Saturday, October 18, 2014

the medical industrial complex more profoundly broken than the criminal justus industrial complex

theatlantic |  For someone in her 30s, I’ve spent a lot of time in doctors’ offices and hospitals, shivering on exam tables in my open-to-the-front gown, recording my medical history on multiple forms, having enough blood drawn in little glass tubes to satisfy a thirsty vampire. In my early 20s, I contracted a disease that doctors were unable to identify for years—in fact, for about a decade they thought nothing was wrong with me—but that nonetheless led to multiple complications, requiring a succession of surgeries, emergency-room visits, and ultimately (when tests finally showed something was wrong) trips to specialists for MRIs and lots more testing. During the time I was ill and undiagnosed, I was also in and out of the hospital with my mother, who was being treated for metastatic cancer and was admitted twice in her final weeks.

As a patient and the daughter of a patient, I was amazed by how precise surgery had become and how fast healing could be. I was struck, too, by how kind many of the nurses were; how smart and involved some of the doctors we met were. But I was also startled by the profound discomfort I always felt in hospitals. Physicians at times were brusque and even hostile to us (or was I imagining it?). The lighting was harsh, the food terrible, the rooms loud. Weren’t people trying to heal? That didn’t matter. What mattered was the whole busy apparatus of care—the beeping monitors and the hourly check-ins and the forced wakings, the elaborate (and frequently futile) interventions painstakingly performed on the terminally ill. In the hospital, I always felt like Alice at the Mad Hatter’s tea party: I had woken up in a world that seemed utterly logical to its inhabitants, but quite mad to me.

In my own case, it took doctors a long time (roughly 15 years) to recognize exactly what was wrong with me. Along the way, my blood work was at times a little off, or my inflammation markers and white-blood-cell counts were slightly elevated, but nothing seemed definitive, other than some persistent anemia. “Everything’s probably okay,” the doctors would say, or “You have an idiopathic problem,” which is doctor-talk for “We don’t know why you suddenly have hives every day.” They never implied that I was crazy, or seeking attention, or any of the other things you sometimes hear from patients (especially female ones) who have sought a diagnosis for years on end. At the same time, they didn’t believe anything was wrong enough to pursue; frequently they asked whether I was depressed before even doing a physical exam.

To them, I was a relatively fit, often high-functioning young woman who had a long list of “small” complaints that only occasionally swelled into an acute problem, for which a quick surgical fix was offered (but no reflection on what might be causing it). To me, my life was slowly dissolving into near-constant discomfort and sometimes frightening pain—and terror at losing control. I didn’t know how to speak to the doctors with the words that would get them, as I thought of it, “on my side.” I steeled myself before appointments, vowing not to leave until I had some answers—yet I never managed to ask even half my questions. “You’re fine. We can’t find anything wrong,” more than one doctor said. Or, unforgettably, “You’re probably just tired from having your period.”

In fact, something was very wrong. In the spring of 2012, a sympathetic doctor figured out that I had an autoimmune disease no one had tested me for. And then, one crisp fall afternoon last year, I learned that I had Lyme disease. (I had been bitten by multiple ticks in my adolescence, a few years before I started having symptoms, but no one had ever before thought to test me thoroughly for Lyme.) Until then, facing my doctors, I had simply thought, What can I say? Perhaps they’re right. They’re the doctors, after all.

But this essay isn’t about how I was right and my doctors were wrong. It’s about why it has become so difficult for so many doctors and patients to communicate with each other. Ours is a technologically proficient but emotionally deficient and inconsistent medical system that is best at treating acute, not chronic, problems: for every instance of expert treatment, skilled surgery, or innovative problem-solving, there are countless cases of substandard care, overlooked diagnoses, bureaucratic bungling, and even outright antagonism between doctor and patient. For a system that invokes “patient-centered care” as a mantra, modern medicine is startlingly inattentive—at times actively indifferent—to patients’ needs.

To my surprise, I’ve now learned that patients aren’t alone in feeling that doctors are failing them. Behind the scenes, many doctors feel the same way. And now some of them are telling their side of the story.