Interesting Case of "Co-rumination"

I haven't written much about actual medical cases I see here at my hospital but this one intrigued me. Some details have been altered of course.

A 30ish female showed up in our emergency department complaining of a sharp, stabbing pain in her left neck (10 out of 10 in intensity) for several days along with a palpable mass over the area. The pain had been present for two to three months but not nearly this intense nor had the mass been as large. She also complained of fatigue, shortness of breath, tactile fevers (felt hot but hadn't actually checked her temperature), and a range of other symptoms. The intern who presented this case to me found absolutely nothing on physical exam: normal vital signs, no mass, lungs clear, etc.

My impression just from the presentation was that this was unadulterated BS (medicalese for "move along, nothing to see here"). How wrong I was.

When I walked into the exam room there were two healthy-appearing women sitting, both with the same look of overwhelming dread. Usually I'm fairly insightful but in this case, it took several seconds to determine which one was the patient. Seeing an "older" attending, the patient's friend whom I'll call "Patient #2" immediately unloaded Patient #1's symptoms upon me.

Patient #2 related in great detail every ache, every sensation, every pain, every bowel movement, indeed every agonized breath of her friends over the past three months. Certainly, it is not unusual for a patient's friend or family to function as an advocate and relate observations about the patient that may be helpful to clinicians.

It's rare however for such advocates to give detailed subjective descriptions of how the patient is actually feeling (at least when the patient herself is articulate, not shy or embarrassed, and for whom English is her native language). Between Patient #1 and Patient #2, I was barraged with with a torrent of imagined symptoms.

In examining Patient #1, I agreed with my intern that there was no mass, nor any other physical findings of note. In my most professorial and reassuring manner and despite the fact that my skin was crawling in much the same way as when I walk into a room with a patient believed to have scabies, I told her her symptoms were nothing to worry about, that medical science can't always explain what patients are feeling, that her problems would undoubtedly resolve shortly, and that we were always here in case she didn't get better...

Our patients were greatly reassured and they both thanked me profusely. I walked out of the room feeling I'd done some good.

The diagnosis? This woman (and her friend) turned out to have a severe case of co-rumination, a topic I've written about before. The problem was that, like many females, they tend to "share" far too much. By doing so, their anxieties spiral upwards out of control as happened here. Men seem much less likely to engage in this maladaptive behavior. Certainly, we'll see more of this with men as society continues to encourage us to explore our "feminine side".

Perhaps if I had been more upfront with my convictions, I would have also recommended they stop co-ruminating regarding each other's maladies.

But that might not have been cool.

From Dr. Jill Bolte Taylor: The Most Electrifying Lecture You'll Ever Hear

I've heard a lot of lectures in my life but never one like this. This is neuroanatomist Dr. Jill Bolte Taylor giving a talk on the functional differences between the right and left hemispheres of the brain. She's passionate about her subject as she actually suffered a massive intracranial hemorrhage that trashed her left brain. Dr. Taylor brilliantly describes the experience and sensations both as a stroke victim and as a scientist.

Not that I want to replicate her experience but man do I wish I could teach like her! Check it out and prepare to be riveted by the most amazing 20 minute talk you've ever heard.

It makes me never want to step up to a podium again.

Outsourcing the Day to Day Stressors of Life

Here's some insight regarding life on the other side of those monuments to outsourcing, Indian call centers. It seems that operators in India are succumbing to the stress of dealing with European and American ire:

Miss Aggarwal, an English graduate, said she planned to quit, tired of wishing customers a good morning only to hear: "Oh, I'm through to India am I? Put me through to someone who can understand English, you f****** cow."

Yikes. These people are apparently suffering from various medical problems real and imagined from this sort of work.

I'm reminded of a patient I saw in my office many years ago, a young woman with a "positive review of systems" which is medicalese for having every complaint under the sun. After getting a detailed medical history and examining her thoroughly finding nothing wrong, I asked her if anything in her personal life was bothering her.

"Well gee doc, I hate my job. It's kind of...you know, stressful."

I asked her what she did (which I should have done in the first place). Her answer convinced me that she did in fact have one of the worst, most stressful jobs in the history of mankind.

She worked as a cashier at an impound garage. She had to take rather large payments from less than cheerful "clients" to retrieve their cars which had been towed. My advice: find another line of work.

Who says medicine has to be complex and arcane?

Recollections from an Old Blog Post

A few years ago, I wrote about my response to an email I received from a patient. She was experiencing chronic pain yet her doctors were unable to diagnose her illness. I detailed the thoughts her email engendered in me. That post generated a great deal of email from many patients. Recently, a similar patient commented on that post anonymously.

If you're reading this, I just want to let you know that I read your comment and was just as affected by it as by the others I received. Good luck in your quest for health, relief, hopefully one day a cure!

John

Patient Advocates to protect you from your healthcare system

KevinMD posted this entry about the newest brand of overpaid consultants, "patient advocates".

It is amazing to me that modern healthcare has gotten to the point where there is a general perception that we need to pay people to protect us from our doctors and other healthcare institutions.

Most surveys of patient satisfaction, contrary to popular belief, actually show that patients usually like their doctors and feel confident in their care. It's the nature of the parameters that they work under that makes people feel the need for protection.

For example, the article in the Boston Globe that Kevin linked talks about hiring private nurses to attend to patients while they're in the hospital. This is undoubtedly because of the very real concerns patients and families have about medical errors. Unfortunately, and I'm sure most patients are unaware of this, there have been a number of tragic cases of poor care that arose because of inattentive, poorly screened or incompetent private nurses whose presence gave the hospital's nursing staff a false sense of security and fostered less dilligent care.

The article was amusing on one level in that it described the work of one advocate, a Dr. Gwendolyn Stritter, who runs a telephone-based advocacy practice. She's an anesthesiologist who decided to "branch out" into clinical advocacy. She charges $300 for an initial two-hour visit, reviews cancer patients' medical records and finds the latest treatments for them:

"She reviews their medical records, combs six to eight online physician databases to find the latest research, then talks to the researchers who've done the studies. She also attends major cancer conferences with her patients in mind."

Maybe it's just me, but if the patient's own oncologist isn't doing the legwork himself (and with the benefit of a subspecialist's added experience), that patient needs a lot more than a "patient advocate"...how about a new doctor (or at least a second opinion)?

The Painful Limits of Western Medicine

There is a pain that all health care practioners at some time experience. As a physician, I can clearly relate to the frustration of taking care of patients who simply "refuse to get better". These are the patients who complain of symptoms that seem to defy our most energetic efforts to diagnose and treat.

Many or all of us will ultimately resort to concluding that he or she is suffering from depression, malingering or a classic "diagnosis of exclusion" such as chronic pelvic pain, irritable bowel syndrome, etc. Sometimes, we'll attribute their problems to other poorly characterized or understood maladies such as chronic fatigue syndrome or fibromyalgia.

Usually our initial efforts to help these patients are heartfelt and aggressive. However, we are often worn down and give up eventually, leaving our patients (and ourselves) feeling isolated, alone and self-doubting. Certainly some of these patients will leave our offices feeling in some way inadequate and lacking some basic moral strength that "healthier" people possess.

Here is a letter I received (edited for readability and anonymity) that the author gave me permission to publish. To me, it was a bit of an eye-opener in that I've never heard this type of patient's perspective articulated in such a moving, sincere and intelligent manner:

Dear Dr. Ford:

I came across your blog/website while conducting research on the web for information concerning pain management of Severe Chronic Intractable Pain (SCIP) -- headaches, specifically, in my case. Please forgive me for introducing myself this way, but your website seemed to invite inquiries from curious, frustrated, suffering, and/or help-seeking people like me.

I have been bounced from doctor to doctor over the years, and I'm going nuts (and nearly bankrupt) trying to find a physician who understands and treats patients with my specific issue(s).

I am a 42-year old female and have lived with severe and daily headache pain for more than 25 years. It began with a serious auto accident in 1979 and has progressed over the years. Unquestionably, as the pain worsened with the passage of time and the development of DDD and mild arthritis, fear within the medical profession due to government interference and legal ramifications, etc. has made it virtually impossible for me to be treated as anything other than a street junkie looking for her next fix.

I have undergone every diagnostic test under the sun, and opinions among my treating physicians re their findings have varied substantially, rendering me more confused than ever, financially challenged, and still in extreme and constant pain.

I have tried every mode of treatment that has been prescribed/recommended to date (i.e., PT/OT, hot/cold packs, massage, traction, TENS, biofeedback, acupuncture, occipital nerve blocks, epidurals, and virtually every RX imaginable, including NSAIDs, muscle relaxants, anti-depressants or other mood altering substances, opiates and other types of drugs used to mask the pain, etc.). Because there seems to be insufficient diagnostic evidence to support any other condition, I
have repeatedly been "lumped" into the category of SCIP or simply someone who cannot be helped, and unapologetically placed on the fast track to yet one more new doctor who is "better equipped to handle my situation," having to start all over each and every time.

I've been given false hope and no hope and everything in between, and it has cost me literally tens of thousands of dollars out of pocket just to hear the words, "I can't help you." I truly believe I have reached my breaking point, and I desperately need the help of a caring, compassionate, and courageous physician.

To add insult to injury, many doctors have outright labeled me a "drug-seeker," and initially I was mortified by that label. I would leave their office (after having paid a sizeable chunk of change for the visit, of course) no better off in any respect whatsoever, and instead feeling ashamed, embarrassed, humiliated, and completely helpless and hopeless.

I began seriously questioning myself, my condition, and the whole addiction possibility. As I learned more about the issues and the people who suffer along with me, I became more outraged than anything. At this point, I will readily, though certainly not proudly, that until someone can identify the cause of my headaches and provide a viable, reliable and multifactorial treatment therapy for me, I am indeed dependent upon -- NOT ADDICTED TO -- pain medication.

Recognizing that advances in medical technology, strategies and treatment options are made regularly, I am not looking for someone who will simply rely upon drug therapy alone. It is important to note that I do not advocate the imprudent use of opioids, and I fully understand and appreciate the varying opinions in this regard. Simply stated, I strongly concur with the ideal that certain patients do indeed benefit from the carefully supervised and judicious use of opioids in the treatment of chronic pain.

What I am not willing to do is to continue in my suffering while the "investigation"
continues, only to be referred out of his or her office to become someone else's "problem" patient.

Having put all of this information forward for your review and consideration, I was just wondering if you or someone to whom you refer patients deals with my specific dilemma/needs. In order to stop the out-of-control "spinning of my wheels," it is imperative that I discover a physician's approach to pain management for someone suffering headaches prior to scheduling even my first appointment with him or her.

Any input you could provide would be sincerely and greatly appreciated.

Sincerely,

XXX

Here was my response:

Dear XXX,

Believe me, I feel for you. I have met patients like you and have experienced the same frustration that I'm sure your doctors have felt at being unable to help you.

It is obvious that you are not exhibiting what we like to refer to as "drug seeking behavior". Your sincerity is quite apparent. Unfortunately, I don't have any ready answers for your dilemma. If I understand you correctly, you've seen many physicians who've presumably devoted great effort to finding a solution to your problems and have been thus far unsuccessful.

I'm sure that you've had countless lab and imaging studies and have yet to be diagnosed with a specific disease entity which we in modern "western" medicine understand. To label your problem as SCIP is to my way of thinking to have given up on finding an underlying cause and simply assigned you a "diagnosis of exclusion".

There are two possibilities here:

One, you have a medical diagnosis that simply remains to be uncovered. This seems unlikely given the vast number of practioners that you've accessed. SOMEONE should have uncovered your problem by now.

Two, your problem transcends western medicine's understanding of disease. Don't laugh. There is much that seems to be true about the human body that we simply don't understand much less have given a name to. I have studied one discipline of non-western medicine in the past (acupuncture) and this experience has led me to truly believe that there is much that is a black box as far as allopathic medicine is
concerned.

How do these observations help you? Admittedly, not much. However, they do suggest two things:

One, there is at least the possibility that with time, medical science will one day advance to a point where your disease will one day have a name, a pathophysiology and a treatment.

Two, that perhaps further exploration of nontraditional medical approaches may be fruitful.

It hurts me personally that I have nothing more to offer you than these bservations. As far as being able to refer you to a physician that is more liberal (comfortable) with simply prescribing pain medications such as narcotics, I just don't know any. I do know that they are out there and if that's a solution that you're looking for, I'm rather surprised that you haven't found such a doctor.

At any rate, I again reiterate MY frustration at not being able to help you. May I offer you the best of luck in pursuing your quest for good health?

Take care and feel free to write any time,

John

To any other such patients reading: It seems that your feelings, frustrations and suffering has been expressed in the most poignant way I've seen so far...and I've been doing this for quite a while.

To my readers in the health profession: Can't you just feel the pain? Perhaps this should provide an impetus, no matter how small, to stand by our patients? Isn't that the ultimate moral imperative of our standing as healers?

Probability and Medicine

EconLog, linked an article by Dr. Richard Friedman on probability and medicine. In it, Friedman makes the point that many patients don't really understand the nature of probability in medical decision making. He cites the confusion a patient had when she was trying to understand that a 60% response rate with a given anti-depressant didn't mean that she would respond to it 60% of the time.

When he explained that she would either respond or not respond, she became confused and said "You mean my chances of getting better are really only 50%?" Clearly, she was mistaking the binary aspect of the treatment outcome (getting better or not) with the probability that she herself would get a response.

Friedman then speculated on why her patient might have had this misconception. He points out that mathematicians have attributed such problems on innumeracy "the arithmetic equivalent of illiteracy". He also mentioned that some misunderstanding might arise from a natural human tendency to not attribute bad (or any striking) events to chance.

Personally, I think the example Friedman cited has more to do with innumeracy. However, I don't like the word because of its pejorative connotation. The fact is that most of us have this type of innumeracy even doctors (if you can believe it). Probability is one of those terribly difficult philosophical problems that trouble just about all of us.

The dynamics of a clinical situation will determine the probability of a given patient developing a specific disease. A smoker has a higher probability of getting lung cancer than a nonsmoker, but an individual will either get it or not period. This sounds straight forward but a lot of people have problems with it. Some smokers never get lung cancer and some nonsmokers do. The reason is that smoking is not the only factor that leads to lung cancer. The more factors we understand (for example age, exposure to other toxins such as oxidants and genetics), the more precise the probability estimate will become.

This becomes very important as physicians increasingly embrace evidence-based medicine (EBM). In the desire to cite statistics of medical outcomes (such as the chance of developing a certain disease or the likelihood that a certain treatment will work) it is very important to recognize that every patient is different. The study population of a particular study will surely have a cross-section of many different types of participants. The patient's observed probability will be closer to patients more like himself -- maybe closer in ways that weren't even imagined or assessed by the researchers.

The original studies looking at the impact of cholesterol on cardiac outcomes didn't subdivide patients by measuring the different types of cholesterol such as LDL, HDL or triglycerides. Had they done so, individual probabilities of adverse outcomes could have been better stratified (as they have been subsequently).

As physicians, we have to do a better job of explaining these concepts to our patients. At the same time, we need to do a better job of understanding them ourselves! What's true in a study may not be true for a particular patient.

I want to close this post with my favorite probability brainteaser: If you flip a coin nine times and it comes up heads each time, what is the probability that it will come up heads the tenth time? I'll put the correct answer as the first comment to this post.