Today I write about people with symptoms that we physicians can't explain (at least to their satisfaction!). Within medicine, we've invented a term for this, which we recognize as a "syndrome", which means that we can label people and say that they have this condition which we call "medically unexplained symptoms". The term means just what it says, that you have complaints which we can't diagnose into a neat little bundle. When we bill for visits for these problems, we report the visit for each symptom and get paid in that way, because we do not get paid if we don't make a diagnosis. That's an unfortunate aspect of our insurance-driven, government-driven system. Every visit requires a diagnosis and several will get a higher level of reimbursement. The rule of thumb is to always address several problems at each visit to get paid more.
Of course, sometimes yesterday's medically unexplained symptoms become tomorrow's bona fide diseases. As well, we doctors sometimes make mistakes and miss a diagnosis that we should have caught. However, I want to argue that these days, that happens relatively infrequently due to our advanced imaging technology. I believe we are quite good at catching life-threatening and serious illnesses. We are not so good at wading through the morass of everyday, "business of life" symptoms (to paraphrase Astrid Lindgren's character, Carlsen). I suspect our mainstream culture augments this problem, however, by our unwillingness to understand that mind and body are inextricably enmeshed. When we suffer mentally, our brain suffers simultaneously as the vehicle for earth-based mind and when the brain suffers, so does the body, As a people and a culture (mainstream, that is), we are stuck in a separationist view of mind and body. We don't believe that we can feel mental suffering in our bodies. Emotional pain is not physical pain in this belief system (the research is quite contra to this). We also fail to appreciate that life experience is embodied. When we suffer, when we have stress, when we feel bad, our bodies respond. The experience of dysphoria, of unhappiness, of misery, of being overwhelmed and unable to cope causes our bodies to produce high levels of cortisol and other immune stimulating hormones. Our immune system shifts to a pro-inflammatory state -- one in which it is ready to fight invaders, only there are none, so it turns on us. It makes cytokines, the messenger molecules of inflammation. These cytokines travel throughout our bodies, preparing us to do battle. A number of these cytokines are unpleasant -- they give us flu-like symptoms, they produce low-grade fevers, muscle aches, joint pains -- in short, all of the things that can happen when viruses invade us, only there are no viruses to get over. The condition remains in a state of continued inflammation until we change it, and rarely does medicine help us to change our minds. That would be seen as equivalent to telling the patient that his or her condition is "all in your head", and no one wants to hear that in this mainstream culture. Almost everyone wants a "real" medical illness.
I believe that eventually this pro-inflammatory condition results in recognizable diseases, including heart disease (inflammation of the arteries of the heart), arthritis (inflammation of the joints), depression (inflammation of the brain), diabetes (inflammation of the pancreas), and more. That's when the medically unexplained symptoms become explainable, but that's too late for prevention. Evidence exists to support this pro-inflammatory theory of illness, but we won't go there today. That will have to be the subject of a future blog, for I wish to focus on the costs to the health care system of medically unexplained symptoms and what we can do about it. But, first, a story.
I currently have a patient with medically unexplained symptoms. He feels feverish. He has low back pain. He has muscle aches, joint pain, chills, malaise, and fatigue (malaise means you just feel plain bad while fatigue is about feeling too tired to do anything). Once upon a time, he had Lyme Disease, so his wife is convinced that he still does and it hasn't been adequately treated. Lots of people are in that boat. How to treat Lyme Disease, or what is being called Chronic Lyme Disease, is debated hotly. Conventional medicine does not believe in Chronic Lyme Disease and physicians have lost licenses in some states for complicated and arduous year (or longer) treatment programs for Lyme Disease. Of course, everything works for somebody and it's the nature of humans to believe that the treatment worked rather than the situation or the power of belief (what is called the placebo response or in Herbert Benson's terms, the self-healing response). When we see a treatment work, we try it on everyone, and that's when we can actually be wrong. That's when randomized, controlled trials are actually useful, to determine if a treatment has an efficacy over and above its ability to initiate the self-healing response.
My patient's wife also believes that we are missing THE DIAGNOSIS. She's convinced that the Mayo Clinic could find it and wants to go there. I suggested trying Dartmouth first, because the doctors there are probably as smart as the doctors at the Mayo Clinic and it's only one hour's drive, as opposed to a plane flight. Also, we're not sure that their Vermont Medicaid insurance would pay for the Mayo Clinic's superstar work-up, and money is an issue.
How about how my patient actually feels? His life is miserable. He's tired of his job. He doesn't want to do it anymore. He wants to do something else, but he's 49 years old and doesn't have any other way to earn a living. He feels burdened by his home-life. His wife doesn't work and expects him to support the family. They have three children whom she home schools. The have multiple animals who only cost money and don't contribute to the upkeep of the family. The chickens don't lay eggs, the goats aren't milked and don't mow the grass, the pony provides some entertainment for the children, but not as often as he could, the dogs contribute little besides emotional relief, the cats don't do chores, and neither do the pigs, ducks, geese, etc. His wife insists on being vegan, so they can't eat any of the animals or even milk them (sheep cheese is awesome, in my opinion!). He hates conflict and finds that it's easier to stuff it than to argue with his wife. I can readily understand his symptoms in the context of his life. Life sucks and he's miserable. His body follows suit.
However, my patient's Medicaid will pay for any number of tests, and he has had all of them. We have tested him at considerable cost to the State of Vermont, for every disease known to us (and we've looked up a bunch that we didn't previously know about). He's been tested for every autoimmune disease, for Lyme Disease (it shows past but not current infectious status), for syphilis, for tularemia (rabbit handlers get this, and he has rabbits), for all kinds of fungal and parasitic infections transmitted by the kind of animals he has. We've probably gotten an MRI of every part of his body. We can't find anything. My suggestion, which fell on relatively deaf ears, was that we wait a year for further medical tests and try to get his life in order. We could meet weekly (which would cost the State of Vermont much less than Darmouth or further laboratory tests) and try to improve his sense of being burdened and absolutely tired of life. We could gain vocational counseling to determine if there could be any chance of changing his line of work. We could see him and his wife and children and figure out how to make his life more bearable. My logic is that people who don't have any obvious life-threatening or diagnosable conditions can wait a year and work on improving their minds and quality of life and relationships and on finding harmony and balance, and perhaps even getting healings. If nothing is better in one year, we can look for serious and life-threatening illnesses again. That's a lot more cost-effective than the incessant search for diagnoses. I've also found that people tend to improve with frequent visits, similar to my family medicine colleague, Venetia Young, in Penrith, England. In her study, simply providing frequent users with half hour visits rather than fifteen minutes, dramatically cut costs and reduced the frequency of visits. I was overruled and Vermont is going to continue to hemorrhage money. My advice was ignored. Oh, well.
Finally, I want to review some of the medical research on medially unexplained symptoms, for which van der Feltz-Cornelis1 and colleagues note that there are no proven primary care treatments. They tried a long-term, multidimensional intervention by primary care providers to determine if improving the mental health of people with medically unexplained symptoms would change symptoms at an HMO in Lansing, MI. Patients ranged from 18 to 65 years old with 2 consecutive years of high levels of use of medical services and were identified as having medically unexplained symptoms by chart review. They randomly assigned 206 people to either a 12-month intervention by four family doctors consisting of cognitive--behavior therapy, medication, and other treatment modalities. They used a patient-centered model to facilitate a good provider-patient relationships. The primary endpoint was an improvement over the course of a year of 4 or more points on the Mental Component part of a quality of life questionnaire, called the SF-36. Two hundred patients completed the study (which is phenomenally good. The average age was 47.7 years and 79.1% were females. Forty-eight treatment and 34 control patients improved. This mean that you were, on average, 1.92 times more likely to improve if you were in the treatment group than if you were in the control group, with the odds of this being due to chance 2 in 100. On average, one would have to treat 6.4 patients for one to improve. Improvement was predicted by the following symptoms at baseline: severe mental dysfunction, severe body pain, non-severe physical dysfunction , and at least 16 years of education. The authors concluded that mental health intervention could help clients with medically unexplained symptoms.
Another study looked at the role of psychiatrists collaborating with general practitioners (GPs) in the care of patients with persistent medically unexplained symptoms in general practice (the authors noted that these patients rarely accepted mental health referrals).2 They conducted a randomized, controlled trial on 81 patients from 36 general practices. They assessed outcome on the patients' well-being, functioning, and level of use of health care services at 6 weeks and 6 months later. In the intervention group, the severity of the main medically unexplained symptoms decreased by 58%. The patients' social functioning improved. The utilization of health care was lower than in the care as usual group. These authors concluded that a collaborative care model combining training with psychiatric consultation in the general practice setting was an effective intervention in the treatment of persistent medically unexplained symptoms.