7 ms·

Pursuing this as an adjunct therapy for my wife's cancer treatment showed me a side of healthcare that I hadn't really considered before. Fear. Not fear of a

by jcims 7y ago

Pursuing this as an adjunct therapy for my wife's cancer treatment showed me a side of healthcare that I hadn't really considered before. Fear. Not fear of a calculated risk going the wrong way healthwise, but profound fear of stepping anywhere outside the brightly lit path of 'standard of care'. There's this phase change in the doctor's expression that you can see visually when you enter into conversations such as this (the other one being management of hyperglycemia). There's a certain slackening of facial expression and straightening of posture. The vocabulary becomes smaller, blinking more regular, tone flatter and the conversation becomes more circular. It took me a little while to sort it out, but I've come to the conclusion that these (mostly young) doctors are so incredibly leveraged in their position by student loans and sunk cost into their education that they simply cannot risk anything outside of the prescribed approach to care for a patient...particularly one where there is generally a foregone conclusion as to the outcome. I initially raged against them individually, but now I see them as scared children and my hatred is directed towards the system that creates this fear. Should I encounter this situation again, my first goal will be to find a doctor with a terminal illness themselves and see if we can't forge a new path together.

appleiigs 7y ago
Without scientific evidence the young doctors would be guessing and that would not be responsible of them. Without scientific evidence, you are guessing too.
- jcims 7y ago
  Philosophically there's nothing wrong with what you're saying, but it's not particularly applicable. None of the 'standard of care' therapies for, in our case, ovarian cancer are guaranteed to be effective...they simply have hazard ratios that are more favorable than the rest. So, quite literally, doctors are already guessing as to what to do next once you are in a recurrent cancer setting (even before, really). On top of that there is a mountain of clinical evidence that high dose intravenous vitamin C (IVC) has an incredibly low risk of adverse events in healthy patients and there have been clinical trials and case studies indicating that it improves quality of life in cancer patients undergoing chemotherapy. Evidence that IVC actually has a therapeutic benefit in killing cancer is starting to emerge, but definitely needs work to meet the standard of testing that is generally mandated for something to become standard of care. So now we're in this weird local minima of scientific interest in a potential therapy. Nobody that I've seen is seriously suggesting that IVC is an effective monotherapy against any kind of cancer. But there is growing evidence that it is a safe and effective adjunct therapy to increase quality of life and potential outcomes for many patients. Unfortunately, clinical trials are expensive and most oncology teams are not interested in results that haven't specifically tested the cancer that they specialize in. So you are left with waiting for someone to explore the enormous graph of specific cancer treatment settings and apply this trial. In other words, it's not coming to a theater near you any time soon. Meanwhile people are dying because the current treatments are not working, and finding a doctor with the guts to explore these options with a willing and educated patient is, in my personal experience, next to impossible.
  - Retric 7y ago
    Cancer patients in chemo are the opposite of healthy. They are at vastly higher risk for a huge range of things because the ideal chemo treatment takes someone to literally the edge of death while killing off as many cancer cells as possible. Cancer meanwhile is doing it’s best to evolve past this setback to continue growing as fast as possible. This quite reasonably makes most doctors very cautious during the process. To the point where significant studies on exercise have been done to verify it’s still safe.
    - jcims 7y ago
      I understand this perspective, but I wholeheartedly feel that a patient should have agency in any decision where risk is involved. They certainly have the agency to deny treatment when it clearly is going to result in their accelerated demise, but they have no ability to access treatment that, at worst, could result in the same but at best give them a bit more quality or quantity of life.
      - asdff 7y ago
        It seems like a fair request, that you should be able to do what you want, but that isn't what you are asking of the doctor in this situation. You are asking them to do something outside the bounds of their profession to do what you want. An extreme example would be if a suicidal patient asked their therapist to put a bullet in their head rather than give them an antidepressant, should the patient be free to ask for this and should the therapist be obligated to fulfill this request? It's a question of what is ethical and that goes beyond your own agency. You are free to put a bullet in your own head, or find your own source of vitamin C, but you can't put that ethical dilemma on the doctor and expect a result.
    - ohmanthatsnotso 7y ago
      Cancer is not an entity, or creature. The whole concept of “fighting the cancer” or “cancer is doing it’s best” is completely misguided. Cancer are damaged cells in a highly acidic body. Chemo is adding even more acid to the body. Cancer appears to spread and grow since all conventional treatments do not understand the very basic concepts of cancer. There is no catalog of hundreds types of cancers. This is a man made industry. Eye cancer is lung cancer is prostate cancer. It’s just the location in which your body was unable to eliminate waste through the lymphatic system. Create a base chemistry and your lymphatic system and kidneys will be able to eliminate. Every person who suspects having “cancer” or really any sort of tumor or cyst should be consuming only fruits high in astringents such as organic grapes and aronia. And absolutely never get a biopsy. The body knows to keep the damaged cell inside a tumor and medical doctors decided the best thing to do was poke holes in it, which then makes it far easier to spread. Insanity...
- hetman 7y ago
  I don't think the issue here is about guessing. It's about how reluctant many doctors can be about exploring scientific paths which are newer and as yet less traveled. To be sure, it would take a non-trivial time investment on their part. However, many doctors (though not all) seem entirely blind to anything they are not familiar with already, even if there would be reasonable scientific basis. There can be a level of pride there.
pnw_hazor 7y ago
Staying within the "standard of care" basically immunizes MDs from malpractice liability. They are the only profession that has such a carve out. Other professions and industries have to live by a reasonableness standard and cannot hide behind "everyone else does it this way" as a defense. Thus, MDs are disincentivized from being creative or innovative outside of pure research settings.
- jcranmer 7y ago
  > Other professions and industries have to live by a reasonableness standard and cannot hide behind "everyone else does it this way" as a defense. Except "everyone else does it this way" is quite literally an acceptable definition of "reasonable"...
- mrfusion 7y ago
  Why can’t patients sign a waiver saying they won’t sue?
- asdff 7y ago
  MDs participate in clinical trials all the time. They are free to participate in advancing therapies that they believe in if they have a sufficient patient cohort and resources to test their hypothesis.
sjg007 7y ago
The path outside the standard of care are clinical trials. The best way to get adjunct therapies tested is to start a foundation, collect money and push pre-clinical and phase 1 studies via grants. We've definitely lost the cowboy culture that basically cured leukemia. I don't know if that is a good thing or not. Trump's new FDA law allows for some more experimentation but it's not clear it'll work. Hopefully, the new FDA personalized precision medicine approach will allow for individual treatment that can still be aggregated into clinical trials. I think there are a lot of re-purposing experiments going on with AI/big data that should translate into preclinical work and possible new clinical trials.
- jcims 7y ago
  One of the problems I've found with clinical trials is that the PIs set it up for 'pristine' candidates to keep the signal as clear as possible. Once you're heavily treated for cancer you can kiss lots of them goodbye, regardless of the potential efficacy. It's also super hard to find a good trial for a specific patient...clinicaltrials.gov is helpful but it's still a mess because everything is free-form text. Emergingmed and others have tried to normalize and 'wizardize' the search, but they miss things in their normalization of the study focus and criteria. Also as I mentioned above, there are very few trials for 'cancer', they are almost all disease-specific because the oncologists want to know how it's going to affect their specific situation. This multiplies the surface area that needs covered in a trial, increasing the cost (and delay). Allowing patients, particularly terminal ones, to make informed decisions on treatment that hasn't been approved is morally correct in my opinion and definitely a way forward. Ideally each little 'experiment' would be tracked in some way to start creating enough of a sample size to draw some statistical conclusions. This could then drive interest in running a full set of trials on the therapy.
  - alfromspace 7y ago
    I agree - ran into this problem with my dad. He had a rare cancer that quickly stopped responding to hormone therapy (the only kind of treatment known to work), and deteriorated rapidly. We called Sloan Kettering to see if there were any clinical trials he could enroll in, but since my dad had recently become bedridden, he wasn't eligible for anything. I don't know if there was anything else I could have done - it seems like the argument of "he's dying and wants to try anything that has the slightest chance of working" was completely expected and unconvincing to them. Then at his normal oncologist, a brand-new drug was recommended that only worked on cancers caused by NTRK gene fusion - but my dad would have had to get a third biopsy to confirm that and get the prescription. Why didn't they get enough material the first or second time? Nobody could say. Every step of the treatment process was done piecemeal and ultimately my dad was in no condition to get yet another biopsy. I wish there was some process by which he could've just gotten the damn pills in the off chance there was a response.
ralusek 7y ago
You are severely underestimating how much of being a doctor is having to defend the route of standard care against what is actual nonsense. For every path outside standard care which might actually amount to something useful, there are a hundred totally useless, potentially harmful alternative paths. I'm sure in the modern era, when they are just trying what they know is the best researched, best chance they know for a successful path for you or your loved ones, they are beyond sick of hearing your alternative theses assembled from mommy blogs and witch doctors. In other words, I suspect the emotions you're detecting are probably exhaustion and annoyance, and any genuine fear is most likely going to be that they fear for your outcome should you deviate from what they believe to be the best course of action.
- BenoitEssiambre 7y ago
  This. My wife is a doctor and she cares and tries hard to keep her patients healthy, only to have them oftentimes undo all the work she does by ignoring her advice and doing some other nonsense. This is true even when they are completely insured, the real medicine is free and it would require very little efforts. She seems exhausted by it especially since she's the one who then has to deal with the subsequent unraveling of their health and sometimes the emotional spiral of their early death.
  - dd36 7y ago
    Sounds like trying to convince a friend to do the right thing.
- jcims 7y ago
  >You are severely underestimating how much of being a doctor is having to defend the route of standard care against what is actual nonsense. I can assure you that my wife and I received orders of magnitude more nonsense from friends, family, colleagues and random assholes in the mall that saw her headscarf. The amount of unsolicited packages and potions we received at our doorstep from anonymous people over the course of her treatment puts anything that I brought to her doctor to shame. >I'm sure in the modern era, when they are just trying what they know is the best researched, best chance they know for a successful path for you or your loved ones, they are beyond sick of hearing your alternative theses assembled from mommy blogs and witch doctors. I get it. I really do as I personally was asked repeatedly to 'just try this' random bullshit for my wife all the time. There's a huge gap between sprinkling lion's mane mushroom on your eggs and seeking treatment for my wife's hyperglycemia that put her solidly in the diabetic category. Endocrinology wouldn't treat it because she didn't show elevated A1C, but I had nobody in my wife's corner to explain why A1C isn't a good signal when you're severely anemic and getting transfusions every other week. Google 'hyperglycemia cancer progression' with a 'site:gov' to keep it from NIH and other government agencies. There's a GIANT FUCKING SIGNAL that elevated blood glucose increases cancer progression, but I couldn't find a single doctor to even listen. To them it's all equivalent bullshit. Maybe it's not fear then. Maybe it's apathy. I'm not sure that's better.
Gatsky 7y ago
Not sure about your analysis. I think you are just caught in the gap between personal preference and the goals of the healthcare system. You of course see your preferences as paramount, just as does another person who wants hyperthermic therapy, or another who wants hyperbaric therapy, or another who wants medical support for a 21 day water fast, or their psychiatrist to supervise a psychedelic session etc etc. It isn’t possible for a healthcare system to accommodate all these requests, or to engage with other non-mainstream practitioners who administer these therapies. I make no judgement on the validity of your request. From my point of view, people have been banging on about IV vitamin C therapy in cancer for years but never actually done a properly powered double blind randomised placebo controlled trial to show that it works. We can complain about lack of funding, obstructive medical systems etc, but if some people really think IV vitamin C is the best thing since sliced bread then they would find a way to get the trial done.
- ksaun 7y ago
  When the expected outcome from receiving standard of care treatment is the death of you or a loved one (which is sometimes the case with cancer), then you may have a higher tolerance for risk than the healthcare system.
  - asdff 7y ago
    It goes the other way too. Steve Jobs would still be alive if he didn't eschew his doctor's advice and dip into alternative medicine that he truly believed was the correct solution, and he is not a dumb man.
    - jcims 7y ago
      Who cares, it was his option to pursue. Everyone's free to not take treatment regardless of the potential benefit. Hell you can go to the store and buy cigarettes. However, if you wish to avail yourself of a treatment that isn't standard of care, you're going to have a bad time unless you can find a clinical trial and magically pass both the inclusion and exclusion criteria.
    - 7y ago
arkades 7y ago
Living on the other side of that table, and living in the rooms where docs sit and shoot the shit after such patient encounters, and as someone with a debilitating chronic illness that people love to spout bullshit alternative medicine theories and treatments for, I'm going to go ahead and say your conclusion is both self-serving and wrong. Self-serving because, naturally, the reason that your requests are met with poor regard isn't because there's something wrong with the request, but because something is wrong with the person receiving it. But that's okay; that's the nature of human opinion and subjectivity. You can accuse me of the same, of course - oh, and will. I'm sure this thread will go from Zero to Malpractice in 6.4 seconds. But wrong: You're going to ignore this sentence, but dear god, do I want to burn it into your eyeballs, and the eyeballs of every person reading this: I care. The vast majority of my colleagues care. The vast majority of nurses care. The vast majority of everyone you meet in the hospital cares. They've been there, either themselves, or with a loved one; have been there in the past, or are there now, whether or not they disclose that to you. They give a shit. When we work with someone that is suffering and dying, we care. We hurt. And when, god help us, there's a chance we can actually help and reduce that suffering, be it for the patient or their family, and they take that away from us, we hate them a little. We hate them for making us care, and making us watch and experience and share this suffering when maybe we didn't have to. When a patient says, "You know, it's really important to us that we explore (dubious option X)", it puts up our radar for "oh fuck, this is going to suck." And the more the patient goes down that road, the more we know they're going to veer away from care that's at least have some evidentiary basis to support it working, the more we know we have to go down the fucking drain with them. Not that long ago we had a lady on our IM service who'd had a promptly diagnosed, treatable, resectable local cancer... 18 months ago. 18 months of quack bullshit later, she came in to us because of the severity of her constipation, because that cancer arose near her intestines, and had now matted and infiltrated them. She and her family were proof to all conversations regarding reality: she just needed IV nutrition of the appropriate sort, because the problem wasn't that the cancer had utterly invaded her GI tract, it was that she needed the right vitamins! Our nutritionist couldn't come up with the miracle combination of IV nutrition for her, because she kept deteriorating (of course she did.) The family wouldn't allow painkillers, because those worsen constipation, and of course, they refused to acknowledge this constipation was because of her rampant cancer they opted to leave untreated, not because of some magic nutritional deficiency. Which means no opiates - because any minute now we're going to cure that constipation with the magic vitamin. So we had to listen to her scream, then moan, then quietly writhe. For days. While the family insisted we just find the right vitamin. Until the family insisted we try spoon-feeding her, because there just isn't the right IV feed for her. We refused. They fed her themselves. This lady who hasn't passed stool in two-odd weeks promptly vomited, aspirated, and within a few hours was in the ICU for a chemical pneumonitis. We got to watch her die. We got to visit every-day. We got to try to gladhand the family and give them bland cliches because we didn't want them to hurt more. We didn't want to rub it in that they killed their mother. But we got to watch it. In detail. I had the dismal, terrible pleasure of pronouncing her dead. I'm not afraid of the terribly scary management of a vitamin C infusion in a terminal patient. I'm hurt. I'm pained. I suffer every time I have to watch preventable misery and death because a patient and/or their loved one's are busy chasing Google MD's endless font of nonsense. And because I'm not a goddamned robot, I dislike suffering, and those people that force me through more. Surprisingly, doctors take a lot of solace in "we did what we could for her. We made it as painless as possible. We gave her as many days as we could." That means a lot. And when it's taken away from us, holy shit, do we hate it. This was pretty stream-of-consciousness. I'm not editing it, and I'm not coming back to it, so if anyone bothers responding, know it's not for me.
refurb 7y ago
The reason why doctor's tread a careful line of "standard of care" is because there is evidence to back it up. Trying random things that "might work" is a great way to get hit with a malpractice case.
nradov 7y ago
I don't believe you are capable of accurately assessing whether another person is experiencing fear versus some other emotion. Everyone likes to believe they're good at reading others but hardly anyone can do so reliably.
- jcims 7y ago
  I’d wholeheartedly agree. There are definitely some docs with shark eyes that haven’t felt anything in a looong time. But we were at a research hospital and young docs are the norm.
schmichael 7y ago
I'm very sorry to hear about your partner's cancer, and I can't imagine what you've been through. That being said I think you're making a huge unfounded leap in interpreting their responses. What you're describing sounds like me on a customer support call when presented with evidence that my diagnosis of a software issue was wrong. My mind races, goes back to first principles (small words), I sit up and dial up my professionalism. I also can't help but wonder as to the reliability of the customer. I'm the expert in my software! Who's more likely to be wrong? It's a tough situation in software, I literally cannot imagine what it's like when someone's life is on the line. Best wishes, and I hope you get the best medical care possible.
- jcims 7y ago
  I've been around people for nearly 50 years and spent the first 5-6 years of my career doing phone support for a laptop firm and then some fairly advanced text translation software for EDI. I know exactly what you're describing, I've done it many times myself. Please just trust me when I say that's not it. I could be wrong in my assessment, sure, but they are definitely not thinking about how to incorporate anything I suggest into treatment. It's pure 'get this guy to shut up'. Thank you for the kind wishes.
exclusiv 7y ago
Thank you for this incredibly poetic comment. A lot of wisdom here. I wish I could write like this!

by jcims 7y ago

appleiigs 7y ago

Without scientific evidence the young doctors would be guessing and that would not be responsible of them. Without scientific evidence, you are guessing too.

jcims 7y ago
Philosophically there's nothing wrong with what you're saying, but it's not particularly applicable. None of the 'standard of care' therapies for, in our case, ovarian cancer are guaranteed to be effective...they simply have hazard ratios that are more favorable than the rest. So, quite literally, doctors are already guessing as to what to do next once you are in a recurrent cancer setting (even before, really). On top of that there is a mountain of clinical evidence that high dose intravenous vitamin C (IVC) has an incredibly low risk of adverse events in healthy patients and there have been clinical trials and case studies indicating that it improves quality of life in cancer patients undergoing chemotherapy. Evidence that IVC actually has a therapeutic benefit in killing cancer is starting to emerge, but definitely needs work to meet the standard of testing that is generally mandated for something to become standard of care. So now we're in this weird local minima of scientific interest in a potential therapy. Nobody that I've seen is seriously suggesting that IVC is an effective monotherapy against any kind of cancer. But there is growing evidence that it is a safe and effective adjunct therapy to increase quality of life and potential outcomes for many patients. Unfortunately, clinical trials are expensive and most oncology teams are not interested in results that haven't specifically tested the cancer that they specialize in. So you are left with waiting for someone to explore the enormous graph of specific cancer treatment settings and apply this trial. In other words, it's not coming to a theater near you any time soon. Meanwhile people are dying because the current treatments are not working, and finding a doctor with the guts to explore these options with a willing and educated patient is, in my personal experience, next to impossible.
- Retric 7y ago
  Cancer patients in chemo are the opposite of healthy. They are at vastly higher risk for a huge range of things because the ideal chemo treatment takes someone to literally the edge of death while killing off as many cancer cells as possible. Cancer meanwhile is doing it’s best to evolve past this setback to continue growing as fast as possible. This quite reasonably makes most doctors very cautious during the process. To the point where significant studies on exercise have been done to verify it’s still safe.
  - jcims 7y ago
    I understand this perspective, but I wholeheartedly feel that a patient should have agency in any decision where risk is involved. They certainly have the agency to deny treatment when it clearly is going to result in their accelerated demise, but they have no ability to access treatment that, at worst, could result in the same but at best give them a bit more quality or quantity of life.
    - asdff 7y ago
      It seems like a fair request, that you should be able to do what you want, but that isn't what you are asking of the doctor in this situation. You are asking them to do something outside the bounds of their profession to do what you want. An extreme example would be if a suicidal patient asked their therapist to put a bullet in their head rather than give them an antidepressant, should the patient be free to ask for this and should the therapist be obligated to fulfill this request? It's a question of what is ethical and that goes beyond your own agency. You are free to put a bullet in your own head, or find your own source of vitamin C, but you can't put that ethical dilemma on the doctor and expect a result.
  - ohmanthatsnotso 7y ago
    Cancer is not an entity, or creature. The whole concept of “fighting the cancer” or “cancer is doing it’s best” is completely misguided. Cancer are damaged cells in a highly acidic body. Chemo is adding even more acid to the body. Cancer appears to spread and grow since all conventional treatments do not understand the very basic concepts of cancer. There is no catalog of hundreds types of cancers. This is a man made industry. Eye cancer is lung cancer is prostate cancer. It’s just the location in which your body was unable to eliminate waste through the lymphatic system. Create a base chemistry and your lymphatic system and kidneys will be able to eliminate. Every person who suspects having “cancer” or really any sort of tumor or cyst should be consuming only fruits high in astringents such as organic grapes and aronia. And absolutely never get a biopsy. The body knows to keep the damaged cell inside a tumor and medical doctors decided the best thing to do was poke holes in it, which then makes it far easier to spread. Insanity...
hetman 7y ago
I don't think the issue here is about guessing. It's about how reluctant many doctors can be about exploring scientific paths which are newer and as yet less traveled. To be sure, it would take a non-trivial time investment on their part. However, many doctors (though not all) seem entirely blind to anything they are not familiar with already, even if there would be reasonable scientific basis. There can be a level of pride there.

pnw_hazor 7y ago

Staying within the "standard of care" basically immunizes MDs from malpractice liability. They are the only profession that has such a carve out. Other professions and industries have to live by a reasonableness standard and cannot hide behind "everyone else does it this way" as a defense. Thus, MDs are disincentivized from being creative or innovative outside of pure research settings.

jcranmer 7y ago
> Other professions and industries have to live by a reasonableness standard and cannot hide behind "everyone else does it this way" as a defense. Except "everyone else does it this way" is quite literally an acceptable definition of "reasonable"...
mrfusion 7y ago
Why can’t patients sign a waiver saying they won’t sue?
asdff 7y ago
MDs participate in clinical trials all the time. They are free to participate in advancing therapies that they believe in if they have a sufficient patient cohort and resources to test their hypothesis.

sjg007 7y ago

The path outside the standard of care are clinical trials. The best way to get adjunct therapies tested is to start a foundation, collect money and push pre-clinical and phase 1 studies via grants. We've definitely lost the cowboy culture that basically cured leukemia. I don't know if that is a good thing or not. Trump's new FDA law allows for some more experimentation but it's not clear it'll work. Hopefully, the new FDA personalized precision medicine approach will allow for individual treatment that can still be aggregated into clinical trials. I think there are a lot of re-purposing experiments going on with AI/big data that should translate into preclinical work and possible new clinical trials.

jcims 7y ago
One of the problems I've found with clinical trials is that the PIs set it up for 'pristine' candidates to keep the signal as clear as possible. Once you're heavily treated for cancer you can kiss lots of them goodbye, regardless of the potential efficacy. It's also super hard to find a good trial for a specific patient...clinicaltrials.gov is helpful but it's still a mess because everything is free-form text. Emergingmed and others have tried to normalize and 'wizardize' the search, but they miss things in their normalization of the study focus and criteria. Also as I mentioned above, there are very few trials for 'cancer', they are almost all disease-specific because the oncologists want to know how it's going to affect their specific situation. This multiplies the surface area that needs covered in a trial, increasing the cost (and delay). Allowing patients, particularly terminal ones, to make informed decisions on treatment that hasn't been approved is morally correct in my opinion and definitely a way forward. Ideally each little 'experiment' would be tracked in some way to start creating enough of a sample size to draw some statistical conclusions. This could then drive interest in running a full set of trials on the therapy.
- alfromspace 7y ago
  I agree - ran into this problem with my dad. He had a rare cancer that quickly stopped responding to hormone therapy (the only kind of treatment known to work), and deteriorated rapidly. We called Sloan Kettering to see if there were any clinical trials he could enroll in, but since my dad had recently become bedridden, he wasn't eligible for anything. I don't know if there was anything else I could have done - it seems like the argument of "he's dying and wants to try anything that has the slightest chance of working" was completely expected and unconvincing to them. Then at his normal oncologist, a brand-new drug was recommended that only worked on cancers caused by NTRK gene fusion - but my dad would have had to get a third biopsy to confirm that and get the prescription. Why didn't they get enough material the first or second time? Nobody could say. Every step of the treatment process was done piecemeal and ultimately my dad was in no condition to get yet another biopsy. I wish there was some process by which he could've just gotten the damn pills in the off chance there was a response.

ralusek 7y ago

You are severely underestimating how much of being a doctor is having to defend the route of standard care against what is actual nonsense. For every path outside standard care which might actually amount to something useful, there are a hundred totally useless, potentially harmful alternative paths. I'm sure in the modern era, when they are just trying what they know is the best researched, best chance they know for a successful path for you or your loved ones, they are beyond sick of hearing your alternative theses assembled from mommy blogs and witch doctors. In other words, I suspect the emotions you're detecting are probably exhaustion and annoyance, and any genuine fear is most likely going to be that they fear for your outcome should you deviate from what they believe to be the best course of action.

BenoitEssiambre 7y ago
This. My wife is a doctor and she cares and tries hard to keep her patients healthy, only to have them oftentimes undo all the work she does by ignoring her advice and doing some other nonsense. This is true even when they are completely insured, the real medicine is free and it would require very little efforts. She seems exhausted by it especially since she's the one who then has to deal with the subsequent unraveling of their health and sometimes the emotional spiral of their early death.
- dd36 7y ago
  Sounds like trying to convince a friend to do the right thing.
jcims 7y ago
>You are severely underestimating how much of being a doctor is having to defend the route of standard care against what is actual nonsense. I can assure you that my wife and I received orders of magnitude more nonsense from friends, family, colleagues and random assholes in the mall that saw her headscarf. The amount of unsolicited packages and potions we received at our doorstep from anonymous people over the course of her treatment puts anything that I brought to her doctor to shame. >I'm sure in the modern era, when they are just trying what they know is the best researched, best chance they know for a successful path for you or your loved ones, they are beyond sick of hearing your alternative theses assembled from mommy blogs and witch doctors. I get it. I really do as I personally was asked repeatedly to 'just try this' random bullshit for my wife all the time. There's a huge gap between sprinkling lion's mane mushroom on your eggs and seeking treatment for my wife's hyperglycemia that put her solidly in the diabetic category. Endocrinology wouldn't treat it because she didn't show elevated A1C, but I had nobody in my wife's corner to explain why A1C isn't a good signal when you're severely anemic and getting transfusions every other week. Google 'hyperglycemia cancer progression' with a 'site:gov' to keep it from NIH and other government agencies. There's a GIANT FUCKING SIGNAL that elevated blood glucose increases cancer progression, but I couldn't find a single doctor to even listen. To them it's all equivalent bullshit. Maybe it's not fear then. Maybe it's apathy. I'm not sure that's better.

Gatsky 7y ago

Not sure about your analysis. I think you are just caught in the gap between personal preference and the goals of the healthcare system. You of course see your preferences as paramount, just as does another person who wants hyperthermic therapy, or another who wants hyperbaric therapy, or another who wants medical support for a 21 day water fast, or their psychiatrist to supervise a psychedelic session etc etc. It isn’t possible for a healthcare system to accommodate all these requests, or to engage with other non-mainstream practitioners who administer these therapies. I make no judgement on the validity of your request. From my point of view, people have been banging on about IV vitamin C therapy in cancer for years but never actually done a properly powered double blind randomised placebo controlled trial to show that it works. We can complain about lack of funding, obstructive medical systems etc, but if some people really think IV vitamin C is the best thing since sliced bread then they would find a way to get the trial done.

ksaun 7y ago
When the expected outcome from receiving standard of care treatment is the death of you or a loved one (which is sometimes the case with cancer), then you may have a higher tolerance for risk than the healthcare system.
- asdff 7y ago
  It goes the other way too. Steve Jobs would still be alive if he didn't eschew his doctor's advice and dip into alternative medicine that he truly believed was the correct solution, and he is not a dumb man.
  - jcims 7y ago
    Who cares, it was his option to pursue. Everyone's free to not take treatment regardless of the potential benefit. Hell you can go to the store and buy cigarettes. However, if you wish to avail yourself of a treatment that isn't standard of care, you're going to have a bad time unless you can find a clinical trial and magically pass both the inclusion and exclusion criteria.
  - 7y ago

arkades 7y ago

Living on the other side of that table, and living in the rooms where docs sit and shoot the shit after such patient encounters, and as someone with a debilitating chronic illness that people love to spout bullshit alternative medicine theories and treatments for, I'm going to go ahead and say your conclusion is both self-serving and wrong. Self-serving because, naturally, the reason that your requests are met with poor regard isn't because there's something wrong with the request, but because something is wrong with the person receiving it. But that's okay; that's the nature of human opinion and subjectivity. You can accuse me of the same, of course - oh, and will. I'm sure this thread will go from Zero to Malpractice in 6.4 seconds. But wrong: You're going to ignore this sentence, but dear god, do I want to burn it into your eyeballs, and the eyeballs of every person reading this: I care. The vast majority of my colleagues care. The vast majority of nurses care. The vast majority of everyone you meet in the hospital cares. They've been there, either themselves, or with a loved one; have been there in the past, or are there now, whether or not they disclose that to you. They give a shit. When we work with someone that is suffering and dying, we care. We hurt. And when, god help us, there's a chance we can actually help and reduce that suffering, be it for the patient or their family, and they take that away from us, we hate them a little. We hate them for making us care, and making us watch and experience and share this suffering when maybe we didn't have to. When a patient says, "You know, it's really important to us that we explore (dubious option X)", it puts up our radar for "oh fuck, this is going to suck." And the more the patient goes down that road, the more we know they're going to veer away from care that's at least have some evidentiary basis to support it working, the more we know we have to go down the fucking drain with them. Not that long ago we had a lady on our IM service who'd had a promptly diagnosed, treatable, resectable local cancer... 18 months ago. 18 months of quack bullshit later, she came in to us because of the severity of her constipation, because that cancer arose near her intestines, and had now matted and infiltrated them. She and her family were proof to all conversations regarding reality: she just needed IV nutrition of the appropriate sort, because the problem wasn't that the cancer had utterly invaded her GI tract, it was that she needed the right vitamins! Our nutritionist couldn't come up with the miracle combination of IV nutrition for her, because she kept deteriorating (of course she did.) The family wouldn't allow painkillers, because those worsen constipation, and of course, they refused to acknowledge this constipation was because of her rampant cancer they opted to leave untreated, not because of some magic nutritional deficiency. Which means no opiates - because any minute now we're going to cure that constipation with the magic vitamin. So we had to listen to her scream, then moan, then quietly writhe. For days. While the family insisted we just find the right vitamin. Until the family insisted we try spoon-feeding her, because there just isn't the right IV feed for her. We refused. They fed her themselves. This lady who hasn't passed stool in two-odd weeks promptly vomited, aspirated, and within a few hours was in the ICU for a chemical pneumonitis. We got to watch her die. We got to visit every-day. We got to try to gladhand the family and give them bland cliches because we didn't want them to hurt more. We didn't want to rub it in that they killed their mother. But we got to watch it. In detail. I had the dismal, terrible pleasure of pronouncing her dead. I'm not afraid of the terribly scary management of a vitamin C infusion in a terminal patient. I'm hurt. I'm pained. I suffer every time I have to watch preventable misery and death because a patient and/or their loved one's are busy chasing Google MD's endless font of nonsense. And because I'm not a goddamned robot, I dislike suffering, and those people that force me through more. Surprisingly, doctors take a lot of solace in "we did what we could for her. We made it as painless as possible. We gave her as many days as we could." That means a lot. And when it's taken away from us, holy shit, do we hate it. This was pretty stream-of-consciousness. I'm not editing it, and I'm not coming back to it, so if anyone bothers responding, know it's not for me.

refurb 7y ago

The reason why doctor's tread a careful line of "standard of care" is because there is evidence to back it up. Trying random things that "might work" is a great way to get hit with a malpractice case.

nradov 7y ago

I don't believe you are capable of accurately assessing whether another person is experiencing fear versus some other emotion. Everyone likes to believe they're good at reading others but hardly anyone can do so reliably.

jcims 7y ago
I’d wholeheartedly agree. There are definitely some docs with shark eyes that haven’t felt anything in a looong time. But we were at a research hospital and young docs are the norm.

schmichael 7y ago

I'm very sorry to hear about your partner's cancer, and I can't imagine what you've been through. That being said I think you're making a huge unfounded leap in interpreting their responses. What you're describing sounds like me on a customer support call when presented with evidence that my diagnosis of a software issue was wrong. My mind races, goes back to first principles (small words), I sit up and dial up my professionalism. I also can't help but wonder as to the reliability of the customer. I'm the expert in my software! Who's more likely to be wrong? It's a tough situation in software, I literally cannot imagine what it's like when someone's life is on the line. Best wishes, and I hope you get the best medical care possible.

jcims 7y ago
I've been around people for nearly 50 years and spent the first 5-6 years of my career doing phone support for a laptop firm and then some fairly advanced text translation software for EDI. I know exactly what you're describing, I've done it many times myself. Please just trust me when I say that's not it. I could be wrong in my assessment, sure, but they are definitely not thinking about how to incorporate anything I suggest into treatment. It's pure 'get this guy to shut up'. Thank you for the kind wishes.

exclusiv 7y ago

Thank you for this incredibly poetic comment. A lot of wisdom here. I wish I could write like this!