One of the first things you learn about in medical school is the difference between symptoms and signs. Symptoms stem from patients’ subjective experiences — how they’ve been feeling or what seems off to them. For example, “my stomach hurts,” “I feel tired,” or “my arm itches.” These complaints cannot be verified by lab tests or imaging. We simply have to rely on the patient’s word.
On the other hand, there are signs. Fever. Rapid heart rate. Abnormal white blood cell counts. Doctors and nurses can objectively identify these characteristics, using everything from physical exams to high-tech gadgets. These findings independently clarify the patient’s condition from both inside and out.
As medical students, we spend our four years learning to match the sets of symptoms with the right signs. When a patient presents with chronic headache, we take a neurological exam or recommend a brain scan. If others come in with shortness of breath, we listen to their lungs for crackles and other sounds.
But what happens when there’s a complete mismatch between symptoms and signs? When the patient’s feelings defy every swab, blood culture, and beeping hospital machine? It’s a situation that neither physicians nor patients want to find themselves in. And one that pushes medicine to the limits of its design.
The story of Justina Pelletier, a 15-year-old girl from Connecticut, is one such situation. For years, Justina had puzzled doctors with unusual sets of symptoms, like debilitating fatigue and weakness. She underwent multiple invasive procedures and took various medications to no avail. At Tufts Medical Center, the chief of metabolism concluded that she had mitochondrial disease, a tricky diagnosis that has a wide range of presentations. But, when her care shifted to Boston Children’s Hospital last February, her new clinical team believed something else was going on. They diagnosed her with a psychiatric disorder and, whether justified or not, filed a medical child abuse claim against her parents for contributing to her harm.
Since then, we’ve seen the shocking consequences of this medical divide. Justina’s father called the police on the hospital and, to his surprise, was escorted from the building with his wife. Justina was placed in a locked psychiatric ward, and her parents were banned from daily visits. The case has wound its way through juvenile courts and garnered widespread news coverage. By now, in this battle of symptoms versus signs, it’s pretty clear that no one wins from either side.
Justina’s instance is extreme. Yet it speaks to a pervasive phenomenon in medicine. Debates like these, where there’s no apparent right answer, take place in hospitals and clinics around the country on a daily basis.
Take the example of pain — a classic symptom. It’s one of the most fundamental metrics of clinical practice, but physicians have no way to objectively measure it and simply have to trust their patients. In October, the Food and Drug Administration proposed tighter restrictions for a host of pain medications, with the hope of combating prescription drug addiction. There’s great stigma these days around painkillers and, in my first week of medical school, I was told to be constantly on guard against my patients.
Still, if you can believe it, multiple academic studies indicate that we are undertreating pain in the United States. A 2011 report by the Institute of Medicine concluded that chronic pain is a public health crisis that costs the country approximately $600 billion each year. Indeed, many doctors find themselves stuck between a rock and a hard place, where they don’t know if their prescription decisions will prolong a patient’s pain or feed a ruinous addiction.
That’s the trouble with medicine. We, as a society, set up extensive regulations for the responsibilities and training of clinicians. But the execution of their role depends on these symptoms and signs — imperfect windows of experience that don’t necessarily adhere to such rules and guidelines. Within these ambiguities, health care providers must discern when to apply the powerful instruments at their disposal and when to carefully hold back. It often just comes down to clinical judgment, a skill I’ve yet to learn but I’m hoping to find in my education.