Strategies to treat unexplained symptoms
From the November ACP Observer, copyright © 2003 by the American College of Physicians.
By Deborah Gesensway
Internist Norman M. Jensen, FACP, still recalls the patient who eventually died from events arising from her long-term somatization.
The woman, like 5% to 10% of patients in primary care practices, suffered from chronic, medically unexplained symptoms, the worst of which was chest pain. As with most patients who suffer from somatoform disorders, her medical chart was thick and complicated, while invasive tests completed over many years were all negative.
On a day when Dr. Jensen, who is professor of medicine at the University of Wisconsin in Madison, and the woman's regular cardiologist were both away, the woman went to an emergency room with another bout of chest pain. The cardiologist on call performed a cardiac catheterization and found that one of her arteries was 50% blocked.
Assuming the blockage explained her chest pain, the cardiologist performed a balloon angioplasty—which caused an aneurysm and a heart attack. While the patient survived, it left her heart weakened, and her chest pain continued until the end.
Dr. Jensen uses the above example to illustrate ways that physicians can "make things worse" for somatizing patients. In their protracted search for disease at the root of suffering, physicians order more and more invasive tests, each of which can harm a patient more than heal her. (Most patients suffering from somatization are women.)
The good news, however, is that although internists cannot cure patients with the disorder, they can help them manage somatization and its many debilitating effects. Here is a look at some approaches to a disorder that often proves particularly frustrating for physicians and patients alike.
According to Dr. Jensen, physicians need to discard some of their strong assumptions about the condition and replace them with facts.
For one, somatization is real. These patients suffer from real aches and pains and are not faking, seeking drugs, gaming the disability system or engaging in any of the other common misconceptions physicians and the public pin on the behavior of somatizers and hypochondriacs. In fact, some evidence says that there may be some biological—and even genetic—explanations for why some people suffer somatically while others don't.
Secondly, these patients can be helped. Even if doctors can't cure people plagued by medically unexplained symptoms, they can improve their quality of life through effective treatments that range from medications to cognitive behavioral therapy.
And third—and perhaps most importantly, experts say—internists need to accept that even the best of doctors will not be able to help all their somatizing patients. Some patients will become frustrated and leave, while rare somatizing patients will die because their physician may miss the early signs of some "real" disease.
"Over time, these patients are going to get cancers or Graves' disease," Dr. Jensen said. "The hard work is paying the kind of intense medical attention you need to sort the signal from the noise." It is tough, he added, to be alert to the development of new disease while also avoiding over-testing or encouraging more somatic behavior in your patients.
Treating the obvious
The challenge of tackling somatization, explained Kurt Kroenke, MACP, professor of medicine at Regenstrief Institute for Health Care and Indiana University in Indianapolis, is that doctors "have a desperate urge to diagnose and to treat. And sometimes the decision to test stems from our discomfort as internists being left with chronic symptoms."
One of the nation's leading researchers on symptoms, Dr. Kroenke explained that studies have shown that physicians should trust their own judgment more. "In the vast majority of cases," he said, "if you don't suspect something from your initial history and physical, the test comes back normal, whether it is an MRI or an endoscopy."
That's why he recommends that physicians wait a few weeks (unless a worrisome cause is suspected) to see if symptoms subside on their own. He said this is particularly good advice for somatizing patients.
The instinct to keep digging deeper for a biomedical explanation also leads physicians to ignore what is on the surface. For example, depression commonly co-exists in patients with medically unexplained symptoms and may warrant treatment. In fact, Dr. Kroenke's research has shown that somatizing patients have a two- or three-fold greater likelihood of suffering from a depressive or anxiety disorder than other patients.
The standard psychiatric explanation of somatization, after all, says that the symptoms are a physical manifestation of some psychological distress. At least half of an internist's somatizing patients might benefit from a trial of antidepressants or from nonpharmaceutical treatments like cognitive behavioral therapy.
Robert C. Smith, FACP, professor of medicine at East Lansing's Michigan State University and one of the nation's experts on patients with medically unexplained symptoms, said he recommends starting nearly all these patients on antidepressants. At the same time, he said, it's important to wean them off the narcotics, tranquilizers and sleeping pills many have been prescribed by other doctors over the years.
For many patients, he acknowledged, changing therapy is difficult and can potentially threaten the doctor-patient relationship. "You are telling people to stop taking the only things they see as helping," he said. "But you have to make the point that all the addicting drugs are creating depression and making their symptoms worse"—a concept, he said, that many patients understand.
Because many somatizing patients resist psychiatric interpretations of their illness—and hence psychiatric referrals as well—internists often can convince their patients to accept prescriptions for these medications if they emphasize the evidence about the drugs' analgesic effects.
"There is a lot of clinical trial evidence that these drugs are effective in migraine headache, tension headache, irritable bowel, fibromyalgia and other physical symptom syndromes," Dr. Kroenke said. "They seem to have a beneficial effect on physical symptoms separate from simply treating depression or anxiety."
The roots of somatic suffering
Why do patients with somatization disorder suffer so much from symptoms that nearly everybody experiences? Studies cited in a June 1, 1999, Annals of Internal Medicine review article show that 86% to 95% of the general population suffers from at least one somatic symptom in any given two- to four-week period. (The article is online.)
The difference is that few people call their physician about symptoms that include headache, an irregular bowel or achy joints. Instead, most patients ignore those symptoms and get on with their lives.
Somatizers, on the other hand, feel their symptoms more and cannot ignore them. The chest pains suffered by Dr. Jensen's patient, for instance, probably emanated from spasms in her esophagus.
According to Dr. Jensen, somatization "is related to inadequate inhibition of incoming sensory information." That lack of inhibition stems in part, he said, from "a defect in the nervous system that lets too much information through to a person's sense of awareness." While most patients' nervous systems screen out incidental sensory information, "somatoform patients don't have that ability as well as the average patient."
Dr. Jensen tells patients to think of an old-fashioned radio with tuners that need to be adjusted to get rid of background static. "What we tell people with somatoform disorders is that they have a lot of static in their nervous systems," he said, "so it is hard for them to separate the signals from the static."
Scientists are just beginning to understand some of the biological reasons that people experience pain and other sensations differently. Some of the most exciting new developments are coming from the genetics revolution, Dr. Jensen said. A 1999 study by researchers at the National Institute of Drug Abuse, for instance, found that some people may be born with too few opioid receptors in their spinal cord and thalamus.
"My guess is that at some level, there is a neural event that underpins this, but the risk [for doctors] is oversimplifying," said Harvard University psychiatry professor Arthur J. Barsky, MD. "A physical symptom has so many determinants, and the circuitry of the brain is certainly one of them. But a symptom is also a way of telling other people that you need help. It's a way of responding to stress, or a coping mechanism."
Given these explanations, it comes as no surprise that the treatments that seem to work best are those that help patients squelch the static. Experts say that one of the most promising therapies is cognitive behavioral therapy, which teaches patients to stop paying so much attention to their aches and pains—and to differentiate incidental pains from important ones.
The therapy can be easily provided in a primary care office, which is important because most patients with the disorder refuse to seek psychiatric care. More than 80% of patients with medically unexplained symptoms will agree to psychosocial treatment in primary care, but as few as 10% will agree to see a psychiatrist, according to research published in the June 2003 Journal of General Internal Medicine from Michigan State's Dr. Smith and his colleagues. (An abstract is online.)
At Harvard, Dr. Barsky and his colleagues completed one study showing that cognitive behavioral therapy is more effective than gentle counseling or a psychiatric referral in helping patients with conditions like chronic fatigue, irritable bowel, fibromyalgia and chronic back pain syndromes. Dr. Barsky said the study is just one of several that have shown the same results.
He and his colleagues randomized hypochondriasis patients into a group that received six individual sessions of cognitive behavioral therapy instead of usual medical care. Researchers found that patients receiving the therapy reported fewer and less intense symptoms, health anxiety and bodily preoccupation.
Since completing the study, Dr. Barsky said he has come to believe that more sessions are needed—perhaps eight or 10—and that they should be followed by several booster sessions to talk about problems after treatment.
Indiana's Dr. Kroenke compared these therapy sessions to the educational sessions physicians use to teach patients how to self-manage their diabetes or asthma. He added that research has shown some types of alternative and complementary medicine, like massage therapy or acupuncture for pain syndromes, to be effective. And he sometimes refers somatizing patients to multidisciplinary pain clinics that offer a variety of evidence-based services.
At the same time, simple reassurance from a doctor can go a long way toward helping patients. But while many somatization experts say that doctors should give patients a name for their disease, others believe a label can be counterproductive for people who are particularly susceptible to suggestion and playing the sick role. (See "Should you give somatizing patients a label for what ails them?")
No matter where you draw that line, all somatization experts agree that one major mistake is to let patients know that you think they are making up symptoms. All too often, physicians do this indirectly.
Dr. Jensen described one common scenario that can give patients that impression: "Physicians take a good history and do a physical exam, as they have been trained. They will do a nice, reasonable set of blood tests, urine tests and X-rays. And then when the patient comes back, the doctor says, 'I have good news for you. I can't find anything wrong.'"
Unlike the "worried well" patient, a somatizing patient will not be reassured by such a conversation. Instead, that patient is likely to either go away more depressed—with worsening symptoms—or become angry at the doctor and possibly the medical profession in general.
Finally, doctors need to understand that patients who somatize do not do so just to wreak havoc with internists' daily office routines. Dr. Jensen said he gives the medicine residents who take his required workshop on the topic at the University of Wisconsin two basic tips: "The first step is learning to tolerate them. The next step is learning to help them."
In fact, Dr. Jensen claimed, helping somatizing patients manage their disorder can give physicians a great deal of professional satisfaction.
"It's a pleasure to help them reduce their suffering, to be in bed less, to be more productive and get more pleasure out of their lives," Dr. Jensen said. "And if you work at it, you can do that."
Deborah Gesensway is a freelance writer in Glenside, Pa.
Norman M. Jensen, FACP, a professor of medicine at the University of Wisconsin, said the first step in treating patients with unexplained symptoms is to tell them you have a name for their illness: somatization.
Labeling their condition is key, he said, to convince patients that you believe they have a legitimate illness. He sometimes even pulls out his copy of DSM-IV and shows the classification to a doubting patient. His goal, he said, is to prove that they have "a real illness in the minds of people who study these things."
Robert C. Smith, FACP, professor of medicine at Michigan State University, on the other hand, steers clear of the word "somatization." After taking steps to establish a good doctor-patient relationship, he said physicians should focus on giving patients a name and realistic expectations of their illness. But because he thinks the word "somatization" carries significant stigma, he prefers to use the phrase "medically unexplained symptoms" instead.
He also tends to speak in terms that "medicalize" what's going on. "I say, 'irritable bowel syndrome—the nerves in your bowels are getting out of synch.'" His advice: "We want to medicalize it and de-psychiatrize it."
Harvard University psychiatry professor Arthur J. Barsky, MD, said it can be counterproductive to give somatizing patients a name for their distress.
"Literature has shown that just giving people a diagnosis causes symptoms," he said. Patients can have, however, a wide variety of responses. "Some people are going to be reassured by a label, while others will become professional patients. What we do know is that psychological beliefs and expectations amplify symptoms."
Harness the placebo effect of the white coat. Experts recommend that you see somatizing patients regularly and often. These people receive some psychological comfort from the simple act of seeing a physician, explained Timothy E. Quill, FACP, a professor of medicine, psychiatry and medical humanities at the University of Rochester in Rochester, N.Y. He recommended performing a physical exam at each visit.
According to Kurt Kroenke, MACP, professor of medicine at the Regenstrief Institute for Health Care and Indiana University in Indianapolis, studies have shown that a periodic visit—"asking patients about old symptoms and if they have a new one, doing a focused evaluation and telling them what it's not (for instance, your headache is not a brain tumor)"—has therapeutic value.
Regularly scheduled visits are also part of the behavioral piece of effective cognitive-behavioral therapy, said Robert C. Smith, FACP, professor of medicine at Michigan State University. "Ultimately it comes down to rewarding patients for healthy behavior and not rewarding them for unhealthy somatizing behavior."
Dr. Smith said that he tells his somatic patients upfront that he will see them on a regular basis, regardless of whether they are having symptoms.
Don't over-test. Think twice before ordering that repeat test, referring to a specialist or exploring a new symptom. Experts on somatization agree that these patients tend to be more harmed by overly aggressive approaches than by underaggressive management.
Harvard University psychiatry professor Arthur J. Barsky, MD, said good studies have shown that patients who are anxious about their health before lab tests are even ordered are not reassured by negative results. "They just say it wasn't the right test," he explained. "Or they think they weren't experiencing the symptom when they did the test, or that there is a certain proportion of false negatives."
To remind himself to be conservative when ordering invasive tests, Rochester's Dr. Quill said that he considers the fact that a greater than average percentage of somatizing patients report being abused as children. To him, the medical profession sometimes acts in a way that mimics that abuse.
"We do more and more invasive things to people in the interest of caring for them," he pointed out, adding that many somatizing patients end up losing their gall bladder and appendix, or undergo hysterectomies if they are women.
"They present with pains and when there are enough, we try to cut them out," he said. "There is the confusion about 'people who care for me doing things to me.' It's pretty sobering to think in those terms."
Screen for depression and anxiety—and treat it first. Dr. Quill said that it is easy for physicians to do a test and think any minor abnormality they find must explain the patient's symptoms, instead of being just one piece of the puzzle. "In many cases," he added, "we and the patients tend to think in terms of either/or." That's why he suggests ruling in the most common causes first.
More than half of all patients with the disorder have some co-morbid diagnosable psychiatric disorder, Dr. Barsky said. Depression tends to be the most common.
"It can be hard for internists to sort depression out when it is hidden behind this veil of somatic distress," he added. "When somebody comes in saying that they're crying all the time and feel guilty, it's not hard to diagnose they are depressed. The problem is when they come in saying 'I'm constipated and need sleep. I'm not depressed. I just can't sleep at night.'"
Realize that you may miss something. Forgive yourself if this happens and go on. Internist Norman M. Jensen, FACP, a professor of medicine at the University of Wisconsin in Madison, said he deals with these medico-legal aspects by making sure he discusses this risk with patients who have the disorder. He documents in the medical record that the patient has agreed to be a partner in managing the disease and will help him sort symptoms that signal new disease out from the noise of false alarms.
Don't take on too many somatic patients at one time. They will take a lot of time and drain you emotionally, said Dr. Jensen. He limits his half-time practice to 10 patients with DSM somatoform disorders at any given time. "If most internists would take their fair share and go a good job with them," he added, "the patients would be less likely to move from doctor to doctor looking for satisfaction.
"It takes a lot of energy to do a good job with these patients, to protect them from well-intended but injurious medical care and from suffering," he explained. "I have learned over the years that if I see too many, I start getting cynical, and then I can't take good care of them."
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