“over the past half-century, as was made especially clear by the Covid pandemic, patients have increasingly challenged their physicians’ expertise. Merely providing patients with data and advice has become an inadequate way to disseminate information and promote informed consent.
[The author goes on to describe medicine’s historical failures with patients, including Tuskegee, childbirth practices in the 1970s, harvesting cancer cells from Henrietta Lacks, physicians paid by tobacco companies to “manufacture doubt,” the slow response to the AIDS epidemic and 2024 medical article retractions from researchers at the Dana-Farber Cancer Institute.]
To some degree, the AIDS model — in which patients revisit existing data or try to generate their own — has informed subsequent lay challenges to traditional expertise. One example is “right to try” initiatives in which patients attempt to get early access to experimental drugs. Conversely, the focus of complementary medicine on improving health, as opposed to identifying and curing disease, may directly challenge traditional physician authority. It’s worth noting that patients often learn about these options on the Internet. Although this easy access can be empowering, it also unfortunately may lead to the spread of blatant misinformation, as in the case of the Covid vaccine.
[..] Dealing with an often fatal new disease that was poorly understood, researchers and public health officials relied on their usual strategy: science. They generated hypotheses, collected data, drew conclusions, and made recommendations. From the vantage point of 2024, most observers would agree that this process was far from perfect. Yet the often virulent opposition to traditional public health measures, such as isolation and masking, was unprecedented. At a time of great political discord, traditional libertarian, anti–public health arguments caught fire in predominantly conservative populations.
To some degree, these criticisms reflected ignorance of the scientific process, which has always relied on falsifiable hypotheses and the revision of recommendations based on new data. There was no place for such nuance on the Internet. But perhaps, given the perceived decline in the authority of mainstream medicine that had resulted from decades of scandals, the Covid pandemic represented an almost inevitable response to a mysterious and frightening disease. After all, why would you reflexively trust members of a profession that had omitted to obtain informed consent, relied on tradition instead of the best data, demonstrated racism and sexism, and deliberately falsified information for personal gain? In retrospect, public health officials might have better acknowledged this history as they advocated for protective measures, as well as not reflexively dismissing competing concerns, such as the disruption of schooling, the costs of social isolation, and worries about occasional serious side effects of the vaccines — all of which now appear to be valid concerns.
However one judges the Covid pandemic, it has taught us something very important: the usual response to crisis — providing the best scientific information — is no longer adequate. Rather, we need to understand why patients have become so resistant. Several observers have argued that the best way to do so is to understand patients’ values — that is, what belief systems do patients bring to their medical encounters? To some degree, the rise of the concept of shared decision making, which encourages physicians and patients to devise care plans based on clinical data and patient preferences, is an attempt to bring patients’ values into play. But in an environment where physician expertise is being questioned, a deeper dive into values is warranted. Helpful tools for eliciting and clarifying patients’ values exist, and they include questions such as: What positive things do you value most about your life? Do you feel your values are sometimes violated by your health care providers? Do you have religious or moral views about medicine? If you are hesitant about a certain treatment, why? Another strategy being recommended is to have discussions that explicitly acknowledge historical reasons behind contemporary patient mistrust.
Answers to questions about values often reveal plausible concerns about conflicting scientific data, worries about being treated as a “guinea pig,” a desire to regain a sense of control, and reservations about undergoing medical interventions in order to benefit the larger population. Certain commentators speak of the “gist,” a simple and compelling meaning, such as those listed above, that drives patients’ decisions. Insights revealed by nonjudgmental discussion and active listening, they argue, may enable the “rescripting” of an inaccurate gist into one that reflects and provides a better understanding of the medical intervention in question and how it is justified by science. Of course, discussions of patients’ values should not be used to force particular options on them: that would represent an unwelcome return to paternalism. This caution is especially important for disadvantaged populations.
Science remains the backbone of medical advice, but learning about patients’ values, both when they agree with recommendations and when they disagree with them, needs to be a component of doctor–patient communication. Respecting patients and gaining their trust should be considered essential skills of physicians.”
Full editorial, BH Lerner, New England Journal of Medicine, 2024.8.10.