Why Does Medical Care Never Get Easier?
If you were going to write a history of medical care in America, who would you choose to exemplify its present state? It probably wouldn’t be Adam Goldstein. A diagnosed schizophrenic, Goldstein was convicted of second-degree murder in 2000 after pushing a young woman in front of a subway car.
Though Goldstein’s mental problems were well documented, the jury didn’t care; one juror, after the trial, called the crime “staged and executed.” “There was forethought and exquisite timing,” the juror said. An appeals court disagreed, and a few years later, Goldstein’s sentence was reversed. According to Charles E. Rosenberg, a Harvard professor who studies the history of science, the case was “a story of intellectual and institutional conflict, of inconsistent conceptions of disease and impulse control, and of a chronically ill-starred relationship between law and medicine.” In his new book, Our Present Complaint: American Medicine, Then and Now (Johns Hopkins, 224 pages, $50, $19.95 paperback), Rosenberg offers the Goldstein trial as one of many examples of medicine’s complicated and changing place in American society.
Our Present Complaint is a detailed, sophisticated, and highly theoretical examination of the relationship between medicine and society at large. If you open this medical history expecting a compendium of anecdotes about Benjamin Rush and Samuel Mudd, you will be surprised. It’s a “history” that doesn’t proceed chronologically but is organized thematically instead. Chapters examine the complexities of medical diagnosis, psychiatry, homeopathy, and other subjects. But they focus more on the social challenges that medical developments present than on the specific scientific breakthroughs behind them.
This is not to say that the book won’t engage an interested reader. It is rich with important arguments about medicine and society, and its conclusions should grab the attention of anyone who’s ever visited a doctor. Some of those conclusions, however, can be hard to untangle. The story that eventually emerges is one of a fast-developing medical community faced constantly with both scientific potential and moral difficulty.
Rosenberg looks back to the eighteenth and nineteenth centuries as a time when medicine was barely a professional discipline. It was not so long ago, he explains, that doctors lacked any idea of diseases as predictable afflictions. Each malady was treated as if it were unique to the patient under examination. “Disease concepts were based on the individual sufferer,” he writes. “They were symptom-based, fluid, idiosyncratic, labile, and prognosis-oriented.” When you went to the doctor with flu symptoms, the doctor’s response wasn’t to ask how to eliminate the underlying disease. In fact, he might not even comprehend that an underlying disease caused the symptoms. Instead, he would try to figure out how to get rid of the outward manifestations, often in an intuitive, unscientific way.
In 1804, when the British doctor Thomas Trotter suggested, “The name and definition of a disease are perhaps more important than is generally thought,” he was advancing a truly groundbreaking idea. The widespread acceptance of this concept—that “disease could . . . be operationally understood and described”—was one of the most important steps toward making medicine modern.
That sounds like an unambiguously positive development, and for millions of patients it was. But Rosenberg observes that such modernization, while making medicine more effective, also created a host of other difficulties. The interpretive task of grouping patterns of symptoms into recognizable diseases was challenging enough, but doctors today face even greater intellectual hurdles. It remains hard to pin down exactly what qualifies as a disease.
When does a recurring pattern of symptoms become a disease? Are behavioral problems diseases? Can we call anorexia, dyslexia, or, as in Adam Goldstein’s case, schizophrenia a disease? What about a type-A personality? Where do you cross a line between treating an affliction and inventing what Rosenberg calls “disease specific explanation of human feelings and behavior”?
One legitimate response is to say that it’s better to over-diagnose, and treat too many people, than to under-diagnose, and leave sick people vulnerable. But seen through the lens of medical history, this dilemma gets considerably harder to resolve. After all, Rosenberg reminds us, it wasn’t so far in the past that physicians called homosexuality a disease. What Americans consider a physical ailment at any given time doesn’t always turn out to be one in the long run.
The book doesn’t just look back into the past or out at the landscape of the present. Rosenberg also discusses, albeit relatively briefly, the looming bioethical challenge of gene-based medical treatments. “Educated men and women, journalists, even supposedly shrewd venture capitalists and corporate strategists have been enchanted,” he tells us, “by the promise that contemporary genetic medicine seems to offer.” The idea of genetic medicine—treatment that doesn’t just address symptoms, or diseases, but actually strengthens the underlying DNA of the suffering patient—seems to offer nothing less than “a dream that suffuses the ultimately imperfect body with a promise of healing.” It holds out the prospect of a world where doctors could eliminate diabetes, for example, from a sufferer’s system. If the idea of disease was a crucial intellectual breakthrough of nineteenth-century medicine, perhaps the idea of eradicating chronic illness could represent an analogous development in our own time.
Except that, as with everything about medicine, the real picture is a lot more complicated than that. Illnesses don’t just come from genes, and Rosenberg thinks placing humanity’s medical hopes in gene therapy is misguided. Our Present Complaint is a strong reminder that diseases aren’t always obvious malfunctions of the human body; they are also categories of affliction that humans create, and afflictions influenced by our social conditions. “I . . . do not think we will solve the problem of human suffering,” he writes, “when in the fullness of time all disease becomes a problem in molecular biology.”
If history teaches us anything about medicine, he seems to say, it’s that scientific developments rarely simplify the process of treatment. Breakthroughs may make it physically easier to heal patients, but they make the social function of medicine more complicated. In Rosenberg’s eyes, we can improve medicine dramatically by recognizing not only the potential of new technologies and treatments, but also “the way in which morality and moralism, obligation and responsibility are unavoidably elements of medical care—and at the same time contingent and historical.”
An understanding of complexity, then, may be the key to medical success. At a moment when health care is back in the headlines, Rosenberg’s message is worth keeping in mind.