Editor’s Note: This article was published on February 19, 2021, at NEJM.org.

Medicine and Society

No Cure without Care — Soothing Science Skepticism

List of authors.
  • Lisa Rosenbaum, M.D.

Introduction

A few weeks ago, I cared for a patient, Mr. C., who had a history of bleeding from antiplatelet therapy but remained at high risk for thrombosis. At the time we met, he had just been extubated and, still a bit loopy from the sedation, couldn’t give many details about the previous bleeds or thromboembolic events. But on one point he was completely lucid: “I don’t like medications,” he told me. “It’s an unnatural process.”

Alan Levinovitz, a professor of religious studies at James Madison University and author of the book Natural,1 explained to me that from an evolutionary standpoint, the instinctive nature of Mr. C.’s aversion is exactly the point. Because there is way too much information for our minds to process as we orient ourselves in the world, our brains have evolved shortcuts, or heuristics, to lighten our cognitive load. Although behavioral economics has focused attention on how heuristics can compromise decision making, we also can’t function without them. “You can’t be constantly figuring out what is dangerous and safe or who is trustworthy or who isn’t by crunching tons of data,” Levinovitz said.

A preference for the natural is one of countless heuristics people may use to make health-related decisions — about everything from birthing to taking medication to getting vaccinated. And though some heuristics lead to health-compromising decisions, Levinovitz cautions against dismissing all decision makers who use mental shortcuts as irrational. “It makes it seem like the defect when people disagree with you is an intellectual deficiency, or an absence of information,” he says. Instead, discordant health care decisions made by different people often reflect reliance on different heuristics to determine whom and what evidence to trust. Levinovitz’s mother, for instance, was initially hesitant to get vaccinated because of her distrust of Trump. “My mom was wrong,” he said, “but not because she is ignorant, immoral, or irrational. It’s because she is operating with a heuristic that in this context leads to a bad conclusion.”

Whereas many people’s fundamental heuristic for health-related decisions is to trust medical and scientific experts, vaccine hesitancy reminds us of the many competing forces informing people’s intuitions about health, be they religious, political, historical, or identity-based. To be clear, some of these forces are identifiable and should be addressed; the contribution of historical abuses and ongoing systemic racism to vaccine hesitancy in minority communities is a notable example. But in understanding people who simply have a feeling that Covid vaccines should be avoided, identifying specific heuristics matters less than simply recognizing the limits of data in shaping perceptions of truth. “We don’t make our decisions about what’s true based on an analysis of evidence,” Levinovitz emphasized. “It’s a profound misconception of how people figure out reality.”

Though Covid hasn’t changed human nature, its devastating consequences have highlighted the gap between what is true and what people believe. One memorable low for me was reading a South Dakota nurse’s description of patients who were critically ill with Covid but continued to insist the virus was a hoax until the moment they were intubated.2 If you can be denying the existence of a disease while you’re dying from it, what hope is there for science to persuade people unaffected by that disease to take it seriously enough to get vaccinated?

For some subset of the population, not much. But although people who are aggressively denying science and disregarding others’ health loom large in our minds, there are probably many more who are simply bewildered and no longer know whom or what to trust. Undoubtedly, current vaccine skepticism is partly rooted in factors specific to this moment and these particular vaccines. But to the extent that hesitancy also reflects deeper, longer-standing fractures in our relationship with the public, its exploration provides an opportunity to improve patient care in ways that go far beyond the pandemic.

Doing My Own Research

Ms. A., a woman in her 40s who previously worked as an anesthesia technician, opposes undergoing Covid vaccination. Referring generally to the contents of vaccines — and using a common heuristic about profit-driven actors — she asked, “Are those good for the human body or just good for someone’s pocket?” She described the corruption of the pharmaceutical industry and her related belief that physicians are all pawns, beholden to large corporations, unable to speak the truth even if we wanted to. Accordingly, she expressed both pity and disdain for people who blindly accept the recommendations of the scientific community. The essence of her approach to medical decisions echoed a refrain I hear often: “I need to do my own research.”

The first patient who said that to me was a relatively young man for whom I had recommended an implantable cardioverter–defibrillator. I thought, “Why do you need to do your own research when there have been well-conducted randomized, controlled trials, incorporated into guidelines, suggesting that this intervention will prolong your life?” But in the spirit of shared decision making and patient empowerment, I respected his decision and his right to make it. I have often wondered since, however, what doing your own research actually means in a world where being informed can so readily degenerate into being misinformed. Ms. A.’s research on vaccines, for instance, confirmed her suspicion that they contain impurities, including “human DNA from aborted babies” and antifreeze. Though these claims are patently false, they crystallize the startling discrepancy between the time, money, and effort behind a scientific recommendation and the ease with which it can be discredited. How has science become so vulnerable to such undoing?

Vaccine-confidence expert Heidi Larson frames the problem historically. Whereas during the Enlightenment, science was perceived as a way to liberate people from religious dogma, she says, “Today, science has become the new dogma.”3 Larson emphasizes that science can’t separate itself from culture, values, inequities, and power struggles.4 “People are craving a bit more emotion, a bit more religion, something they can put passion into.” Science has become devoid of feeling.5

Though science with feeling may seem entirely unscientific, Larson isn’t advocating a diminution in scientific rigor as much as a contextualization of science to make it feel more relevant to people’s lives. Rather than simply telling people they should get a Covid vaccine, for instance, Larson recommends beginning conversations by asking people how they’ve been coping or what they miss most. “We’re fraying at the edges,” she says, “and you want people to know we are in this together.”4 A narrow focus on getting the shot in their arms may overlook the fact that people’s lives have been undone in ways that vaccines can’t fix. In that sense, I think Larson is alluding to a more fundamental tension in the relationship between science and society that the pandemic has magnified: science may tell us what’s true, but it can’t tell us what’s meaningful.

We exhort the public to “follow the science” because, for instance, hundreds of thousands of people are dying and science has found effective ways to mitigate viral spread. But if you’re a restaurant owner facing bankruptcy because of closures, a mother whose career is on hold because your children’s schools have closed, a man who was prevented from holding the hand of your wife of 50 years as she died, what does following the science mean to you? If we want people to follow science, we also need to acknowledge where science ends and values begin. The destructive forces of science denialism — magnified by the pandemic — have made it difficult to maintain this distinction. But many people who hesitate to follow scientific recommendations may not be rejecting science as much as they are responding to different values and priorities. For this group, what might make science feel more compelling?

Maybe it’s time to focus as much on the messenger as we do on the message. In an essay published in December 2019, Harvard history-of-science professor Steven Shapin captures the crucial difference between knowing science and believing people who know science.6 Focusing on the three most salient examples of scientific contention — climate change, vaccine safety, and evolution — Shapin argues that what we’ve been calling a “Crisis of Truth” is really a crisis of trust. He admits, for instance, that his own understanding of climate change is less about knowing the details of the science than about knowing where “science lives.” So what if he doesn’t know the statistical means of determining global temperature and establishing its rate of change, as long as he knows how to vet the institutions and people who purport to have figured it out? Being a “knowledgeable person,” Shapin writes, “may mean knowing a lot of stuff, but it certainly means knowing who knows and who does not know.”

Medical science, which once seemed to live only with physicians, now seems to live everywhere and nowhere at once. Conducting robust scientific research is as critical as ever; the rapid development of highly effective Covid vaccines — possible only because of the decades of sound science that preceded it — speaks to the sanctity of the scientific process. Yet the unwillingness of a substantial proportion of the population to undergo vaccination reminds us of modern medicine’s paradox: as science’s capacity to improve population health has rapidly increased, so has its fragility. With a few clicks online, what we know can be rendered meaningless. Once the purveyors of knowledge, we now must learn to be its curators as well.

Because so many social, political, and historical forces feed this fragility, when I fail to make science compelling to patients, I often find myself blaming factors beyond my control. But reading Shapin made me wonder whether this sense of futility is an excuse for avoiding a deeper responsibility. When my patient said he wanted to do his own research on defibrillators, for instance, I assumed he meant he’d do a Google search. Because I’d already described the relevant trials, I felt my job was done. In retrospect, I suspect his skepticism was less about the evidence than about whether I, and the institutions I represent, could be trusted to look out for his best interests. Science alone can’t overcome a lack of trust. And in that sense, my job was only beginning.

Missing the Point

Just before the pandemic, Heidi Larson was invited to attend a lunch, where she was seated next to a woman who, Larson was warned, was “not into vaccines.” Accustomed to contentious interactions about vaccines, Larson braced herself for a potentially difficult discussion. But the woman simply asked her several perfectly reasonable questions, mostly about the influenza vaccine. In listening to her, Larson seemed to make the generic guidance feel more personal. Indeed, as they left the lunch together, the woman said she was going to get a flu shot — “because you made it feel less anonymous.” Larson was moved, struck by how easily we often give up on people. “It hit me in a way that she didn’t realize,” Larson told me. “We undervalue the power of talk.”

Of course, very few physicians would have time for such a conversation during an office visit. And if documentation demands shape physician behavior, the requirements related to influenza vaccination (assess eligibility and document whether given or refused7) typify an incentive structure that values box checking over actual doctoring. But medicine’s undervaluing of the power of talk has implications extending far beyond vaccines. For many physicians, listening has become a luxury, squeezed out by time constraints, the demands of the electronic health record, and the countless metrics demanding our attention. If you see a patient in the clinic with a newly diagnosed cardiomyopathy and don’t prescribe a beta-blocker, the institute’s “quality team” may alert you until you either prescribe the drug or justify its omission. If you spend 30 minutes listening to the same patient explain why he doesn’t see the need to take a beta-blocker, no one cares — except, of course, the patient.

In some ways, we are victims of our own success. A physician friend recently told me a story about one of his mentors, a cardiologist who graduated from medical school in the 1930s. During the cardiologist’s training — before antibiotics were in widespread use — he cared for a patient who was dying of bacterial endocarditis. The cardiologist, who would go on to earn renown for both clinical and scientific contributions, knew he had no medical treatments to offer the patient. So he offered himself instead: every night, he would sleep next to the patient in the adjacent bed, accompanying him until he died. Now, of course, science has given us countless tools for preventing and treating disease. But somehow, in our efforts to systematize all we know (and make it profitable), the centrality of the doctor–patient relationship got lost. Is there some inevitable trade-off between the capacity to care and the capacity to cure?

Surely not for everyone. About a year ago, I was talking to one of our cardiology fellows about our admiration for many people in our division. He mentioned a revered senior clinician, and as we tried to analyze the essence of his gift — which seemed to extend beyond brilliance, or judgment, or even devotion — the fellow said, “You know, what he’s really doing is therapy.” He didn’t mean the kind of therapy that tries to probe the depths of your unconscious to reveal your most primitive thoughts. He meant the seemingly simpler act of giving someone the space to be known. Having cared for this clinician’s patients, many of whom will not proceed with any recommended intervention until he has offered his blessing, I can see that it is only because he knows them that they trust that he knows what’s best for them.

But in this capacity, he is hardly alone. Though survey data suggest that less than a quarter of the U.S. public trusts the health care system at large, about 60% think that doctors can be trusted.8 I suspect, then, that the many physicians who continue to earn their patients’ trust do so despite the system, not because of it.

Before she named it Stuck, Larson was tentatively calling her book on vaccine hesitancy Missing the Point. We are so focused on changing people’s minds to get vaccines into their bodies, she explained, that we’ve been ignoring the factors contributing to vaccine hesitancy in the first place. To be clear, some subset of the hesitant have been misinformed and simply need to hear accurate information; believing an antibiotic allergy is a contraindication to vaccination, for instance, is an easily corrected misunderstanding. Moreover, the vaccines absolutely represent a miracle of science; their many potential benefits — from preventing Covid deaths to restoring normalcy to society — should be shouted from the rooftops. But to the extent that vaccine hesitancy reflects a loss of faith in our health care system, this moment should force us to examine the ways in which our system is no longer deserving of that faith. The path forward, then, isn’t to compromise science by turning it into an art; rather, it’s to stop trying to turn the art of medicine into a science.

After Mr. C. — my patient who prefers natural remedies to medications — left the hospital, he agreed to be interviewed for this article, to elaborate on the origins of his preference. He told me lots of stories — about a log cabin in Oregon, a pond he’d created in his backyard, a moment at a bus stop 60 years ago when a severely disabled man, hunched under the weight of a huge backpack, told him that “Life was but a dream between two sleeps.” When I finally asked him how he felt about getting a Covid vaccine, he said that because his body had already avoided the infection, he assumed he had a natural ability to fend it off. But he added, “You’re going to tell me I have to, right?” No, I said, “my job right now isn’t to be your doctor. I’m just here to listen.” Only later did I realize that in making this distinction, I was missing the point.

This article is Part 2 in a two-part series.

Funding and Disclosures

Disclosure forms provided by the author are available at NEJM.org.

Identifying details have been changed to protect people’s privacy.

This article was published on February 19, 2021, at NEJM.org.

Author Affiliations

Dr. Rosenbaum is a national correspondent for the Journal.

Supplementary Material

References (8)

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  2. 2. Villegas P. South Dakota nurse says many patients deny the coronavirus exists — right up until death. The Washington Post. November 16, 2020.

  3. 3. Larson HJ. Stuck: how vaccine rumors start — and why they don’t go away. New York: Oxford University Press, 2020.

  4. 4. Brown School of Public Health. A conversation with Heidi J. Larson, Ph.D. October 1, 2020 (https://www.brown.edu/academics/public-health/events/larson).

  5. 5. Center for Strategic and International Studies. CSIS book launch with Heidi J. Larson — Stuck. September 16, 2020 (https://www.csis.org/events/online-event-csis-book-launch-heidi-j-larson-%E2%80%93-stuck).

  6. 6. Shapin S. Is there a crisis of truth? Los Angeles Review of Books. December 2, 2019 (https://lareviewofbooks.org/article/is-there-a-crisis-of-truth/).

  7. 7. Centers for Medicare and Medicaid Services. Preventive care and screening: influenza immunization. Version 4.0. Quality ID no. 110 (NQF 0041). Chicago: American Medical Association, November 2019 (https://qpp.cms.gov/docs/QPP_quality_measure_specifications/CQM-Measures/2020_Measure_110_MIPSCQM.pdf).

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