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New Book Explores Why Trust Is Vital For Doctors, Patients

New Book Explores Why Trust Is Vital For Doctors, Patients

Jan. 31, 2023 –In How Medicine Works and When It Doesn’t, F. Perry Wilson, MD, guides readers through the murky and often treacherous landscape of modern medicine. The book could well have been titled Marcus Welby Doesn’t Live Here Anymore. In Wilson’s view, Americans no longer trust their doctors the way they once did, and that lack of trust can have life-threatening consequences.

But patients aren’t to blame. Wilson – a kidney specialist at Yale University and a frequent contributor to Medscape, the sister company of WebMD – explains how charlatans have managed to blur the line between quackery and solid science-based advice, leaving Americans in a relentless tug-of-war for their attention, dollars, and, ultimately, their well-being. 

Meanwhile, he argues, doctors have created a “vacuum” for misinformation to fill by not working hard enough to build relationships of trust with their patients. Crucially, he says, that means being transparent with people, even when the answer to their question is “I don’t know.” Certainty may be reassuring, but it’s the exception in medicine, not the rule. Anyone who says otherwise – well, they’re selling something.

The good news, according to Wilson, is that with the right tools, people can immunize themselves against misinformation, inflated claims, and bogus miracle cures.

Below is an excerpt from How Medicine Works and When It Doesn’t: Learning Who to Trust to Get and Stay Healthy (copyright 2023 by F. P. Wilson, MD. Reprinted with permission of Grand Central Publishing).

How Medicine Works and When It Doesn’t

I lost Ms. Meyer twenty-five minutes into her first visit.

Doctors are often a bit trepidatious meeting a patient for the first time. By the time we open the door to the exam room, we’ve read through your chart, looked at your blood work, and made some mental notes of issues we want to address. Some of the more sophisticated practices even have a picture of you in the electronic medical record, so we have a sense of what you look like. I usually take a beat before I open the door, a quick moment to forget my research lab, my paperwork, a conversation with a coworker, to turn my focus to you, the patient, waiting in that room. It is my hope, standing just on the other side of an inch of wood, that you and I will form a bond, or, more aptly, a “therapeutic alliance.” I’ve always liked that term – the idea that you and I are on the same side of some great war, that together we can overcome obstacles. But that alliance doesn’t come easily. And lately, it has been harder to forge than ever.

Ms. Meyer was standing in the center of the room, arms crossed. Smartly dressed and thin, she lived in one of the affluent Philadelphia suburbs – on “the Main Line” – and it showed, in her subtle but clearly expensive jewelry as well as her demeanor. She looked out of place in my resident-run medical clinic, which primarily catered to less wealthy inhabitants of West Philadelphia. But what struck me most was the emotion that radiated from her. Ms. Meyer was angry. “What brought you here today?” I asked her, using my standard first question. Later in my career, I would learn to replace that line with something more open: “How can I help you?” or even “Tell me about yourself.” But it hardly mattered.

She was exhausted, she said. Almost no energy. So drained she could barely get out of bed. Unable to focus during the day, she tossed and turned all night and repeated the cycle day in and day out. It was, she said, simply untenable. I asked how long it had been happening.

“Months,” she said. “Years, actually. You are literally the sixth doctor I’ve seen about this.” Her anger broke to reveal desperation. Second opinions are common enough in medical practice. Third opinions, for difficult cases, are not unheard of. But I had never been a sixth opinion before, and I felt immediately uncomfortable. Notbecause I wasn’t confident in my diagnostic abilities – like all young doctors I hadn’t yet learned how much I didn’t know – but because I was worried that whatever thoughts I had about her possible ailment would not be enough. What could I offer that all these others couldn’t?

I kept my poker face firmly intact and waited.

Eleven seconds. That’s how long the typical doctor waits before interrupting a patient, according to a study in the Journal of General Internal Medicine. Determined to not be a typical doctor, I let her talk, in her own words and in her own time. I thought my attentive listening would frame our relationship differently – that she might see me as a physician who was conscientious, methodical. But it backfired. It was clear she resented the fact that she had to relay the same information to me that she had already told to the five doctors that came before me.

One of the most important skills a doctor has is to read the room. So I switched from respectful listening to diagnosing. I tried to troubleshoot symptoms of possible thyroid dysfunction, anemia, sleep apnea, lymphoma and other cancers. I asked about her family history, her history of drug or alcohol abuse, her sexual history. I even made sure I didn’t miss questions pertaining to pregnancy, because (this one comes from experience) you should never assume someone isn’t pregnant. I reviewed her lab work: Pages upon pages of blood and urine tests. Even CT scans of the head, chest, abdomen, and pelvis. Nothing was out of order. Nothing that we can measurein a lab or in the belly of a CT scanner, at least.

But her affect was off, and her mood was sad. Ms. Meyer seemed, frankly, depressed. There is a formal way to diagnose major depressive disorder; a patient must display five of nine classic symptoms (such as loss of interest in activities they used to enjoy, fatigue, or weight changes). Ms. Meyer had eight of nine, a clear-cut case of major depression, according to the diagnostic manuals. But was it depression? Or was it something else, and the frustration of living with that something else had led to depression?

The nine classic symptoms are far from the only way depression can manifest. As a disease that lives in the brain, the symptoms can be legion – and can lead doctors and patients on costly, and often fruitless, wild-goose chases.

“Listen,” I said, “not everything is super-clear-cut in Medicine. I think part of this might be a manifestation of depression. It’s really common. Maybe we should try treating that and seeing if your energy improves.”

Right there. That’s when I lost her.

I could tell from the set of her jaw, the way her eyes stopped looking directly at mine and flickered off a bit, centering on my forehead. I could tell from her silence, and from the slight droop in her posture, that she had lost hope. We talked some more, but the visit was over. There would be no therapeutic alliance. I asked her to call the number on the back of her insurance card to set up a consultation with a mental health professional and made her a follow-up appointment with me in a month, which she, unsurprisingly, missed. My rush to a diagnosis – in this case a diagnosis that comes with a stigma (unwarranted, but a stigma nonetheless) – drove her away from both me and from conventional medicine. And had she even heard a diagnosis at all? Or had she heard, like so many women have about so many concerns over so many years, “It’s all in your head”?

I didn’t see her for another year. When I did, she was having a seizure in the emergency room, the result of a “water cleanse,” anaturopathic practitioner had prescribed. Forcing herself to drink gallons of water a day, she had diluted the sodium content in her blood. When her sodium level got too low, her brain could not appropriately send electrical signals, and seizures ensued. She would survive, thankfully, and tell me later that she had never feltbetter. She had been told all her problems were due to heavy metal toxicity. (Lab work would not confirm this.) This diagnosis had led her into a slew of questionable medical practices, including regular “cleanses” and chelation therapy – where substances similar to what you might find in water softening tablets are injected into the blood to bind harmful metals. Chelation therapy runs around $10,000 to $20,000 per year and is not covered by insurance.

The striking thing was that she positively shone with confidence and hope. Lying in a hospital bed, recovering from life-threatening seizures, she was, in a word, happy.

And I felt … Well, to be honest, I think the emotion I felt was jealousy. It would be one thing if no one could help poor Ms. Meyer, depressed and unwilling to even entertain the diagnosis, but someone did help her. Someone whose worldview was, in my mind, irrational at best and exploitative at worst. My instinct was to dismissMs. Meyer as another victim of an industry of hucksters, as a rube. She had been taken in with empty promises and false hope, and some grifter had extracted cash from her in the manner of televangelists and late-night psychic hotlines. His “treatment” landed herin the emergency room with generalized tonic-clonic seizures that could have killed her. This was bad medicine, plain and simple.

But – and this “but” was why I continue to think about Ms. Meyer – in the way that mattered to her, she got better. The huckster helped.

It took me a long time to figure out why – fifteen years, actually. In that time, I finished my residency and fellowship at the University of Pennsylvania. I got a master’s degree in clinical epidemiology (the study of how diseases affect a population). I was brought ontothe faculty at Yale University and started a research lab running clinical trials to try and generate the hard data that would really save lives. I became a scientist and a researcher, and a physician caring for the sickest of the sick. I lectured around the world on topics ranging from acute kidney injury to artificial intelligence and published more than one hundred peer-reviewed medical manuscripts. And yet, somehow, I knew that all the research studies I did would be for nothing if I couldn’t figure out how I – how Medicine – had failed Ms. Meyer and all the people out there who feel abandoned, ignored by the system, or overwhelmed by medical information.

Why were people turning to their family and friends or social media for medical advice when physicians are willing and able to provide the best possible information? Was it simply the cost of healthcare? Or was something deeper going on? And though it took time, what I figured out will shine a light on why doctors have lost touch with their patients, why patients have lost faith in their doctors, and how we can get back to that therapeutic alliance that we all need in order to be truly healthy. That is what this book is all about.

It turns out the most powerful force in Medicine is not an antibiotic. It isn’t stem cell therapy, genetic engineering, or robotic surgery. The most powerful force in Medicine is trust. It is the trust that lives between a patient and a physician, and it goes both ways. I trust you to tell me the truth about how you feel and what you want. You trust me to give you the best advice I can possibly give. We trust each other to fight against whatever ails you, physical or mental, to the best of our abilities. Ms. Meyer did not trust me. That was my failure, not hers. And that personal failure is a mirror of the failure of Medicine writ large – our failure to connect with patients, to empathize, to believe that their ailment is real and profound, and to honestly explain how medical science works and succeeds, and why it sometimes doesn’t. We doctors have failed to create an environment of trust. And into that vacuum, others have stepped.

It’s not entirely doctors’ fault, of course. The average primary care physician has less than fifteen minutes to conduct a typical new-patient visit. If the doctor doesn’t stick to that time, the practice will go out of business – overwhelmed by payments for malpractice insurance, overhead, and dwindling reimbursements from insurers. It’s hard to create trust in fifteen minutes. Combine our limited schedules with a seemingly unfeeling healthcare system, which sometimes charges thousands of dollars for an ambulance ride to the hospital and tens of thousands of dollars for even routine care, and it is no wonder why, according to a study in the New England Journal of Medicine, trust in physicians is lower in the United States than in twenty-three other economically developed countries.

While the healthcare system and physicians are not synonymous, physicians are the face of that system. In earlier times, we ran that system. It is no longer the case. Most physicians haven’t realized this yet, but we are no longer a managerial class. We are labor, plain and simple, working for others who, without medical training but with significant business acumen, use our labor to generate profit for companies and shareholders. Part of the key torestoring trust between patients and doctors is for all of us to start fighting to reform the system. And doctors should be on the front line of that battle.

There is a right way and a wrong way to earn someone’s trust.One key lesson in this book is that it takes a keen observer to tell thedifference. Honesty, integrity, transparency, validation: These are good ways to create trust, and physicians need to commit to them wholeheartedly if we ever want our patients to take us seriously. Patients need to commit to honesty and transparency as well, even when the truth is painful. But less-than-scrupulous individuals can also leverage certain cognitive biases to create trust in ways that are manipulative. Trust hacking like this is a central reason modern medicine has lost ground to others who promise a quick fix for what ails you. It’s important not only to evaluate your own methods, but also to be able to spot whether someone is trying to earn your trust in an ethical way, to spot bad actors whose intentions may have little to do with actually helping you.

There are several ways to hack trust. One is to give an impression of certainty. The naturopath who treated Ms. Meyer was unambivalent. He told her exactly what was wrong with her: heavy metal toxicity. There was no long list of potential alternative diagnoses, no acknowledgment of symptoms that were typical or atypical for that diagnosis. He provided clarity and, through that, an impression of competence. To know who you can truly trust, you have to learn to recognize this particular trick – you have to be skeptical of people who are overly certain, overly confident. Health is never clear-cut; nothing is 100 percent safe and nothing is 100 percent effective.

Anyone who tells you otherwise is selling something. This book will show you how to grapple with medical uncertainty and make rational decisions in the face of risk.

Traditional doctors like me are trained early on to hedge their bets. Patients hate this. Ask a doctor if the medication you are being prescribed will work, and they will say something like “For most people, this is quite effective” or “I think there’s a good chance” or (my personal pet peeve) “I don’t have a crystal ball.” This doctorly ambivalence is born out of long experience. We all have patients who do well, and we all have patients who do badly. We don’t want to lie to you. We’re doing the best we can. And, look, I know that this is frustrating.

Neil deGrasse Tyson, the astronomer and brilliant science communicator, once wrote, “The good thing about Science is that it’s true, whether or not you believe in it.” When it comes to the speed of light, the formation of nebulae, and the behavior of atoms, this is true. The laws of the universe are the laws of the universe; they “change” only insofar as our tools to study them have improved. But Medicine is not astrophysics. It is not an exact science. Or if it is, we have not yet explored enough of the nooks and crannies of the human machine to be able to fix it perfectly.

Physicians, if we are being honest, will admit that their best advice is still a guess. A very good guess – informed by years of training and centuries of trial and error. But we are still playing the odds. Trust hackers, though, are never so equivocal. Ask your local homeopath how to cure your headaches, and you will be told they have just the thing.

You can also hack trust by telling people what they want to hear. For someone who is sick, tell them they will be cured. For someone who is dying, tell them they will live. For someone who feelsa stigma surrounding their depression, tell them it is not their own brain, but an external toxin, that is wreaking havoc. To know who to trust with your health, you need to first know yourself. You need to know, deep down, what you want to be true. And be careful of those who tell you it is true.

This skill, consciously avoiding the cognitive bias known as “motivated reasoning” (the tendency to interpret facts in a way that conforms with your desired outcome), is challenging for all of us – doctors included. But it is probably the most critical skill to have ifyou want to make the best, most rational choices about your health. The answer you are looking for might not be the right answer. That’s why we will discuss, right in the first chapter, how before you know who else to trust, you have to learn to trust yourself.

The community of people vying for your trust is truly massive. It spans individuals from your neighbors and your friends on social media to the talking heads on the nightly news. All of them are competing in a trust marketplace, and not all of them are playing fair. A smattering of recent headlines illustrates the overwhelming amount of medical-sounding “facts” you may have been exposed to: coffee cures cancer; depressed mothers give birth to autistic children; marijuana is a gateway to opiate abuse; eggs increase the risk of heart disease; eggs decrease the risk of heart disease. Each day, we are inundated with confusing and conflicting headlines like these, designed more to shock, sell, and generate clicks than to inform. I will give you the skills to figure out what health information can be trusted and what is best left unliked and unretweeted.

The information age brought with it the promise of democratization of truth, where knowledge could be accessed and disseminated at virtually no cost by anyone in the world. But that promisehas been broken. Instead, the information age has taught us that data is cheap but good data is priceless. We are awash in bad data, false inference, and “alternative facts.” In that environment, we are all – doctors and patients alike – subject to our deepest biases. We are able to look for “facts” that fit the narrative of our lives, and never forced to question our own belief systems. If we can’t interrogate the quality of the information we’re consuming, we can’t make the best choices about our health. It’s that simple.

When you read this book, you’ll learn that doctors aren’t perfect. As humans, we have our own biases. Rigorous studies have shown that those biases lead to differential treatment by race, sexual orientation, and body mass index. While most physicians are worthy of your trust, not all of them are. I’ll teach you how to recognize those who aren’t putting your interests first.

It’s not wrong to be skeptical of Medicine. Medical science has been developing, evolving, and advancing for the past one hundred years, and has had many stumbles along the way. Scandals from the repressing of information about harms linked to Vioxx (a drug that was supposed to relieve pain), to the effects of thalidomide in pregnancy (which was designed to reduce nausea but led to severe birth defects), to the devastating heart problems caused by the diet pill fen-phen remind us that the profit motive can corrupt the bestscience. Alleged frauds like the linking of the measles, mumps, and rubella (MMR) vaccine to autism diagnoses pollute the waters of inquiry, launch billion-dollar businesses, and leave the public unsure of what to really believe.

Why would I, a physician and researcher, highlight the failures of medical research? Because Medicine isn’t perfect or complete. It is also, in terms of the alleviation of human suffering, the single greatest achievement of humankind. But you need to understand Medicine, warts and all, to make the right choices about your own health. We must be skeptical, but never cynical.

This book will also detail some of the astounding successes and breakthroughs that medical science has made possible. For the vast majority of human history, life-or-death issues were determined by randomness or chance. Maybe it was a broken bone that prevented someone from hunting and gathering, or a cut on the arm that got infected, or a childbirth that developed complications for the mother and her child. It’s no mystery why before the modern era, one in four babies died before their first birthday. And those who survived their first year had only a fifty-fifty chance of reaching adulthood. These days, the script has been flipped. Ninety-five percent of humans born on Earth today will reach adulthood, and life expectancy has more than doubled in the last two hundred years. We’ve witnessed the near eradication of diseases like smallpox, rubella, and polio, which would have easily killed or disabled our ancestors, and we’ve achieved major advances in drug treatment and medical procedures that can prolong our lives despite the onset of deadly diseases. Medical science, translated from lab bench to bedside to the doctor’s prescription pad, has been nothing short of miraculous. It has transformed the human experience from lives that are, to steal from Thomas Hobbes, “nasty, brutish and short,” to the lives we live today, which, while not without their troubles, would be unrecognizable to our ancestors.

Here we stand, in the midst of a torrent of information that would have been inconceivable thirty years ago. Some of it is good, some is bad, but all is colored by our own biases and preconceptions. Decisions about your health happen every single day. If you want to be in control, you need to know how to separate the good from the bad, whether it comes from someone sitting atop the ivory tower, or from your friend on Facebook. This book is about medical science. But it’s really about learning to trust again. When you finish reading it, you will no longer be swayed by the loudest voice, the most impassioned plea, or the most retweeted article. You will be able to trust your doctor, trust yourself, and trust Medicine – our imperfect science and the single greatest force for good in the world today.

Excerpted from the book How Medicine Works And When It Doesn’t: Learning Who to Trust to Get and Stay Healthy by F. Perry Wilson, MD. Copyright 2023 by F. P. Wilson, MD. Reprinted with permission of Grand Central Publishing. All rights reserved.