The Other Side of the Bed Rail

• Physician-patient relations
• Knowledge, attitudes, practice
• Amyotrophic lateral sclerosis

I had certainly been in large medical centers before; there was no reason to feel overwhelmed. I myself am a well-trained internist from a large university—I knew the scene—but this summer morning was different. I was tired and scared. Just 2 weeks before, I had been told that the slurred speech that had been progressing for several months was probably caused by amyotrophic lateral sclerosis (ALS). They'd said 2 to 5 years, and as a physician I knew all too well the grim prognosis and disheartening lack of effective therapy associated with my diagnosis. At the urging of my family, I had come almost 2000 miles to receive a second opinion, but first, I had to undergo electromyography.

Again, I was no stranger to this uncomfortable test. I didn't look forward to the procedure, which Dr. L. would perform before my visit with the consulting neurologist, but I knew it was necessary, and I was resolute. My husband—a schoolteacher with little knowledge of physicians and hospitals except through me—accompanied me to the office. To my dismay, however, he was not allowed to go in with …