Feb 8, 2010

Dr. D's Guide To Getting Worked-Up

The last few weeks Doctor D answered questions about work-ups that don't find answers and the proper work-up from a doctor's perspective. All that theoretical stuff is useful but Doctor D figured he'd hook you up with some practical tips:
So you go to your doctor with a problem. You tell the doctor your symptoms, and after examining you the doc shrugs and says, "To really figure out what's making you feel bad we might need to run some tests."
Here's how to handle this...
  • Take part in the decisions being made. Even if your doctor is awesome it is your body on the line.
  • Ask about the risks vs. benefits of each test done.
  • A useful question: "Is this test necessary?" If your doc is quick with a "Yes" or "No" then probably the evidence if overwhelming in favor of following the doc's suggestion, but often the answer is "maybe" and in these situations you want to understand the situation so your values can influence the decision. (Unless you are with one of those docs that never ever says "maybe" or "I don't know" in which case you should really find another doctor)
  • Ask your MD how serious these symptoms typically are for your situation: What is the most likely cause of my symptoms? What is the worst case scenario? (Hint: death is sometimes going to be worst case, which makes the next question more important.) How likely is the worst case scenario? How do most people with these symptoms end up? Are these "red flag" symptoms that must be evaluated.
  • Ask your doctor about the risks of the work-up itself. Some things such as certain blood tests are very low risk, and other tests may be higher. Part of the risk is the test itself, but part of the risk is that aggressive things we often do to follow up on results that are sometimes false positives.
  • Realize that your doctor may not be able to give you hard numbers on the risks of particular work-ups. We are only just beginning to understand how high the risks are for very common tests like mammograms and PSAs we've done on millions of people. We just don't have great data on the exact danger of each work-up, but your MD should be able to give you an educated guess about the risks of a test or series of tests.
  • If a doctor ever tells you any test is "risk free" run the other way. While a lot of tests are very low risk, all of them have some. Even the most safe and simple test runs the risk of misleading false results that put your care in danger. A physician that isn't thinking about the risks they subject you to is someone you don't want guiding your care.
  • Ask your physician how each positive or negative result you get affects the overall picture: Do these results make a concerning disease more or less likely? Do they clarify or confuse the picture? How do these tests change our concern about of my symptoms?
  • Ask about the end-point: Every work-up either produces a diagnosis or a point at which it would be unwise to go on. Ask where that end-point is and what it means to not find an answer with this particular set of symptoms.
  • Ask how certain a diagnosis that results from your work-up is: Sometimes the test results give an answer with a high degree of certainty. Sometimes the results just point us in the right direction and we make an educated guess.
  • Inform your doctor how you feel about the illness and the work-up: Are you more pleased or more worried based on how the work up is going? How much do the symptoms bother you? How much do you need to know the answer? How much risk are you willing to take to get a diagnosis? Your values make a difference.
  • Ask your doctor if he or she needs backup. MDs don't want to let their patients down, so sometimes we act on top of things when we are really in over our heads. In a big work-up for concerning signs and symptoms there is often a point where calling a specialist is the right decision. Let your doctor know that you will still respect him/her if they call in help.
  • Remember: you have the right to a second opinion. Even two very good doctors will likely approach a work-up and its risks/benefits very differently. If you are worried about a work-up that yields no diagnosis then you should get the perspective of another physician. Remember that different approaches don't always reflect a difference in quality of physicians, so don't badmouth the doctor that didn't find the diagnosis.
  • Don't ask your doctor to do something he/she doesn't feel is safe. It is pretty rare for a doctor to bluntly say, "I don't think it is safe to continue." If a doctor says this, listen. For a doctor to go against the grain and stop a work-up he or she must be pretty worried about your safety. If you want to proceed go to another MD who is willing to do it for you. If you can't find any reputable MD willing to do something then that should clue you in that you might be at a wise stopping point for your search.
  • Remember: More tests are not always better. Less tests are not always better. What is better is you and your MD working together to create a reasonable and thorough work-up for you.
What do you think? A lot of healthcare people and patients read this blog--let me know if I missed any important tips. Have any of you ever used these strategies? How did they work? Doctor D loves to hear your thoughts in the comments.

On a side note: Doctor D will be taking a brief sabbatical from blogging for the 40 days of Lent, which means that next week is your last chance to get your question answered before Easter.


Aviva said...

Nooooo! Not 40 whole days without any Dr. D insights!

Seriously, I find your blog both entertaining and informative. So glad I found you via our mutual friend the Queen of Optimism. :-)

Hope you have a good Lent. (Er, is that an appropriate thing to say? Apologies if not. I'm Jewish and never quite learned some of the appropriate greetings ...)

Anonymous said...

This has been an absolutely terrific series on how to understand and negotiate the process of a work-up and diagnosis. I really wish I had had it at hand when I was going through my own work-up for what turned out to be a serious disease. It would have made a big difference. Looking back, I was a little la-de-da and passive, thinking that I had something strange, worth pursuing because it was so painful, but unlikely to be serious because I was a pretty healthy sort in general. It was only when doctor number four had a brief look of panic and murmured that it might be something "dangerous" that I realized it could be something bad. But even then, I didn't quite get how to take more responsibility for getting a coordinated and systematic work-up. There were so many twists and turns, different doctors had such different ideas, and it was easy for me to fall through the cracks just because of seeing numerous doctors, some of whom naturally felt that someone else must in charge.

Well, I did finally get my answer, even if rather late in the game. But Doctor D's advice sounds great for someone still in the process of pursuing a diagnosis.

Albinoblackbear said...

I like the no blogging for Lent idea....hmmmm...

And I agree, when a nurse or doctor never uses the words "maybe" or "I don't know" I am nervous working with them.

Good advice to tell pts to run for the hills if they never hear those words...

Wren said...

Excellent post and very good information, Dr. D. I do so enjoy reading your blog, though, have you give it up for Lent is making me itchy. It means that I'm giving YOU up for Lent, too! I'm not Catholic (or anything, actually) but perhaps this will give me a feel for it, eh? Enjoy the break -- I'm looking forward to your return!

Doctor D said...

Lent doesn't start till February 17th so there are still a couple posts to come.

Actually Doctor D isn't Catholic either. He is Christian but his tradition doesn't really do much with Lent. He just liked the idea of withdrawing from things we enjoy to focus on important things.

Don't say goodbye yet. D still has a week to hang out here before his sabbatical.

Anonymous said...

Really good advice...I usually just go along for the ride when it comes to my health care, I didn't think Drs wanted patients who were involved and asked a lot of questions. I'll be making some changes.
My question is, how do we know what is relevant to mention? There may be a shopping list of symptoms, but the sign on the door says "please limit your complaints to one symptom or problem per visit"
How do you get the communication ball rolling? How do you get your Dr to start asking you the right questions?

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