Failed Trust

They will not listen to anyone

so nobody tells them a lie.

­—An Innocent Man

Billy Joel, 1983

In this issue of Family Medicine, Kerrigan and colleagues share the results of a rigorous literature review exploring why parents decline to vaccinate their children.1 This is not a new issue; vaccine refusal increased dramatically between 2000 and 2010, so physicians have been dealing with this problem for over a decade. But this paper is particularly relevant at a time when the world is anxiously awaiting a vaccine for the SARS-CoV-2 virus. The authors should be congratulated for approaching the problem with curiosity rather than condemnation because blaming has become a contact sport when it comes to this topic. Remarkably, three of these authors were students at the time this study was conducted. So, Dr Altman should be acknowledged for his mentorship as well as his scholarship. Table 2 in the paper itemizes concerns about safety, insufficient information, and side effects as the most common reasons for vaccine hesitancy provided in 82 of the papers found in their search. Most of the studies were descriptive; only 20% described any sort of intervention.

In general, the existing literature has examined patient attitudes and concerns, but not provider behavior or social context. This is unfortunate because vaccine refusal is not simply a patient behavior when considered in the larger context of the times in which we live. It is also a consequence of the systematic disinformation and antiintellectualism that can be traced back to the rise of social media and new forms of communication. In the 20th century, evidence arose from subject matter experts and was distributed to the public by modes of communication such as newspapers and professional journals with editorial oversight of both the process and content of publication. The 21st-century model is much faster and much more democratic. It is also much less controlled. Anyone with an internet connection can disseminate information rapidly, but there is no reliable editorial filter in place to assure accuracy. In fact, attempts at fact checking today are often summarily dismissed as restrictions on free speech. In seeking freedom of information, we have embraced freedom of disinformation. Some of this disinformation is simply error, but some of it is much more insidious.

This bring us to the topic of lying—intentionally making false statements. Almost any school child knows that lying is wrong. It is prohibited by the eighth commandment and is generally frowned upon by moral philosophers because it undermines trust and erodes social cohesion. Children are punished for lying. One can be arrested for lying under oath. One can be sued for libel for writing lies about other people. But, in general, there is little legal risk of lying in advertising or political campaigning. A particular insidious form of lying involves repeating unsubstantiated rumors or conspiracy theories without regard for the truth of the statement being repeated. Today, it is hard to watch the evening news without hearing about someone being accused of lying. Major newspapers keep a count of lies told by the President of the United States as though his election marked the start of this problem. But Donald Trump is a symptom of this problem and not its cause.

As physicians, most of us can make a strong scientific defense of why vaccinations are good for the health of the community. The evidence is overwhelming and the scientific consensus is nearly universal. And yet, a substantial number of people simply do not believe this evidence. After reading conflicting information online, they struggle with what to believe. They also struggle when choosing whom to believe, because evidence is judged as much by who is sharing it as on the strength of the evidence itself. On the face of it, this seems absurd to us. But maybe it is not so strange when we consider some uncomfortable facts. In the 1990s, the public was told that oxycodone was safe and its widespread use in treating chronic pain was endorsed by respected medical authorities. Thirty years ago, Americans were told that sequencing the human genome would extend their life expectancy and revolutionize human health. A war in Iraq was started based on false evidence of weapons of mass destruction. In fact, oxycodone is not safe; 450,000 overdose deaths occurred between 1999 and 2018 in the opioid epidemic.2 We learned the sequence of the human genome (3 billion base pairs) in 2003, but life expectancy is now decreasing and an RNA virus with less than 30,000 bases has shut down the entire world. The war in Iraq ultimately cost 5,000 American and 400,000 Iraqi lives and no weapons of mass destruction were ever found.3 People have good reasons to distrust evidence because evidence has been misrepresented or inflated so frequently that they can no longer tell fact from opinion. Were these intentional lies? Maybe not. Perhaps they simply were self-delusions or wishful thinking, but does the difference really matter? In a world where we cannot agree about facts, everyone’s opinion is equally valid, and expertise becomes meaningless.

The irony of course is that science has accomplished so much. Immunizations have rendered most childhood diseases rare. Within a single generation, we have effectively converted HIV infection to a manageable chronic disease. New drugs have revolutionized the care of psoriasis, rheumatoid arthritis, and hepatitis C. And yet, people take the accomplishments of science for granted even as trust erodes and credibility ebbs. Once upon a time, a central tenet of medical and scientific professionalism was to underpromise and overdeliver. Today, the opposite seems to be in vogue.

The real question is, what can family physicians do about this? Perhaps the place to start is to stop considering people who mistrust science to be somehow flawed. Doubting evidence is, in many ways, adaptive in today’s world. Arguing about the evidence actually misses the point. Trust grows in the presence of strong relationships. That is why personal continuity of care in the relationship between people and their health care professionals is so essential. Patients may not be able to trust the evidence, but they can trust us if we build and sustain strong relationships with them and never, ever, lie to them ourselves. Vaccine refusal is a failure of trust more than it is a denial of science. Lack of trust is a problem we have brought on ourselves by not speaking out when lies are told, by diluting relationship-based care, and by accepting false evidence too readily ourselves. Today, most of us will go to work and meet people who do not trust recommendations to socially distance or use face masks in the COVID-19 pandemic. We can choose to argue with them about this, or we can choose to listen and give the problem its proper name: failed trust.