Illness Is Our Human Story

The death of the author and neurologist Oliver Sacks has served as an occasion to reflect on his writing and the mystical territory that it elucidated. Sacks intertwined his observations about neurologic conditions specifically and the larger human condition more generally. He found beauty and brilliance in that commingling.

But the true power of his tales lay in the fact that he anchored his writing in case histories. The symptoms Sacks described did not occur in a tidy algorithmic vacuum in which they were observed, categorized, diagnosed, and treated. They were conditions that human beings and their loved ones were afflicted by and endured. The disease trajectories were often perplexing and erratic. The emotions that accompanied them — of the patient, of the family, even of the treating physician — were often messy. Because of this, the humanity of the conditions Sacks described shone through.

Despite Sacks’s body of work as a model of potent revelation, the use of the case history as a means of understanding illness is waning. At best, the practice is falling out of fashion; at worst it is disparaged as irrelevant, even unethical. In a recent Medscape article entitled “Don’t Abandon the Case Report in the Race for Big Data,” the Harvard nephrologist Julian Seifter bemoans the diminished presence of case-study presentations, which have historically been the pedagogical core of medical grand rounds. This “disappearance of the case,” Seifter writes, “is part of a widespread tendency to reduce the number of such reports in journals and lectures.” As a physician-writer who utilizes case histories and believes deeply in their value, I am troubled by this trend.

Part of the problem is that case histories have fallen victim to what the Dartmouth anthropologist Sienna Craig has alluringly called “the fetishism of data.” The culture of medicine races toward precise biological and biochemical explanations of illness, evidence-based practices, and standardized approaches to patient care.

There is, of course, value in this movement. As physicians we should utilize every speck of what science teaches us about the ways that our fallible bodies become sick and injured. And we should know what tools we have at hand to heal those bodies, cure them, shore them up, and failing all else, bring them peace. The checklists in medicine for which Atul Gawande famously advocates should absolutely be deployed to avoid preventable medical errors. Surgical fields should be set up in a routinized way to ensure sterile conditions. Hospital pharmacies should methodically check medication lists to prevent dangerous drug interactions. Operative sites (right leg or left leg?) should be confirmed multiple times before the first incision.

And yet this data-driven, evidence-based approach — or fetish — does not always suffice. It does not tell the whole story. My own writing is moored in the least certain moments of my medical practice, of which there are many. This means neither that I am an ineffectual doctor nor that I lack a solid grip on the medical data available to me. It means that in spite of my knowledge and training, there are moments in the course of any disease that do not fit neatly into data sets; that do not correspond with the medical literature. As a physician, I am called upon to help my patients, even so.

As medicine moves toward diagnosis-by-formula and treatment-by-checklist, we are creating an illusion that the body is predictable, even when infected, or wounded, or dying. Yet our own experiences — as we see people die from illnesses that should not be fatal and recover from injuries that no one should survive — have taught us otherwise. Case histories allow us to learn what the outlier has to teach us. Aggregated data skew toward the mean, but the real story — the true discovery — is often on the periphery.

The shift away from using case histories in medical education also undermines our students by falsely diminishing the ambiguity that is a constant presence in the practice of medicine. The charge of medical education is to lead students from their undergraduate biochemistry equations and the correct-incorrect binary answers of the MCAT to the murkier realm of the body, where students must put that knowledge to use.

Medical practice is made more difficult — as it should be — by the fact that a physician’s actions affect a person’s life, its quality, its duration. Sometimes that impact will be heroic. Sometimes it will be tragic. Often it will be unsatisfyingly in between: The medicine that is the “right” treatment for a young woman’s bipolar illness is not the right intervention if the side effects cause her to skip every other dose. The risk of erectile dysfunction following identical surgeries for prostate cancer will be blithely glossed over by one patient and will cause another to forego the procedure altogether. No algorithm guides our students to know which man will make which choice. Case histories provide context and deeper meaning that can reveal how the best treatment for one patient may be the worst treatment for another.

If case histories have fallen victim to the fetishism of data, they have also fallen victim to the fetishism of privacy. As with many protective impulses, the inclination to preserve patient privacy at all costs emerged out of flagrant disregard for the sensitivity of personal medical situations and the irresponsible misuse of health information.

My own discipline of psychiatry has a particularly inglorious track record when it comes to respecting patients’ rights and privacy. Indeed, the examples stretch from the appalling historical practice of London’s Bethlem Hospital selling tickets to the public so that spectators could come gape at the mentally ill people contained within, all the way to requirement in some states that psychiatrists release the names of certain patients, in order to construct a database meant to prevent mentally ill Americans from buying guns.

That all patients — psychiatric and otherwise — deserve appropriate protection and privacy is obvious. However, there are those who would argue that any physician who writes about a patient encounter violates the patient’s privacy, even when identifying details are obfuscated or eliminated. Those who hold this perspective often insist that the case history belongs to the patient and hence may only be told by her or his own choosing.

Sacks himself was not immune from this criticism, and many of his detractors cited his writing about patients as opportunistic and exploitative. The most well-known (and perhaps most scathing) of these attacks was levied by the disability-rights advocate Tom Shakespeare. Shakespeare, riffing off of Sacks’s famous book The Man Who Mistook His Wife for a Hat, called Sacks “the man who mistook his patients for a literary career.”

I have given dozens of readings and lectures as a physician-writer. All of them have included some elements of case histories. In every Q&A session save one, I have been asked about the ethics and practice of writing about patients.

My approach to answering this question has changed as my own thinking about the issue has deepened and become more steadfast and clear. Initially I relied on the longstanding traditions of responsible medical writing. Physicians had, in good faith, either scrupulously de-identified their patients or had obtained consent from them. Those seemed like good methods to me. However, like algorithms and checklists, I found they were also methods that could not universally be applied.

I learned this lesson on a National Public Radio call-in show after the publication of my first book, Body of Work. The book was a meditation on my experience of dissecting a cadaver as a first-year medical student at Brown University. One of the book’s central themes lay in the fact that the cadaver to which my anatomy group had been assigned had no belly button. I loved this small fact and found the mystery behind it evocative and beautiful. Why would an elderly woman not have an umbilicus? Even though the anatomical geographies of the human body had long ago been charted and laid bare, this fact was like a small rebellious cry: There are things about individual bodies that we still cannot know. As we racked our brains for an explanation, my classmate, in a moment of genius, said matter-of-factly: “Maybe we got Eve.” And so, to us, Eve she became. The perfect metaphor for the person who was the conduit for my earliest medical knowledge and my transition into medicine: first woman, source of forbidden knowledge, mother of all.

As I was speaking about the book and about my relationship with Eve on the NPR show, the host took a call from the phone lines. “I live in Rhode Island,” the caller began, “and my mother donated her body to Brown Medical School.” A panicked thought immediately raced though my mind: He’s about to say, “And she didn’t have a belly button.” Naïve as it sounds in retrospect, I had not realized that Eve’s lack of an umbilicus could be an identifying detail that made her potentially recognizable.

As it turned out, the caller said something about his mother and my book that had nothing to do with the cadaver I dissected or her umbilicus. Nonetheless, for a long time afterward, I was paralyzed by this conundrum: How could I be sure that I had truly de-identified someone as I moved forward in my own literary career? How could I obtain consent from a patient who was long gone from my care, or who had been deemed incompetent to make his or her own decisions, or who, like Eve, had died?

In the midst of this questioning, I was invited to speak on various panels considering the topic. The titles of the panels themselves suggested the dishonorable light in which doctors who wrote about patients could be cast: “The Physician-Writer, Artist or Thief?” was one; “The Ethics of Writing About Patients: Whose Story Is It, Theirs or Yours?” was another. I grew increasingly frustrated by the question, and increasingly sure that I could write about my encounters with patients in a respectful and ethical way. Nonetheless, I had trouble articulating the origins of my certainty with clarity. That is, until the Obamacare debate began.

I work as an inpatient psychiatrist on two locked units of a freestanding psychiatric hospital. The hospital classifies these as “intensive treatment units” — essentially psychiatric versions of the ICU. The patients that I treat are very psychotic, very manic, or actively trying to hurt themselves or other people. Many of them have chronic illnesses that have resulted in significant functional disability and a markedly diminished quality of life. Many suffer unnecessarily as a result of inadequate access to outpatient mental-health care.

As the Affordable Care Act debate raged on, I sat at dinner parties or in train cars or on the youth-soccer-field sidelines and seethed. Well-insured people around me complained about the tax increases they might face if Obamacare were implemented, or they would opine about how mental-health parity laws placed an impossible burden on small businesses and therefore would stifle growth.

But unless I entered into the discussion, there was no mention of the indignities and suffering endured by the uninsured or underinsured mentally ill. Part of this silence surely arose from the stigma that people with mental illness face: A valiant struggle against untreated depression is not heralded with the same societal admiration and empathy that we drum up for a struggle against cancer.

Part of the silence, too, is the result of the voicelessness of so many who suffer from mental illness. There are, to be sure, riveting firsthand accounts. The memoirs of Kay Redfield Jamison (An Unquiet Mind), Andrew Solomon (The Noonday Demon), and Elyn R. Saks (The Center Cannot Hold) are unsurpassed in their gorgeous, heartbreaking descriptions of bipolar disorder, major depression, and schizophrenia, respectively. But their authors are exceptional thinkers and writers: Jamison a Johns Hopkins professor of psychiatry, Solomon a National Book Award winner, Saks a professor at the University of Southern California Law School.

What of those — like most of my patients — whose psychiatric symptoms make them less apt or less able to tell their stories in a way that can be widely heard and understood? The man who is so depressed that he cannot bring himself to eat or drink or shower is unable to blog about his illness trajectory. The woman who is plagued by hallucinations and who fears that everything she says is being recorded by the CIA will face different obstacles in sharing the story of her illness than someone who undergoes a mastectomy for breast cancer. My intellectually disabled patient who is minimally verbal but who has been hospitalized repeatedly for aggression has no ability to convey that the funding of his group home has been cut, resulting in fewer workers, less programming, and a less well-trained staff.

If I don’t tell my patients’ stories, then who will?

All nonfiction writing carries risks and responsibilities. Yes, I must be vigilant in protecting my patients’ privacy and not betraying their confidence in me. But there are also ethical implications in choosing not to share what my profession allows me to see and know. Not writing the stories of my encounters with patients eliminates the most powerful opportunity I have to advocate on their behalf.

Asking “whose story is it?” creates a false dichotomy — medical narrative can include both the first-person story of a person’s illness and the story observed by the person who tries to cure it or alleviate the suffering it causes. Illness is our human story, and it cannot be fully told by data, by numbers or graphs, by trends or algorithms. The story is made more potent — and more real — by the individual variation of our narratives.

The New York Times obituary of Oliver Sacks quoted a response he gave to having been asked how he would like to be remembered in 100 years. “I would like it to be thought that I had listened carefully to what patients and others have told me,” Sacks said, “that I’ve tried to imagine what it was like for them, and that I tried to convey this. And,” he added, “to use a biblical term, bore witness.”

The charge for physicians to bear witness ought to be one of Sacks’s most lasting legacies, and we should take up the charge by standing firm in the value of writing about specific symptoms experienced by specific patients. Case histories do not supplant data, nor do they trump patients’ own narratives. But they do teach patients and physicians alike what is to be learned from the individual and from the margins.

Christine Montross is an assistant professor of psychiatry and human behavior at Brown University.