comfort care.
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u/GuitarGeezer 7h ago
Is anybody going to mention the perverse financial incentives to keep the insured or wealthy paying the hospital as long as possible without regard to their wishes or their families wishes?
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u/jancl0 4h ago
Everyone should familiarise themselves with a DNR (do not resuscitate) order, as well as it's ramifications. It's morbid, and most people don't imagine themselves ever wanting one, but you don't know how you're going to feel when you're looking at the end of the road, and that isn't research you want to waste your last moments catching up on
It's more than just preventing the doctor from resuscitating you. If they're aware of the order, it makes many life extending practices pointless, because risk of death is significantly higher without recovery measures to fall back on. The vast majority of those practices are incredibly painful and stressful for the patient, severely reduce the quality of remaining life, and are demeaning and undignified. Many of those practices also need to be decided on in situations where the patient isn't well enough to communicate a decision
DNRs aren't just about preventing you from coming back. They are the agency in which you get to decide how you live your final days
Source: I come from a family of doctors, and my grandfather used to run a hospital. He drilled this into us, and when that same hospital diagnosed him with pneumonia decades later, the first thing he did was sign an DNR (his countries equivalent)
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u/Purple-Possible-7429 4h ago
Many patients request futile treatments that won’t extend life and only increase suffering. Physicians tend to ignore those requests and treat the patients symptoms.
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u/FluffyCelery4769 4h ago
Couse doctors job is to save or prolong your life, they can treat pain, sure, but they cannot prioritize that above their job or they risk a lawsuit.
This is a systemic law problem not the doctors fault.
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u/ZiggyStarstuff 4h ago
Yep, happened to my mother in law she was diagnose with terminal colon cancer, her oncologist pushed and pushed for her to go on chemotherapy we begged him to just let her go on hospice, like she wanted she didn’t want chemo.
He ignored her requests, and even after we went with her to help her advocate. She did one round of chemo, and her liver failed she was miserable, had ascites, and was jaundice. Her body couldn’t handle the chemo and wasn’t able to clear it properly. She passed a month later.
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u/notyourstranger 3h ago
That is what capitalism does to HC. Oncologists make money from providing cancer treatment. Nobody should be surprised that Oncologists provide cancer treatment under those conditions.
In a nationalized system system, the oncologist would make the same salary whether they provide palliative care or treatment. There's less incentive to keep people alive and more incentive to reduce suffering and cost (keep taxes low).
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u/chapterpt 7h ago
A big part of it is people and families refusing palliative care because they think it means giving up.
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u/cardboard_dinosaurs 6h ago
This is more ICU setting than hospice but a lot of the time the family members who are left to make the medical decision are unable to allow their loved ones to pass in peace and will instead opt in for treatments and invasive procedures, often against the patients wishes. The doctor and nurses act as the patient advocate, but must abide by medical decisions made by whoever's legally responsible. The patience medical directive can be overridden by next of kin. In certain cases, doctors and the hospital can get involved in terminating treatment but that has to go through the hospital's legal system which is a lengthy process, all while the patient is being kept alive against their wishes.
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u/BitcoinMD 6h ago
I don’t doubt this but the opposite situation also occurs frequently, the patient or family will not accept the inevitability of death. This is a cultural issue in the US and death denial can exist in the doctor, the patient, or both.
It’s also an unfortunate reality that the family have the ability to sue after their loved one dies, even if their exact wishes were followed.
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u/Mysteriousdeer 5h ago
Id advocate for a Palliative care doctor.
Itd be interesting to see how care changes in the study if one was present.
For other doctors, I think the measure of success would be living patients but they aren't going to win that game.
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u/Party-Tonight8912 5h ago
from the article:
> Among patients with cancer preferring comfort-focused care, there was no statistically significant difference in 24-month mortality between those who reported receiving (discordant) life-extending versus (concordant) comfort-focused care (24% v 15%, p = .31).
The study is based on a self-report survey. The mortality results show that life is not infact being extended. I wonder if there is a communication disconnect between the physicians and patients, or more likely an issue with how the survey is worded.
Specifically, as others have pointed out, palliative radiation/chemo is a widely used tool in terminal cancer patients. Even resection can be palliative. All are often used specifically to reduce symptoms and improve end of life comfort, not curative or even necassarily life-extending. I'd be interested to know if the study differentiated between indication for treatmeent given. Or if it just split treatment into recieved only pain medication vs recieved pain medication + other treatment.
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u/deepseagoose 5h ago
There is a really good book called Dying Well. It’s written by a hospice doctor and his accounts with each patient and their final days.
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u/TheElectricCO 5h ago
Years ago, we brought my grandmother to a hospital on a Tuesday. It was obvious she was not going to live much longer. She had heart problems most of her life and in her last few years other organs started to fail as well, including her brain. Not to sound grim, but she was barely a functioning human at this point and we were actually relived it would soon be over. All of the nurses, who deal with this sort of thing on a daily basis, were talking to us about hospice and what to expect in the last moments. They just knew. The doctor... not so much. He was talking to us about discharging her the next day. My mother said to him at one point "I'm sorry, you think she's going to make a recovery?" and his response was something like "Yes, there's no reason to think she won't be up and moving and even driving by next week". Once he said that, everyone in the room went silent and my mother was staring daggers at him, like he was delusional. My grandmother ended up dying, in hospice at a different hospital the following Sunday. I don't know why that doctor thought the way he did. Was he trying to give us hope? Was he extremely over confident in his own healing abilities? In that moment I think what we would have appreciated most was someone who was honest and trying to see things from our level.
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u/TSwizzlesNipples 5h ago
When my grandpa was diagnosed with prostate cancer, his doctor basically said that to remove it would damage his quality of life so much that just making him as comfortable as possible was best. He died of a heart attack.
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u/PanickedPoodle 4h ago
I remember watching my husband's oncologist argue with the clinical trial doctor. The incentive for the CT doc was to keep him in the trial as long as possible, even though he couldn't walk. My husband wanted to fight and he was being sold that the CT was his last hope, but hope was already gone.
As long as clinical trials require patients, there is going to be a conflict of interest.
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u/haw35ome 4h ago edited 4h ago
I imagine it’s the same for dialysis patients. I am a dialysis patient myself; have been an End Stage Renal Disease patient for over a decade since childhood. I’ve joined a few forums & FB groups, and I’ve noticed an uptick in posts concerning this.
They all follow a common theme: OP posts, asking about palliative/hospice care because dialysis has become too much for them, whether emotionally or physically. Most posts try to persuade OP to continue treatment, and a few support their decision & try their best to offer advice on the matter.
My opinion on the matter is, while I support assisted suicide that’s medically supported, this country also needs better access to mental therapy & the like. Mental health is just as important as physical health if not more. I’m not thinking that having better access will lead to more survivors, but rather help people find answers/resources to palliative/hospice care or assisted suicide easier and hopefully equip people like us & our families with better coping tools, up until death
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u/Rounder057 4h ago
I got into a contentious discussion with my doctor
I have had pancreatic cancer and my position was “I value quality of life over life” and they only cared out if the cancer came back
When I told her I do not care if it comes back, I’m not doing that again, she did t understand
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u/sogladatwork 4h ago
My wife, (a doctor) complains about her colleagues doing this all the time. Though, it’s less surprising here in Asia because patients’ families wishes far outweigh patient wishes. If the patient is dead, they can’t sue, but the families can.
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u/AlphaTangoFoxtrt 4h ago
I wonder if it has to do with malpractice lawsuits from the family after the patient passes.
You didn't do everything you could! You didnt try XYZ!! We're suing you for not offering all available treatments!!!
Remember even if you settle for a "go away" payout, or even if you win the case, its still a suit and raises your malpractice insurance.
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u/Ilikepie81 4h ago
I am so grateful to the wonderful hospital and hospice staff who took care of my dad when he had cancer. I was ready to fight anyone who was going to get in the way of his comfort during his last weeks but I didn't have to. The doctors always considered quality of life and made it clear when further treatment would only prolong the pain. The hospice staff were always quick to respond to any mention of discomfort and provided the necessary drugs for everything.
Dad I miss you so much. You left way too early and I never got the chance to give you the retirement you deserved.
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u/Cultural-Capital-942 4h ago
This is a difficult decision to make. Easing pain is expected, but too much opiates mean patients won't be able to do anything. That includes standing up from their bed.
And family is also in game here. They are the ones who sue. Even in cases like 85 year old patient, stage 4 cancer and patient's son who didn't have time to say goodbye before.
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u/sum_dude44 3h ago
by doctors you mean families, then yes. A POA trumps an advanced directive (which usually aren't on patients) 10/10 times
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u/Philophobic_ 3h ago
A doctor that thinks and acts like they know more than everyone else, you say? Never heard of it
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