Doctor D's post on Mystery Illnesses last week was pretty controversial. Some readers were concerned that D suggested we should sometimes give up looking for answers after a thorough work-up is negative. An intelligent reader remarked that Doctor D over-simplified because he didn't define what a thorough work up is. Excellent point:
What is a proper work-up?
Of course it's tricky to define because a good work-up varies significantly depending on the patient, the symptoms, and the situation. It would be tedious to go into the details of any specific work-up. Instead D will give you a simple answer:
The correct work-up is an investigation of your symptoms that is more likely to benefit you than harm you.
Running tests on a person is not harmless. We stick you with needles. We zap you with radiation. We inject stuff into you. Then we find abnormalities that require more tests. Don't get me wrong, this type of thing is often helpful and even life-saving, but every time we start down this path we risk hurting you. Even perfectly correct work-ups carry real risks and harm real people.
We have worked very hard to decrease these risks. In some ways the medical work-up is a victim of its own success: we have decreased the risk so much that we begin to assume it's harmless. Health care does a lot more good than harm, so we forget about the harm all together.
You can safely carry a weapon if you respect the danger it presents, but you'll end up shooting yourself in the foot if we forget it's a weapon at all.
Doctor D has seen enough people hurt by medical care that he has a healthy respect for the danger he puts you in every time he orders a test or a medicine. Unfortunately, most patients have little or no concept of the dangers posed by health care. Even patients who distrust doctors trust our machines and laboratories.
There is a very old medical term called, Benign Neglect. It means that if the symptoms are not likely dangerous and the best course of action is just to watch patiently without doing anything. Doctor D has never heard a physician younger than 70 use this term.
Today's doctors are men (and women) of action. We have the tenancy to work up everything just because we can—because we are scientists and want to get to the bottom of things. Then the legal system reinforces this behavior. Doctors are frequently sued for not doing enough, but almost never sued for over-testing or over-treating although these things are also dangerous. We protect ourselves legally and keep our patients happy by ordering big work-ups for every symptom. More is always better!
Consequently US healthcare is the most expensive in the world, and Americans get more tests and scans than anyone else, but we aren't any healthier or live any longer. In fact, the opposite is true. We forget that healthcare should be used with caution.
Seeing a doctor about your symptoms is like hiring a trigger-happy bodyguard. It might be worth it if you're life is threatened, but if you life in a safe neighborhood the jumpy security might be more likely to accidentally shoot you than save you.
Before your doctor goes nuts with a big work up you may want to ask, "Do you think these symptoms represent a dangerous disease or is it safer to ignore them?" Some symptoms need the big work-up and some need nothing at all.
If you come to me with an uncomfortable runny nose and low grade fever for a couple days you probably won't get any more work-up than a careful physical exam. If I don't find a problem I'll say "It's probably a virus" and advise you to ignore it. I could order a CT scan of your head, but that radiation that is more likely to harm you than provide any useful answers.
If you come to Doctor D with "red flag" symptoms like significant unexplained weight loss he'll probably keep testing until he finds an answer—but not every situation:
Doctor D once had a 97 year old that came to him with unexplained weight loss and weakness. Doctor D said, "This could be a lot of things, many of which are serious, but at your age aggressively finding and treating the serious ones are more likely to cause you pain than prolong your life. My advice is a few basic blood tests to rule out things that would be easy to treat. If that doesn't show anything then let's just treat the symptom with high-calorie shakes." The patient agreed and we did a tiny work-up that gave no answers. We treated the symptoms and he lived comfortably for several more years before dying in his sleep. I have no idea what finally killed him, and I really don't mind not knowing.
Your work-up is a personal thing being done to your body and it should reflect your values.
Your body is yours and your doctor works on it for you. You are supposedly directing the care. Unfortunately, you don't always get to exercise your authority in the situation because your doctor is usually responding to what he or she guesses you want. First your doctor comes up with a large work-up because they assume you want it. Who wouldn't want lots of tests, right? If by chance the work up is inconclusive your doctor (or doctors) decide you must want it stopped, because further testing is risky without offering a lot of expected benefit (since most scary diagnoses have already been ruled out). Then if you say you want to keep going with the work-up the doctor suspects you are neurotic since you are acting against your own best interest.
A thorough work-up is complex, but your busy doctor may not take the time to discuss it. But the good news is you are in charge and don't even know it.
It is important for you to take charge of your work-up. Tell your doctor your values. Say what you want from your work-up. Ask about the risks and the benefits of tests. Remember the doctor is a dangerous ally, and communication is the safest way to take control of your healthcare.
The correct work-up is an investigation of your symptoms that is more likely to benefit you than harm you.
Work-Ups Are Dangerous
Okay, let's take a moment to consider a well-known but poorly-understood fact: doctors hurt people. I'm not talking about just bad doctors here, I'm talking about good responsible doctors. Yes, I know the whole motto of our profession is "First, do no harm" but doctors have to be reminded of that because the tools of our trade are inherently dangerous.
Running tests on a person is not harmless. We stick you with needles. We zap you with radiation. We inject stuff into you. Then we find abnormalities that require more tests. Don't get me wrong, this type of thing is often helpful and even life-saving, but every time we start down this path we risk hurting you. Even perfectly correct work-ups carry real risks and harm real people.We have worked very hard to decrease these risks. In some ways the medical work-up is a victim of its own success: we have decreased the risk so much that we begin to assume it's harmless. Health care does a lot more good than harm, so we forget about the harm all together.
You can safely carry a weapon if you respect the danger it presents, but you'll end up shooting yourself in the foot if we forget it's a weapon at all.
Doctor D has seen enough people hurt by medical care that he has a healthy respect for the danger he puts you in every time he orders a test or a medicine. Unfortunately, most patients have little or no concept of the dangers posed by health care. Even patients who distrust doctors trust our machines and laboratories.
Work-up First—Ask Questions Later
When faced with illness there is a natural urge to do something! You feel rotten and you go to a doctor for a solution. You expect the doctor will do something, and if that doesn't work the doctor will do even more.There is a very old medical term called, Benign Neglect. It means that if the symptoms are not likely dangerous and the best course of action is just to watch patiently without doing anything. Doctor D has never heard a physician younger than 70 use this term.
Today's doctors are men (and women) of action. We have the tenancy to work up everything just because we can—because we are scientists and want to get to the bottom of things. Then the legal system reinforces this behavior. Doctors are frequently sued for not doing enough, but almost never sued for over-testing or over-treating although these things are also dangerous. We protect ourselves legally and keep our patients happy by ordering big work-ups for every symptom. More is always better!
Consequently US healthcare is the most expensive in the world, and Americans get more tests and scans than anyone else, but we aren't any healthier or live any longer. In fact, the opposite is true. We forget that healthcare should be used with caution.
The Proper Work-Up
Diagnosis is the heart of medicine. You come to Doctor D sick and he will do his best to give you a good answer. Keeping you safe, however, is more important than giving you answers, and no doctor should forget that our first duty is to "do no harm."Seeing a doctor about your symptoms is like hiring a trigger-happy bodyguard. It might be worth it if you're life is threatened, but if you life in a safe neighborhood the jumpy security might be more likely to accidentally shoot you than save you.
Before your doctor goes nuts with a big work up you may want to ask, "Do you think these symptoms represent a dangerous disease or is it safer to ignore them?" Some symptoms need the big work-up and some need nothing at all.
If you come to me with an uncomfortable runny nose and low grade fever for a couple days you probably won't get any more work-up than a careful physical exam. If I don't find a problem I'll say "It's probably a virus" and advise you to ignore it. I could order a CT scan of your head, but that radiation that is more likely to harm you than provide any useful answers.
If you come to Doctor D with "red flag" symptoms like significant unexplained weight loss he'll probably keep testing until he finds an answer—but not every situation:
Doctor D once had a 97 year old that came to him with unexplained weight loss and weakness. Doctor D said, "This could be a lot of things, many of which are serious, but at your age aggressively finding and treating the serious ones are more likely to cause you pain than prolong your life. My advice is a few basic blood tests to rule out things that would be easy to treat. If that doesn't show anything then let's just treat the symptom with high-calorie shakes." The patient agreed and we did a tiny work-up that gave no answers. We treated the symptoms and he lived comfortably for several more years before dying in his sleep. I have no idea what finally killed him, and I really don't mind not knowing.
You Are The Boss
The harms or benefits of a work-up can extend beyond just the physical effects. Many comments on the last post mentioned the amount of personal reassurance people felt upon finding out the name of an illness. Personal values and perspectives on disease, diagnosis, and medical care vary drastically between people. Some hate the anxiety and discomfort of a work-up far more than their illness alone. Some hate the uncertainty of not knowing their disease and will undergo any painful or risk test just to find an answer.
Your work-up is a personal thing being done to your body and it should reflect your values.Your body is yours and your doctor works on it for you. You are supposedly directing the care. Unfortunately, you don't always get to exercise your authority in the situation because your doctor is usually responding to what he or she guesses you want. First your doctor comes up with a large work-up because they assume you want it. Who wouldn't want lots of tests, right? If by chance the work up is inconclusive your doctor (or doctors) decide you must want it stopped, because further testing is risky without offering a lot of expected benefit (since most scary diagnoses have already been ruled out). Then if you say you want to keep going with the work-up the doctor suspects you are neurotic since you are acting against your own best interest.
A thorough work-up is complex, but your busy doctor may not take the time to discuss it. But the good news is you are in charge and don't even know it.
It is important for you to take charge of your work-up. Tell your doctor your values. Say what you want from your work-up. Ask about the risks and the benefits of tests. Remember the doctor is a dangerous ally, and communication is the safest way to take control of your healthcare.
In next week's post Dr. D will give practical tips for working with a doctor to manage your work-up.
What do you think? Do you think much about the risk of medical testing? Does your physician ever discuss risks of work-up? How would do you think your personal values would affect your approach to a work-up? Doctor D loves hearing your stories and thoughts in the comments.
17 comments:
I just had a doctor make this very point - I began taking Tamoxifen 3 months ago as chemoprevention because of high family risk. When I asked the oncologist if there was anything in particular my GP needed to do or be aware of in my yearly gyne exam, he said to tell him not to order a transvaginal ultrasound without a good reason. He said too many docs order them routinely "just in case", find out the endometrial lining is thickened because of the tamoxifen, and then want to do a biopsy. Eventually, after repeated unnecessary biopsies, some women end up with a perforated uterus. Excellent advice, seconded by my GP who said the oncologist sounded very sensible!
Another excellent post, Doctor D. Once again, you have given me very useful advice. As I prepare for my next big appointment with specialist #4, I will make a point to share my values. In my case, it includes mny things including my safety, my long-term concerns about my mobility and stamina; the impact of my 13 er surgeries and my hearing as well as my concerns from a genetic POV. I feel I owe it to my child to get more info so I can protect him as a child and inform him for when he makes decisions in his adult life.
Thank you for giving me the tools to empower myself to get the type of care I didn't even know I wanted.
And sorry for the typos. It's lunch break. :)
Proof positive that work-ups (and other procedures) are dangerous Wide variations in central-line infection rates in Detroit hospitals, report says
http://bit.ly/bLwei6
Whenever someone was spazzy about not getting a huge work-up in the ER for something probably not life-threatening like achy all over, nausea, whatever...my canned response was something like, "You got the best test in the world...a doctor with ___ years of experience and training who examined you."
Great post Dr D! Gives me some fodder for the next time I'm feeling uneasy not working something up extensively when I suspect it's transient and without red flags. I'm pretty miserly with tests in general because my basic rule of thumb is: "if it won't change the management, don't do the test.". This especially applies with whiplash, low back pain, palliative patients, etc.
As someone who has a rare trachea defect, and that my doctors can't decide whether it's causing my problem or not (and really I can't blame them because sometimes I can't make up my mind about what I think either). I want two things: to know that they aren't missing something that is major (since I seem to have a lot of breathing problems), and 2) to have the best quality of life possible
Oh and it would be nice to have a diagnosis/ or at least explain what I have to others so that I can you know, not be wedded to one doctor for life and also so that I can explain stuff at work shortly.
An interesting study for this conversation:
http://bit.ly/awtX3G
Only half of patients with fatigue get a diagnosis after a year of work-up. The number of serious illnesses found were fairly low.
Interesting question: How aggressive should we be in working up isolated complaints of fatigue?
Most doctors work it up to the hilt because it can very rarely be a sign of something scary like cancer--but usually it isn't.
I've had such a bewildering variety of symptoms - a large collection of them brought on by a medication - that I've had multiple in-depth work-ups.
My current GP tends to believe in low-impact treatment of issues first, and if that doesn't work, we do more.
I regularly have to have blood drawn for my thyroid (which has nodules and is thus unpredictable about output), so we'll usually do any other blood tests he thinks would be useful when I'm going to have blood drawn anyways.
As far as isolated complaints of fatigue, my instinct would be to try treating it through low impact means first - improve sleep hygiene, possibly make use of a lightbox, look at improving diet, so on. If none of that has any impact, I'd say that at that point, you think about how severe the symptom is, how much the patient wants an answer, and whether you can treat it if you have an answer. It seems to me that if the low impact means fail, you run blood tests for auto-immune disorders and cancer and whatnot, and if that doesn't show anything, you have to make a value judgment on whether more extensive testing will supply an answer.
For me, the work-up that finally supplied the answer wasn't dangerous but it was painful. Having your joints worked up when you have a collagen disorder means having the majority of your joints pressed to their maximum extension (uncomfortable) and strength tests on arms and legs (which is painful afterwards for me). Having said that, it was a work-up that gave a definitive answer on what I believed was the most likely cause of my symptoms, so I thought it was worth it, even though my then-GP believed it was a waste of time and money. As it turned out, I was right.
As a veterinarian (and not quite 40-year-old!) I use the term "benign neglect" all the time. I think part of it has to do with funding. When you can't afford the diagnostics, you feel better about not doing them. When you have a third party paying for all the tests you would consider doing, it's a lot easier to just go ahead and do them because hey, it's paid for, and if you do NOT do them, and then you miss something, it's your ass on the line. In my practice, though, I am more often dealing with people who breathe a sigh of relief when I recommend benign neglect than I am dealing with people who say "but doctor, why don't you do test A, B, and C just to be sure," because they mostly don't have a third party lined up to pay for those tests. Of course, if I think the tests are indicated I recommend them in any case but often they don't get run regardless.
I think benign neglect is a great way to go because the majority of illnesses, I've heard, will just go away on their own. Those that don't go away can then get the big workup.
My doc is big into tests, and I appreciate the need/desire for empircal evidence and diagnosis by exclusion. I'm in an HMO, so labs are covered, fortunately, and cost, while incresing, is not that much of a concern to me at this point.
At the same time, however, if, through those tests, we discovered something big but relatively and currently benign (or at least something that will likely be quiet for the forseeable future), with no treatment available and no appreciable effect on my overall health for a number of years, then I'd rather not discover that this early.
If knowing about that illness this early would not change treatment or the doctor's approach to it, then all that discovery will likely impact is the cost of my health insurance or the creation of some kind of pre-existing condition that would impact my later health coverage.
Still--I guess that there's no way to know that the test will be positive until it is.
I liked your post very much. I found it very interesting that you wrote "you are the boss" and am eager to read your next post with practical approaches on this topic.
Excellent post. I've known for years that I'm the boss and my docs work for me, and I nearly fired one eight months into my first pregnancy. A letter took care of the issue and it was MUCH better from there on out.
However, patients are NOT the boss as much as some think. I would have preferred to have my ovaries taken out with the hysterectomy, but the surgeon insisted I was "too young." Well, if I was a tree, maybe. Now I'm 90% certain that one ovary needs to be taken out, my GP agrees, but the surgeons say, "Get a second opinion." So I am left in significant pain while they dilly-dally. So, while it is true that the patient is the boss sometimes, it isn't always true--and it's not always true that the primary care physician is in charge either.
Im about to go threw losing all top teeth-The Doctors said they would put me to sleep-That I would Be Breathing on my on-Hum-How If I can Breath on on my own?
The extreme examples of a runny nose and a 97 year old not benefiting from in depth investigation just doesn't qualify as "Mystery Illness" in my opinion.
People with chronic, suffering, debilitating undiagnosed illnesses would be who I'd consider suffering from "Mystery Illnesses". Being on of those people. I'm at the point where I'm ready to donate my body to research and let them do anything they want to find out what is wrong with me.
There comes a point when you can no longer function normally, almost don't feel like being here anymore because your quality of life has diminished so much that the risks of any tests to possibly diagnose and get your life back are totally worth it. The undiagnosed illness and it's effects on your life are more injurious. I'll trade.
i personally dont blame drs. they tried most everything they can,i just wish they would stop saying its anxiety....at this point with them saying it, is making me worse. knowing that this cond. is not just anxiety but causing anxiety........ muscle stiffness, inflammation in spine, vision not right, weird headache, loss of balance . nervous sytem failure. unstable blood pressure, ect. just been so long getting so frustrated, 10 yrs. also was diagnosed with cancer. when they said i had anxiety. so please they should put a person in hosp. until they find problem. it would cost less money than to let this go on for yrs. emergency rooms, dr. after dr. many test. ect. find the problem . some people can handle what dr. tells them. many people i know who listened to wrong diagnoses, died. including my mom. a person knows themself better than dr. but sometimes its hard to describe symptoms. an drs.say too many symptoms ,,,its in your head, anxiety, panic, mental illness. ... i find this apaulling. in todays world. many problems can cause these mental problems. so take the time stop feeding drugs to patients without a true diagnoses ,,, thats how people die.........
I am a 37 year old woman, Mother of 3. I am desperate for help! I have been going back and forth to the doctors now for 1 year with lots of health problems, tummy swelling and bad depression, but most of all with rapid weight gain to the point I don't look like me anymore. The doctor can see there is something wrong with me but has sent me for so many tests and coming up with nothing. I just stepped on the scales and have gain another half a stone in 2 weeks even though I just had to do a diet for a few days and completely be cleansed for a colonoscopy and gastroscopy which I had on Monday, so you would of thought I would of dropped a few pounds, not gained even more. It’s painful to say this but I've now gained 5 stone in a year and I have to get a new pair of jeans every few weeks and some big baggy t shirts. I don't want to be seen like this. Last summer I was in a size 12 and my ideal weight and now I am struggling to fasten an 18. What is wrong? I’ve changed nothing in my diet but do less exercise due to me being unwell with terrible back ache and head pains in the back of my head all the time. I’ve come off all meds in case that’s doing it but I’m still gaining. I look repulsive and I can’t stop it. What shell I do? I feel so unwell and don’t know what to do. My mum went back and forth with tests after test but in later years than me and it ended with death at 56.
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