Notes Towards a Compassionate Patience
To be a good doctor means bringing to the relationship with your patients constant reminders of what it means to be sick, scared, and vulnerable. More thoughts on that later. But as in all functional and productive relationships, the giving must be a two-way street. Just as we want our doctors to understand what we are going through, so too must patients bring to the relationship a compassionate and informed understanding of what it is like, day in and out, to be a doctor.
While this might sound easy, in fact most of what we know comes not from actual doctors but from the people who play them on TV. These doctors are flawed in the most glamorous of ways. And while they pretend before their colleagues that they don't care about their patients as individuals, we see them, in montage, up all night, wrestling with a difficult diagnosis between shots of whiskey and handfuls of Vicadin until—just as kidneys are failing and the hour is coming to its close—the solution is found. Sure they will be strung out the next day for the press conference or the inquest, but at least they will be able to sleep easy knowing they solved the Impossible Case.
Of course, being a doctor bears little to no relationship to Dr. House or any other TV doctor. Real doctors don't pop Vicadin or call their patients liars to their face. But neither do real doctors stay up all night wrestling with a particularly difficult case. Because real doctors are too busy staying up all night wrestling with their own kid's ear infection, or the malpractice suit that won't go away, or their struggling marriage, or any one of the stresses of every day life. They will be fretting over your particular case in the morning, I promise. But first they need to replace the administrative assistant or the broken fax machine (who besides doctors still has fax machines?).
Even after the day properly begins, of course, they have headaches most patients can only imagine. For the patient the time a doctor spends with them is what the doctor's job is all about. This is a fantasy, albeit a reasonable one. I am a professor of English, and my students believe (as they should) that my time and energy is first and foremost devoted to them and their individual successes. I encourage this fantasy to the best of my abilities, and in truth I often wish it were a reality. But the reality is that I am rewarded financially for everything but teaching. That does not make me stop caring about teaching, but it does put inevitable limits on how much of myself I can give to my individual students.
The same is true for my doctors. Just as I went into my career to teach, they went into theirs to care for patients. But along the way other rewards emerged—research, collaboration with colleagues, international conferences, building a business or advancing a career within a larger organization.
Perhaps more urgently, other pressures emerged as well, pressures which often exceed even the urgent appeals of desperate patients: mountains of paperwork to file, new electronic protocols to learn, changing insurance policies to battle, hospital bureaucracies to manage, new literature to read, and new technologies to master.
We can complain, as patients, about all the time and resources these pressures command, and to some degree we are right to do so. But the same literature that slices invaluable minutes off the office time a doctor can share with a patient are also the tools that save lives—introducing even doctors far from research hospitals to new treatments, new diseases, new warnings about side effects of medicines.
And we are living in a time when new conditions are being discovered at a rate that is truly stunning, at least from this layperson's perspective. In 2014, for example, 30 new gene defects were added to the roster of primary immunodeficiencies, bringing the total number of known defects up to 250. That means a doctor working in the field who took a year off from keeping up with research could fail to correctly diagnose a patient whose conditions were now known. The patient would be told that the tests for immunodeficiency had come back negative and that at least from an immunological standpoint there was nothing wrong. The patient would be told by their primary care provider that she was now out of options, that perhaps psychological care was probably what was called for at this juncture. The patient would suffer, alone and likely for the rest of her life, from a condition that had a name and perhaps a therapeutic treatment.
Or take a patient in her early 20s exhibiting sudden and occasionally violent mood and personality swings, along with a range of neurological symptoms, including numbness, partial paralysis, and seizures. Before 2007 when anti-NMDA receptor encephalitis was first identified, patients suffering from this disease usually ended up in asylums, diagnosed with schizophrenia, or, in earlier centuries, subjected to exorcisms. Even after 2007, of course, the disease remained a challenge to identify, especially when a patient was sent to a highly-regarded neurologist who had not kept up with the literature. I am thinking here, of course, of the harrowing story Susannah Cahalan tells of her own diagnostic process in Brain on Fire, when a neurologist dismissed her with the diagnosis that she was suffering from the effects of alcohol withdrawal, even as her own antibodies were attacking her brain.
Today of course, anti-NMDA receptor encephalitis is diagnosed with increasing efficacy because of the growing body of literature—both the medical literature and the patient narratives—in this case, Cahalan's best-selling memoir. Now the disease is sufficiently "visible" to even serve as a crucial plot-point in the first season of Hannibal. Thanks to doctors publishing and reading their discoveries and patients telling their own stories, an individual today demonstrating symptoms of anti-NMDA receptor encephalitis is likely to receive diagnosis and treatment in a matter of weeks or even days, preventing life-long brain damage or death for the growing number of patients we now know to have suffered from a disease that medically did not "exist" only nine years ago.
One can go on in this vein with numerous examples of medical conditions and treatments newly named or treated. I mentioned in an earlier entry that had I not been born after the introduction of corticosteroids I might well not have survived my childhood illnesses, and had I been born before the dissemination of modern antibiotics I would not have survived infancy. Thousands of patients in the 80s had to suffer the slings and humiliations of being told they had "yuppie flu" before specific gene markers were identified and the Chronic Fatigue Syndrome became at least a "real" disease (albeit one that still remains largely underfunded and researched). The pressures and demands of our accelerating and expanding understanding of the body and disease—especially on a genetic and microbiological level—takes time to keep up with, and not just for researchers.
Those of us old enough to remember when a doctor's visit could involve up to an hour of actual conversation with an actual doctor often leave our appointments today stunned by the realization that our total contact time with the doctor was only a few minutes (the whole visit, of course, likely took an hour or more of waiting, most of it in the solitary confinement of the examination room). We feel, and often rightly, that the doctor wasn't listening to us—that he had predetermined our complaints to be insignificant or transient and had already moved on to the next case even as he typed away into our online record while pretending to listen to our narrative.
The narrative medicine movement—which I wholeheartedly support both as a patient and a scholar—is premised on pushing back against this tendency in our medical care. But even as we push back and demand more time and space for patient's narratives (more on this in my next post), we as patients need also to keep in mind that the minutes we demand back for our individual narratives are minutes that quickly add up to many hours in the working life of a medical practitioner—hours and days they cannot spend keeping up with the literature, the new technology, and the new treatments that might save your life, or the life of the patient coming after you.
Compassionate understanding must go both ways if we are to rewire the dehumanization that is now endemic to our medical system (and, sadly, our modern society as a whole). And this can only begin with remembering that the doctor sitting across from you—even if only for a few minutes—is in the grips of a narrative much bigger and more complex than the one we see on TV. And, as impossible as this is for any individual to accept, it well might be that the condition from which you are suffering from does not yet have a name or even yet "exist" medically. But it also might be the case that your contributions (as storyteller, blood- and urine-giver, or statistical entry) will be the pebble that helps tilt the scales towards diagnosis for those who follow in your ungainly footsteps.