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To what extent should we protect patients from themselves? Two things happened this week that had me considering this again.
One, some discussion on medical reddit popped up about how to handle people (chiefly young women) requesting sterilization at a young age especially prior to having children. This has obvious implications for regret and forcing people to be locked in to insufficiently considered choices.
Two I was talking to a friend who was complaining about a side effect of laser eye surgery and she said she was not told about the possibility. In talking to her she was very clearly told about the possibility of this side effect but simply didn't get it.
This is not uncommon. Either surgeons half ass the consent process, or patients just completely fail to understand and fully grok what we tell them. Generally both.
A different example - I've had the conversation "X problem is gone because of your medication, if you stop your medication X problem will come back" "okay doc I'm here to complain about X problem, I stopped my medication" a million times. Including with smart and highly educated people. People often don't understand what is told to them and that can include things like life altering surgery.
What do we do with this? Do we let people make mistakes? Where do we draw the line?
This topic comes up very frequently in medicine but the discussion quality is generally very poor "protect them from themselves unless they want such and such political topic in which case sterilize them at their request with no counseling etc etc." I think this community may have something more interesting to say.
I especially don't know how to handle this given the tendency to strongly protect autonomy in some areas but not others.
More general CW implications include the usual trans problem, but also "protecting people from themselves instead of the more specific patients.
The legalese consent forms doctors go over with patients are a joke.
My wife also recently had laser eye surgery, and had to go through signing dozens of pages that describe the complications. Of course the doctor went over with her at a high level what the forms meant, and she didn't read them, and just signed anyways.
I really wish that we could just sane 1 paragraph (or even better bullet point) list consent forms for everything, not just medicine.
lol, i did mine in Mexico. Doctor just told me in broken English that "there are some small risks" and shook my hands. We worked it out. Everything went great.
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It's a difficult problem, because while there definitely are people who don't listen, don't understand, or ignore the warnings, there are doctors who don't warn, or try to downplay, or just treat the patient like "take the tablets because I told you so".
I've had the latter experience both for myself and for family members. We got into the habit of buying "home guides to medicines" in order to look up side-effects and contraindications because my father had had so many bad results from "try this new medicine", has bad reaction which nobody warned him about/"take this new medicine", it reacts with medication he is already on. So from then on we researched, as best we could, any medications he was on in case that "okay yeah, you should not take X and Y both".
I've had a couple of those myself, including "okay, I'm supposed to tell you that this medication sometimes has this side-effect, but it's VERY rare and hardly ever happens", okay I take the first dose and oops. I get the reaction. Which can be a life-threatening one if I choose to believe the doctor and keep taking it. Or "Sorry doc, I can't take this new medication" "Why?" "Got an allergic reaction" "Oh, really?" I describe symptoms and "Right, that is an allergic reaction, stop taking it". So again, every time I get new medicine, first thing I do is go online and check if there are warnings, side-effects, or contra-indications with what I'm already taking.
So while I sympathise, I don't know what can be done. If doctors over-warn, that triggers panic, if they don't warn, there is risk of a very severe side-effect. And yeah, you'll have patients who don't listen anyway.
Yup. :/
Pharmacists do have a helpful role here though. Specialities like Psych and Oncology have medication that is complicated and generally have the time to pause and talk through some things, but an antibiotic for an infection? PCP gonna move on to the next patient - good time for the pharmacist to do med information while dispensing.
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How would you go about protecting the patients from themselves? In the examples you mentioned, doctors have a duty to explain things and even repeat doing so when necessary, but you can't force them to act the way you want.
With side effects the issue is that from the most typical medicine anyone takes, to ones with more serious side effects, you will find a long list of potentially dangerous side effects. So long that is ignored. People are trained by such experience to dismiss the issue.
I agree with another poster that the key medical advice should be written down. People forget things and if they have it written down a greater share will follow it. Good communication requires adequate emphasis and summarization. People are fallible and then a decent share of people would be lower IQ. Of course, the doctor's should do their job and at the end of the day the patient has their own responsibility to live their life and to follow their doctor's advice. You can't do it for them.
The doctor's duty is to try to be effective communicators that adequately explain the issue in a manner that most people would understand and able to follow, if the patient's desire to do so. It isn't a checklist that just mentioning an issue means that they have done a good job.
This essentially means some paternalism, since it requires extra effort for some patients. But only to a point. Basically any field will have a million of "reasonable person" subjective tests that good professionals must try to follow.
Only allowing elective work to be done (especially risky or life altering stuff) after a longitudinal period sounds like a good step. Pretty common to do this for trans stuff but less so for things like a tummy tuck or the sterilization, which can also go wrong but we are happy to do.
I generally get the feeling the consent process exists to protect us from patients not the other way around, and longer/more clear communication may not help with that.
Written communication can be a problem sometimes though - you are going to have to write down that one of the risks is death, or other scary things and it's going to be worth it, and rare. But having that on a piece of paper that someone can stare at can be a bad thing.
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Of course I do understand that what follows is a lot more complicated, but I think that in general medicine should always be driven by primum non nocere - first do no harm principle and I would be much more strict in enforcing this. So for instance transhumanist things like most forms of esthetic medicine such as breast implants, trans surgeries, contraception pills, sterilizations, euthanasia, abortion and other similar or procedures or drugs would be considered outside of core publicly funded medicine. It could still be provided but under different scope let's say akin to getting tattoo or going to nail saloon and thus it should be automatically clear to the customer that the primary goal is unrelated to certain standard of this no-harm principle and that he or she should accept the risks as well as costs associated with it.
As for the part where people do not follow the medical plan or even actively sabotage it, which then requires even more resources from the system, I think having a system of deductibles like let's say in Singapore can partially resolve the problem. So the principle is that state pays for your medical bills because it is a prosocial thing to do in order to have healthy population but only up to the point. A level up from that is to involve immediate family so for instance part of the costs will be coming from their savings so that the immediate family (children, spouse, parents) has incentive to pressure that person to do something about themselves or they will be at least partially held accountable.
I've seen a fair amount of online complaints about "I don't want kids, I'm sure I don't want kids, I want to be sterilised but the doctors won't do it because I'm too young and might want kids later, I'm sure I don't want kids".
I think the solution there is to take away the right to sue in case of change of mind: you understood this procedure would make you sterile, you requested it because you wanted to be sterile, you signed the agreement that you understood this, now five years later when you can't get your boyfriend to marry you because he wants kids, you can't come back and sue us for giving you what you wanted.
Also protection around minors: yes, I'm sure your child is a very mature and intelligent 12 year old and is not being pressured by you to go for this procedure, but I'm not doing it until they're 18. Be that anything from plastic surgery to hormones, even with threats of "but my child will commit suicide if you don't do this!"
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Do you think physicians have a role in executions? Our stance is for the most part no (because do no harm), but I do think about the Solus principle - "had to be me, someone else might have gotten it wrong."
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In my ideal for a medical system, we'd do an old fashioned meeting-of-the-minds type contract (not the modern unread "terms and conditions" type contract), where the two parties involved (patient and doctor) would discuss all of the ins and outs of the medical intervention until both parties were happy that all risks have been properly communicated and they both have an understanding of what things the doctor would be liable for, and which things the doctor wouldn't be liable for. Then they would both sign the resulting document, and the patient would live with what they got.
However, I realize my proposal is a stillborn one. Standardized contracts and bureaucracies are the easy way of dealing with massive amounts of patients and procedures, and my proposed system would put an undue burden on doctors.
Barring that, I'd at least like doctors to make a good faith effort to communicate all major known risks, as well as known unknowns and unknown unknowns to the patient before they get them to sign the unreadable legalese that they likely have to do before a procedure.
Overall though, I'm in favor of a system that treats adults as adults, responsible for their good and bad outcomes. If somebody with, say, a mobility issue signs up to a procedure which has a 99% chance of completely curing them and a 1% chance of leaving them worse off than they were before, they should be allowed to make the choice to undergo that procedure, and they have to own and live with the results if they end up in the 1% chance world.
I agree that there's a weird disconnect between how the medical system treats sterilization as a primary effect, and as a side effect (in the case of trans people.) My preference would be to resolve things so that childless adult women could make an informed choice to have themselves sterilized regardless, but I get that many doctors are squeamish about such things.
A disclosure sheet listing each major side effect alongside its likelihood would be a simple and relatively easy way to fully communicate the known risks without taking up too much of the doctors’ time. Since every medical intervention lists death as a possible side effect, everyone ignores death as a possibility. That would change if one was listed as coming with a 0.0001% chance of death while another was listed as coming with a 15% chance of death.
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On paper we do a good job of this (although realistically I know a lot of docs half ass the consent process). The issue is that people struggle with risk. 'If I had known I was going to have night vision problems I wouldn't have gotten the eye surgery." Well generally we can't predict that in advance, we can tell you the rate of problems and so on, but that's it. That doesn't stop patients from wanting us to have perfect knowledge and suing when we simply don't.
Yeah, that's it. "this is a very rare side effect" means that someone will get it, but they can't predict it will be you, and the vast majority of people will be just fine. So there's the choice between "effective medicine with rare side-effect, give it and risk the one in ten thousand chance" or "withhold the medication and the definite problem the patient already has gets a lot worse".
It's understandable why doctors choose the first option, and also understandable why patients sue if they happen to be the unlucky one in ten thousand that got the rare but severe side-effect. Nobody is setting out to be deliberately slapdash or stupid.
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I am in two minds on the matter.
Primarily, I have strong libertarian sympathies. I would prefer, for myself, the absolute right to choose any procedure for any reason (personal finance and avoidance of externalities allowing), and my standards for informed consent are "I explained to you, quite simply, that there's always a potential for things to go wrong, and now that they did, that's unfortunate, but you knew what you were getting into".
Unfortunately, this does have negative consequences. I am mostly willing to accept that, but all else failing, I would at least hope for a formal certification of a person as a "sophisticated patient", in much the same way that the FTC declares certain people sophisticated investors and allows them them to indulge in high risk (and high reward!) activities that they deem too dangerous for gullible proles.
In practise, this is a de-facto standard doctors extend to other doctors under their care. The gynecologist we saw would normally refuse to insert an IUD in a nulliparous unmarried woman, but when my girlfriend and I could argue UKMEC guidelines with her and point out that the benefits outweighed the risks (even if not as much as oral contraception), she happily went for it. Similarly, I disagree with the old adage that "doctors make the worst patients".
Bullshit. Sure, a few people are inclined to think they know better than their treating physicians, but the majority, having both referred and been referred to, understand the limits of their competence and can also be relied on to actually know what you mean when rattling off the standard boilerplate, which usually makes normal eyes glaze over.
But this shouldn't be something winked-nudged for other doctors and allied health personnel. If I encounter someone who has done their research and seems generally intelligent, I sincerely wish I could hand out a pass that both indemnifies me from some medicolegal risk if they were to take less than ironclad advice, and also lets them access more experimental therapies without the headache of FDA waivers in terminal cases and so on.
A lot of people from these parts would qualify. Much of the griping about paternalism from doctors here and in adjacent parts of the internet arise from intelligent, often UMC people not realizing that they're not typical in terms of what a normal doctor encounters, and our default priors are heavily biased against accepting it when a patient excitedly advocates for an experimental therapy they read about online (in your case it might be legit, but it is more often a misreading of WebMD or, shudder a Tumblr blog for alternative medicine).
Usually, your doctor does know better. Though a good one should also recognize an informed patient.
I had a terrible day. Overworked, underpaid, but what was most painful was seeing a poor lady with metastatic gall bladder cancer that was all but 100% confirmed. Severely jaundiced and anorexic, multiple distant mets including to the spine, and unlikely to be worth anything but palliation.
Her family was adamant that the diagnosis be kept from her. In the UK, that would be flat out illegal unless I fastidiously document that the patient themselves declined to learn more about their diagnosis. But in India, and many other Asian countries, family members usually handle such matters, especially for old, poorly educated people who are unlikely to take the knowledge of their impending demise well.
"Is it a gallbladder stone?" She asked me hopefully while her family was off haggling with my supervising consultant. I was about to go into a painstaking explanation about her cancer, and did get well into it, but I was rapidly grabbed by her son and daughter and told to please not tell her she was about to die, and certainly not from cancer.
Luckily for me, I doubt she understood half of what I said, especially since my Hindi is only passable, and soon enough, I was tip-toeing around the sudden change in surgical plans and why, a patient with "cholecystitis" was going to be have both an ERCP and an FNAC of a supraclavicular node.
"But my neck is fine doctor! And my back hurts." The PET-CT showing avid uptake disagrees. Maybe the back pain was from a fall a few months back, her daughter prompts. Sure. Maybe. Maybe it's also the mets causing fragility fractures, I don't say.
"Is she going to get better? What does chemotherapy mean?" I get asked by the family, who have processed about 10% of what the senior surgeons have told them. Well, at least I don't have to lie that the sudden pivot to an ERCP will improve her jaundice and QOL if not her life expectancy by much. And you'd hope after 6 months here I'd know how to explain how chemo works. She developed SOB after the OP, ?PE, and I watched the bacon being made as my surgical consultant grabbed a passing CCM doctor (who made the mistake of walking through the ward) and they haggled over what tests met very strict criteria for cost-effectiveness. No ABG for you, a CXR and ECG? Yeah, they can afford it. She got better till she inevitably gets worse.
To add insult to injury, I had a mandatory communications training course that day. Aced it, of course, but I had to chuckle and groan at how divorced from reality much of it was. And then I face-palmed when the final quiz began asking questions about HIPAA, which is not a thing in India and not covered in the course itself, strongly suggesting the material had been designed by ripping off a US source, or perhaps the latter hadn't localized it particularly well. All the actual citations and foot notes should have made me sus in the first place.
Some people are dumb, or simply won't understand no matter how much you dumb things down. We avoid this truth, except where formal diagnosis of mental incompetence lets us firmly but gently usher demented grannies back into the chemo ward, and most importantly that this is true even for seemingly functional members of society.
That's about it. Any wonders I wish we could all be smarter so my chosen preference of letting everyone decide, for better or worse, about their health, would cost less in bodies and money? I'll still pay with mine.
Intelligent patients can be a double edged sword. A smart enough person can read up on a treatment, decide they want it, and then think of "the doctor wants to make sure I understand the consequences" as an obstacle that needs to be solved not by trying to understand anything, but rather by picking the right words to get past the obstacle. And the smarter they are the more they can convince the doctor they've really thought it out without actually thinking it out.
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Jesus fucking christ.
Anyway - thank you for in essence covering my thoughts better than I did.
I think what I struggle with is that people should be allowed to make mistakes, but they should not be allowed to be fooled (or at least we should try and be more proactive in preventing that) but we have this issue where so many big topics are misleading, or political (as the sterilization is) and therefore people may need more protection.
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A rather banal way to get patients to remember medical advice is to... actually write it down. Memory is fickle and people overestimate how well they remember details.
Always shocks me that I can go for a 15 minute check up where the doctor will say 10+ things I'm supposed to remember in detail and none of it is written down.
Doctors writing down their medical advice also solves the problem of patients lying (perhaps not even consciously) about what the doctor said, which is unfortunately common.
People will not read those documents. Doctors give medical advice out loud because people pay attention to a person speaking and generally not to a stack of papers.
I find it way easier to pay attention to a piece of paper than to a doctor speaking.
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This is already a thing, at least where I live. Any time I see the doctor I always leave with a handful of documents covering any medications or exercises or what have you that they are recommending. Of course I leave those papers in the car and never look at them again.
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Interesting. I think this would work. Doctor just needs to make brief dot points and print it out. He can also save a copy of the notes to the patient's file (to cover his ass in the event of patient's lying).
Doctors are often lazy and or overworked though, so even though this would be a small amount of work, it would still be a not insignificant thing in the context of cramming even more activities into a 15 minute consultation.
This is solved by evaluating doctors based on their EMR, at least for outpatient visits. Number of visits must match the number of new EMRs and randomly selected and anonymized EMRs are then evaluated by unaffiliated medical workers against a checklist.
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It's pretty common to give print outs like medication information sheets, or something called an "after visit summary." Frequently what happens is that it gets comically enormous and useless as various stakeholders fill it with random bullshit.
Anything more personalized/off the cuff becomes extremely difficult, especially as corporate control of medicine pushes doctors to see more patients faster. Really hard to do when your visits are 15 minutes max and that's supposed to include your charting time.
Could you give any examples of "erroneous"? I've certainly seen "enormous"/"useless"/"random bullshit", and burying important truths in so much filler they get ignored might have consequences as bad as falsehoods, but I just don't recall seeing any likely falsehoods. Even the random bullshit is unevidenced rather than obviously untrue, along the lines of "let's put X in the list of possible side effects, as CYA, even though our only evidence for X is that in one study the treatment group reported it almost as often as the control group"...
Not nearly as common as death by volume of paperwork, but an example of actual errors is when practice changes due to new information, and nobody updates the info sheets.
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Yeah I was talking about something a bit more personalised for condition management that is tailored to the patient rather than a source sheet ripped straight off webMD. Agreed that there probably isn't time to do this in a 15 minute consult unless the doctor is
youngreally on the ball.I actually try to find younger GP's for this reason. Many boomer doctors just have not kept up with newer treatments, a professional bedside manner, or technology use.
That approach can be fine for medical (as opposed to surgical specialties - in those you want someone who has some years of physical practice without being too far along in age), although the caution is that medical knowledge changes quickly. I remember within a couple years of starting residency (much less being an attending) some of what I was taught was outdated and it would have been very easy to not notice.
As to your other piece a lot of surgeons (and things like Oncologists) will have ancillary staff who can help generate counseling and additional information for patients in a way that is actually helpful.
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This is basically how electronic medical records already work. Good ones have things neatly templated for different sorts of encounters and voice recognition to help speed up documentation. Printouts for patients are typically handled by clerical staff. There are quite a few hospitals that struggle with both implementation and operationalizing workflows to make this actually work, but it's how things are supposed to work. In practice, the IT teams do a middling job of setting things up and training users, the physicians are old and don't want to do the work, the government regulations are burdensome and make the whole thing more cumbersome and unintuitive than it needs to be, and the result is a boomer doctors declaring that computers are stupid.
Yeah I was more aiming for your General Practitioner (GP) in a clinic having a printer at his desk and potentially a notes template with letterhead ready to go. Smash out 5 x 1 line dot points summarising your advice on how to manage their condition and have it auto save into their file.
If it isn't as easy as that it won't get done. You'd be lucky to get some unintelligible scribble notes on a sheet ripped out of a physical notepad even if you requested it.
These five bullet points will get padded out with 10,000 bullet points of ass covering and the end result will be no one reading it because of course the medication is known to the state of California to cause cancer, what isn’t?
This happens a lot in our own fucking notes we used to share mission critical information with each other (called note bloat), pretty much zero reason to assume it will have the smallest usefulness for patient facing stuff (for the reasons you outline).
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