A cartoon of an angry looking physician, a spotted boy, and some anxious parents in The New Yorker reads, “If you connect the measles, it spells out, ‘My parents are idiots’.”
A facetious article in GomerBlog announces, “Big Pharma Admits They’re Just Trying to Kill Everyone with Vaccines.”
Even television host Stephen Colbert gets in on the make-fun-of-anti-vaxxers act, recently declaring, “The anti-vax movement has a lot of things that I love: Star power, science denial, and hipster appeal. ‘Cause penny-farthings and handlebar mustaches are cool, but nothing is more vintage than dying of rubella.”
In the wake of the spreading U.S. measles epidemic (traced in part to infected visitors to Disneyland), I’ve been seeing a lot of angry social media posts from my physician friends, all but calling those who don’t vaccinate their kids Mickey Mouse parents. As a pediatrician by training, I’ve been pretty angry too. It’s heartbreaking to see preventable diseases like polio, whooping cough, and measles once again threaten children in the U.S. As quite a few writers have noted, anti-vaccination is in many ways the choice of the über-privileged, a group for whom the medical advice of celebrities and mommy bloggers may hold more weight than that of their physicians. And that, understandably, makes doctors angry.
But after all the anger has been vented, and all the fun has been poked at these parents – who are often our patients, friends, neighbors, and even family members – what do we as a medical community do next?
Perhaps we begin to understand the anti-vax movement as but one more symptom of the growing disease of mistrust between patients and physicians in this country. Dr. Sherie Leng recently wrote about this mistrust as she reflected on the horrific murder of Brigham and Women’s cardiovascular surgeon Dr. Michael Davidson by the son of a deceased patient. In Dr. Leng’s words, “It is not just the death of one man that should enrage us. It is the erosion of trust and the decline of basic decency.”
And while that is true, the changing relationship between doctors and patients is, in part, an inevitable and good thing. Since the patient rights and health advocacy movements of the 1970s and ‘80s, we have seen a healthy resistance to paternalistic models of ‘doctor-knows-best’ medical practice in this country. Meanwhile, we physician-educators have had to play catch-up, developing new ways to train future doctors in approaching these more egalitarian, partnership-based health care relationships.
For greater than the last decade, I have been teaching in the health humanities, what at my institution is called narrative medicine. When asked to describe what I do in a nutshell, I often tell people that I teach clinicians to listen. In our increasingly busy, technologically driven medical practices, what becomes too often lost is the time-honored practice story-telling and story-witnessing. This skill set, always the cornerstone of the healing art, is even more critical in these days of shortened visit times, with the unending demands of electronic medical records and billing, and many patients lacking long-term, relationship-building medical homes.
So what part of the anti-vaccination story are we physicians failing to hear? Understandably, a lot of medicine’s response to anti-vaxxers has been the bewildered and frustrated cry, “but why don’t they believe the science?” Science shows us that vaccines don’t cause autism. Science shows us that vaccines are safe.
What we aren’t hearing, however, is that parents are scared and confused. What we aren’t recognizing is the fact that science and medicine sometimes let people down. Sometimes people with debilitating chronic pain are condescendingly brushed off by their physicians. Sometimes families overwhelmed by medical bills are shuffled from bureaucrat to bureaucrat, never given a helpful answer. Sometimes drugs are found to be more toxic than we first thought — think of thalidomide, or Accutane, or Vioxx. Sometimes patients are misdiagnosed, mis- or even maltreated (think of the infamous Tuskegee syphilis experiment, the DSM diagnosis of homosexuality as a disorder or the forced sterilization of people with cognitive disabilities).
Sometimes the science, the medicine, is wrong.
Not often, I hope. Not usually. But sometimes. It would be sheer hubris on our parts, an arrogance worthy only of a by-gone era of “doctor knows best” medicine, to admit otherwise. Thus, as much as we would like medicine to be infallible, it would be deeply lacking in narrative humility for us physicians to continue to tear our hair, asking, “Why don’t our patients blindly trust us?”
Perhaps part of the problem is that medicine as a profession is caught in the middle of a cultural shift. We are on the one hand in the midst of a market-driven, insurance-controlled era when patients are expected to be information-processing health care consumers and doctors revenue-generating workers evaluated by their efficiency rather than their bedside manner. On the other hand, physicians are often still expected to be god-like and medicine so perfect that even the death of a very ill, elderly patient is seen as a doctor’s fault.
The answer, then, must be finding a cultural middle-ground, where patients can both question and find relationships of trust; where physicians can admit professional or even personal fallibility — their humanity — while having the time and support to attend deeply, thoughtfully and knowledgeably to the ill.
Let’s stop Mickey-Mousing around, bartering insults and accusations. Let this measles outbreak be more than a tragedy that deepens misunderstandings between doctors and patients. Instead, let it be an awakening — a call to preserve that precious health care relationship between two human beings, each deeply listening, each deeply committed, on both sides of the stethoscope.
Or the vaccination syringe, as the case may be.
Because, as Hillary Clinton recently tweeted: “The science is clear: The earth is round, the sky is blue, and … Let’s protect all our kids.”
Sayantani DasGupta is a pediatrician.
