Do dead patients have a right to medical privacy?
I never met Alice Hood Hammatt. She died in 1941, long before I was born. But I have learned a great deal about her.
I know intimate details of her medical history, including the depression, anxiety, and other symptoms of mental illness that sent her life into a tailspin. I am familiar with the treatments she underwent to combat her mental illness. In 1936, for instance, she became the first American ever to receive a prefrontal lobotomy, at the hands of neuropsychiatrist Walter Freeman, M.D.
I went public with Alice Hammatt’s name and medical history in 2005, when my biography of Freeman, The Lobotomist: A Maverick Medical Genius and His Tragic Quest to Rid the World of Mental Illness, was published. In as much detail as I could muster, I recounted her history of mental troubles, specifics of her personal and married life, details of her lobotomy, and details of her life after psychiatric surgery. I included in the book the names and medical histories of many more of Freeman’s patients, as well.
In doing so, I broke ranks with some medical researchers and reporters who believe it is unethical to reveal identifying information about patients — especially psychiatric patients — without their clear consent. And a dead patient cannot give consent. That’s why a large number of articles and books about medicine and medical procedures identify patients only by initials or by using invented names.
An unexpected dilemma
When I began my research on The Lobotomist, I knew that my work would force me to examine tough ethical issues. I expected to question Freeman’s ethics as the man most responsible for the widespread use of lobotomy during the 1940s and ‘50s, but I never dreamed the book would require me to scrutinize my own rules of professional conduct.
My personal ethical dilemma arose immediately after I arrived at the archives of George Washington University, which holds most of Freeman’s papers. There, much to my surprise, I found boxes full of letters and Christmas cards written to the physician by his patients and their families. Their names and details of their illnesses were there on record for anyone to see. (The University, on the other hand, limits access to actual medical records and denied my requests to view them.) This correspondence, often warm and effusive, contradicted my image of lobotomy patients as hopelessly damaged human vegetables. I learned of patients who had returned to their families after their operations and had sometimes resumed their lives as homemakers, parents, teachers, musicians, and even practicing physicians. Some patients welcomed visits from Freeman and affectionately regarded him as a member of their extended family.
I still feel uneasy with my choice at times and have dreaded the day a named lobotomy patient’s child or grandchild shows up to berate me.
To be sure, I also found information in Freeman’s papers about patients whose lobotomies left them in far worse condition, disabled by emotional numbness, an inability to plan ahead, eating disorders, and hopeless inertia. My aim was to balance the good with the bad — to show the results of Freeman’s work and the health of his patients in their full variety and complexity. I had to describe many lobotomy cases, and I wanted to break the preconceptions of my readers by telling the stories of those patients as realistically as I could. If readers could think of Freeman’s patients less as generically lobotomized people and more as spouses, parents, and children whose lives had been disrupted by mental illness, then readers could more easily understand lobotomy’s attractions and limitations.
What has been gained
“A.H.” or “Mrs. H.” could never live in a reader’s imagination as vividly as Alice Hood Hammatt, who grew up in the real city of Topeka, Kansas, loved going to the theater, and had a husband named Theodore. When I weighed the benefits of illuminating patients’ lives by using their true names against the benefits of maintaining the secrecy of their identities, I believed that establishing the real humanity of patients won out. I decided, against the advice of a psychologist that in The Lobotomist I would use real names if I was certain the patient was deceased. (And in a few instances I used the names of living patients because their lobotomies had already been written about by other authors.)
I still feel uneasy with my choice at times and have dreaded the day a named lobotomy patient’s child or grandchild shows up to berate me. So far, that hasn't happened. Instead, I've received a steady stream of emails from people wanting help in locating the records of family members they know or suspect underwent lobotomies.
Readers, I hope, have benefited most from my choice. I know, though, that other writers and people in different professions disagree with my decisions. Do you?