by Danielle Ofri
Some years back, we admitted a middle-aged French woman with advanced lung cancer who was in acute respiratory distress. It was not clear from her x-ray whether this was from her cancer progressing or from severe pneumonia. Whichever the case, she needed to be intubated, and soon.
Before we could put the tube down her throat, however, she insisted on dictating her last will and testament. Between wispy gasps of breath, she told us who should get her linens and her artwork, and where exactly in Paris she wanted to be buried.
I scribbled this down as fast as I could as the anesthesiologist hovered over us, endotracheal tube in hand. The patient dictated the specifics of her burial and the arrondissement of the least objectionable funeral home, gently chiding my substandard French spelling. My students and residents stood at the other side of the bed, eying the proceedings nervously.
When the patient finished this task, she took on a stern tone. “Seven days,” she told us, with as much heft as she could gather in her increasingly friable voice. Seven days of treatment was all she would permit. “If I am not better in seven days,” she said, “take the breathing tube out.”
If this was pneumonia, seven days might be enough time for her to recover. But if this was progression of her cancer, the seventh day could be her last.
As the bedside ventilator was heaving to life and the syringes of sedative drawn up, she made me swear that I would take out the tube on the seventh day. No matter what.
To this day I have never been faced with a more agonizing split-second decision. She stared at me with deadly piercing green eyes, as her neck muscles sputtered with her choppy respiratory efforts. What could I do but nod my assent?
The tube went in, and all at once her body was quiet, her voice stilled.
As the team filed uneasily from the room, there was the sudden icy realization that, if it was cancer and not pneumonia obliterating her lungs, the words that had just transpired between us would likely be her last words ever spoken. If our patient did not get better in seven days, we would be the possessors of her final words. Like an anvil settling cumbersomely onto the gut, this recognition bore down on each of us: We would be carrying her final words to our final days.
Easing the Burden of an Untold Story
When I left the hospital that evening, there was a ragged, splintering sensation within me, the unbalanced feeling of having plunged further into the depths than I had been prepared for.
I suppose there were many options available for dealing with the stress of that day: I could have had a drink, gone to the gym, taken a nap, kicked the dog, or bawled my eyes out. But I remember being overcome by a compulsion that I had never had before—and that was to write.
I had done a little writing at that point, but mainly using memories from years past. This was the first time that I had experienced something that compelled me to write immediately. In retrospect, I can see that it was the urge—the necessity—to engage back into the real world. I chose to write a letter to a friend, the kind that starts: “I just have to tell you what happened at work today.…” In one sitting I wrote the entire story. Of course, at that moment, I did not realize that it was a story; it was just an e-mail to a friend. But in fact it was a story—with a character, a setting, and a tense plot.
One of Anton Chekhov’s1 most memorably stories is “Misery,” which opens with the quote: “To whom shall I tell my grief?” It is the story of Iona, a sledge driver, who is ferrying late-night party revelers on a snowy, Siberian night. But his young son has died that week, and he desperately wants—needs—to tell the story to someone. None of the passengers, however, are interested in hearing it. They are too caught up in their merriment and petty squabbles. Iona rides all night with his misery, finding no outlet. Finally, in the stable, at the end of his long, lonely shift, he tells his story to his horse. The horse listens patiently and respectfully.
When I e-mailed my story to a friend, I did not get any immediate reply or comfort. But it was enough simply to tell the story. Telling the story was enough to reengage in the world, to tug back the loose ends of my soul enough that I could take a deep breath, enough that I could sit with myself for the rest of the night, enough that I could face the next day in the ICU.
Stories in Medicine Are Medicine
So much of medicine is about stories—the ones we hear, the ones we tell, the ones we participate in—that it is no accident that doctors and nurses are attracted to stories. The rising popularity of literary sections of medical journals is illustrative. These stories often have much more in common with what we actually do and how we actually live our lives as caregivers than does the latest randomized controlled trial, no matter how clinically relevant the data are.
The attraction and desire go beyond stories that tell of life in medicine. Great works of literature have an intrinsic appeal to medical professionals, even when they are not about medicine. The sense of story and character is so much a part of our lives as caregivers.
Now, one could argue that any human being who lives and breathes would find some resonance in story and character. As a writer, I cannot dispute this—and I certainly would not want to—but I would suggest that doctors and nurses spend much more of their lives immersed in story and narrative than the average working person does. For readers married to accountants, how many exciting stories does your spouse bring home at the end of the day? There just is not as much drama in net asset dispersion and fixed-cost derivatives.
It is the stories in our work that provide meaning to much of our daily lives. Over the course of our careers, we accumulate hundreds, thousands, of stories—stories of our patients, stories of our colleagues, stories of life in the hospital, stories that we play a role in, myths and legends that circulate the wards as slyly and efficaciously as MRSA. After a while, these stories can sometimes weigh on us, feel like they are overflowing, and we are suddenly gripped by a desperate desire—like Chekhov’s Iona—to tell someone, to share these stories. The recipient could be a spouse, a student, a coworker, or a hapless fellow traveler on the subway.
The medical students profiled in the article by Wells and colleagues2 [[who posted patient stories on social media]] are overcome by that same desperate desire. Although there is surely an element of shock value in the stories that medical professionals choose to share, the compulsion to tell the story is largely motivated by the profound emotions kindled by the clinical experience. Those in the medical community—and medical schools in particular—need to recognize and acknowledge the storytelling imperative.
I am often asked about the ethics of writing about patients. My standard reply is that you can write about anyone and anything you want, but whether you publish is an entirely different question. Consent from the patient is the most obvious first step, but for a host of reasons, explicit consent often is not possible. Changing identifying characteristics is a commonly accepted tool. Often, the specifics of character—so essential in fiction—are actually less critical in these sorts of stories and can easily be altered without compromising the main thrust.
But the main question I ask myself is whether the story is a respectful rendering of the patient. If the patient should somehow come across this, would he or she feel honored or exploited? Does this story have the potential to enrich discourse, or is it just tabloid fare? There is obviously subjectivity here, but if I have any sense that a patient might be hurt, then the story joins the esteemed and dusty collection under the bed.
Social media adds a new twist to this. Exponential amplification combined with lack of space for nuance is a toxic brew. Wells and colleagues correctly point out that medical educators need to emphasize this with trainees. The Health Insurance Portability and Accountability Act is a valid concern, but the meaning of professionalism is that we cleave to the spirit of the law, not just the letter of the law. Our primary duty is toward our patients, not to our writing careers or our online following.
As Iona learned, it is the telling of the story, not its propagation, that is our human compulsion. Writing a story privately or sharing with a small group of colleagues may be enough. A story can exude immense power even in the damp hush of a barn, with no echoes other than placid equine mastications.
One Caregiver, One Patient, One Room, One Story
The impulse to tell a story is innate in the human race. We in medicine are particularly drawn to stories because these are what our patients bring to us. We hold our patients’ stories—their words, their voices, their facial expressions, their fears, their needs, their trust. It is like cupping a butterfly in your palm, the physical tension of clenched fingers in a disconcerting balance against the requisite gentleness to protect the fragile creature.
We are part of these stories, as they are a part of us. No matter how efficient medicine becomes, no matter how computerized, automated, algorithmed, wireless, evidence based, or “QA’ed” it becomes, medicine will always boil down to one caregiver with one patient, in one room, with one story. This can be both the passion and the peril of medicine. (from Academic Medicine)