Signing Consent Forms

I saw something today that I’ve never seen before. There are, of course, consent forms that patients must read and sign before participating in any of the studies or sub-studies. Most of the patients have at least a primary education, but older patients may not, and the nurses generally read the forms to all of the patients, in part to help those who are not literate. Patients need to write their name and the date, and I’d seen a few patients who did not know how to do that (one man yesterday, for example, inked his thumbprint on the signature line, and a nurse not involved in our organization came to discuss his understanding of the study and then co-signed). There is no embarrassment or surprise over this, as best I can tell.

But today a middle-aged woman came in. This patient had never learned to read or write her name, either, but she was clearly well known to the nurse. With little discussion, the nurse wrote the patient’s name in large letters at the top of the page. The patient then painstakingly copied her own name, not letter by letter, but as a series of connecting lines, copied by sight—draw the left-most line of the letter “A,” look back up and draw the middle bar, look back up and draw the right-most line. It took at least 8 or 9 minutes for her to copy her name, and another 3 or 4 to copy the numbers of the date. I realized that I had never thought much about exactly what it means to be totally illiterate; even when I watched patients make their marks rather than write their names, it did not make anywhere near the same impression. This woman was so determined, laughing a little about how slow she was (like grinning at me and shaking her head when she finished the name and realized she still needed to do the date). Because we had the luxury of time, she was able to maintain her…dignity? independence?…I think, mostly, control over the situation.