Danielle Ofri in her blog post, "Doctor-Writers: What Are the Ethics?' examines the complex issues in writing about patients. I am not a physician, but a psychologist and therapist who wrote a book Nasty, Brutish, and Long: Adventures in Old Age and the World of Eldercare about my work with residents of nursing homes--their stories, their culture, their life and death. I appreciate Ofri's comments, and she is spot on about the ethical challenge. I struggled with this every day for the year it took to write my book. In an Afterword for the book, which I am posting here, I outline my approach to the situation.
"Then I remembered it was not a Jewish novelist in his late twenties or early thirties called Tarnopol, but a nameless Italian-American poet in his forties that Spielvogel claimed to be describing (and diagnosing) for his colleagues." ---Philip Roth, My Life as a Man
Richard Nixon supposedly said, "Honesty is not always the best policy, but sometimes it's worth a try." In recent years, the honesty of personal histories has come under increasing scrutiny. Several memoir writers have exaggerated or fabricated details of their lives, and have suffered scorn-if not poverty-for their efforts. For the layperson, there is no law mandating truth, but the reader of memoirs expects at least a try at honesty. The medical professional who writes about patients has the paradoxically opposite obligation-fiction. We have to protect the confidentiality of our patients. HIPAA mandates that dishonesty is the best policy. There is a range of opinion about how to achieve this. At one extreme, some advocate written consent from any patient who is the object of a writing exercise. Even if consent is granted, there still is the obligation to disguise patients so they cannot be identified by either the casual or meticulous reader. In the case of writing about elderly residents of nursing homes, obtaining consent was not a practical possibility. I met many of the people I write about years ago, often for only a brief encounter. Many are deceased. To meet my ethical obligations to them, I relied on a variety of strategies to protect their identities and privacy. The patients in this book do not represent real people. Any resemblance to a particular person is accidental, inadvertent, and unintended. I have no doubt that some might read this book and say, "This is me," even if it isn't. I would count such recognition as an artistic success, and evidence that I have provided an accurate representation of the life and times of our elders. As the psychologists Clyde Kluckhorn and Henry Murray wrote more than sixty years ago, "Every man is in certain respects like all other men, like some other men, and like no other men."
Professional responsibilities aside, when writing about my personal life, the only impediment to exactness is the frailty of my memory.
Click here to read the first chapter of my book, Nasty, Brutish, and Long: Adventures in Old Age and the World of Eldercare (Avery/Penguin, 2009), it provides a unique, insider's perspective on aging in America. It is an account of my work as a psychologist in nursing homes, the story of caregiving to my frail, elderly parents--all to the accompaniment of ruminations on my own mortality. Thomas Lynch, author of The Undertaking calls it "A book for policy makers, caregivers, the halt and lame, the upright and unemcumbered: anyone who ever intends to get old."