The Doctors In The Ivory Tower

After spending the last month on sex, drugs, and rock-n-roll Doctor D is back to discussing hardcore medical issues:

Sick Momma asks,

"Everyone tells me I should go to Mayo Clinic or Johns Hopkins. Are the doctors there so much better?"

If you travel to Hopkins or Mayo you are basically paying extra for "name brand" medical care.

Is the name brand better than the regular stuff? Sometimes, but often it's just more costly for the exact same thing. The docs in those places have all published a lot of studies or are recognized names in their field.

"I am the chairman of Medical Expertology at Ivory Tower University, and I am never wrong about anything."

The Academic Brand

Doctor D's time in the ivory tower of medical training revealed to him that the biggest brains in medicine aren't always the best at caring for patients.

Some super-experts will be good at the bedside, but quite a few of them suck at actual doctoring.

Occasionally the super sub-sub specialist expert will know something useful to you that your regular working doc didn't know, but this is more rare than you think. Academic abstraction can also prove a distraction from the simple problem-solving that is often needed. If your car isn't acting right a regular mechanic is usually a better choice than the mechanical engineer at a big name university.

The SuperClinics

The Mayo Clinic is a bit different from academia. They are more hands-on than academic. Superclinics like Mayo pride themselves on being a Mecca for VIP patients.

From anecdotal stories from patients I know who went to Mayo my impression is that they do a lot more tests than most doctors. More tests can be a double edged sword. If you've been reading AskAnMD you know that more care isn't always better. Doctor D has a relative who had a very bad outcome at Mayo after what sounds to have been excessive, unnecessary testing.

In the end, big brand name hospitals and clinics will often do the same tests or treatments your local doctor would do, but the diagnosis or cure is considered more "brilliant" or "amazing" just because it happened Mayo or Hopkins.

A lot of people go thousands of miles to get the exact same care they could have gotten down the street.

Generally speaking I would advise people to work with local resources first.

Only if you are told by the you local docs that you are beyond their abilities would I suggest you look into the big names. Often the primary doctors and specialists in your own area are more convenient and just as good for your needs.

What do you think? Do any readers have first-hand stories from the "Ivory Towers" of medicine? Did you go for a rare disease or a common problem?

Do you think that the care there was superior to the care you could have gotten in your own city?

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.

Putting Down Pets And People

I read a very poignant post by Neo-Conduit this morning about her terminally-ill friend who considered suicide. I was reminded of a question I have often been asked by patients:

We put down our dying pets humanely. Why can't we be so good to people in the same situation?

It is a good question that needs an answer. Doctor D used to just say, "Doctors shouldn't kill patients," but that really didn't respond to the suffering of people facing terminal illness.

I am glad that euthanasia is illegal where I work. Doctors have the ability to keep a dying person comfortable without putting them down like dogs. Human beings are not dogs. Doctor D was good to his elderly dog when he euthanized her, but there is a huge difference between killing a pet and a person.

The most important approach to suffering people is a deep respect for their value as human beings. That respect motivates me to care for their pain. It motivates me stop treatments when they no longer desire them. It also motives me to never give a deadly medicine—even if it is requested.

The approach of death can be disorienting and terrifying. There is a spiritual suffering that is often greater than any physical pain. In moments of hopelessness ending one's own life may seem like the only escape. A person asks him or herself, "What is the value of this dying thing that is me?"

Doctor D has had many patients nearing the end of life say to him, "I wish I could die now!" I have yet to have a single one be disappointed when I respond, "It is ethically wrong for me to end your life, but I will stay with you till the last breath and make sure you are comfortable and respected."

Suffering and dying people need to know they have some value that is more than the sum of days they have left. The deepest respect of all is reminding them they have the most valuable thing of all: a human soul.

Quality of Life is a subjective judgment. I honor my patients by letting them decide what is a quality life and what is not. Value of a Life is different. The value of every person's life is infinite. I honor that value by never killing a human being for any reason.

I already know Nurse K is going to give me a hard time for such a touchy-feely post. Doctor D promises to get back to some fun shit soon.

...But before we get back to fun questions what do you think of Euthanasia?

Take The Bitter Pill? (Drug Side Effects)

From a reader:

"I am so tired of taking medications that seem to cause more problems than my diagnosed disease."

This is one of the trickiest problems in doctoring: all medicines have side effects. Doctors treat diseases, but we unintentionally cause a lot of suffering with our treatments.

Some medicines cause frequent side effects. Some medicines cause them only occasionally. Some patients very rarely get side effects. Some people seem to get a side effect from everything they take. Any one person's reaction to any one medicine is impossible to predict. It gets pretty complicated.

It's important to understand that having a side effect doesn't mean it was a "bad medicine." It may work great for lots of other people. You should also realize that a bad side effect doesn't necessarily mean you had an incompetent doctor. Doctor D can't count how many patients have told him, "I'm never going back to Dr. SoAndSo, because he gave me a prescription for a poison. It made me feel terrible." (Patients have probably said this about Doctor D too.) The doctor who diagnosed you and gave the medicine is often in the best position to help you approach the problem of side effects.

In the end, only you can decide if it is worth taking any particular medicine, but your doctor can help you understand the pros and cons of any medicine or treatment.

A few common situations involving medicines:

• Dangerous Disease, Few Symptoms: Some diseases like Hypertension cause almost no symptoms until it is too late. Lots of people stop blood pressure medicine for mild side effects just because they just cannot feel the pressure destroying their arteries. Low-symptom diseases like Hypertension, Type II Diabetes, and High Cholesterol kill millions even though we have lots of great medicines. People have a hard time taking medicine when they don't feel sick. If you have medicine side effects with one of the "silent killers" you really need to talk to your doctor about switching medicines. Going without any treatment is a bad idea.

• Benign Disease, Miserable Symptoms: A lot of conditions from the Common Cold to Fibromyalgia never kill anyone, but they can make you feel horrible. The symptoms are the disease and therefore if you can handle the disease better than the medicine the choice is obvious. Just be sure your doctor agrees you have a benign condition before making this decision.

• Bad Disease, Bad Medicine: This is always a difficult place to be. A horrible disease that is treated with medicines that make most people miserable. Many cancers fall into this category. Your doctor can help you understand the probable risks of the disease as well as the expected side effects of the medicine, but remember the decision is yours.

• Mixed Diseases: Some diseases cause some difficult symptoms now and often vary in the amount of long-term damage they cause. Rheumatoid Arthritis is an example of such a condition. Treatments are aimed at current symptoms, at long-term damage, or both. Decisions about medicines in such conditions are never as clear cut as the other diseases. If you have trouble tolerating a medicine, you should ask your doctor if stopping it would have any long-term ramifications.

All these decisions belong to you, but doctors are useful for educating you. If a medicine makes you miserable ask you doctor, ""I'd love to stop this med because of side effects, what might I risk by doing this? Are there other medicines that I could try?"

Have you ever quit a treatment that was working because of side effects? Was your doctor helpful in your decision-making process? Doctor D would love to hear your stories.