Environment of Mistrust

Patients get testy.

Instead of answering, she hung up. She felt, I’m sure, that I was not getting it.
  • Instead of answering, she hung up. She felt, I’m sure, that I was not getting it.

As I was completing my instructions to a diminutive 70-year-old Filipino gentleman with congestive heart failure, a knock at the door cut me short.

“A patient is having a seizure.” Jo, a medical assistant with a South Carolina accent, delivered the message with the same calm that she might have used to disclose that she was going to use the restroom. I excused myself and bolted across the hall way and into another exam room, where Susie, a nurse practitioner, stood wrapping a blood pressure cuff around the arm of Veronica, a young Hispanic woman gazing up at our ceiling from her reclined position on the exam table. Jo was poised across from Susie, ready with the glucometer to measure Veronica’s blood sugar.

“I had just diagnosed her with sinusitis,” reported Susie. “She then said she felt faint, and the next thing I knew she fell backwards onto the table and had a seizure.”

Veronica’s blood pressure was a normal 110 over 66, her heart rate was a steady 72, and her blood sugar registered a reassuring 130. Fully alert, she had no problem identifying herself, us, our location, and the date. All of which clinched the diagnosis: vasovagal syncope with secondary myoclonus.

I first learned about this phenome non during my residency at UCSD when one of the smartest internists I’ve known, Dr. David Preston, livened up a teaching session by recounting the scenario of a constipated patient bearing down so hard on the toilet to crap that he passed out and seized on the bathroom floor. Pushing hard and long can cause the neck’s pres sure receptors to act as though the blood pressure has gone up so high that it needs an immediate correction, so the receptors activate a pathway that stimulates the vagus nerve to slow down the heart. Other mechanisms simultaneously dilate the arteries going to the head. This cascade of events can lower the blood pressure enough that not enough blood enters the brain to sustain consciousness, causing a fainting episode. The horizontal position restores the flow to the head, allowing the person to wake up.

Rarely, but often enough that most health-care professionals see it more than once in a career, the temporary loss of blood flow triggers random contractions in various muscle groups, creating an event that looks a lot like a grand mal seizure. I do not know why Veronica passed out, but sitting in our not-so-tranquil office for a long time with a fever of 102.4 degrees likely had something to do with it. The fever dilated her veins, which caused her blood to pool in her leg veins so she did not send enough blood back to her heart to pump to her brain, and down she went.

I explained the sequence of events to her and told her that this could happen again if she fainted. She should therefore avoid changing positions (lying to sitting or sitting to standing) quickly, prolonged heat exposure, excessive alcohol use, and going long periods of time without drinking or eating. These “seizures” are not associated with brain abnormalities, and therefore we don’t order diagnostic tests such as electroencephalograms (EEGs) and magnetic resonance imaging (MRI) scans. Needing to return to my patient with heart failure, I left, allowing Susie to finish the explanations.

Three days later, I returned to my desk as I always do between patients and noted Veronica’s chart sporting a thin green telephone-message slip saying she wanted an immediate phone call for a neurology referral.

This was predictable. Several weeks earlier, I had met for the first time a 24-year-old software engineer who had felt weak, tired, and a bit lightheaded for a few weeks. Placing my fingers firmly on the radial artery of Scott’s right wrist, I noted the irregular, rapid rhythm typical of atrial fibrillation, a rhythm disturbance that the first President Bush made famous during his battles with it. One of the heart’s four chambers, the left atrium, in many people, reacts to stress by regressing into a quivering lump of electrical chaos. The stresses can be acute or chronic. A cocaine storm blowing in through willing nostrils, a sudden withdrawal from regular heavy doses of alcohol, or a surge of thyroid hormone from an overly stimulated thyroid gland are common sudden triggers. Coronary artery disease and structural problems with the heart, including leaky mitral valves and overly muscular hearts, are the common chronic culprits.

We did the EKG, which confirmed the diagnosis and did not suggest other problems, such as left atrial enlargement or a threatened heart attack. I reviewed with Scott the details of what we had to do next. Looking about eight years younger than his age — with his round-rimmed glasses, skinny long arms and legs, and short brown hair — Scott came across as the per fect student. Because he was maintaining a normal blood pressure and not having chest pain nor shortness of breath, we would treat him as an outpatient, but if he developed any of these symptoms, he would need to come in to the hospital. I filled out the forms and instructions enabling him to go for blood tests and a heart ultrasound (echocardiogram). I told him how to take verapamil to slow down his heart and Coumadin to thin his blood. Unlike a beating heart chamber, a fibrillating atrium doesn’t move blood, and therefore the blood sitting in there can form clots, which can break loose and imbed themselves in dangerous places, such as large arteries supplying the brain, kidneys, intestines, or limbs, causing those organs to die. Coumadin helps prevent these disasters.

Within a few days, we had restored his heart’s normal sinus rhythm and adjusted his blood thinner to the appropriate levels. His blood-test results were normal, and his echocardio gram showed only a small leak in his mitral valve, which had been enough to cause a mild enlargement in the chamber into which that extra blood was leaking, the left atrium. This stretching of the atrium near his pace maker had caused the rhythm disturbance. His energy had returned, and he had a normal blood pres sure and pulse. We had diagnosed and fixed his problem. We would need to con tinue his blood thinner for a month, he would have to take verapamil or a similar medication forever, and he would have to avoid drugs or medications that could cause a recurrence, but otherwise he could go back to his normal life. “That’s great,” he said. “Now when do I see the specialist?”

Most people in the United States believe that specialists are smarter than primary-care doctors, even though objective measurements such as standardized tests (e.g., SATs) and grade point averages) suggest the opposite. Most do not know that board-certified family physicians do a three-year residency to become specialists in common problems and can treat 85 to 95 percent of all medical problems without outside assistance. When something appears serious, treatment from a family practitioner does not seem to be enough. I was prepared to go through this again over the phone with Veronica.

“What can I do for you?” I opened in my usual fashion.

“I spoke to a friend of mine who is a doctor, and when I told him I had a seizure, he said I needed to have blood tests and an MRI.

True. Any adult who has the first seizure of their life needs an evaluation for a brain tumor, including an MRI. But she did not have a seizure. I explained this to her.

“So what you’re really saying is that it is not cost effective to do an MRI.” I felt the clenching of her teeth.

Now we were dealing with the managed-care factor. When many patients cross our doorstep for the first time, they walk in believing that my job is to do as few tests as possible and deny them access to specialists in order to save money. I have to explain to them that the opposite is true: I argue alongside my patients for necessary tests and referrals. It’s the insurance companies who put up the obstacles. In Veronica’s case, I was not out to save anyone’s money. I was trying to save her from the hazards of doing tests on people who have a low likelihood of disease, which is the most important reason we do not order unnecessary tests.

Lee, a Chinese engineer in his early 20s, came in to see me later the same day to prove the point. He and his girlfriend came to the United States less than a year ago. They were both virgins when they met and have never slept with anyone else, used intravenous drugs, nor undergone blood transfusions. For the past two days, he had suffered from a severe sore throat and diffuse muscle aches, typical symptoms of common benign viral infections. But my routine historical questions made things much more interesting. The previous week, his girlfriend’s employer had sent her to have her blood tested for HIV because the company required it. Fate decided, perhaps to teach the employer a lesson about doing tests for a disease in a person who could not have it, that her test should come back positive. And now her boyfriend was coming to me with the same symptoms that HIV causes when one first becomes infected. He did not know this; he was just trying to get a diagnosis and treatment for his illness.

After several phone calls to his girlfriend and her employer, we were able to track down the laboratory that ran her tests, and they explained the situation: her enzyme-linked assay for HIV, which has a false-positive rate in the range of one per cent, had yielded a positive result, and they were in the process of doing the much more accurate Western blot assay to check it. When I called again a few hours later, they confirmed what I already knew: the Western blot was negative. She did not have HIV and neither did he. We knew that before the whole mess started. But for several days, his girlfriend thought she might have it, and for several hours, he had to worry that he might as well.

Every test, whether it’s a blood test, an X-ray, an MRI, an EKG, or anything else, has a false-positive rate. Lee’s example illustrates the problem. If you do a test for a disease in a person whose risk for the disease is much lower than the false-positive rate of the test, a positive result is meaningless because it is almost certainly falsely positive. Veronica’s brain was not any more likely to have a tumor in it than any adult in the general population. If we do an MRI and it shows an unidentified bright object or some other nonspecific blemish that we can often find on MRIs of normal brains, some inexperienced or underpaid neurosurgeon might want to perform an unnecessary brain biopsy. Sure, the biopsy might prove she does not have cancer, but what if the scar from the biopsy caused genuine seizures? Unnecessary medical tests do not just cost money; they can cause harm.

I realized that Veronica would not hear me if I gave such a detailed defense, but I did say that money had nothing to do with it. “If this were ten years ago, before the influence of managed care, I would have told you the same thing. Look, I do not stand in the way of patients getting the care they want. Would you like to see a neurologist? If so, I can arrange that.”

Instead of answering, she hung up. She felt, I’m sure, that I was not getting it. I gave her file to Cyndi, our office manager. Three days later, Cyndi was able to reach Veronica and facilitate the neurology referral. Rachel, the neurologist, sent me a report a couple of weeks later, at which time I called and apologized for the referral. Like most of our local specialists, Rachel is overworked, but she understands the problems those of us in primary care face in these situations. Managed care has created an environment of mistrust and, in some cases, hostility between patients and providers that prompts patients to seek unnecessary additional consultations, wasting the money the health plans claim to be saving.

For my own self-esteem, I will, from this day forward, translate “That’s great. Now, when do I see the specialist?” as “Thank you so much!” There. I feel better already.

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