The Physician as Patient

There have always been times when I know that I don’t know best, though I also know that my honest counsel is important. It is up to me to tell a patient who wants to leave the hospital prematurely, or decline an important procedure or medication, exactly why I think that’s dangerous and imprudent—and then to do my utmost to trust, to teach, and to support if that patient continues to reason otherwise. Within the boundaries of safety and good practice, I take patients at their word about the physical pain they report to me, though that pain is sometimes hard for me to understand or imaginatively inhabit. This becomes complicated when many of the medications that treat pain are also dangerous or potentially addictive, but that very complication means that I need to listen harder, not less. The stakes are too high not to.

Even when a patient and I have roughly equal imaginative access to an experience—let’s say there’s a lump or a smudge in the lung or the breast; neither of us has ever undergone any kind of cancer workup or treatment before—what I can give is a geologist’s tour through the precise topography of our shared uncertainty. Here are the variables that impact the chance of this test being correct. Here are the variables that affect whether this treatment will work. And then, more important, I can walk my patient through the practicalities of being a person, not just a diagnosis, from How do you manage your pain on the “good days”? to Let’s think about how you would get to appointments. I don’t know what a patient values most until that patient tells me—and even after that, I have to remember that I may have misunderstood, or that the patient may yet have a change of mind.

In these conversations I’m constantly revising what I think I know and what I believe to be important. Even so, the pandemic has transformed my uncertainty and fallibility from an individual workman-like issue—not so different, at bottom, from the way I think about revising poems or essays—to a larger and heavier conundrum. And the stakes have never felt higher, though shared (for better or worse) with over 20 million health care workers in the United States and many more outside it. In spring 2020, when patients or their families were considering “code status” with me—that is, whether they would want chest compressions (CPR), electrical defibrillation, and other aggressive measures if they were to experience cardiac arrest—my own advice was informed by the one slim study available at the time, reporting on 136 patients in China. Only 2.9 percent of the patients in the survey with COVID who received CPR even survived thirty days beyond the event, and only one patient in the study had a “favorable neurological outcome” at thirty days. If patients asked what I thought, I focused on mirroring the values and statements that I’d heard from them—It sounds as if you’d rather die peacefully than endure a lot of intensive interventions that might not be successful, or It sounds as if being alive when your daughter gives birth is what you want to try for, even if the odds are extremely low—but if pressed for a distillation of the available mathematics, I’d often find ways to say that CPR seemed highly inadvisable.

In September 2020, a new and larger study came out on CPR in hospitalized COVID patients. The numbers were still dismal, but less so, and more nuanced: now 12 percent were surviving resuscitation, of which 7 percent had reasonably good neurological outcomes. Were we getting better at CPR for COVID patients or better at COVID treatment? Or were we changing our denominator because we had dissuaded some people from attempting CPR at all? Probably some of each. Odds were still poor for COVID patients receiving cardiopulmonary resuscitation. They are quite poor for nearly all patients, in fact: a reality that TV, film, and fiction rarely mirror. But the leap from the vanishingly small to the visibly small was rapid, and made me wonder what else I was saying and thinking as a clinician that might be disproved or modified in the near future.

This is not self-deprecation or a bashing of my profession: this is in fact what science is: not a body of knowledge, but a process of inquiry or revision, where evidence is gathered, examined, evaluated, and reevaluated. At the same time that clinicians were discovering through trial and error what COVID is, patients were doing the same. Gone was the usual head start that clinicians typically have in the race to comprehension, where my conception of, say, heart failure is informed by almost seventy years of thinking since the dawn of echocardiograms, and then further honed by some eleven thousand hours of practice on patients with hearts during medical residency and innumerable hours since then. Without our head start as clinicians, our reliance on citizen scientists becomes more urgent, our professional skepticism more uneasily maintained.

As we clinicians look at patients differently—look to them, in fact, for companionship in inquiry—so they, too, look at us differently. Doctors have become people, imperfect and embodied and struggling to keep it together in the mutually permeable worlds of home and hospital. We take the hospital home with us; we render makeshift homes out of the hospital during the exigencies of viral surges; we too vent on the internet sometimes.

As an individual physician, I find it scary to be so known and so seen, and to be held so accountable. If I am being honest, my way was smoother and my life more untrammeled under the old, hierarchical, paternal models of medicine. I’m sure that this is even more dramatically true for those whose daily work involves making the industrial and financial apparatus of the hospital and the clinic run. It’s time-consuming and inconvenient when patients peek behind the curtain. And yet I’m overjoyed by this moment of possibility and reconstruction, in which the medical field’s (relative) certitudes and (extensive) uncertainties are both on view, and are more open to public exploration.

I’ve come to realize that ultimately a physician’s purpose is not perfect certainty, but the relief of suffering. This runs contrary to one of the cornerstones of practice, which is the way that we habitually write about patients and “the case.” In medical training, one learns how to compose chart notes about patients, notes which follow formal conventions as exacting as those of a sonnet or villanelle. By documenting the “case” in a certain way, the physician walks the reader or listener through a series of clues so that by the end, an astute colleague would experience the same epiphany as the note’s author, and would agree with the diagnosis and therapy proposed in its conclusion. In the classic form, and certainly in teaching hospitals, the well-wrought note is written to convince. In the genre conventions of the note, as well as in everyday physician-speak, “symptoms” and “signs” are very different things. Symptoms are what the patient experiences (these slot into the early “subjective” sections of the note), signs are what the physician notes from the patient’s physical exam or test results (arranged in the note’s later “objective” portions). “Symptoms” of leukemia might include feeling a deep ache in one’s bones and noticing blood on the toothbrush. A “sign” of it is white blood cells with large, lumpy, purple-stained nuclei.

The arrangement of the note—first an account of the patient’s own remarks, then a more systematic “review of symptoms,” then the doctor’s “objective” exam, then the even more “objective” data derived from bodily fluids and radiographic pictures, and then finally a summarizing analysis—can imply a trajectory toward perfectibility. We started with this hopelessly primitive story, but then, thank goodness, we were able to move past it, find out what is really going on.

Much of this moving-past from patient story to test results is necessary. Of course our patients want something more than their own story to emerge from the encounter. Otherwise, they would have stayed home. The problem arises with the temptation among doctors to take these genre conventions of the relatively “subjective” and “objective” parts of the chart note too seriously, to see the data as a happy evolution beyond the mere tale. Because there are human and technological errors and blind spots to our data-gathering wherever we look.

It is the doctor’s job to be both accurate and precise: to discard errors when identified as such, and slowly to narrow the field of inquiry so that we come to hover over something like the right answer. During the pandemic, I thought a lot about dyspnea, or shortness of breath, and how difficult it can be to wed a love of precision and accuracy with a commitment to the truth-status of patient subjectivity. Some of my patients with COVID had dyspnea; others did not, despite sometimes having much less oxygen and more carbon dioxide in their blood than healthy people ordinarily have. (Carbon dioxide, even more than oxygen, is the gas in the blood that can trigger these feelings of “air hunger.”) Dyspnea is a symptom—I know a patient is experiencing it because the patient tells me so—though it has correlating signs such as quicker, more effortful breaths and a faster pulse.

It is salutary to feel a suffering panic located around your chest when you are sufficiently winded or short of breath, because it makes it more likely that you will alert someone to your emergency and get to a hospital. The phenomenon of “silent hypoxia,” present in COVID-19 as in other lung diseases, scared clinicians and the broader public because it meant that some people with life-threatening illness at home might not feel subjectively distressed enough to seek medical care. In the aftermath of respiratory illness, sometimes symptoms of dyspnea persist in ways that are prolonged or disproportionate to the “signs” that doctors can easily observe—a challenge for clinicians but especially for patients. The duration and severity with which different patients will feel winded after illness remains an unruly knot to untangle.

Suffering doesn’t enlarge us, necessarily—it has no moral meaning per se. But sometimes it has a practical, biological one. Like, Call 911. Or in the case of the hospitalized patient, I can’t possibly go home yet. One change the pandemic has brought with it: hospital doctors’ decision-making regarding a patient’s readiness to be discharged home, always a critical variable, has become, I think, more nuanced and more richly imagined, as we cultivate the habit of thinking through a patient’s circumstances in the days after that patient leaves inpatient care. “Signs,” the supposedly objective points of data, will not be enough to tell us. A patient who lives alone, perhaps in a walk-up apartment, perhaps without nearby family or friends, and who feels too dyspneic to prepare a meal or totter around the home will likely not fare well, whatever the numbers and the images say. The patient’s experience in his or her body is not the fallible part of the story that must be revised and moved past. It is, however inconveniently, the final word.

Practicing medicine is for me an exercise in the interrogative mood. I am as good as the questions I ask. I want a post-pandemic climate in medicine to be one in which the most valued questions are the ones that patients are asking of us, the ones that they feel have maximum interrogative urgency. Some of these questions will be about the mismatch between, on the one hand, what we currently know about disease states as objects of detached contemplation, and, on the other, how patients experience those same illnesses. And some will be about how we clinicians plan to maintain our hard-won epistemic humility, the large dose of uncertainty that all of us in the profession were exposed to in the early months of the pandemic. It is from that position of self-aware, imperfect knowledge—that doctors are people, flawed by the same human muck as everyone else—that our best ideas about how to fix past errors will come.

Hoping for the best while imagining the worst seems to me to be the most human, the most tenderly fallible, and the best way to think about our collective future as embodied actors in medicine. We will sometimes fall ill, and we won’t know how it happened. Our patients will tell us things that we cannot yet interpret, sending us to new questions, new shadings in the interrogative mood. We will sometimes be granted reprieves from the cycles of infection and contagion, and we won’t know why. Now is the time to catch our collective breath, though we still feel strangely winded. The symptoms of our collective distress are real, and teacherly—this moment wants to tell us something, if we can only listen once again to the history of the case.