Doctors communicating with patients -what's the right amount of information?
I was a little annoyed at my doctor's office recently - just a little. I was having some odd symptoms and, being a little neurotic, I had done a bunch of reading on Graves disease (which my sister had) and perimenopause and went in to have my hormones checked. My doctor, being an agreeable person, agreed with me that these were reasonable things to look at and sent me away with the appropriate lab slip (or maybe they drew the blood themselves, I can't remember now). He finished up with "No news is good news," which is what he always says - it means I don't have to call in, because if the test is negative, they won't call, but if it's positive, they will.
Now, I never trust that system to work, so I always call anyway. But this time, the person who answered the phone, after pulling out my chart, said "Everything's fine." I had to prompt her for more information, and for that, she had to ask the tech to call me with the actual results. The tech then said, "Everything's fine; the tests were negative."
Negative for...? Actually, the tests I had were supposed to report a hormone level that was part of a range. Presumably, different parts of the range had different meanings. I said, "Can you be a little more specific?"
"Your thyroid hormones were normal, and your estrogen levels were normal." Normal for whom? In what context? Any uncertainty? I gave up and made another doctor's appointment. Not having met my deductible for the year, I was paying good money for those tests. The sum of what I got from the doc was more reassurance that everything was fine. Maybe I was overintellectualizing what to him were just negative results, but never did anyone offer to go over the actual numbers with me, and their meaning in terms of the possible range of values, and whether there was any uncertainty in the tests. I asked a few more questions about perimenopause, and got a couple of useful answers, but, in addition, there was still no further light shed on my symptoms, and in the end they mostly went away and I decided not to worry about it. So I didn't have Graves disease, nor was I perimenopausal, at least according to those tests.
So even though I was, in the end, somewhat reassured, sometimes I'd just like to understand what's going on, and possibly armed with information to make choices. Is that unreasonable?
In this month's issue of GoodBehavior, Jessie Gruman, Executive Director of the Center for the Advancement of Health addresses this very topic.
In this new world of "personal responsibility" and perplexing health care choices, the accurate communication of the risk of treatments and tests is going to be as important as any new vaccine or miracle drug. Even if message-communication improves, message-comprehension may not.Was my doctor assuming I wouldn't understand the complexity of a message, did he feel inadequate to try to explain, did he not have enough information (or knowledge) himself, was he pressed for time?
As a patient, I need to have a choice between knowing the bare minimum and then asking my doctor to recommend an action and having the full range of trade-offs out on the table and subject to discussion until I am comfortable with my choice.
Ultimately it's a tricky dance between two humans. Finding the right balance is hard. I don't want to have to change doctors every time someone doesn't communicate quite the way I'd like, but I also don't want to have to always push, repeatedly, to get the information I need. And to be honest I don't always know what I need to know.
posted by Emily DeVoto, Ph.D., @ 12/06/2006 02:15:00 PM
12 Comments:
When I think about it, most of what I know about taking care of my health did not come from a doctor or anyone in the medical profession.
You should be annoyed.I never thought the best way to go with lab test reports was to tell the patient he/she would hear if there was a problem.There are too many ways lab test results may not get to the physcian's eye.We typically would send copies of lab tests along with a written note explaining results if necessary and making other comments.We would include copies of imaging studies and EKGs as well.Saying "everything is OK" was the norm forty years ago but today patient's expectations are different and patients need to be supplied with their test results with an explanation of they mean.
I would find that very annoying, too. There certainly is a wide range of communication styles among docs, but too many of them use the old-style, authoritarian approach. I really would keep changing doctors until I found one who was responsive, informative and on top of things.
Many times, you can ask to receive a copy of the lab results, and I've found this is the best way to stay informed.
I agree with the other posters - you're right to be annoyed. In fact I'll go futher - why not find a doctor who will review your results with you? My doctor does this with me routinely. I happen to be fairly knowledgeable about this stuff - lots of doctors in my family although I'm not one myself - so I understand the basics of most of the tests, which speeds up the process. But when I asked my doctor what he does with other, less informed patients, he said he does the same thing, it just takes a bit more time.
I always ask for my test results and I keep them for my own records. You don't want to know what a hassle it is to have to collect all of your previous lab reports later if you need them.
On second thought, don't ask the staff - tell them. One your way out, tell them you need a copy of your labs. *smile* And wait patiently.
Hormone lab reports are not just a matter of values in range = negative. Hormones work on a negative feedback loop and it takes knowledge of that system to read their values & interpret how your system is functioning.
I've been hypothyroid since my teen years, too bad it was secondary hypothyroidism and none of my doctors could read the results of my labs correctly, classic case results for secondary hypothyroid. An endocrinologist and hormone specialist in Los Angeles knew what was wrong immediately and verified it with labs.
It's a dog eat dog world. Do you think any of my former doctors care one bit that I was misdiagnosed and robbed blind of 'quality of life', living in a severe hypo state for a decade or two? Nah. They haven't got a clue and yesterday they probably just told a patient just like you "everything is fine".
docs are very idiosyncratic about divulging numbers..My pulmonologist, for instance, is great about showing me, and explaining, lab results. He knows i'm an "educated layman" in re medicine who's worked in repro epi for decades..so he enjoys explaining what's going on and his (admitted) guesses/hypothoses about my particular case. But he's an exception..I don't pretend that i know in advance what all the details "mean"..but i do know stats and some VERY basic medical concepts so it works out well. He also likes teaching, i think.
I disagree with the rest of you. I don't think results squarely in the normal range need to be reported to the patient. Needless worry and anxiety are a real concern. Also, test results vary with normal physiological variation and with predictable uncertainties (random error) in clinical assays. If you want to read them in your chart, fine, but I think reading the numbers out over the phone will do more harm than good.
Remember that hypochondria is the most expensive medical condition to treat.
Passing along an idea: I teach a Health Care Communication Skills class, and one idea for doctors is to think about information as a "drug", because information is a therapeutic agent. So, what is the the right "dosage" of facts to give a patient. Too little is ineffective; too much can be over-powering; and the right way of "administering" it (by words, in writing, with pictures, etc) is critical.
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I always ask for a copy of my lab tests. I don't want a paternalistic medical person telling me everything is normal. I want to see and understand the numbers for myself. I'm the customer and I'm paying for the tests.
As an integrative practitioner, I am more concerned about the fact that your symptoms have not been addressed. In a perimenopausal woman with symptoms suggesting underactive thyroid, I would be looking at salivary progesterone and estrogens, and would expect to find the progesterone too low to adquately balance the estrogens. This in turn can contribute to subclinical hypothryroidism - I would want to see thryoid hormone levels at mid-range or above to exclude this. I often use Broda Barnes basal body temperature assessment in a woman whose symptoms suggest underactive thryoid but the blood test appears normal. Have you read any of Dr John Lee's books?
Thanks for all the good comments. Nutrprofe's comment about hypochondria hit home, since I'm definitely guilty of consuming my share of health care for that reason, but in such cases more information is better than less. If I didn't want to be bothered with the anxiety, I wouldn't go to the doc in the first place. Plus, if it's a complicated issue, and some questions are still unanswered by a normal test, I'd like to know that, and have the opportunity to think with the doc a little bit beyond "everything's fine." That's all.
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