[HN Gopher] Are hospitals overtreating patients nearing the end?
___________________________________________________________________
Are hospitals overtreating patients nearing the end?
Author : pseudolus
Score : 110 points
Date : 2022-10-08 13:20 UTC (9 hours ago)
(HTM) web link (thewalrus.ca)
(TXT) w3m dump (thewalrus.ca)
| _qua wrote:
| I haven't had a chance to read the article yet but as a physician
| --yes we often overtreat at the end of life. I have had horrible
| experiences basically torturing patients with repeated invasive
| procedures and disease-focused treatments who have designated
| their decision making to a family member who is unable to accept
| a recommendation for hospice care from the treating physicians.
| In some cases this is motivated by religious beliefs that
| "everything must be done" to save a life no matter how much pain
| or suffering is causes. It's morally distressing.
| JoshTko wrote:
| Blaming just the patients and families is disingenuous. The
| incentives on the hospital, and doctor to overtreat are large
| and are an equally contributing factor.
| Macha wrote:
| Even in socialised medicine in western europe, this
| phenomenon exists, where the financial side of those
| incentives is much reduced as funding is much less directly
| tied to treatments.
| kennend3 wrote:
| You are very much mistaken, it is almost always the family
| doing this.
|
| As an example:
|
| https://www.canlii.org/en/on/onsc/doc/2017/2017onsc6511/2017.
| ..
|
| [2] Following Shalom's brain death his family had discussions
| with the staff at Humber River Hospital. They explained that
| in accordance with Shalom's and their religious beliefs,
| Shalom was not considered to be dead under Jewish law until
| he stopped breathing and his heart stopped beating. Neither
| had occurred because he was on ventilator life support.
|
| The hospital board ruled he met the guidelines to be
| considered "dead" - the family went to court to overturn
| this.
| ouid wrote:
| having been on the family side of this, i can personally
| guarantee that the people actually performing the procedures
| are against it. You should draw a distinction between a
| hospital and its doctors.
| lotsofpulp wrote:
| The doctors I know (roughly ~10 to ~15) are very much against
| "overtreatment". The biggest problem they have is dealing
| with emotional family members.
|
| There was also huge public fervor when the suggestion of
| funding mere discussion of end of life options was proposed
| with the Affordable Care Act:
|
| https://pubmed.ncbi.nlm.nih.gov/26195604/
| jstanley wrote:
| > The doctors I know (roughly ~10 to ~15) are very much
| against "overtreatment".
|
| Well of course that's what they think. Everybody is against
| "overtreatment". If they aren't against a treatment, they
| don't consider it "overtreatment", they just consider it
| "treatment".
|
| Different people have different boundaries for what they
| consider "overtreatment".
| s1artibartfast wrote:
| Yes, but the point is that most doctors would treat less
| than patients and their families if it were their choice.
| saiya-jin wrote:
| No, wife is a doctor and she faced this many times. Doctors
| in such places are never working there for the money, if you
| consider them as such you are just projecting your morals on
| other people.
|
| Its almost always the family - they just can't let go or have
| some christian type of excuse. Thus their moral weakness
| causes tremendous amount of suffering of their closest ones.
| And doctors have to obey family wishes, even if they
| personally wouldn't chose to, which is true for most doctors
| in such situations.
|
| I've been been recently an unfortunate witness to one of the
| cases when its not closest family - grandmother of my wife
| was nearing her end, suffering tremendously. Her daughter, my
| mother in law who is a nurse and teaches nursing too and
| knows all staff of their hospital very well was looking for
| some strong painkillers ie morphine to help her with final
| sufferings, which went on about for a week. As her mom didn't
| want to die in hospital, nobody was willing to sign receipt,
| not even close personal friends (mind you we don't have
| opioids crisis in the country, so its not controversial to
| give them to 92 year old dying). Some folks from closer
| family or friends even said its fine to suffer before the
| end, to shorten/skip purgatory, or some similar religious
| bullshit. One of those times when I hated christianity and
| its believers more than ever, you know those. As they say,
| you will know true friends when you need them the most.
|
| Switzerland is, as usually quite ahead on this - assisted
| suicide. Folks from all over the world come here to die
| peacefully, in full control. Ie Alain Delon is going through
| the process of getting this done right now. It doesn't cover
| all possible situations, but it gives certain control and
| dignity in times where most people have none left. Me
| personally, if facing such a situation, would do grand
| farewell gathering with all, sign my will and go somewhere in
| the nature to die quietly, ie jump from some cliff or
| overdose on heroin (first and last dose, but they say its
| quite an experience).
| A4ET8a8uTh0 wrote:
| <<As her mom didn't want to die in hospital, nobody was
| willing to sign receipt, not even close personal friends
| (mind you we don't have opioids crisis in the country, so
| its not controversial to give them to 92 year old dying).
| Some folks from closer family or friends even said its fine
| to suffer before the end, to shorten/skip purgatory, or
| some similar religious bullshit. One of those times when I
| hated christianity and its believers more than ever,
|
| I am not a religious person by anyone's description, but
| the choice here appears to be that of lesser evil. Final
| wish of a dying person ( along with their ability to govern
| their life ) here being that she did not want to die in a
| hospital. Wouldn't 'helping' her die break that wish? And
| more importantly, what if the dying person is ok with
| suffering?
|
| <<Thus their moral weakness
|
| It feels like the sentence is emotionally loaded. Is it a
| moral weakness to follow one's moral compass? I hear what
| you are saying, but you may want to consider that they do
| not want to make that decision, because their moral compass
| marks it as killing someone ( including some earthly
| jurisdictions ).
| ako wrote:
| Hospitals and doctors are already fully booked, they don't
| need the additional work from overmedicating and overtreating
| patients in the last weeks of their lives.
| sandworm101 wrote:
| Being overbooked is only the start of profitability. Just
| like airlines, once you have the customer inside your
| facility, you upsell. A patient recuperating/dieing in a
| bed nets only a daily rate. You need to then charge for as
| many additional treatments as possible.
| physPop wrote:
| Only in broken for-profit systems. This is a non issue in
| Canada and UK.
| _qua wrote:
| This is not how hospitals work. There are always outliers
| that get news stories but most physicians do not wish to
| torture the dying.
| oski wrote:
| Yeah, it's very distressing. It seems that there is often a
| correlation between religious thinking and hoping for a miracle
| that defies reason.
| candiddevmike wrote:
| You'd think they'd be pro-death and look forward to meeting
| them again in whatever afterlife they believe in. Or does
| faith falter in the face of the fragility of life?
| refurb wrote:
| No, I wouldn't assume the religious are "pro-death".
| denton-scratch wrote:
| There's a correlation between being religious and being "pro-
| life". Even the dimmest pro-lifer can see that it's
| hypocritical to insist on saving the life of a foetus that
| has never seen daylight, at the risk of the mother, while
| allowing an old, sick person to die naturally. So they are
| forced into an "all lives matter" posture.
| sandworm101 wrote:
| I have always considered some of that as practice for the
| eventual patient who may actually be helped. All those ecmo
| treatments on doomed elderly covid patients is good practice
| for when a 12yo kid with hope of survival needs the proceedure.
| Over the decades, hail mary treatments at end of life
| (radiation/chemo etc) eventually trickled down to become
| practical treatments for everyone. Appendectomies were likely
| debated as painful end-of-life treatments by those who first
| attempted them.
| alistairSH wrote:
| I'll counter with my own anecdote... My BIL passed earlier this
| year after a life of alcohol and drug abuse led to organ
| failure. He made peace with his fate and was ready to go. But,
| the hospital placed him in a coma and on a ventilator. Then
| made it extremely difficult to have him moved to hospice and
| removed from the vent. It took days of phone calls, lawyers,
| and social workers to allow him to die. This caused much
| unnecessary stress for my wife, who was the only family member
| present. This was at a facility run by Floridas largest
| hospital group. I wonder if it was profit or their own
| religious affiliation that caused this? Either way, it wasn't
| as simple to let a family member pass on as it should have
| been.
| sandworm101 wrote:
| Florida's largest hospital group has a religious affiliation?
| Ugh. We can be crititcal of goverment-run healthcare, but at
| least that headache is avoided. I live across the street from
| the one hospital in my small city. I think there would be
| protest marches if it ever proclaimed a paticular religion.
| Parmenidea wrote:
| Not just any religion, it's a Seventh Day Adventist
| Hospital (an offshoot of the Mennonites, who believed the
| end of the world was predicted in the Bible). This has all
| sorts of weird implications; from my memory, they can't
| serve caffeine on the premises. There's a giant painting of
| Jesus guiding a surgeon's hands in the front of the Orlando
| branch when you walk inside.
| sandworm101 wrote:
| I grew up overseas. All the hospitals were technically
| "islamic" but the great thing about that was zero
| religeous paintings. There were no crosses hanging over
| beds, but neither was any other image. Christians felt as
| welcomed as anyone else. The architecture and decoration
| was agnostic. Even the attached mosque was basically just
| a square room pointing in a strange direction, and was
| open to all peoples.
| elgenie wrote:
| That's just Islamic aniconism:
| https://en.wikipedia.org/wiki/Aniconism_in_Islam
|
| Islamic religious art na look agnostic ... if you don't
| know what you're looking at.
|
| Of course, without context Christian religious art is a
| lot of plus signs, moms with babies, winged babies, weird
| bonnets, and torture porn.
| vidanay wrote:
| Isn't that a direct result of the Islamic belief that man
| made art is offensive to God? The same reason mosques are
| decorated with geometric patterns and not "art".
| inglor_cz wrote:
| I think the prohibition is against depicting _living
| things_.
| oaktrout wrote:
| Most times when this happens its because the patient doesn't
| have these goals clearly documented, in my experiences
| hospitals are willing to follow the wishes of the patient. If
| the patients wishes aren't clearly documented that's when it
| gets tricky.
| kennend3 wrote:
| I feel bad for you having to deal with this stuff.
|
| It is strange how they often cite religious beliefs, but if
| they firmly believe in "god" why are they always willing to go
| to such great lengths to prevent dying?
|
| This is VERY unfortunate in Canada because these people cost
| the country a small fortune for no real reason. There was a
| story a while ago about an individual, 70+ and braindead,
| family fought and fought to keep him alive. I cant help but
| wonder if they had to pay, would they have continued to fight?
| FpUser wrote:
| Health care wise Canada already heading down the drain.
| Trying to save few people should be the least of your worries
| in this department. Our fucking "servants" are doing stellar
| job.
| formerkrogemp wrote:
| Don't denigrate healthcare workers. They're most often
| doing the best they can.
| FpUser wrote:
| I am "denigrating" our masters, not workers. And if you
| think we do not have huge problem in healthcare you've
| got your head firmly planted into the sand
| FredPret wrote:
| What exactly is wrong? There's no perfect way to run a
| huge system, but Canada comes close.
| FpUser wrote:
| We must be living in different Canadas. It is getting
| worse every year. And the people responsible just keep
| raising their own salaries. "Heckuva job (TM)" they do.
| FredPret wrote:
| What are the specifics? I've had great experiences,
| getting tests, seeing specialists, all for free
| VancouverMan wrote:
| How do you see those as being "free" to you? Do you not
| pay taxes?
| FredPret wrote:
| Yes, and far too much. I don't get the doom and gloom
| about how the system is supposed to be collapsing though.
| Canadian health insurance is much better than the private
| insurance I had before I moved here.
| [deleted]
| rs_rs_rs_rs_rs wrote:
| >religious beliefs that "everything must be done" to save a
| life no matter how much pain or suffering is causes. It's
| morally distressing.
|
| A life full of pain and suffering is still a life. The
| alternative you're offering is not something without paid and
| suffering, it's worse. Notexisting is worse than pain and
| suffering.
| _qua wrote:
| A case I recall particularly vividly was a man in his late
| 90s who had end stage dementia to the point that he couldn't
| interact with his environment or even speak. His limbs were
| contracted and he was permanently in a kind of fetal
| position. He was fed through a tube but was still severely
| malnourished. He had a line of bed sores starting from his
| coccyx extending up to his middle thoracic spine and most of
| the bones and ligaments could be clearly seen. The only real
| signs of life were moaning when he was turned in bed. I saw
| him in the icu where he was being treated for these incurable
| bed sores and bone infections. To me it was pure torture and
| his poor nurse was new to the job and broke down sobbing one
| day after she had to turn and clean his wounds. It was
| terrible for all of us.
|
| I would never want anything other than comfort care for me or
| my family in that situation but the families religion
| dictated that we continue.
| secondcoming wrote:
| You didn't exist until you were conceived. That wasn't so
| bad, was it?
| jamesredman wrote:
| Except that death is fact of life, pain and suffering are
| not.
| ako wrote:
| For some, the pain and suffering is so bad that notexisting
| is actually better.
| bwhaley wrote:
| > Notexisting is worse than pain and suffering.
|
| That's a stretch.
|
| Far more important to come to terms with mortality than
| extend life indefinitely.
|
| Is it even still living to have a heartbeat but with motor
| control, limited or no ability to speak, and no memory? Is
| "living" in this way best for the next of kin?
|
| I found a recent episode of the Making Sense podcast in this
| topic to be thought provoking. You might give it a listen.
|
| https://www.samharris.org/podcasts/making-sense-
| episodes/297...
| Pwhy1 wrote:
| I completely disagree. I would rather not exist than be in
| truly agonising pain for the rest of my existence.
|
| Heck, I've had something as simple as bad food poisoning
| where, if it was a terminal symptom, I would have ended it.
| mattmaroon wrote:
| I know a lot of doctors and all of them have told me much the
| same.
| daniel-cussen wrote:
| throwaway6734 wrote:
| who pays for these treatments?
| dominotw wrote:
| As someone who was on the other side. I will say that these
| decisions are made by patients and family on a daily level, one
| at a time. It is hard to step back and look at a big picture
| and say ok today is the day when we pull the plug on the
| treatments.
|
| I do agree that a final 'big picture' decision needs to be made
| but its hard to get that mental clarity when you are in the eye
| of the storm.
|
| Also, I've personally decided to go by euthanasia after I lose
| my independence but I am also not clear at what point I should
| make that decision. I am worried that I will delay that
| decision and end up in a situation where I lose my faculties to
| make that decision.
| citboin wrote:
| " I am worried that I will delay that decision and end up in
| a situation where I lose my faculties to make that decision."
|
| Same. I have cognitive issues from m.s. and intend to move
| somewhere where my desire is respected. My quality of life
| already sucks, so I may make the decsision sooner than would
| normally be expected.
| denton-scratch wrote:
| > I am worried that I will delay that decision and end up in
| a situation where I lose my faculties to make that decision.
|
| I'm concerned about that too. Broadly, the circumstances in
| which I'd want to get it over with painlessly are
| circumstances where it's hard to see what I could do about
| it, like if I'm immobile in a hospital bed. I want a stash of
| Nembutal in my medicine cabinet, that's the drug recommended
| by Exit International; but I can't get it. You sometimes see
| sellers offering it on dark markets at $600 for 10g, but
| typically they have zero trades and zero reputation.
| Eisenstein wrote:
| Go to a big city and get a bindle of heroin. Or fentanyl on
| the dark markets.
| denton-scratch wrote:
| AFAIK, most "opiate deaths" are the result of vomiting
| while asleep.
| Eisenstein wrote:
| You are incorrect. Opiates slow your respiration and you
| stop breathing. You are probably thinking of alcohol
| deaths.
| gedy wrote:
| I know this an outlier, and not related to emotional hospice
| decisions, etc but my mother had a heart attack in her 60s and
| was flatlining after they were reviving from cooling? protocol
| at the hospital. The doctors used defribrillators multiple
| times while I and siblings were in the room. The head doctor
| turned to us with an annoyed tone saying "look this isn't
| ethical to continue" when we asked if they could do anything.
| He then agreed to give her an adrenaline? shot, then they
| packed up and everyone walked out to our confusion.
|
| She stabilized and survived, and is still here 12 years later.
| I appreciate what the doctors did for her, but I am very
| cynical about blindly trusting what overworked/numb medical
| workers tell us now though.
| [deleted]
| veltas wrote:
| > In some cases this is motivated by religious beliefs that
| "everything must be done" to save a life no matter how much
| pain or suffering is causes.
|
| Can you explain what you mean by this?
| ceejayoz wrote:
| https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6525567/
|
| > Patients who rely heavily on their religious beliefs to
| cope with cancer have been shown to receive more aggressive
| interventions (e.g., cardiopulmonary resuscitation and
| ventilation) in the last week of life compared to those who
| rely less heavily on [Religion and spirituality] beliefs.
|
| > The most commonly highly endorsed items (i.e., at least
| 'somewhat') were "my faith helps me to endure the suffering
| that comes with difficult medical treatments" (71%); "I will
| accept every possible medical treatment because my faith
| tells me to do everything I can to stay alive longer" (67%);
| and "I believe God could perform a miracle in curing me of
| cancer" (69%). Most patients (87%) reported some ('somewhat',
| 'quite a bit' or 'a great deal') endorsement of at least one
| of the RBEC items and a majority (62%) endorsed three or more
| RBEC items.
|
| > Item-total correlations revealed high item-total
| correlations (>0.7) for five items and moderate correlations
| for the items "do not resuscitate orders are immoral due to
| religious beliefs" (0.48) and "I would be giving up on my
| faith if I stopped pursuing cancer treatment" (0.63).
| paranoidrobot wrote:
| There's the "everything must be done" crowds, but they're not
| (just) religious folks. There's also the bean counters (more
| tests/treatments = more revenue), and the paranoid about
| litigation folks who worry more that it's easier to explain
| action than inaction.
|
| My grandmother went into a facility for palliative care in the
| last few weeks of her life. We saw all of these folks, and it
| was a struggle to reign them in.
|
| There's a whole lot of really terrible behaviour that's done
| just because it makes someone more money or someone's job
| easier, and if it results in actual pain/discomfort to the
| patient, who cares.
| sxg wrote:
| I wouldn't characterize it as "paranoid about litigation".
| Lawsuits against physicians are common, and you absolutely
| have to consider the small but real risk of having to defend
| your actions in court. I'm a physician and see this play out
| all the time, and there's a reason malpractice insurance is
| as expensive as it is.
| toast0 wrote:
| Just because you're paranoid doesn't mean they're not out
| to get you. Justified paranoia is still paranoia.
| s1artibartfast wrote:
| No it quite literally isn't
| oa335 wrote:
| How expensive is malpractice insurance, as a proportion of
| your salary?
| pixelmonkey wrote:
| Malpractice can be $30-$90k/year for an OB-GYN. Hospitals
| may cover part of this, but a private practice may not.
| This is a huge percentage of an OB-GYN salary, and
| creates negative career satisfaction across the
| specialty. (As if medical school debt and the residency
| hazing process were not enough.)
|
| In private practice, OB's also often have to pay for
| their own tail insurance, which also means if they quit
| the practice, they have to pay malpractice insurance
| (basically in perpetuity) to protect against late-
| arriving lawsuits. This also traps physicians in their
| job/specialty and makes early retirement challenging.
|
| It's a great system. /s
| sxg wrote:
| Depends on the specialty, but roughly $500-$1500 (higher
| for surgeons and proceduralists; ~5% of your salary).
| However, if you work as an employee for a hospital or a
| large group practice, you don't pay for malpractice
| insurance directly. The institution covers it, but
| obviously it will indirectly impact your salary.
| oneoff786 wrote:
| I would question whether extra treatments for an end of life
| patient is really a profitable venture for a hospital vs the
| opportunity cost of more lucrative elective stuff.
| londons_explore wrote:
| End of life treatments are, I assume, very profitable,
| because either they'll be covered by insurance, or they'll
| be paid by the deceased's estate. They'll probably get paid
| the full asking price rather than having to give a discount
| too.
| refurb wrote:
| I wouldn't argue they aren't profitable, but there is a
| good chance Medicare is covering it, which is
| substantially lower reimbursement than private insurance.
|
| If they have a limited volume of beds, I'm sure a focus
| on profit would drive a private patient getting care
| versus an elderly Medicare patient.
| oneoff786 wrote:
| If the estate can't pay then the debt is just written off
| though.
|
| That aside, ability to pay is not going to be the top
| consideration of the baseline profitability of a
| procedure.
|
| I don't know any specifics though.
| londons_explore wrote:
| But most people do die with an estate of some kind
| Something1234 wrote:
| I've been trying to figure out how to define a living will that
| is actually quantified, but I just can't come up with anything.
| Everything I can think of has exceptions in it, and I'm sure I
| won't cover all the holes.
| denton-scratch wrote:
| Mine is very simple; I don't want people struggling to keep me
| alive, if the chances are that I'm going to die soon anyway.
| But this kind of thing can only work if the medical staff are
| trustworthy, and use common sense. My GP knows my attitudes,
| but in an emergency it might be any old jobsworth that has to
| interpret my wishes.
| bittercynic wrote:
| I think making a reasonable effort to cover likely scenarios is
| a good way to communicate your intent, and if a situation comes
| that you didn't cover, a trustworthy reader has a good chance
| of taking the action you would have wanted. At some point you
| have to accept that you're going to have diminishing control
| over things.
| civilized wrote:
| Soon we can expect an article criticizing Canada as inhumane for
| putting limits on overtreatment at the end of life.
| VancouverMan wrote:
| In Canada, both situations are just symptoms of the same
| underlying problem: the various public health care systems in
| Canada are quite inefficient, including when it comes to the
| allocation of resources.
|
| This should be expected, though, since socialist systems tend
| to remove, or lack, the balancing factors that can encourage
| improved efficiency.
|
| There is little incentive for Canadian medical practitioners to
| do better. The artificially restrictive and anti-competitive
| nature of these health care ecosystems, from education, to
| funding, to providing service, helps ensure that the situation
| doesn't improve over time.
| civilized wrote:
| That's interesting. I've seen a table that said Canada's
| health system has the among the lowest percent admin overhead
| of any developed country, so I had the impression it was
| relatively efficient.
| inglor_cz wrote:
| Administration costs are just one of many possible
| inefficiencies. Choosing what to spend on is a very
| different can of worms.
|
| You can be very efficient in building bridges, but if you
| choose to build bridges to nowhere, the entire system is
| far from efficient.
| [deleted]
| theow7384iri wrote:
| Hospital has to make money somewhere! Procedures done on corpse
| are financing ER and other departments!
| Waterluvian wrote:
| Not really how it works in Canada.
| kennend3 wrote:
| Your post makes no sense.
|
| Given this is posted on a Canadian site, and discusses
| Ontario....
|
| Hospitals don't "make money" in Canada, they are all owned and
| funded by the government.
| photochemsyn wrote:
| I think it's a bit more complicated than that, because in
| most socialized medicine systems, the suppliers are not owned
| by the government, so there's a lot of private industry
| billing (pharmaceuticals, medical devices and implants. etc.)
|
| It's comparable to the USA's freeway system - yes the roads
| are publicly owned, but road repairs and material procurement
| are contracted out to private industry, and there's always
| the possibility of things like a government employee getting
| a kickback from a construction company for signing off on
| unnecessary work requests, etc.
| kennend3 wrote:
| > the suppliers are not owned by the government
|
| Correct..but pretty much any "medical supplier" requires a
| doctors note to provide services.
|
| "blood testing labs" for example might want to blood test
| everyone in the country for everything imaginable..Without
| a doctors note they are prohibited from taking blood.
|
| Doctors (effectively government employees) do control the
| gates.
|
| Kickback schemes are possible (and have been uncovered),
| but this is a pretty big tangent to "over-treating those
| near death" isnt it?
|
| Most "medial fraud" in canada tends to focus on "services
| charged but not rendered".
| inglor_cz wrote:
| Hospitals perhaps not, but someone always makes money in the
| system and those people may have conflicts of interest.
|
| I live in a country with a population-wide insurance system.
| Big Pharma dealers do their utmost to curry favors with all
| the doctors out there, showering them with gifts, inviting
| them to "conferences" in attractive locations etc.
|
| As my friend from high school, now an accomplished ORL
| expert, said: "Of course it works. They wouldn't be doing it
| otherwise."
| refurb wrote:
| Hospitals in Canada aren't always "owned" by the government.
| For example in Ontario they are mostly private non-profits.
|
| And even if they are publicly owned, there is someone looking
| at the financials to make sure they have enough money to keep
| operating.
| Animatronio wrote:
| Lots of people here are willing to let others die so as to not
| "overburden" the medical system - financially or otherwise. I for
| one would like be overtreated to the max, because then what's the
| point of having EOL care if not to prevent death. Also, I'm a
| religious person, and I don't think it's in any way conflicting
| with my beliefs.
| Someone wrote:
| > then what's the point of having EOL care if not to prevent
| death.
|
| Death can't be prevented, only delayed.
|
| I would say EOL care is for making your last days as pleasant
| as possible for you and (a bit less so) those who care about
| you.
|
| As an example, "overtreated to the max" may mean replacing "a
| few days to talk with family, sitting in the sun" by "a few
| weeks being sedated undergoing various invasive procedures". I
| think that, if the choice were that clear, few people would
| choose the latter.
| Animatronio wrote:
| Obviously I meant delayed as much as possible. Honestly, I'd
| take any invasive procedure over death, no questions asked.
| wl wrote:
| You might want to talk with some of the healthcare workers that
| are performing these treatments. Most of them will say things
| along the lines of, "I don't want the last moments of my life
| to be someone breaking my ribs" or "there are fates worse than
| death."
| Animatronio wrote:
| I don't think healtcare workers are more qualified than
| anyone to say there are fates worse than death, besides I
| don't think it's true.
| cpsns wrote:
| It's definitely true, though I'm glad you've not had to
| whiteness such fates. I've seen it first hand with family
| members and it's traumatic for all involved.
| sethammons wrote:
| Was it bad for you before being born?
| Animatronio wrote:
| How would I know?! Might have been a terrible time for
| me, but I have no memory of it. So I'd rather err on the
| side of caution.
| denton-scratch wrote:
| > what's the point of having EOL care if not to prevent death.
|
| That remark sounds odd to me. "EOL care" is provided to people
| who are at end-of-life, by definition. And neither EOL care nor
| anything else can "prevent" death.
| throwaway6734 wrote:
| Just don't expect others to pay for it
| Animatronio wrote:
| Why not, after all I've been paying for subsidized healthcare
| for 20+ years without getting anything in return.
| throwaway6734 wrote:
| The level of healthcare you're talking about will end up
| costing significantly more than any amount that you paid in
| refurb wrote:
| Of course, it's always easy to be cold and calculating when
| it's not your life or your love ones at stake.
|
| And sure, I think most people would argue it's not worth
| spending another $500,000 treating a terminally ill patient
| with a 0% chance of survival.
|
| But often the chance isn't 0%, it might be 15%. So if it's your
| loved one who has stage 4 cancer and the doctor says "it's
| going to cost a lot of money and only a 15% chance we'll cure
| the cancer", not many people will say "meh... those odds aren't
| good enough, so lets just put grandpa in a hospice and let him
| go"
| NoPie wrote:
| 15% is clearly too optimistic. It is closer to 0.15% and it
| is usually not only about chances but that the person is
| experiencing extreme suffering despite pain killers that any
| therapy only prolongs this suffering.
| refurb wrote:
| What do you mean?
|
| Here is an example: https://www.tecentriq-
| hcp.com/urothelial-carcinoma/clinical-...
|
| For people with cisplatin (chemo) resistant metastatic
| (spread through the body) bladder cancer, if you treat with
| immunotherapy only 6% achieve complete response (cure). The
| other 94% has a partial response (which means they
| progressed) or no response at all. So they would likely die
| of their cancer relatively soon.
|
| Lots of cancer drugs are like that.
|
| Immunotherapy is expensive. Is it worth spending $250,000+
| on cancer drugs for a 6% chance of a cure?
| Animatronio wrote:
| Then why bother with immunotherapy at all if it's so
| expensive. After all it's been available for 130 years if
| google serves me right, and it still hasn't come down in
| price besides being not very effective.
| Animatronio wrote:
| Maybe it's closer to 0.15%. So what? We do things with
| little chance of succes all the time. As I said, I'll take
| my 0.15% chance of living longer and be very grateful for
| it. Others might not. I still find it strange that money
| has a part to play in this at all. How cruel would it be to
| be denied life-saving treatment just because it's not 100%
| guaranteed to work.
| NoPie wrote:
| Because 0.15% is not a life-saving treatment but hoping
| for a miracle. And when people are immensely suffering
| they actually prefer to die than prolonging the
| sufferings.
|
| How could not money pay part in this? If the continued
| care costs, let's say $10,000/month (not unusual for the
| US) and you have 1:1000 chance to live that month, it
| means this month has cost $10 million dollars. Who is
| going to pay for that? In fact, taking all this money for
| yourself, the healthcare for other people will need to be
| reduced which can lead to shortened life expectation for
| those people.
| _qua wrote:
| A basic issue is simply choosing to have a no cpr order if
| you have a terminal cancer. It doesn't mean you won't get
| treatment but if your heart stops in this particular
| situation (metastatic cancer) odds of survival to hospital
| discharge are routinely quoted as <1%. No cpr doesn't even
| mean no intubation or no critical care, it's more of a
| "seatbelt" to protect you and your loved ones from suffering
| if everything goes to hell.
| denton-scratch wrote:
| I've prepared a "living will" - basically a signed directive that
| I don't want anyone to strive officiously to save my life, a.k.a.
| "Do Not Resuscitate". I gave a copy to my GP, and I sent another
| to my health trust. There's a copy in my desk-drawer. My kids
| know my intentions.
|
| But I'm afraid that if a paramedic attends me in an emergency,
| she won't know about these documents, and will be in too much of
| a hurry to search. Also, if I get in trouble outside the area of
| my health trust, they won't have this document at all.
| _qua wrote:
| A living will is only as good as your designated power of
| attorney when push comes to shove. It's just as important to
| have these discussions with you power of attorney repeatedly
| and in depth before the time comes.
| bell-cot wrote:
| Might this be useful?
|
| https://store.medicalert.org/classic-medical-id-bracelet/A12...
| ejb999 wrote:
| Not sure where you live, but in my state (and states around me)
| EMT/Paramedics know to check the fridge door for a MOLST form
| that is usually brightly colored (easy to see) and contains
| your wishes - i.e. no CPR or no intubation etc; usually these
| are filled out in conjunction with your doctor, they keep a
| copy and you put a copy on your fridge where it is easy to find
| - more common for very elderly folks and those with terminal
| illnesses - but I supposed anyone could have one.
| denton-scratch wrote:
| > and those with terminal illnesses
|
| My terminal illness is called "life". I have COPD, which is
| supposedly incurable, and there's a fair chance that's what
| will kill me; but what _guarantees_ that I 'll die is the
| fact I'm alive.
| denton-scratch wrote:
| Yeah, that only works well if I carry my fridge around with
| me! /s
|
| I could carry the note, of course; but the chances are I'd
| forget to pin it back on the fridge. Perhaps I should stick a
| colourful note to my fridge, saying "Paramedics: instructions
| in desk drawer".
| TomMasz wrote:
| I had to make the decision to stop medical intervention and start
| palliative care for my 92-year-old father. He had developed an
| infection, exacerbated by poor circulation and a reluctance to
| seek medical care. He was hospitalized, given massive amounts of
| antibiotics, and rallied it a bit. They told us he might be able
| to go home if he could get around on his own. He was sent to a
| rehab center but soon declined without the hospital's level of
| care and was re-hospitalized. This happened a few times, the
| rally was less each time. Finally, it was impossible to ignore
| the reality of what was happening despite the doctors'
| willingness to keep going. He had explicit instructions regarding
| end-of-life care but my mom couldn't make the decision so I had
| to. The hospital set up a quiet private room for him and he
| slipped away quietly in the night before he could be moved to
| hospice.
|
| I totally understand families not wanting to give up but you have
| to ask "who are you doing it for, yourselves or them?"
| cityzen wrote:
| Great book called The Conspiracy Against the Human Race: A
| Contrivance of Horror touches on this... the fact that everyone
| is so obsessed with keeping people alive whether the patient
| wants it or not. Some people may just want to die... and that's
| ok.
| mrec wrote:
| For anyone who hasn't already seen it, Scott Alexander's _Who By
| Very Slow Decay_ [1] (2013) is a classic on the subject. Please
| take the trigger warning seriously.
|
| [1] https://slatestarcodex.com/2013/07/17/who-by-very-slow-
| decay...
| srvmshr wrote:
| I read this in its entirety last year and sat quietly for a
| long time knowing many of these observations will one day be
| true for me too. Its sad, depressing and really harsh truth.
| swayvil wrote:
| Being the fantasy-loving creatures that we are, theater always
| replaces reality, sooner or later.
|
| The costumes. The magic language. The shiny apparatus. The heroic
| striving. All necessary props in the drama. Ticket sales are
| good.
| andromaton wrote:
| Must read: Being Mortal Illness, Medicine and What Matters in the
| End (Atul Gawande).
|
| Summary: quality not quantity.
|
| It gave me hope while helping family members and hope for when
| it's my turn.
| fuzzfactor wrote:
| This is the time when all parties already do expect to expend
| more resources.
| Waterluvian wrote:
| After years of declining health my grandfather ended up with some
| sort of flesh eating infection. My aunt and grandmother wanted to
| keep fighting.
|
| I remember being in the room with extended family and the doctor
| double checking that everyone wanted to stay for the discussion.
|
| He then discussed, ...in detail, how they would treat it and what
| his life would be like after.
|
| The decision makers in my family quickly came to a consensus.
|
| What I remember most is that it didn't feel like manipulation.
| The way the doctor laid out the situation felt like he was
| informing everyone. Equipping us to understand the situation
| almost as well as the doctors might. I remember that making it
| far easier on my aunt and grandma afterwards.
| Consultant32452 wrote:
| We over-medicalize life too.
| inglor_cz wrote:
| Someone downvoted you for no reason. Yes, we over-medicalize
| life, too. Death is but the end stage of life, so it suffers
| from the same problem.
| gsatic wrote:
| Ofcourse they are. Having spent a whole lot of time in hospitals
| with elderly family members over the last couple years its pure
| madness. One doc told me its like watching farmers keep entire
| fields of mostly dead plants alive.
| Silverback_VII wrote:
| It is not very ethical to spend hundreds of thousands to
| minimally extend the lives of people who will use this new gained
| time to watch a little more television. Someone has to pay the
| bill.
| Animatronio wrote:
| How does it compare to spending hundreds of billions to
| continuously prepare for war? Ethically speaking, of course!
| inglor_cz wrote:
| Ethically speaking, Ukraine would now be toast (which means:
| occupied, enslaved, tortured and raped) if the Western powers
| didn't spend enough money on their war readiness.
|
| World peace requires unanimity. Absent that, there is nothing
| principially unethical to prepare for future wars. And that
| has to be done continuously, because technology evolves.
| Animatronio wrote:
| I wasn't referring to Ukraine at all. Let's not make this
| about current affairs please. Whenever there's a new
| billion dollar plane or ship or whatnot there's plenty of
| money for it. When someone requires half a mil for some
| procedure suddenly it's a big no-no.
| lbriner wrote:
| One of the problems is that we think that we deserve to have
| everything done to save us, even if futile and families think
| they get the next priority in deciding what the hospitals will
| spend.
|
| How does a Government/Medical Profession agree to what is
| considered acceptable or not acceptable without incurring the
| expense of legal action? It seems like the "easy" answer is to be
| seen to do everything you possibly could.
|
| The article did mention, however, how the communication of the
| medical staff can be instrumental in coneying the graveness of
| the situation, although it's a lot to take in if everything has
| happened in the last 30 minutes and you are suddenly staring
| death in the face.
| debacle wrote:
| My least favorite statistic is that roughly 50% of an
| individual's lifetime medical costs come in the last few weeks of
| life.
|
| This is seriously problematic. Families need to learn to let go
| and doctors need to be more honest about outcomes. My mother was
| facing multiple organ failure and she was still given a feeding
| tube against her stated wishes and my family's protests.
| denton-scratch wrote:
| > she was still given a feeding tube against her stated wishes
| and my family's protests.
|
| How did that happen? That sounds like assault. Did they not
| know her express wishes?
| mjevans wrote:
| The forms they make families fill out are often given too
| late; and don't offer an affordance of nuance.
|
| My dad had dementia before anyone realized, and even if he
| had been of sound mind, the forms tend to be all or none,
| rather than reflecting the range of outcomes that are
| remotely likely.
|
| The discussions that are suddenly forced onto family at the
| end of life are an extra level of pain on top of the
| inevitable loss.
| lotsofpulp wrote:
| There is a very complex calculation of liability going on in
| medical decisions, and they depend on various interpretations
| of the jurisdiction's laws.
| purplerabbit wrote:
| The overmedicalization of death is a giant ethical problem that
| we haven't developed the culture to healthily deal with.
|
| If you haven't read the book "Being Mortal", I would highly
| recommend it. It addresses how to approach death from a
| perspective that combines existential and medical issues. It's
| one of a very small set of books that should probably be required
| reading for all of humanity
| the-printer wrote:
| I suspect that people are more likely to want their loved ones to
| be treated in spite of glaring suggestions toward the end of
| their love one's life when they fear that death will approach
| within the hospital walls.
|
| It's likely that many people would prefer their loved one to die
| at home than elsewhere. Which I suppose is a natural feeling. But
| they then catch themselves in the dilemma of choosing between
| what they feel is an environment of care medically and an
| environment of care, well, "familial-ly"?
|
| It's easy to make faith or religion a target for phenomenons such
| as as this. But which faith (or whose, rather) are we talking
| here?
| bberenberg wrote:
| Being Mortal by Atul Gawande has an interesting look into this
| topic.
| [deleted]
| jgurewitz wrote:
| Informed, decision making away from the pulse of the emotion is
| essential here. High quality physicians with the time and space
| to guide a family are immensely impactful but sadly both the time
| and space are becoming increasingly limited. Having a trusted
| advocate by your side who is not as connected is becoming a
| significant trend.
| lotsofpulp wrote:
| Hence the need for everyone to have advanced health directives.
| Silverback_VII wrote:
| All your vitality and youth eaten up on the hamster wheel to get
| 10 miserable years surrounded by medical equipment at the end of
| your life consuming the rest of your fortune.
|
| And why exactly? to move the doomsday clock an inch closer to
| midnight?
| k__ wrote:
| I didn't buy into that. I wanna live while I still can.
| daniel-cussen wrote:
| sangnoir wrote:
| > And why exactly?
|
| <sacarsm>Are you questioning the best economic system there
| ever was? Your comment smells a little commie-adjacent, but
| I'll have you know {insert example of vaguely socialist regimes
| that failed}. Furthermore, {insert poverty-reduction statistics
| from China, but attributed to capitalism}. Therefore, our
| current capitalist society is the epitome of mankind, and
| cannot be improved. QED </sarcasm>
| andrewl wrote:
| I thought this story in "comic book" form of end of life in a
| hospital was very powerful:
|
| https://www.acpjournals.org/doi/10.7326/G14-0009
| mensetmanusman wrote:
| The entire system seems somewhat incentivized to harvest as much
| cash out of situation as possible...
| s1artibartfast wrote:
| For the most part, doctors and hospitals don't want to do it.
| This is a patient and family driven phenomenon for the most
| part
| t00ny wrote:
| Not in Canada.
| stevenwoo wrote:
| The last few paragraphs detail specialized long term ICU
| centers in the USA that treat such patients where the survival
| rate is low compared to non patients and the medical technology
| is utilized to fullest so as many patients as possible reach
| the one year point so the statistics look great, and then it is
| withdrawn after the 365 day mark (because that is the only
| measurement used for funding) so the care can be used on the
| next customer. There's one near me where any time I pass by
| there is usually an ambulance taking away a patient or
| delivering a patient (the lights and siren are never used).
| mywacaday wrote:
| This was a discussion that stuck with me:
| https://news.ycombinator.com/item?id=28463482
| voakbasda wrote:
| The cost of care at end of life is unsustainable in its current
| form. The graphs of average cost per patient as a function of age
| are all shaped like hockey sticks. As a civilization, we cannot
| afford to spend like this. It will catch up to us, and then
| everyone will suffer.
| SkipperCat wrote:
| I can't stress this enough. Get a living will and end of life
| directives. Your family will do everything to keep you alive
| because they'll feel awful if they don't. Their guilt about not
| doing enough will override common sense.
| wpietri wrote:
| Two points:
|
| One, this barely touches on the opposite side, when doctors give
| up too soon. When my mom had a brain tumor that had a high 5-year
| mortality rate but still had plenty of time left, a number of
| doctors we encountered either gave us premature "time to give up"
| speeches or were just lackadaisical about treating her symptoms.
| (None of those doctors were her neuro-oncologist, and my mom was
| a fighter who would not give up on the time left to her.) Had I
| and my brother not been there to push back on the medical system,
| we would have had months less with her. Should we minimize the
| suffering when there's no hope? Definitely. But not until that
| point unless the patient clearly chooses otherwise.
|
| Two, I think the much bigger problem on either side is not doctor
| attitudes, but cultural attitudes towards death. It's something a
| lot of Americans avoid talking about, avoid thinking about. My
| mom was a fighter, but because she had run an adult foster care
| home with an elderly wing, she was was also a realist. She had a
| DNR on file and we had all talked about what we wanted years
| before she got sick. We knew she wanted as much of a good life as
| possible, and then she wanted to be done. So when the neuro-
| oncologist said we couldn't do any more, that was it, and we
| transitioned to hospice. But from what I understand, that's not
| the common reaction. I hear stories from friends of dying
| patients dragged through all sorts of unwanted treatment because
| the adult children of the patient are unable to deal with their
| emotions enough to honor the patient's wishes, tend to the
| patient's needs.
|
| So I ask everybody to talk with your family about what you each
| want. One framework I've used is Five Wishes, which has forms you
| fill out and material to help a family discussion along:
|
| https://en.wikipedia.org/wiki/Five_Wishes
|
| https://www.fivewishes.org/for-myself/
|
| This is the most important thing you can do to minimize
| overtreatment: talk about it with family and get something
| written down. That way when the doctor turns to you and asks what
| the patient wants, you can answer with confidence.
| Waterluvian wrote:
| > Get something written down.
|
| Important advice.
|
| I think it's also true the other way. Write down what doctors
| say. Far too often what doctors said and what people heard or
| can recall do not line up. That's just human nature.
|
| A physician friend of mine prints out what she is going to say
| in serious moments and then hands it over after the
| conversation. She said this was because of how many times, "in
| cases like this, the x year survival is y percent" being later
| repeated as "doctor said Z only had x years to live."
| wpietri wrote:
| Yes, definitely. And it shouldn't be the patient doing the
| writing! Having somebody less involved to take notes can be
| super helpful.
|
| And yes, physicians should absolutely write things down too.
| Once I went in for surgery and after I woke up both the
| surgeon and the anesthesiologist talked with me and told me
| important things. Hours later, I only remembered scattered
| phrases, with my clearest memory being me saying I didn't
| think I was in shape to talk then. Happily, some of what they
| said was written down. But not all of it!
| crispyambulance wrote:
| Yes, this stuff needs to be discussed by every family, at
| length, and years before stuff starts to happen. I have not
| heard of 5 wishes before now, but my family had health-care
| directives as well as power-of-attorney written up by a law
| firm that specializes in elder law. This was super valuable.
| There are also serious financial implications for families who
| end up with someone in a nursing home.
|
| "End-of-life" gets really complicated and bureaucratic at one
| of the most stressful and challenging times for families. It's
| really important to plan ahead for this time, in advance, when
| everyone is thinking clearly and rationally.
| chucksmash wrote:
| I'd tend to put myself into the other camp, that doctors tend
| to be too slow to reach for palliative care options, but your
| comment is thought provoking. A lot of my thoughts on this were
| shaped by Atul Gawande's 2014 book on the topic of end of life
| care and the suffering that can arise from never "giving up."
| Your anecdote about feeling the doctors were too quick to
| suggest palliative care makes me wonder if it was the exception
| or if the pendulum is now swinging the other way. I'd say the
| viewpoint of the article is pretty in line with Gawande's as
| well.
|
| > Should we minimize the suffering when there's no hope?
| Definitely. But not until that point unless the patient clearly
| chooses otherwise.
|
| There are so many things to weigh here, I can't imagine having
| to help other people make this choice. How do you decide when
| there is no hope? When literally every possibility has been
| exhausted? How do you decide when the hope that remains is
| likely outweighed by the suffering that will be endured to
| achieve it? What is an appropriate amount of suffering for a 1
| in 4 chance of a few more good years, or a 1 in 10 chance, or a
| 1 in 25 chance? What is the break even point in terms of
| quality of life where it's better to have a gradual decline at
| home and then in hospice rather than spending the only months
| or years you have left under a battery of treatments to buy the
| lottery ticket that you might come out well-ish in the other
| side?
| wpietri wrote:
| > other camp, that doctors tend to be too slow to reach for
| palliative care options
|
| I don't see a need for camps here. Both can be true! Some
| people can get over-treated. Some people can get under-
| treated. These are both problems that we should fix.
|
| > I can't imagine having to help other people make this
| choice
|
| These are inevitably personal decisions. There are few wrong
| choices, and often few good ones. In my limited experience,
| the doctors who specialize in these sorts of thing are pretty
| good at helping with that choice. They explain the options,
| say what they can about the odds, and then let the patients
| and their families decide.
|
| Which is why it's crucial that families talk about these
| questions before it matters. We need to understand our loved
| ones' preferences and views, and they need to understand
| ours. Because once it comes to it, at best it will be a very
| fraught and difficult time. And at worst, the patient may not
| be in any state to answer the questions.
| oneoff786 wrote:
| Your first point implies it's a situation of giving up and
| dying vs. trying not to die.
|
| But it ignores the view that that act of trying not to die
| might make the remainder of your life much worse.
| Animatronio wrote:
| There's also the chance that your life could be saved and
| your health restored, TBF.
| oneoff786 wrote:
| Sure. But we ought not characterize doctors as "giving up"
| if they come to a conclusion that it would be better for
| the patient to pursue a path that shortens expected life
| span but increases quality life span.
| wpietri wrote:
| That is a conclusion that doctors should certainly
| express if it is a well-informed and well-considered one.
| Which is what our neuro-ongologist did at the right time.
|
| But we had one doctor give us the "time to let go" speech
| because he had confused a "grade 4" astrocytoma with a
| generic "stage 4" cancer. He wasn't my mom's oncologist.
| He wasn't an ongologist _at all_. He was an arrogant
| idiot.
|
| And then there were the doctors, also not oncologists and
| who had not spoken with my mom about her preferences, who
| did not see the point in properly treating secondary
| symptoms in somebody who was trying for the extra months
| her oncologist thought was possible. Those doctors can
| also go fuck themselves.
|
| It is those doctors that I am thinking of when I talk
| about under-treatment.
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