A new episode of our podcast, “Show Me the Science,” has been posted. At present, these podcast episodes are highlighting research and patient care on the Washington University Medical Campus as our scientists and clinicians confront the COVID-19 pandemic.
More than 900,000 people in the United States have died of COVID-19, with the vast majority of deaths occurring among those who are unvaccinated. Still, many people remain hesitant to get the vaccine and are not sure whether they can trust the doctors and public health experts who are recommending COVID-19 vaccines for anyone who is eligible. Washington University infectious diseases specialist Elvin H. Geng, MD, a professor of medicine, recently recalled similar issues with communication and trust in a Perspective essay he wrote for The New England Journal of Medicine. In the essay, Geng discussed an AIDS patient he worked with years ago who was convinced that HIV didn’t cause AIDS. That patient saw no need to take anti-retroviral medication when it became available, even as he got progressively sicker. But Geng continued talking to this patient and, eventually, he changed his mind. Geng writes that similar efforts are needed to ease the fears of people who have very real concerns about the safety of COVID-19 vaccines. He writes that “no disembodied message (even if crafted by marketing experts) can compete with someone you know who will pull up a chair.” Although Geng says he understands it’s difficult for doctors to make time for heart-to-heart talks with every anxious patient, he also says it’s clear from the low rates of vaccination that something has to change; and he believes deeper, more empathetic conversations between doctors and patients could be an important step.
The podcast, “Show Me the Science,” is produced by the Office of Medical Public Affairs at Washington University School of Medicine in St. Louis.
Jim Dryden (host): Hello and welcome to “Show Me the Science,” conversations about science and health with the people of Washington University School of Medicine in St. Louis, Missouri…the Show-Me state. As we continue to detail Washington University’s response to the COVID-19 pandemic, in this episode, we look at the issue of trust between patients and the medical establishment. One of the tragedies of the pandemic is that many of the 900,000 people who’ve died in the United States, and the millions more who’ve died worldwide, were unvaccinated. Washington University infectious diseases specialist Dr. Elvin Geng, who began his career during the AIDS epidemic, says he’s familiar with dealing with patients who aren’t certain they’re hearing the truth. He wrote a Perspective essay recently for The New England Journal of Medicine, recalling a patient who spent a very long time refusing to take medications that could save his life. Here is Geng reading from that essay:
Elvin H. Geng, MD: I first came across Mr. B while reviewing charts for new patients in my primary care HIV clinic. Even in a public hospital where many patients were down and out, his case struck me. He lived in a single-room occupancy hotel and had a history of homelessness. He had received an HIV diagnosis years before, and had managed occasional contact with the health-care system, but had never started HIV treatment. He adamantly maintained that HIV was not the cause of AIDS, and that the medications were useless at best, and toxic at worst.
Dryden: The essay goes on to detail some of Geng’s conversation with his patient, who did eventually change his mind and decide to try the medicine. Geng wrote about that case because he says the current state of affairs with COVID-19 reminds him of patients, like the “Mr. B” whose story he tells, who didn’t trust what they were hearing because what they were hearing didn’t make sense to them. Geng says doctors’ oldest tools may be among the best. And one of those tools is talking with patients. He says that helped Mr. B to change his mind and it may help in the current environment, too.
Geng: There are a number of similarities and some notable differences, but we’ll start with the similarities. I think people are constantly trying to make sense of the world that they’re in. And many times the world offers you a number of different explanations and we have to sort of decide which among those makes the most sense. Now to myself, oftentimes the sort of science-based one is often the mainstream-held one, seems to me to be the obvious answer. But to a lot of people, people are looking for different types of explanations, and sometimes there are threads that come up, different ways of understanding the world that don’t conform to a science-based understanding of the world. And there’s always been some distrust. Right? And there’s always been some distrust of science. I think that’s probably worse now than it’s been in the past. But there is this idea that maybe scientists are motivated by ulterior motives to say things that are not true. There’s also this idea that scientists have some kind of authority, and certain people react against that authority. And I think those have been problems for a long time, and challenges, and continue to be.
Dryden: Now, you wrote in The New England Journal of Medicine. There also was a recent essay in another science publication, STAT, where a doctor who works with substance abusers told of hearing a patient tell that they trusted their drug dealer more than they trusted the doctor. I mean, at some level, it sounds like this problem of trusting the message is pretty deep and ingrained in some people. And maybe we’re going to be way past this pandemic before these sorts of communications problems are solved.
Geng: Well, I think, one of the things that’s different, I think, now than things used to be, is that there have always been threads of trust and mistrust, particularly in health care, and in relationships between people and their health-care providers. But at the present moment, because of the ubiquity of social media, and the diversification of where people get information, there is a much more, I think, manufactured effort to create that mistrust because that mistrust is in the interest of some people. Instead of sort of percolating at the margins in the periphery, it’s really front and center. That makes the challenge greater, but I will say, though, that trust is constantly negotiated and renegotiated. I think that people and physicians will need to continue to grapple with it. This story is a story that had what I think of as a generally good ending. But there are other stories that everybody has in primary care and other health care that probably don’t end as well and I have those, as well. It’s good to maintain some humility about those relationships. It’s constantly negotiated and renegotiated. It’s a process. And that’s what makes medicine endlessly challenging, but also perhaps endlessly interesting, and endlessly useful as a lens to look at so many different things in society.
Dryden: In the essay, in the story you tell, you finally were able to convince a man who was dying to try the drugs for HIV. That decision saved his life. In the case of COVID, however, by the time a patient gets to that point and decides they want the vaccine, it’s often too late.
Geng: From what I’ve seen, the need for the conversation — the need for a space for a conversation that’s a non-judgmental conversation — continues to exist with COVID in a way that I felt like maybe the story helps to bring out, in the sense that the people who remain unvaccinated at this point…okay, there’s some proportion that have sort of what you might call ideological, or sort of hard-core reasons for non-vaccination, and they won’t do it. But I feel like the media sort of makes it seem like everybody is either for it or against it. But there’s still a big chunk of people, in reality, that have real issues, and real challenges, and real concerns that would benefit from a conversation, and who I believe want to have that conversation. You know, I was helping out with a vaccine event sometime recently, and a gentleman came in. So my job at this particular vaccination event was to kind of talk to people up front, answer any questions. And invariably, when people came in and I said, “Do you have any questions?” The first answer is always, “No, I have no questions, Doc.” But then they’re filling out the forms, and if you’re around, then eventually somebody says, “You know what? Actually, I do have a question.” And then you get into a conversation. And the questions are often like, “I’ve heard this,” or, “I’ve heard that, and it’s making me think this.” And so one of the persons that I spoke to had a medical event, a seizure, and was in the hospital recently, and said, “Should I really get this vaccine?” And that’s a legitimate question. If you had a seizure a couple of weeks ago, as a physician, I kind of want to know what that was all about. So we spoke a little bit. I learned a little bit more about it, and we ended up deciding that it had nothing to do with sort of getting in the way of a vaccine, and that it was okay. That was the kind of thing that could only be addressed in a conversation, and frankly, could only be addressed in a conversation with a health-care worker.
I noticed that even after we spoke, he was fine. And then as he was in line to get the vaccine, he was visibly anxious, and he said before he went, he said, “You know, doc, I’m just so nervous. I’ve heard about all these things. I hope this is the right decision,” and stuff like that. And he had medical conditions, and so he was the kind of person who would be at risk for something really bad with COVID. We talked about it a little bit more and he went through with it. But it’s the kind of thing that no message on the side of a bus is going to address this man’s concerns. Right? He needs to have the opportunity to have a conversation, and maybe more than one. And not all the conversations will end up with a vaccine. A woman who worked at that event said that he had come to a previous vaccination event, and had left without getting vaccinated. And on that day, the doubts prevailed. On this day, they didn’t.
Dryden: In both the case of HIV and of SARS-CoV-2, I wonder how much of the problem with communication might also be, at least peripherally, related to problems with equity, with bias in medicine. I mean, how much of what we’re seeing with rates of vaccination that aren’t as high as we’d like, how much of that involves underrepresented groups, either not getting the message, or not trusting the message?
Geng: I think that’s right. And I think it’s important and complex. I mean, I think for society to value science, I think society has to see the benefits of science. If the benefits of medical science, whether they’re new technologies or other things seem to accrue in only the few and the privileged, then in general, people will have doubts. Right? What’s the point of all this? You can be right. You can have the greatest technologies. But if only certain people benefit from it, then there’s no reason for me to care about it, or even to believe in it. And so I do think that equity, particularly in access to healthcare, is a really important challenge for American society, for society in and of itself. But also for the way that society values science going into the future. There is mistrust, justifiable mistrust from racism and structural racism. But I also think, though, that at this moment — I heard somebody say recently that, look, across the country, the vaccination uptake rates among African-Americans and whites is approximately equal. The person who was speaking was saying that this was sort of evidence of progress. And for sure, there has been a lot of efforts that have yielded fruit to engage the African-American community. But it’s also true that part of the gap closing is that there is a significant movement, particularly among conservative and rural whites, of sort of nascent or new distrust. And I think the landscape of trust around COVID vaccination has threads of what we’ve always had, and problems that we’ve always had, as well as new ones.
Dryden: I mean, when it comes to communication, one thing I’ve heard recently is that we’re scaring the wrong people. The people who are vaccinated and boosted and probably could get on with their lives with only some moderate changes are still terrified. While a lot of unvaccinated people who should be scared are wandering around without masks, going to parties, going to large indoor events. And when you look at it that way, it would seem we’re not communicating effectively with either group.
Geng: That’s very interesting and well-put. I mean, I would say that COVID — not to over-anthropomorphize a virus — but COVID is perfectly calibrated in its lethality, and its heterogeneity of lethality, to exploit human gaps in decision-making. Right? In other words, if COVID was more deadly, if it killed more people, people would all agree, “Okay. We’ve got to go full-court press.” But a lot of people are fine. The majority of people have some illness that’s not that bad. Some people get long COVID, which is terrible. And then some people get so sick that they die. And it’s a lot of people compared to all the other risks from all the other illnesses. But it’s still like one in a thousand chance of dying, which to a lot of people seems like, “Oh, that’s great.” Even a 1 in 100 — COVID doesn’t have a 1 in 100 chance of killing you — but if it did, a lot of people would be like, “Okay, that’s a 99% chance that it won’t kill me.” So it’s sort of, in some ways, perfectly calibrated to exploit the diversity of risk tolerances that we have, and therefore our inability to collectively make decisions that would benefit us, that we would agree to make decisions to benefit us all.
Dryden: One of the things you wrote was that “No disembodied message, even if crafted by marketing experts, can compete with someone you know who will pull up a chair.” And your suggestion is that doctors could solve at least some of this by getting to know patients, talking to them. But with limited time and so many patients, how do you do that?
Geng: Yeah. I think that’s 100% right. And I wanted to be careful in this piece not to say to people kind of like, “Oh, you should be doing this,” in a way, because I know that people are already running on fumes. People are already doing everything they can. And health-care workers are exhausted, and overworked, and burnt out, and leaving their positions and jobs. And asking people to do more seems like not what I would want to do, anyway. At the same time, I guess I wanted us to all collectively use this piece as just a moment to remember that physicians do occupy a privileged position in society. And we sometimes can use that in remarkable and almost miraculous ways. And we don’t have to — you know, this is one anecdote. Right? And there are days in which I practice medicine where nothing good came of anything that I did. [laughter] So the opportunity exists. And so perhaps, number one, let’s be collectively mindful of those opportunities, maybe when they do come up, when they present themselves to us. And number two, I do think that at a moment when pessimism is the zeitgeist, I think that optimism in an optimistic story helps us regain some energy, some brightness, some minor moment of, sort of, inspiration. And I think that helps us as health-care workers, and as just people living in a pandemic, feel a little bit better and see a little bit of a way forward.
Dryden: Do you worry that this opposition to the COVID vaccine might grow into something bigger? That some of the people who don’t want to get this shot also might decide, “Let’s not get my kid the measles vaccine, or the polio vaccine”? That infectious diseases doctors like you may soon have to treat more people for problems that could be prevented.
Geng: I definitely worry about that. Because it’s interesting, a lot of people have talked about this how, a few months ago, patients were like, “Oh, I can’t get that vaccine. It’s only emergency-use authorization by the FDA.” And two or three years ago, you’d go to a clinic and you recommend to a patient, “Okay. You should get a hepatitis vaccine. And this vaccine, and that vaccine.” And people are like, “Fine.” Nobody was like, “Has that gone through full FDA approval? Or is it only emergency-use authorization?” Nobody knew and nobody cared. And now, everybody knows and a lot of people care. So I think it’s an empiric question that remains to be seen. But I think we need to be careful about it. And we need to get ahead of it, in a way. We’re going to have to get used to this idea that, yes, these doubts exist, and we’re going to have to work with and through those.
Dryden: Geng says improved intimate communication between doctor and patient remains the best hope for protecting more people. And he admits it’s not going to be easy. But as he wrote in The New England Journal of Medicine, it won’t hurt, and it might help a lot.
Geng: By getting to know patients’ stories, and perhaps letting them know ours, we might be able to add a link to the chain of trust, even if it is a single one. And collectively, these conversations may be one potential remedy for the afflicted social fabric of our times.
Dryden: “Show Me the Science” is a production of the Office of Medical Public Affairs at Washington University School of Medicine in St. Louis. The goal of this project is to keep you informed, and maybe teach you some things that will give you hope. If you’ve enjoyed what you’ve heard, please remember to subscribe and tell your friends. Thanks for tuning in. I’m Jim Dryden. Stay safe.