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.

• Read up on your symptoms and the typical evaluation. Be aware that medical info on the internet is not specifically designed to help patients with rational decision making. A runny nose can be a symptom of a brain fluid leak, but in most people the chance of this is pretty much zero. Don't ask for every test you read about. Use your doctor to help interpret the information you find.

• 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.

Mystery Diseases (Diagnosing the Undiagnosable)

Lots of emails to Doctor D ask:

Why hasn't anyone figured out what's wrong with me?

This a common sentiment of patients whose doctors have yet to find a reason why they feel miserable. Patients with mystery symptoms tend to get lots of tests and shuffled to lots of specialists. More people than you might think are in this limbo of an illness without a diagnosis.

This is frustrating for everyone. Patients get irritated with their doctors: "If I just had a smart doctor like the ones on TV I would have been diagnosed by now." Doctors, who like having answers and hate looking foolish, get frustrated with patients and wonder if the weird symptoms are all in your head. We need to all take a collective deep breath.

We all want uncover the mystery diagnosis, but we have to acknowledge an unfortunate possibility:

We sometimes won't find a diagnosis.

There are diseases that are very common and ones that are very uncommon. It also stands to reason that there are diseases that may be so uncommon as to not yet be discovered. Some diseases may be so uncommon as to affect only one human being, which could be you. If this is the case you could never find a “diagnosis” per say, because a diagnosis groups you with other people with the same disease.

There is a point at which we say, "We've done a thorough work-up and found nothing. You may have to live with this." Doctor D hates saying this as much as any doctor, but at sometimes it needs to be said.

What is a disease?

Literally disease means dis-(without) ease. If you are visiting doctors because you have miserable symptoms you already know your body is without ease. You don’t need a multi-sylable medical term attached to your suffering to know that you suffer.

When doctors diagnose diseases, we look for particular patterns of symptoms and physical findings that are specific to known illnesses. It feels great for everyone when Doctor D can say with confidence, "You have _____."

But naming your disease doesn't cure anything. Having a diagnosis is useful because we can look at research from others who have had the same disease to know what treatments work and how we can expect the illness to progress. The rarer the disease the less other patients we have to get useful info from. We can just name your disease symptoms after you (John Doe Syndrome). It might feel satisfying to give it a name but it really doesn't help us make you feel better.

The Good News About Mystery Illnesses

People with mysterious symptoms get a lot of tests. A competent work-up has likely proven you don't have certain dangerous diseases. Doctor D has yet to see a patient with a mystery illness after a good work-up die. (I'm not saying it never happens, but it is exceedingly rare.)

Why? Even though the number of conditions that can cause discomfort are limitless, the mechanisms that can cause your heart to stop are fewer and generally well-known. Your large work-up has probably excluded most of the mechanisms that lead to premature death. A negative work-up can be a good thing.

Doctor D has often reassured frustrated patients about negative studies, "Trust me, you don't want the disease I was looking for."

The other good news: We don't always need a diagnosis to treat your symptoms.

Treatments do two things: postpone death and/or decrease suffering. A thorough work-up makes impending death unlikely, so we are left with easing the suffering. Doctors often treat symptoms even without knowing the underlying disease process. Whatever helps your symptoms and isn’t dangerous is a good treatment—whether it be Tylenol, or nice sunset, or an off-label use of a medicine.

Shifting Perspective

It can be liberating to realize that finding a diagnosis is not the be all end all. Lots of patients with mysterious symptoms get run through a gauntlet of tests and doctors and often feel pressure to advance to more uncomfortable and even dangerous testing to find an answer. Doctor D has actually found that patients often find it comforting to not to "have to find an answer."

Sifting the aim of care from finding a diagnosis to learning how to treat and live with your symptoms doesn't mean that we've given up. It just acknowledges that the ultimate goal is not diagnosing diseases, but helping you find ease and comfort.

What do you think? Do you have a mystery illness? Are you a doctor who works up patients with mystery illnesses? What do you think about acknowledging not all diseases will be diagnosed? As always Doctor D loves to hear your stories and perspectives.

Click here to read follow up post: What Is A Proper Work-up?

Mammogram Madness

The U.S. Preventive Services Task Force recently advised that most women don't need mammograms as early or often as previously believed. Now you can't turn on a TV without some reporter telling us how angry Americans are about this.

What is Doctor D's take on the new guidelines?

As a working clinician I trust the USPSTF. They have no agenda-axe to grind and spend a lot of time studying mountains of data. These experts meticulously examine the thousands of studies that I just don't have time to read. They crunch numbers and come up with carefully considered recommendations.

While I can understand all the public concern, I am irritated that many doctors seem eager to jump on the irrational bandwagon.

What no one seems to comprehend is that even relatively safe tests and treatments can still be deadly. Doctor D has hurt some very nice people with the "right" treatment because all medical interventions have risks.

Men can also get Breast Cancer, just less often. Men die of this disease. Would screening every male "save lives" by catching some early cases? Probably. Would there be lots of false positives? Absolutely. Would the number of men we maim or kill with work-ups and treatments outnumber the lives saved? Almost certainly. Hence the need for evidence-based guidelines.

Breast Cancer is a horrible disease, so it was worth a try to screen women in their 40's. But now we have years of data indicating that we hurt more low-risk women than we helped. Uh-oh! It's one thing to hurt people with what we hope will be the right intervention, but when we hurt people by doing something we know doesn't work it's shameful. The same thing happened with prostate screening for men. We don't need to keep doing things that don't work.

We have a natural bias towards doing something rather than doing nothing. People expect doctors to "do something!" Doctors like to do things for patients. Hence over-testing and over-treatment run rampant in all fields of healthcare. Sometimes we make educated guesses at interventions and hope they work, but when we have evidence showing we aren't helping people, it's time to acknowledge that doing nothing is safer and wiser.

The trouble is that the guidelines are based on mountains of studies that the public, politicians, and many doctors are unequipped to evaluate for themselves. So we go for next best thing: anecdotal evidence. We base our opinions on heart-wrenching stories of women in their 40's that died of Breast Cancer. All the evidence in the world is no competition for a really moving story.

What the USPSTF needs to do is come up with a convincing narrative. Stop referring to data that nobody understands and give your arguments a human face! Parade the widowers of and orphan kids of women that died as the result of a workups for false-positive mammograms in front of every TV camera you can find. Get doctors up on stage and have us apologize, "Sorry, we did what we thought was best, but now we know we were wrong. We'll do better in the future."

Doctor D realizes he'll probably loose some readers over this post, but somebody had to defend the USPSTF against this crayzee smear campaign.

Feel free to post your thoughts, but please don't accuse me of "not caring about women's lives." I follow the recommendations because I care about women, and I've been saying the same thing about PSA in men for a while.

Are Modern Patients to Blame? (Friday Link)

Doctor D has made his triumphal return from his vacation and is back to working himself to death and blogging.

Today is Friday which means D delivers some exciting links for your weekend reading. Doctor D has an interesting radio piece for you:

National Public Radio did a piece about how educated patients who read about medical care on the internet are costing too much. Doctor D is so relieved! He had been told all along it was doctors who are bankrupting the country. Turns out it's you patients, who all have "medical student syndrome" and think you have every disease you read about. You even made that nice overworked doctor in Virginia cry!

It actually is an interesting use of 8 minutes:

So medical pages like this one are ruining the healthcare system! Too much information and you start demanding tests and treatments you don't need.

Doctor D's theory is that doctor blogs might actually be helpful with this problem. Instead of just giving info on diseases and treatments, medblogs actually give the perspective of healthcare providers. Hopefully patients who read heathcare provider blogs learn not just about diseases and treatments but the mindset of physicians, which includes understanding why over-testing and over-treating is not a wise choice.

Doctor Blogs could save the healthcare system billions! Hopefully the AskAnMD will get a generous government grant to underwrite Doctor D's important work!

So what do you think? Does being an educated, web-savvy patient make you cost the system more? Do you think reading Medblogs make your healthcare cost more or less?

Should I Have My PSA Checked? (Friday Links)

Okay so no one sent in this question, but a lot of people have asked Doctor D over the years.

Doctor D is using this question to introduce a new feature of "Ask An MD" Friday Links! There are a lot of great medical blogs by patients, doctors, nurses, and med students , so each Friday Doctor D is going to share some interesting reading from the medical blogsphere with you. I'm still answering a couple reader questions each week so keep emailing them in.

Should I have my PSA checked?

Tricky question! Unfortunately the answer isn't as simple as "Yes" or "No" and there are a lot complicated issues in healthcare tied into the controversy surrounding this simple blood test.

Doctor D wouldn't be brave enough to tackle that question, but Doctor Rob (at Musings Of A Distractable Mind) wrote a fascinating piece on the business of prostate care. The debate in the comments is where it really gets interesting.

Read it Here: An Intuitive Reasoning For Rising Health Care Costs

On a side note: It is a sad day for the medical blogsphere. Nurse K has temporarily closed her blog. She says this is a temporary hiatus. Hopefully she will be back soon, but you can still get a taste of her thoughts on Twitter. Nurse K is the funniest, toughest, most wise-ass ER Nurse on the planet and her blog was always a joy to read. I'm sure the Happy Hospitalist will cry himself to sleep every night until Nurse K is back.

Did you read (or write) a great medical blogging this week? Post the links in the comments!