Not long ago, I was listening to an "NPR" segment about patients getting easier access to their medical records . Being a doctor and a patient, my first thought was, what a great idea. But then I wondered how helpful it really would be for my patients to read my notes. Could it somehow harm them to share my detailed psychiatric conclusions and thoughts?
During my training, I learned to take notes on patients so I could keep track of their progress and communicate with other doctors. These notes were never intended for the patient to see. But times have changed, and now insurance companies review notes to justify billing, and notes are sometimes used to ensure quality of care. Unfortunately, some mental health professionals still don't consider the potential impact their notes could have if patients were to read them. What if someone learned from his doctor's note that he was a help-rejecting demander who suffered from primitive oral rage? Ouch ... that could hurt ... if he figured out what that means.
Many doctors were trained in a tradition of benign paternalism. This means they take care of their patients, do their best for them, but they're not expected to explain everything they do. And some have an unfortunate attitude that patients couldn't possibly understand their secret doctor language anyway. Wouldn't the patients have to go to medical school and complete residency training first? By embracing this attitude, doctors thought they were protecting their patients from the truth.
When the first major genetic risk for Alzheimer's disease, apolipoprotein E-4 or APOE-4, was discovered in the 1990s, the leading experts of the day advised patients not to obtain their test results. The experts feared that the information could somehow harm the patient psychologically. Years later, a large-scale longitudinal study found that when people were informed of their genetic risk for Alzheimer's disease, they didn't get any more depressed or anxious than a control group.
That secret doctor language stuff doesn't fly anymore. Many patients know as much as or even more than the doctor about the latest diagnoses and treatments, thanks to WebMD, Mayoclinic.com, medical television shows and a host of other healthcare information sources. And many patients want to know what's wrong with them and how to take care of it. It gives them a feeling of involvement and control. Of course, doctors do give their patients this information by talking with them and explaining the details, but rarely by handing over a copy of the complete medical record.
In my practice, our group has revised the templates we use for reports so that now patients can better understand their results should they request to see their records. Also, when we write notes of any kind, we try to ask ourselves, "How would I feel if this were a medical note about me?" Of course, we have to be accurate in what we write, but we can also be mindful of how we phrase the information. Did the patient really have "severe behavioral aberrations?" It might be better to write that he presented with rapid speech and appeared fidgety as he whispered that aliens were following him.
Many years ago, I was treating a patient with borderline personality disorder. Borderlines are people whose psychological state straddles the line between normal anxiety and psychosis. Under stress, they tend to distort reality and have delusions and hallucinations. This patient was coming to therapy once a week and her behavior was unpredictable. At the beginning of one session, she stomped into my office, threw a magazine on the coffee table and shouted, "Have you seen this article?"
The magazine's cover teased a feature story about borderline personality disorder. I assumed that she was enraged that the secret doctor language had been revealed to her and that perhaps by not sharing enough information with her myself, I had behaved like one of these paternalistic psychiatrists who throw around pejorative labels in their notes about their patients, more interested in keeping their secrets than in healing their patients.
With trepidation, I said, "No, I haven't read that article. What did you think about it?"
She calmed down and said, "It was such a relief to read it. Now I see that other people experience what I do. I don't feel so alone anymore."
Gary Small, M.D., is a professor of psychiatry at UCLA, and author of the forthcoming book (Morrow, September, 2010), "The Naked Lady Who Stood on Her Head: A Psychiatrist's Stories of His Most Bizarre Cases."