Trust Me, I'm a Doctor: Misinformation and Mistrust in Medicine
Trust Me, I'm a Doctor: Misinformation and Mistrust in Medicine
Notes from a Family Meeting: Vol. 1, No. 10
“The CDC’s latest blunder is really about trust, not masks.”
“The FDA is begging you not to take horse dewormer for Covid-19”
“WHO says Covid misinformation is a major factor driving pandemic around the world”
…etc…
The promises made by science are limitless. If science has helped us do so much today, imagine what we can do tomorrow. And if we just taught everyone what they needed to know, we’d be that much closer to utopia. Hope springs eternal in the idyllic imagination, and that fount has run over during the pandemic. If we know more about COVID-19, if we educate people in what they should do, if we discern every variable about how the virus mutates and spreads then this nightmare would end.
As brightly as the light of this bastion shines, some rely on their own ways of seeing the world. Some folks are hesitant, uncertain of who to trust. Others not only push back, but become more entrenched in their own position. How?
Social psychologist Jonathan Haidt wrote The Righteous Mind describing a fascinating journey through his research on such bedeviling questions. He and his team elucidated the foundations of decision-making in his social intuitionist model, which he describes by way of analogy. Your rational mind is a lawyer sitting atop an elephant. This elephant, your intuition, is conditioned in all sorts of non-rational ways, decides which way to go, and then the lawyer justifies the decision post hoc. “If you think that moral reasoning is something we do to figure out the truth,” Haidt writes, “you’ll be constantly frustrated by how foolish, biased, and illogical people become when they disagree with you.”
Haidt makes another useful point (he makes many): “The human mind is a story processor, not a logic processor.” We make a big mistake when we believe that decision-making is a mere algorithm where facts go in one end and action comes out the other. We aren’t robots. Science can show us a lot about the world, but we need other things to know how to act. Sometimes, like across the landscapes of morality, science isn’t a lighthouse, but because it’s misused, it becomes a will-o-wisp.
The Rise of Scientism
With isolation and masking, we were able to get a bit of a handle on the spread of COVID-19 before the vaccine. Remember the early calls of the pandemic? “Stop the spread!” “Flatten the curve!” It seemed like people were willing to go all in, thinking that their isolation might last a couple weeks or a month at most. But whenever restrictions were lightened, another wave loomed, hospitals teetered on the brink of the surge, and it seemed like there was no way out. The limited scientific literacy of the general population didn’t help matters as they interpreted the evolving understanding of the pandemic as incompetence or deception.
Then came the vaccine. There’s no doubt that these vaccines are wonders of scientific development. They’re effective and safe; safer, certainly, than a COVID-19 infection in adults. The efficiency with which the vaccines were developed (speed + effectiveness) is stunning. Vaccines have promised the end of the pandemic.
So some argue it’s obvious: the way out of this mess is to “follow the science.” Science gives us generally reliable data about the world, and if we have more data, we might be able to light the way forward. This is one of the deep tenets of scientism, in which science elucidates all facts (or at least all important and relevant facts). Those facts are all you need to act. “Since science is good at providing explanations,” astrophysicist Adam Frank wrote, “explanations are all that matter.”
How does this logic get along in the clinic?
Some patient somewhere today will sit in their clinician’s office ambivalent about a decision. Their clinician will, rightfully so, explain the situation as best as they see it, and hopefully what they recommend. The patient will, perhaps, overtly resist that recommendation. “Surely this chap needs more information,” the eager helper will surmise, “then he’ll come around.” So they’ll redouble their efforts to educate the patient back onto the straight and narrow path. Any further resistance will be interpreted as denial or foolishness. Why? Because the information is clear. The facts point the way. The “is” lights the way to the “ought.”
I see this happen every week in my work: clinicians assume more information will win the day. They assume they and their patients see the world the same way and that they have the same ways of recognizing, appreciating, and valuing knowledge. In short, they assume that they and their patients share the same epistemology. Most of the time this doesn’t cause any big trouble because the goals of the physician and the patient are implicitly aligned. Usually the physician doesn’t have to do much persuading, and patients trust their physicians because of who they are. Consent usually isn’t rigorously informed, particularly for minor interventions. Even when patients consent after a presentation of the relevant burdens and benefits of intervention and no intervention, many patients simply state, “You’re the doc.” That’s a lot of trust.
The COVID communication strategy, both formally from organizations and informally from many individual clinicians, is this writ large. It depends on the public trusting expert judgment. That hasn’t worked so well for some folks. We’ve seen them resist the expertise. Such resistance hasn’t provoked the authorities to reassess their strategy; instead, the clinicians among them have done what they’ve probably done at the bedside or in their clinic: they pushed more information. But what if, instead of an information deficit, we have a trust deficit?
Of Authority and Trust
Howard Brody claimed patients bring a broken story to their clinicians, asking, “Can you help me fix it?” Clinicians are allowed entry into the most intimate parts of someone’s life, not only to simply observe, but as co-authors. Behold the remarkable influence of medicine’s Aesculapian authority.
Clinicians (usually physicians, but increasingly others like nurse practitioners and physician assistants) have authority in three major areas. First, they’re experts in disease and medicine. Second, they define the boundaries of health and the profession is largely self-regulating, and thus they recognize and at most authorize what’s right and good. Third, they have a venerated position in society. All of these working together yield Aesculapian authority which doesn’t fade with time (a retired physician still possesses it) and sometimes even overflows into other areas (a physician talking about, say, ecology might be taken as seriously as some ecologists).
Trust is critical for this to work. People have to trust that clinicians are experts, that they know what’s good, and that their venerated position won’t be abused. Only in very narrow contexts do clinicians operate independent of trust (e.g., involuntary psychiatric hospitalization); even then, the authority rests not on the trust of the individual patient, but the trust of society itself. Where there’s no trust, people will either seek care elsewhere or else seek more control over the profession via legal means.
COVID-19 has revealed that people have been willing to trust modern healthcare only to the extent that it helped them get what they want. This is not exactly the same as using healthcare to help them pursue health, although in most instances, these were one and the same.
In my clinical practice, this has always been the case to a certain degree: folks might decline certain medications just because they don’t want to take them, or decline the flu shot every year “because it gives you the flu,” but show up in the emergency department when they’re having chest pain. Folks usually aren’t critically appraising their reasons for accepting or rejecting the basic tenets of allopathic medicine; they’re just doing what they hope will help them live a good life.
What’s happened? Well, the predisposing, precipitating, and perpetuating factors are many. I’ll summarize some that come to my mind:
The consumer model of healthcare: no one can argue that healthcare isn’t a business even if it’s also more than a business. There’s some potential for good here: we need to acknowledge the reality that healthcare costs money. If patients can shop around for their healthcare, the competition might drive down costs and improve quality. Yet carried too far, consumerism becomes untethered from the pursuit of health. Consumerism is about providing customers with the product they want, not necessarily using that product to pursue a shared goal. Consumers don’t trust their products the same way patients might trust their clinicians.
The emphasis on the principle of respect for autonomy in bioethical reasoning: if health is merely whatever the healthcare consumer wants, then most bioethical dilemmas boil down to, “Who decides?” This has come to the fore in COVID-19 public health policy as many have declined to receive vaccination or to change their behavior in any way because they believe they can do what they want with their own bodies. We’ve learned to reason like this whenever we visit our doctor’s office: the only person worth thinking about in a healthcare context is myself and sometimes my immediate family. The doctor-patient relationship isn’t about accompanying this person on a journey toward health. Instead, healthcare happens when autonomous consumers use clinicians as instruments for enacting their own will for their lives.
The democratization of expertise via the internet: I’ve completed minor home repairs, cooked food, and learned a hobby relying on YouTube and blogs. That’s not much different in the realm of healthcare. If you search for any given health problem, there’s probably an online community dedicated to mutual support and information sharing. Some of these communities, organized around medically unexplained symptoms or stigmatized conditions, are suspicious of modern healthcare, if not outright opposed to it. They swap what works for them, and people have access to loads of anecdotal information that isn’t available in a doctor’s office. Whether that information is sound by the standards of modern science doesn’t really matter because clinicians, wielding scientific evidence, have done a poor job of garnering these folks’ trust. Mocking people who claim to have “done their own research” only reveals and further exacerbates the epistemic gap that exists between clinicians (and scientists) and patients. We disagree about what constitutes knowledge, and therefore we also disagree about what constitutes sound research. Your patient may trust the YouTube influencer, their cousin’s friend, or that rumor more than they trust you because those things appear more trustworthy than you.
The abuse of trust by individual clinicians and healthcare organizations: The horrors of the Tuskegee experiment are still within living memory for many people. Forced sterilization in the pursuit of eugenics was popular in the United States, and its effects are still felt today. Some people just aren’t believed when they say they’re in pain. I’ve heard stories from individual patients about feeling like they’re criminalized, ignored, yelled at, cajoled, and dehumanized. This doesn’t have to rise to the level of an ethical research disaster; it can be a seemingly minor disbelief of someone’s genuine complaint. In the face of such abuses at institutional and individual levels, we must wrestle with the question: why should they trust us?
The poor job many clinicians do in communicating with their patients: As a palliative care doctor, I’m usually not in the room when another clinician is sharing bad news with their patient. However, occasionally I am. I’ve seen some masterful communication and I’ve seen very poor, even harmful, communication. Patients are interrupted and dismissed. Clinicians become defensive when their own judgments are questioned, even in a mere spirit of curiosity. Patients are left in the dark about what to expect. Patients are given half-truths (e.g., “We’ll treat you if you get stronger” when there’s very little chance that will happen). Clinicians, being experts, flourish a menu of options before the “autonomous” patient with no guidance or recommendation about what they should choose. Patients see this person who supposedly knows a lot about what’s going on, who wields modern medical technology like magic, but yet ends up being such a useless guide through the fog of illness. Why not turn elsewhere where you can get some useful advice?
The politicization of the pandemic: It probably shouldn’t be surprising that the pandemic became politicized in the United States. We’re a diverse country, so of course we’re going to disagree about the best approach to curbing harm. Nevertheless, given how the conversation has evolved, clinicians found themselves sucked into the political maelstrom in ways they perhaps hadn’t experienced before. Now, to merely recommend one course of action over another (e.g., wear a mask in public) is offer a shibboleth to a watching world. It gets worse. In the words of John Ioannidis, “The dominant narrative became that ‘we are at war.’ When at war, everyone has to follow orders. If a platoon is ordered to go right and some soldiers explore maneuvering to the left, they are shot as deserters. Scientific skepticism had to be shot, no questions asked. The orders were clear.” The public hasn’t seen a better model of civil disagreement modeled in the scientific and medical communities than what’s on most social media feeds.
After Authority
Where do we go from here? Should clinicians seek to recover the Aesculapian authority they’ve lost? Should they resign themselves to being mere instruments in service to the will of healthcare consumers? These are significant concerns, but there is a deeper question that will set the frame for what it means for a clinician to have authority at all: what is the essence of the relationship between healers and sick people? Like most Great Questions, the responses, articulated and lived, will be endless. It’s as important that we apprentice ourselves to the question as we, like so many others, seek to answer it. That isn’t to say there’s nothing true here, only that the nature of this relationship is so vast across time and culture that it’ll be difficult to summarize and standardize. I can only gesture toward a few things here.
In what they describe as the “provider of services model” of healthcare where patients get whatever they want because the guiding ethical principle is the actualization of their autonomy, Farr Curlin and Christopher Tollefsen write, “Patients gain technicians committed to cooperation and lose healers committed to their good. They gain control over physicians but thereby divest physicians of responsibility. As a result, patients will ‘often navigate treacherous medical terrain without adequate medical guidance.’ Physicians can wash their hands of patients’ decisions, as long as they give their patients accurate information and provider technically proficient ‘healthcare services.’”
This relationship requires solidarity, “without which there can be no common good, no genuine community, and ultimately no human fulfillment. … Solidarity is not simply a concern for the collective, humanity in the abstract, or goods in the abstract. It requires concrete relationships in particular communities, including the relationships that form communities between physicians and patients.” If we don’t share an understanding of health, then how can we use medicine together? Solidarity becomes impossible or at least incidental and fragile.
We need more than solidarity. “…the professions respond to particular vulnerabilities that individuals face; such vulnerabilities call for trust on the part of the vulnerable and trustworthiness on the part of those caring for them” (emphasis mine). Without trust, the clinician and patient can’t come together in pursuit of health. Such has been the fallout in this era of COVID-19 I’ve just described.
Here’s the thing: without solidarity and trust, healthcare doesn’t go away. We still have sick people. We still must reckon with our frailty, dependence, and mortality, but we’ll do it in other ways. We’ll do it in compassionless, consumeristic ways. We’ll force the hands of bureaucracy or law to provide the techniques that at least manipulate physiology. The technologically sophisticated castles we build in the sky may appear beautiful, but they’ll be ill-suited for health.
Yes, the loss of solidarity and trust have eroded the Aesculapian authority clinicians have possessed for so long. The answer isn’t to re-exert that authority by providing more information (though we need information), mocking or “cancelling” the doubters (though we need reorientation toward what’s good), or strong-arming the currents of the discussion through sheer force of will and credentials (though we need to magnify important voices), nor is the answer to dispense with authority altogether in the name of autonomy, as if patients could navigate the evermore labyrinthine and lonely paths of modern medicine without expert companionship. None of that will restore the solidarity and trust that we need to pursue health. But we would only care as much about solidarity and trust in this relationship as we care about the health it seeks. Although the tyranny of the urgent would threaten to overwhelm us, we need to return back to the beginning: what is health? In the school of that question, maybe we can remember what makes a clinician good and trustworthy.
Trajectories
Following a meandering reading-path, sharing some brief commentary along the way.
“The use of slow codes and medically futile codes in clinical practice”
This survey found that, at one institution (an important caveat), two-thirds of respondents cared for a patient who underwent a “slow code.” A slow code is when ACLS is carried out, well, slowly, and symbolically to satisfy the patient’s family. It’s deceptive, but 52% of these respondents felt the practice was ethical. There are many problems with keeping ACLS on offer no matter the clinical circumstances (in contrast to, say, any other procedure in medicine), but deceiving patients and others about what we’re doing isn’t the way to go about addressing those problems.
“Medical technologies past and present: how history helps to understand the digital era”
These authors take a fascinating look at three modern technologies (electronic medical records, telehealth, and DIY medicine/devices) through the lens of history. I don’t want to spoil some of the twists for you (and twists there are!). Instead, I’ll observe that this paper helped me better appreciate that sometimes we look at the medical profession’s history with rose-colored glasses when we compare it to today’s work, believing that clinicians of old all had Osler’s bedside comportment. How does the relationship between patients and clinicians now accommodate technology? How does that relationship use technology, and how does technology use that relationship?
A “good” hemoglobin A1c might not be good for an older adult. That might signal hypoglycemia is what’s gotten them the lower number. It’s probably wise to lighten up on the blood glucose control in older adults, and certainly be on guard for hypoglycemia.
“The Hastings Center Bioethics Timeline”
For anyone interested in bioethics and history, the Hastings Center has assembled a timeline of major events in the field of bioethics starting in 1946. I haven’t explored every nook and cranny of it, and I’m not qualified to say whether they’ve left something important out anyway. It looks like a useful resource.
“The need for ‘gentle medicine’ in a post Covid-19 world”
These authors propose that, given the current state of medicine, we need a renewed sense of when not to intervene. That wise non-intervention is what Jacob Stegenga called “gentle medicine.” Without straying into total nihilism, the authors argue that, in some areas, medicine just over-promises. Elsewhere, the practice of medicine has become deeply enmeshed with the financial interests of pharmaceutical companies (which, of course, want us to prescribe more). Trials are also heavily biased toward “doing.” Finally, “disease mongering” leads to a medicalization of nearly all areas of life. All of these problems elevate the need for that “gentle medicine.” I would add another: it’s not enough to simply withhold a medical intervention. We need to find a way to continue walking with our patients even when we do so. I’m reminded of something Diane Meier, a palliative care doc, once said: when the main way you’ve learned to show compassion is through some procedure, then you won’t know how to show compassion when that procedure isn’t (or is no longer) indicated. We need to renew a wise compassion that’s present whether or not it’s wielding a medical instrument.
“Experiences of patients after withdrawal from cancer clinical trials”
An interesting study that highlights in a unique way the therapeutic misconception so prevalent in clinical trials: "[Cancer clinical trials] represented hope or the key to survival." Even the authors do this as they refer to "treatment" throughout this paper. Although a good trial will have standard of care as the control arm, receiving the intervention under study isn't treatment. It's research. Which reminds me of this ethnographic study of a phase 1 research unit in Denmark where the authors discerned the different approaches scientists take to "caring" for the trial and transitioning people from being patients to subjects. I appreciate that the authors of the former trial recommended that "delivery of palliative care concurrently with disease-directed therapies should become a standard at cancer institutions." That won't change to a substantial degree until NCCN guidelines change.
“Optimizing clinical trial design with Bishal Gyawali”
A conversation between two oncologists discussing pitfalls in clinical trial design. Not being a researcher myself, I found great value in this discussion as a reader of the medical literature. Most of their examples are from the medical oncology literature, but it’s worthwhile even if you’re not an oncologist. Here’s the paper by Gyawali, et al. they’re discussing.
“Five things we need to know about technological change”
Neil Postman once gave an address on questions we should ask of new technologies. Will you wander with me for a bit in thinking how these apply to medicine? First, all medical technology comes with significant trade-offs - that’s obvious. But sometimes the trade-offs are hidden and not easily foreseen at the advent of the technology (e.g., the creation of chronic critical illness with the invention of the ventilator). Second, the advantages and disadvantages are distributed in uneven ways throughout the world - e.g., access to healthcare due to cost or geography. Third, powerful ideas live inside the innovations of medical technology - like we might be able to finally overcome some disease or even death itself. Fourth, medical innovation often results in cultural sea changes. With the invention of the ventilator, for example, you had a new way of medicine, not just medicine + mechanical ventilation. Fifth, medical technology seems to become a part of the lives of both clinicians and the seriously ill, at times even unquestionable. Just a brief survey there; I wonder where your imagination might go with Postman’s reflections.
“It’s easy to judge the unvaccinated. As a doctor, I see a better alternative”
"If shortages of personal protective equipment exemplified a fatal shortcoming at the start of the pandemic, I feel that we’re now dangerously low on meaningful dialogue." Sadly, dialogue will remain in short supply until we can believe that it's the key to living together and pursuing a common good together like I’ve written above.
“The limits of advance directives in maintaining autonomy in patients with advanced dementia”
"Advance directives usually are insufficient to prevent the feared outcome of loss of personhood and dignity in advanced dementia.” Even if they’re presuming this is how the public feels and not necessarily taking a stand themselves, statements like these reveal that some believe autonomy, intellect, and ability are enshrined as the true hallmarks of personhood and dignity. ADs like these are concretizing society's prejudice against the frail, vulnerable, and dependent, under the guise of "respecting autonomy." It fails to appreciate that our choices are culturally formative. Do we want to live in a society where we believe that those with advanced dementia have lost personhood and dignity? Who has maximal personhood and dignity in such a society? Human illness and suffering can be awful. But the answer isn't to degrade those people who suffer and end their lives.
It turns out families really struggle when their loved ones are locked away in ICU and communication is poor. These authors went the extra step beyond interviewing family members, though; they also solicited recommendations for improvement! Those recommendations fall into three alliterative buckets: contact, consistency, and compassion. This is great stuff for anyone caring for patients and their families in the hospital setting.
If chiding, shaming, and lecturing don’t work at the bedside in modifying health-related behaviors, why would we think it would work as a public health communications strategy?
An organized approach to framing a patient’s problems helps set you on the course to properly addressing those problems. One caveat is that not everything in the clinical encounter needs to be “problem-oriented.” The risk of such documentation is that it works backwards to form the entire clinical encounter, such that everything bends toward your problem list. Instead, keep in mind that sometimes you’re discussing health maintenance, sometimes you’re supporting someone through a tricky decision, sometimes you’re reflecting or envisioning together, sometimes you’re providing a compassionate presence.
“How the pandemic is changing the norms of science”
Science is a human endeavor. That doesn't provide absolution for the errors and wrongs committed by those engaged with it, but rather emphasizes the moral nature of the work. There was never a golden age of science in which its practice was pure from political involvement or human bias. In this way, the pandemic isn’t really changing the norms of science so much as exacerbating them. What we’ve seen is that the public (scientists included) often handles science irresponsibly and unwisely, and that the norms described by Ioannidis are insufficient for resisting the erosion of sound scientific practice.
“Euthanasia and assisted suicide: the illusion of autonomy”
Ole Hartling, former chair of the Danish Council of Ethics where euthanasia and assisted suicide have been extensively debated, writes, “All essential decisions that we make are made in relation to other people. Our decisions are affected by other people, and they affect other people.” I made a similar observation recently. Hartling goes on: "Patients must be at liberty to choose assisted dying freely...but the point is that the patient cannot get out of having to choose. It has been called the 'prison of freedom.'“ Nigel Biggar puts it in darkly poetic terms: “a patient ‘may truly want to die, but this desire is not the fruit of his freedom alone, it may be...the translation of the attitude of those around him...someone is cast out of the land of the living and then thinks that he...wants to die.’” It’s myopic to believe that assisted suicide and euthanasia won’t fundamentally alter the way medicine is practiced. Not only that, but the choices we make about our bodies don't just impact us. They form the culture in which we live. Again, do we want to make a culture in which frailty and dependence are hallmarks of a life unworthy of life?
“Holding hope for patients with serious illness”
These authors provide a helpful recommendation to “diversify hopes.” In situations where hope appears fantastical, I've found clinicians just keep hammering families with more information in an attempt to sway a decision. These clinicians might quote dire stats: he has a 1% of survival, for example. But the family may believe there's 100% chance of being in that 1%! Such is the power of the variety of hope that is very similar to knowledge (or at least feels like knowledge, and influences decision-making like knowledge). Rather than battering folks with more and more information, the clinician can help draw forth other hopes from the same well in which that first hope was born: the heart. That first hope may have shone so brightly that it hid from view these others hopes, but now these hopes can have their say too about the decision at hand.