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Doctors-Why Are They Like This?


HopeSprings

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Can we talk about this for a minute because it's really bugging me. I have seen countless Doctors (literally lost count) over the years trying to figure out what's wrong with me. It tooks YEARS to get the POTS diagnosis and another 4 to get the small fiber neuropathy diagnosis. I thought I finally made some headway, but now I find myself at another dead end. Why is it like pulling teeth to get them interested in figuring out what's going on? I have yet to find one who will dedicate themselves to trying to figure this out. They'll run a few blood tests and when it's normal you never get a plan B. Here we are asking eachother all these medical questions, trying unravel mystery after mystery, trying to sort through all the unusual symptoms - when we should be able to take these questions to our Doctors. I'm ok with them not having the answers (maybe the answers don't exist yet), but show a little concern, interest, curiosity, enthusiasm -- at least TRY? I'm not a Doctor - I don't have the medical or scientific background to be able to do this on my own and I'm at a disadvantage because my abiltiy to read and absorb information is severely limited due to my CONDITION. I just wish I could find one who won't forget about me two seconds after I leave the office and will become invested in figuring out what's wrong and getting me well. Why don't they care? Have you guys had a similar experience? Why do you think they're like this?

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I have put the back of my hand to my forehead and lamented on here before about that very issue! :)

I run into the same thing. Same first visits, where they seem concerned and by visit #2, no game plan. I even wondered if there was a place online that doctors can look up patients, like on insurance secure sites or something, and see that I've been to a million doctors and then decide they don't want to fool with me. It is just like night and day from visit #1 to visit #2.

I think there are some cases where they ought to let PhD researchers see a few patients, not for treating, but working with a physician. I would think a PhD has more brain to figure this out. MDs are just too busy.

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Yeah Naomi I can totally relate....fired my GP after 4 yrs of listening to his crap that it was stress! stress doesnt turn your legs blue.....duh! I honestly think most Dr's cant be bothered (except for a relative few... I have finally lucked out with a couple) because...... 1. they are too busy/ preoccupied to really care 2. their patient care load is way too high and they just dont have the time to invest 3. they really dont know how to fix you and cant admit it so they just brush you off 4. they are in it more for monetary gain (I have seen this first hand as I have worked with many dr;s over the years) I hate to sound that negative about Dr's ....its sad but I really do think its true......if you dont fit into a neat little box for them they cant be bothered..... I still deal with this everytime I see a new Dr whether a specialist or ER...they constantly (in a very smarmy tone) ask if POTS.MCAD is a VALID diagnosis...wink, wink...because I have never heard of it......mmmmmm really??? WOW how ignorant are Dr's that just because they havent heard of an illness it means its not valid! didnt know that they are all well versed on all new and emerging illnesses at any given time.... I mean no wonder they never have time for us so busy learning :P....... I understand Dr's are only human I would have more respect for them if they would just be honest and say I DONT KNOW rather than make me feel like I'm crazy...... thats my vent :) only my opinion....

Bren

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My childrens cardiologist literally said to me during an appointment suddenly all these POTS symptoms have become cardiologists problems- it's like he doesn't even want to help me! I have noticed that most doctors we go to don't really seem to care or they think it's just anxiety. It's incredibly aggravating when you can't live a normal life and they just send you on your way.

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I totally understand. The sad thing about it is that I thought once I got a diagnosis that was it! I would get some answers and some help but the opposite happened! My family doc told me I was "beyond her expertise" and other docs have just rolled their eyes. My thought is that if I can get on the internet and find out about POTS they can too! Wasn't there some oath that they took to help others?

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It's the way the system is set up. They get paid for popping patients in and out and they only specialize in one thing, where pots involves multiple systems. Sad to think of it as a business, but it's the reality of things. Would be nice to have someone take a personal interest in us, but not holding my breath. They also do deal with hypochondriacs/crazy people, and just assume we are that. It's easier than admitting they are wrong or might not know. The best thing to do is to see a doc that has experience treating other POTS patients, if you can manage to find one.

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UGH!! WOW.. what a topic! If I hear the words "beyond my expertise" one more time I might start screaming. I have heard this from so many doctors in the last six months (at least 10) and THREE were neurologists and one a top cardiologist at a major medical center. Even at Mayo, I got my diagnosis, but don't have a treatment plan that will help me. They labeled me as a "Medical Enigma" (actually put it in my MEDICAL record). They aren't giving up on me but there are no answers yet.

I understand that not all doctors understand our condition, but the ones that don't should have the obligation to review our records and do the bare minimum of research to at least TRY to treat us for whatever reason. Can you really think of any other illnesses where doctors would just write off a patient because they just don't "understand" the condition? Doctors have just as much access to the internet and research as we do, but yet we are the ones doing all the research and trying to find the answers. I have had 6 concussions in just a few months. My cognitive skills have changed and I don't have the ability to retain what I need to be able to interpret a lot of what I read. When I think of the amount of money that these doctors have made on me in the last six months, it is shocking to me at times at the lack of caring, interest, and follow up that I get from some doctors. NO other profession would get away with being paid that amount of money without fully providing the service and providing a satisfying result, right? This is not to say I haven't found good doctors. I am fortunate to have 3. One is at Mayo, my neurologist, but he is very difficult to get in contact with. If I have a question, it is a week before I can talk to him if I am luckly. I have two at my home hospital: One is my Family Practice doctor who pretty much got my P.O.T.S diagnosis dumped in her lap when the cardiologist didn't want to handle it. She had never treated a patient with it and had only heard of it in passing and knew almost nothing about it. To be honest, we learned together after the last several months. My appts. would consist of going over research we both had done and trial and error. She spent a lot of her own time researching and learning. And she was always willing to take my suggestions when I would say "This isn't working so great" or "This sounds like something that may work"... She would always say "Let's give it a try" if we found from a reputable source (usually Dinet) that it was an approved treatment. The other doctor is an electrophysiologist cardiologist who has helped me so much. My family doctor fought with cardiology dept and demanded I have a specialist to see as well and also demanded that it NOT be a regular cardiologist so I see the only EP we have on staff.. and he is amazing. He has never dealt with anyone with my severity but he has been wonderful about getting me into the places I need to go (such as Mayo) and following up with me, keeping tabs on me (he calls me every two weeks at home on my cell).

But other than those two, I could NOT agree with you MORE. Most of the doctors I see want nothing to do with me and take no interest on making me better but just getting me out of their office. I am demanding right now that a written protocol be in place for our ER to have on hand with how to handle a Dysautonomia patient. Usually, when I have had to go in, it has been after a syncopal spell with a head injury so obviously I need stiches/staples but what else???? BP needs to be monitored, heart rate, fluids, blood tests, etc. Right now even ER doctors are clueless with how to deal with me. I had one DR in an ER put 13 staples in my head after a syncopal spell when I split the back of my head open after falling on a floor, so obviously a major head impact. Even though I was unconscious, I can still somehow hear the sound of my head hitting the floor, bouncing, and hitting again. He could hardly see the split because my hair was covered in blood so he just did his best guess. Refused to do a CT scan. Refused to give me fluids. Refused to do my BP. I asked if I could do orthostatics before I went home so I could know how stable I was. No, he refused. He told me "I know what will happen. You will stand up and faint again and get blood all over MY floor." WOW. Just told me that his job is to stabilize me and not to cure me. Did not even check for concussion. In fact, I had been there 10 days before with another lacertion in the head and concussion so I asked them to take to staples out at least. They did that, at least for the most part (although later that afternoon we found that they left 4 in and another 3 were left in my hair because they couldn't find them because my hair was so bloody from that days injury). My husband was so furious that I thought they were going to have an altercation so we left and went to the ER at the hospital at the other end of town. Within 45 minutes, I was admitted in the hospital and stayed there for 5 days. I was never asking him to cure me. I just wanted him to make sure I was safe to go home. Compassion? None. I have to say that some of the doctors I have had the misfortune of dealing with have made me doubt how safe I am at times in their care. That is a scary feeling. SOMEONE needs to make it a priority that this condition is studied more and every hospital has someone who can at least safely stabilize someone in our condition and not look at us like we are crazy when we mention our diagnosis!!!

Jen

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I hear ya! "complex case" "unusual case" "high anxiety" "underlying condition"

After my anaphylaxis I found out it was written on my chart that I was very high anxiety. I couldn't breathe people?!?! Is that not a little unsettling. I guess I was just supposed to chill out and accept death instead of asking for help

So aggravating! More bad experiences that I can even remember.

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Naomi, i think the problem with this is the nature of the health care system. First of all, doctors are paid by insurance companies to do what is within profitable limits. If the insurance companies or doctor's offices weren't making any money, then as per capitalism they would not exist. So you have to remember that a dr's office is there to make money--its a business. And in that mindset, doctors usually have a lot of patients. If you have an HMO they probably have even more. People in that profession can not take their work home with them. If they did, they would go insane--being around sick people isn't easy, and telling people you can't help them is even harder. So, the problem is that there really isn't time for them during their work day to investigate such matters. In addition, companies aren't paying typical doctors to do research, they are paying them to get people in and get them out--hopefully with a prescription so they can make some more money. And in reality, if i have the flu, a broken arm, or an infection this practice works--its only for us rarities that the system doesn't really help. Another thing to consider is that research is done in areas where coming up for a cure is profitable. For all we know, there is a cure to pots, but the makers of florinef and midodrine bought out the patent, so that it would not be available on the market because they can make more off of the other two drugs (this is very conspiracy theorist though :) ) Essentially it comes down to the fact that there is a difference between dr.s and researchers, and unfortunately they coexist sparingly. But, don't be afraid to be frank with your dr's. If you ask them for something and they say "no" ask them why they believe that, and then explain why you believe what you believe--and always make sure that your requests are reasonable by performing research first. I asked my dr. for a small fiber neuropathy test and his response was, "you don't have neuropathy". So, i sent him 5 scientific journal articles regarding the connection between small fiber neuropathy and pots. Another time i had a young "know it all" dr. in the e.r. who insisted that i was wrong and even said mockingly "what do i know, im just the one with a medical degree." My response: "Great, you have a medical degree, what do you know about pots." Dr.: uuuuhhh your heart beats fast Me: wow, did you just look that up on wikipedia? You know nothing about my disease, so don't pretend that you do. (I was admitted soon thereafter). It stinks, but you have to keep fighting them for what you think is right.

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Yet again, nice to know I'm not alone...............

I keep saying that the next time I hear the words,...."So what brings you hear today", or "what can I do for you"..........I'm just going to laugh, stand up, and walk out.

I'm soooo sick of repeating the whole thing over and over.

I really LOVE the Neurologists who immediately say they can't do anything within 5 minutes of being in the room. When you tell them, well I have 6 other doctors who think I need a Neurologist, they ask why??????

They all want to pass the buck to someone else and around and around we go.

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Yes, yes, yes to all of the above. Endless stories of docs who don't care, just want to pass you off to another, collect their outrageous fees and move you along. I've wasted a lot of time, money, tears and emotional turmoil dealing with them.

On the other side, there are the docs who are wonderful, who truly do care (yes I know they are few and far between) and are working in a really unfortunate situation that they don't like either. And, to be fair, we aren't the only ones with conditions that aren't understood. Just yesterday at work I had a patient who was in a coma and on a ventilator for 2 weeks...that none of the docs could explain. And heard of a friend of a co-worker who had "idiopathic" pulmonary fibrosis that required a double lung transplant. ( Frankly the more I work around medicine, the more I realize that we really know very little about the human body and all it's complicated interactions.) There are a LOT of people in hospitals who have conditions that medical science can not explain. I also know my primary care doc usually returns my phone calls at about 8 or 9 pm as he's trying to wind up his day and is frequently in the office on weekends trying to catch up on paperwork. So it's not really a bed of roses for him either.

The system really is broken in so many, many ways. To add to lemons2.... above, I personally think insurance is one of the problems. Since there is a third party involved with so many of us, it's easy for the docs to charge outrageous amounts and we let the insurance companies pay them because it's "not coming out of my pocket" (yeah right). I honestly think that if the doc had to hand you the bill personally for his fees he'd probably find he needed to drop his fees substantially. And if I had to open my purse and pay him directly, I think I'd be MUCH more likely to let him know just what I thought of his services...or lack thereof.... As my husband says...people vote with their feet. You go where you get the service you want and need. Unfortunately with insurance companies in the picture we often go where THEY tell us we can go and get the help that THEY think we should have.

Then there is the other issue in western medicine these days which is the whole "system" type of treatment, i.e. this doctor treats this system (e.g renal, or cardiac, or pulmonary) but doesn't look beyond it to another system and how they interact. They send you to the doctor that treats that "other" system. My husband was seeing out PCP about sleep issues/restless leg syndrome. Our doc said..."well the problem is that particular issue covers several different "specialists/systems" and it's hard to find any one doc who will look at more than one aspect of it." If he thinks THAT covers more than one system, no wonder we can't find anyone to help us when we have symtpoms that cover every blasted "system" in the body!!! Honestly, I saw a neurologist locally who REFUSED to discuss my ANS issues with me, even after I had a diagnosis from one of the big autonomic centers. His response was "this is a cardiovascular issue." So even a NEUROLOGIST sees the autonomic NERVOUS system as a distinct system seperate from the OTHER nervous systems. REALLY???? (Head banging against the wall.)

The idea of an "integrative" doc has always stirred my interest. I'd be thrilled if I could just find one who could "integrate" my digestive tract in with the rest of my body. LOL Or maybe remember that heart and lungs actually need to work TOGETHER and not as separate entities. Can anyone see a big picture here, you docs???

So didn't really answer your question Naomi but I think it's a question with a lot of component parts to it. Not the least of which is that (at least in the past) docs were taught they could NOT not have an answer for a patient and it wasn't ok to say "I don't know" so they had to come up with something and usually that something was "blame the patient" i.e. put it off on the patient as being crazy and not being smart enough to present with the "right" symptoms. (This opinion from my brother who is a doc and states this is how he was trained.)

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I hate doctors so much and they have caused me so much gief with so many bad encounters that have ended in arguments. Now days I have zero tolerance for their arrogance, negligence or rude behaviour, soon as they start giving me grief I take their name down and report them first to the hospital complaints department and then later to the Medical Practioners Board or the Health Services Agency located in my state.

These doctors get payed a good amount of money and its unaccaptable when you have been waiting to see a specialist on the waiting list for weeks / months and you travel a fair distance to get there and pay a reasonable amount of cash and then sit waiting a considerable length of time to see the doctor only to find that he couldn't give a **** about your case and keeps cutting you off when you try to talk, treats you like your suffering from anxiety, acts dismisively or with scepticism and tries to get you out of the consultation room as quickly as possible when you have been waiting ages for that appointment, thats when I put my foot down and tell them what I really think of their behaviour.

Sometimes it ends badly and in argument and other times they give me the respect and level of care I demand and expect from a person working in the public health sector. If they want to waste my time and money and act like a bunch of anti-social, rude **** instead of listening to me and offering to help then I have no hesitation telling them that I refuse to pay for the consultation and that they have chosen the wrong line of job to behave in such a horrible manner.

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I've been thru all this too. For the most part, the er docs I saw were more compassionate

and intelligent than my regular doctors. My regular doctors viewed me as a nuisance

because I couldn't take the drugs they prescribed without serious side effects.

I see an integrative doctor who understands how our systems interact, including

nutrition, but she's

still stumped by my dysautonomia. The upside is that she's very interested in anything

I learn that may help us resolve this piece of the puzzle. And surprises me with what she's

learned recently. She is working to get to the bottom of this. But she still has an office to run

and many other patients who's doctors didn't help them either so I understand how busy she is.

Dr mark hyman wrote an article about the new era of medicine, so this will be the norm someday.

Tc .. D

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I have been through the bad docs too. At one point, about a year into this whole mess, I was so angry I refused to seek any medical help for about 6 months except for my chiropractor. My veteranarians for my pets were actually more caring and reliable than any human doctor I saw. And, I have to say I still think there are a LOT of BAD doctors out there. But, once I changed my view of how I was going to get good helath care, it really changed the quality of care I have been receiving. I pulled on my skills as an operations manager to make this happen and many of these skills revolves around a book called "Crucial Conversations". This book is not an easy read but it has been extremely useful in getting what I need out of doctors (and also figuring out if the doctor in front of me is capable of giving me what I need or expect.) Please don't think I am preaching, I just found a formula for me that has been working to find docs that really care and want to share, in hopes that it may help someone else. Its certainly not fool-proof and I still come across bad docs, I just move on from them faster and with less emotional damage. So, while I would love to vent again, I am going to try to be positive for just a moment (because I have finally got a medical team that I feel will get me back to the best me I can be) and this is how I did it:

1) I started looking at this situation as a business transaction. Because no matter what we, as patients, want it to be, this is the doctors' business, so it IS a business transaction to them. As such, I did what I would do when I outsourced any other project...I started looking for the best service providers for the project. I was willing to weigh current knowledge against willingness to help and learn. Essentially, I started a search for doctors who want to be healers, not money-makers. I felt like healers will search and find answers or solutions, money-makers will take my money and waste my physical and emotional time.

2) I had a crucial conversation with my PCP. I told him I didn't expect him to have the answers but I wanted to know if he believed me and if he was willing to help get me to the right specialists. He got on board. If he hadn't, I was fully ready to let him know he was fired.

3) When I need a referral to a specialist, I ask my current doctors' the following questions:

a) Would you see this doctor?

B) If I was your spouse or child, is this the person you would want trying to figure this out?

c) You know I have an outside of the box problem. Is this doctor an outside of the box thinker?

d) Is this doctor known for having a good beside manner and caring for their patients?

(I am amazed at how much the docs know about each other and how their answers change when I ask these questions. That's right, they have given

me a different name because I asked these questions!!) I also ask more than one of my current docs for names in hopes that they give the same

name...that makes it easy to choose!

4) I show up with all of my records and I have a brief dialogue with the new doctor at the beginning of the 1st appt. about my goals and expectations. They will usually give me a pretty clear picture of whether or not they will be my doctor for a 2nd visit. If they are willing to listen and respond openly to that dialogue, they usually are one of the good guys. The ones that give bad body language and look disgusted that I even brought up having "goals or expectations" have generally not seen me a 2nd time. Again, this is a skill I learned form the book I mentioned. It allows me to not get invested in the docs that aren't going to work out. In fact, I have cut an appt. short based on the response I got from this and went home and found a different specialist. This required more time and patience, but, I ended up with a really great cardio because of it. She's the one that actually dx'ed my POTS and I wouldn't have found her if I had stuck around to be demeaned and demoralized by my 1st attempt at a cardio. He was just mean!

5) I show up to every visit with a written summary of changes, new symptoms, list of my medication/dosages, and my questions (like I would show up to a meeting with a written agenda.) It keeps me organized, relaxed, and ensures I don't forget anything. This, in turn, moves the appt along faster which the doctors seem to like, so they stay more attentive. (What keeps them happy usually keeps me happy.) Plus, if I am having a really bad POTS day, they can read the paper and respond to me without my POTS brain having to try to keep it all straight.

6) I google everything I can about potential new docs. I have found that I have been getting better care from those docs that do research that at least comes close to the reason I am seeing them. I am a little medical puzzle for them to figure out. (Like this new immunologist had a twinkle in his eye when he got my lab work back showing the mystery elevated imflammatory marker. He is a caring doctor, but, he also has a researcher's mind and likes to chase the science. In the end, it benefits me even if I am a guinnea pig.) Plus, there are several free sites that have patient reviews and this has given me some red flags on a few docs.

7) Last and most important, I have to care more than anyone else, and, I have to care about myself before anyone else. If I don't, who am I waiting on to do that for me? No one is going to show up. I have to be my own best advocate. (I learned this from Suze Orman. She was talking about money, but I am pretty sure this applies to my health even more so.) If I am not getting what I need, I need to make a different decision...either change my approach with this doc, or, decide I need to find a different doc. Being assertive and persistent have changed the level of care I receive.

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I am thankful that most of us don't have anything life-threatening. I think mst drs are good until they encounter something they don't know.

And I've often wondered... if this was killing us, would they try a little harder? I think that's part of the problem ... we look ok, we're not in wheelchairs (most of us) and we're likely not going to die from this, so there's no sense of urgency.

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Sadly they can only read the same studies we're reading. There's just not enough answers.

It is reasonable to expect they read what's out there, but for reasons mentioned before they just don't.

We can figure this out though. I have faith in us! The way I've learned how to deal with experimental medicine when you don't have studies that cover exactly what's going on you look for analogous conditions and try to make logical inferences to your own condition. This can actually be quite effective.

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This is something I've thought about from two angles. The patient (obviously), but also as a potential future doctor. I've gotten halfway through the application process - then decided it wasn't the right time - worked in medical research, and now I'm seriously considering applying to med school this year.

Anyway. Because I read so many fantastic and thoughtful points made from the patient's side, I thought I'd step into the doctors shoes for a minute. And I find myself sympathizing with the docs a bit more than I expected to.

Some are jerks, plain and simple. I had an experience with an EP that I posted about a few months ago. I still would like to slap him.

But between insurance companies paying only a fraction of what they are billed and the threat of malpractice suits (where a doctor can be found anywhere from 1% to 100% guilty - but even 1% fault will have them red-flagged as having been convicted of malpractice), the doctors have to protect themselves. Unfortunately. If they could practice without that hanging over them, I think we'd have a better shot at finding docs willing to work with us. Because they wouldn't have to live in fear of us suing them if a drug we suggested they prescribe had some unpleasant side effects.

Cardios and neuros are doing pretty well, financially, but primary care docs don't make a whole lot - not once you factor in malpractice insurance and the loans they're still paying off until they're 40.

Anyway. My point is that the system makes it very difficult for a doctor to 'think outside the box'. Legally, their butts are covered if they follow the standard protocol for treating a specific symptom/disease. But if they stray too far from that and something goes wrong...they could lose everything.

It's like that saying: Don't hate the player, hate the game.

Except for 'players' like that EP I had. We're more than justified in hating doctors like them.

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This is something I've thought about from two angles. The patient (obviously), but also as a potential future doctor. I've gotten halfway through the application process - then decided it wasn't the right time - worked in medical research, and now I'm seriously considering applying to med school this year.

Anyway. Because I read so many fantastic and thoughtful points made from the patient's side, I thought I'd step into the doctors shoes for a minute. And I find myself sympathizing with the docs a bit more than I expected to.

Some are jerks, plain and simple. I had an experience with an EP that I posted about a few months ago. I still would like to slap him.

But between insurance companies paying only a fraction of what they are billed and the threat of malpractice suits (where a doctor can be found anywhere from 1% to 100% guilty - but even 1% fault will have them red-flagged as having been convicted of malpractice), the doctors have to protect themselves. Unfortunately. If they could practice without that hanging over them, I think we'd have a better shot at finding docs willing to work with us. Because they wouldn't have to live in fear of us suing them if a drug we suggested they prescribe had some unpleasant side effects.

Cardios and neuros are doing pretty well, financially, but primary care docs don't make a whole lot - not once you factor in malpractice insurance and the loans they're still paying off until they're 40.

Anyway. My point is that the system makes it very difficult for a doctor to 'think outside the box'. Legally, their butts are covered if they follow the standard protocol for treating a specific symptom/disease. But if they stray too far from that and something goes wrong...they could lose everything.

It's like that saying: Don't hate the player, hate the game.

Except for 'players' like that EP I had. We're more than justified in hating doctors like them.

I understand what you are saying but if a person goes into the medical field truly to help people, shouldn't they have the courage to do what is best for the patient? If doctors stood up to some of these companies then perhaps they could change the system. Their first allegiance should be to there patients not their pocketbooks.

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I understand what you are saying but if a person goes into the medical field truly to help people, shouldn't they have the courage to do what is best for the patient? If doctors stood up to some of these companies then perhaps they could change the system. Their first allegiance should be to there patients not their pocketbooks.

The thing is, they can't be of ANY help to their patients if they lose their license - or if the cost of their malpractice insurance hike and lawyers fees leaves them unable to pay the rent for their office space. Last I checked, the highest malpractice insurance fee was $120,000/year (though that was for OB/GYN, so GPs would be significantly lower - it's still a nice chunk of change). I don't think it's their pocketbooks which are the main concern for a lot of these docs (though it definitely is for some of them). A friend of mine who's in med school right now told me that during orientation, even the med school warned them that if they're there with the goal of making a lot of money they should consider going to business school instead.

There is no good solution here. With the laws as they are, patients are better protected - but gold-digging patients who would sue at the drop of a hat keep the doctors from varying the established protocols, even when a case might warrant it. But if the laws were to change (which, at least in the US, will NEVER happen anyway, what with lobbyists and lawyers having so much influence in government), then we leave the patients open to abuses of bad doctors.

It's frustrating. <_<

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