Unlearn What You Know about Being a Patient
Before we delve in, a few subconscious obstacles to asserting agency during a medical encounter—and how to shed them.
I see red when I hear someone default to “he” and “doctor” as the universal nouns for people who practice medicine. It is antiquated and unhelpful to modern patients.
My insistence on using the term “provider” in this book isn’t just to avoid cluttered sentences, but also to try to resolve a larger issue with the way words and titles impact and reinforce social constructs. In today’s medical system, these constructs reproduce inequality and get in the way of care.
Let me explain how: A quick Google image search of the term “doctor” will yield predominantly men. There aren’t many women to be found. But type in “nurse,” and there are plenty. You don’t have to scroll far before the stuff of sexy Halloween costumes pops up. Our perceptions of medicine are deeply gendered, based on an underlying attitude toward nurses and doctors that is at its core a stereotype.
So it’s not hard to see why we default to “he” and “doctor” when referring to a hypothetical provider. It seems benign enough, but the language fails to challenge a deeply ingrained belief that when we are sick, we seek help from men in white coats. Our linguistic defaults devalue 34 percent of the physicians in our country (the female ones). And when we use the term “doctor” for anyone who oversees our healthcare, we erase fields of professionals who today serve care roles interchangeable with those of physicians.
A variety of types of medical professionals are providers, because they diagnose, prescribe, and direct a course of care with their patients. Some common providers include:
Physician, doctor: MD (doctor of medicine) or DO (doctor of osteopathic medicine)
Nurse practitioner: NP (nurse practitioner) or APRN (advanced practice registered nurse)
Physician assistant: PA
“Provider” can function as a catch-all label for these different roles.
Medicine can be seen as an interprofessional sport, in which nurses, pharmacists, therapists, and social workers among others are positioned to offer solutions and allay frustrations just as physicians are. Retraining yourself to see healthcare this way is critical to getting better care. There are always sources of support in our peripheral vision, people who can rise to the challenge and help, regardless of the letters after their name.
The white coat, imbued with authority and prestige, is a powerful article of clothing. Civilians feel more intelligent and capable when they slip into one, and several studies show many of us prefer that our providers wear one. When someone dons a white coat we take them more seriously, feel we are in more knowledgeable hands, and unconsciously slip into a role of obedience.
If you ever took an intro to psychology course, it’s likely you heard tales of the Milgram experiment. In 1961, shortly after the trial of Nazi war criminal Adolf Eichmann began in Jerusalem, Yale professor Stanley Milgram began what would become a seminal psychological study that attempted to quantify authority. His experiments involved a “teacher,” a “student” in an electric chair, and an experimenter in a lab coat. The participant, always given the role of the “teacher,” was told to shock the student if they answered questions incorrectly. With each incorrect answer, the participant was told to increase the voltage, assured by the experimenter in the lab coat that it didn’t hurt the student.
This was all staged—no one was actually being harmed—but the participant didn’t know this. The study found that the participant would continue to administer shocks despite staged cries and pleas from the recipient—even despite being informed that the recipient had a heart condition. The figure in the lab coat would say, “Keep going, you must continue”—and they did. (Milgram tapped into the power we assign to a lab coat, and consequently into our innate response to authority—showing that it’s a universal tendency.)
Infer what you will about our moral character, but something happens when we register a white coat, and the effect dates back centuries. Into the late 1800s, doctors wore black. They were considered charlatans, thought to prattle and quack about town. In an effort to rebrand, they donned the white coats worn by scientists, whose reputation was on the ascent during the Industrial Revolution. Doctors went on to perform lobotomies, decide vibrators cured hysteria, perform cigar-smoke enemas, dole out cocaine drops for children’s toothaches, and use mercury to clean wounds—all in white coats. Christiaan Barnard, the heart surgeon we’ll discuss in chapter 7, struck up a side business with Clinique La Prairie in Switzerland, where he developed “rejuvenation” therapy using injections of extracts from sheep fetuses.1 All the while, like others of his ilk, in a lab coat.
These micro-lessons in history teach us that we can’t discount the powerful and unconscious influence of the white coat. We see it, and we take a back seat. We trust, we nod, we feel honored and privileged to be in its presence.
This influence can quell our instinct to question, speak up, or challenge a plan that was set in motion without our full understanding. It’s the reason one in four people receives unwanted medical treatment, and the reason we’re inclined to please providers and averse to disappointing them.
As they say in French, “L’habit ne fait pas le moine”—the robe does not make the monk—and “la barbe ne fait pas le philosophe”—the beard does not make the philosopher. The white coat is simply that—an article of clothing. (By the way, these coats harbor disease! Studies have found that their sleeves are prone to carrying MRSA and other microbes, scattering them around rooms and between patients.)
The boy who picked his nose in your third-grade class? He’s probably off somewhere wearing one, a patient listening to his advice with bated breath.
Paradigm Shift: From Reaction to Prevention
The next important mental shift: Start thinking of healthcare as preventive rather than reactive.
Many illnesses and health emergencies are unavoidable, and no amount of planning or preparing will stave them off. However, those aren’t the majority of what sends us to the health system. Studies have confirmed that of the five leading causes of premature death in the United States—cancer, heart disease, stroke, respiratory disease, and unintentional injury—20 to 40 percent in each category are preventable.
It’s completely understandable if you avoid seeking medical attention out of frustration or fear. But routine medical care is essential for preventing disease across life, and receiving the best routine care takes facing the music. It takes interfacing with the world of medicine, and it takes a little investment. To go without established care can catch up with you and make life harder. It will make dealing with certain medical problems more time-consuming and expensive than it has to be. If you’ve ever sat in an ER waiting room with a non–life threatening (but really uncomfortable) medical problem because you didn’t know where else to get help, you know what I mean.
Avoiding preventive care can also cause economic burden. While routine appointments might seem financially inaccessible, going without that care can lead to even more expensive medical problems down the road as you age. (In the section “Getting Care When You’re Uninsured,” you’ll find ways to obtain many preventive services for free without insurance.) Part of establishing routine care is planning for and preventing these burdens.
It takes time to build relationships, familiarize yourself with resources, and understand medical culture. But when you miss out on these steps, dealing with problems only as they arise, you constrict the planning and art of being a patient. Coming chapters will provide tools for taking advantage of screenings, tests, checkups, and relationships to get the most out of routine care, but simply this mental shift from reaction to prevention will take you a long way to better health throughout your life.
Adopt Rituals: The Art of Being a Patient
My stepmother is the type of person who moves through the world with such ease and capability that it’s impossible not to try, or at least wish, to emulate her. If there’s a secret to living well, she’s figured it out.
To describe her as merely “capable” doesn’t quite do her justice, but it’s fitting. She lives on black coffee, fruit, and champagne; speaks multiple languages; builds houses from the ground up; tells men what to do before they open their mouth to tell her; and cooks meals for herself with a thoughtfulness typically reserved for hosting dinner parties.
She’s staunchly capable of doing anything she sets her mind to, on the condition that she enjoys it. And I don’t mean she only does things she wants to do, when she wants to do them. It’s quite the opposite: She sees each challenge as something that will accommodate her joy in return for her efforts, if she gives herself to it and sees it to completion. Her experiences give her what she asks of them.
My boot-camp-style immersion in her ways came one summer when I had less than a month to sell my house, pack my things, and move across the country to start graduate school. She arrived at my doorstep and within two weeks packed all my belongings (save the dog and his food) into a portable storage unit and mapped out a road trip. We sold the house with the help of her baking, which sent tantalizing clouds of the scent of fresh-baked cookies past the open-house sign and into the streets to lure potential buyers in.
It’s said that an epic move takes a toll that’s comparable to a death in the family—packing, organizing, parting with things and people. I dreaded these tasks to my core, approaching the whole affair with aversion. But with my stepmother, the experience felt more like a party. She insisted there was enough time to accomplish our tasks efficiently, and there always was. We made a surplus of good memories—ones I’ve bottled up and stored away for inspiration when a task feels insurmountable. We found a stride and celebrated achieving little goals. Somehow, we always found time to cook on each one of those summer nights, finish our books, and go for walks.
My stepmother does not lecture or teach (except on pragmatic subjects, like why to invest in a pressure washer). When it comes to the enlightened way she moves through the world, you just have to absorb it through osmosis.
One thing I’ve picked up on over the years is that she is a woman of rituals. The most contagious one, which I’ve adopted and passed on to friends, is the tradition of Champagne Sundays. A Champagne Sunday is just housekeeping—elevated. It’s a half day or so dedicated to dusting, Swiffering, and taking care of the week’s put-off chores, but with a spin involving champagne and speakers up to the challenge of blasting Fleetwood Mac. Of course, the bubbles and the music make the tiresome affair a bit rosier, but it’s more the intentional framing that makes it work.
These days I never think, Damn, I really need to spend time getting on top of this house. Instead I think, A Champagne Sunday is in order.
This can also apply to taxes. I know a woman who, each year, cozies up on the couch and commences doing her taxes while she watches the Academy Awards. She’s never bored during commercial breaks, she gets it out of the way early, and she’s started actually looking forward to the whole ordeal.
Another friend’s father taught her when she was little that washing dishes by hand was a privileged opportunity to practice zen. To this day, she insists on doing the dishes at my house every time she comes over.
Renowned Harvard psychology professor Ellen Langer showed the impact of mind-set through a study of hotel maids. She divided eighty-four maids into two groups: In the first cohort, researchers carefully went through the tasks the maids did each day and explained how many calories they burned, pointing out the myriad ways the maids’ work was a form of exercise that met the surgeon general’s recommendations for daily activity. The other group went about their tasks without the commentary from the researchers. Astonishingly, the study found that after several months, the maids in the first group experienced weight loss, decreased waist-to-hip ratio, and a 10 percent drop in blood pressure—just through the new mind-set that their jobs were physically good for them.
No one particularly loves or is enthusiastic about dealing with their healthcare. But if mind-set can literally change your metabolism and alter the way your body lays down fat cells, it can certainly make something unpleasant feel solidly good. It’s the Champagne Sunday idea at work.
We can use the idea of mind-set to dramatically reframe the way we approach being a patient, from the way we greet the tasks of scheduling appointments and getting flu shots, to dealing with insurance companies.
Couch healthcare tasks with personal indulgences. Add a sparkling incentive to achieving goals. Approach the job with friends and partners. Like the work of gardening, or making the bed, or setting up the coffee pot the night before—ritual feels good. It is a task up front, and a gift later.
You can look away when a medical bill arrives or work yourself into a conniption fit as you navigate the financial portion of your care—or you can use the experience to squeeze a little more delight into your month while checking things off your list.
Set aside one evening a month to review your insurance claims and status. Collect any Explanation of Benefits (EOB) forms, bills from therapists’ offices or hospitals, and statements about eligibility and open enrollment. Put them in a pile on the table in front of you, or collect them digitally on your screen. Highlight and note things that are unclear, or items for which you need to gather more information from your insurance company. It’s a chance to review everything in a low-stress setting, rather than randomly opening a claim after a long day of work and trying to ensure that there aren’t any glaring issues. If your bill of health has been complicated as of late, set aside additional time to review upcoming appointments, tests, and procedures for which you’ll eventually be charged. Most months this will be a pretty low-key task, one you can do while having a cold beer or watching a favorite show in the background. You can also make an outing and do it at a coffee shop.
Carve out time to call your insurance company. If you feel like overachieving, you can call them the same evening you do your review, or give them a call the following day. Many companies have limited hours, so you may need to call during work or other scheduled activities, but many do take calls outside the hours of nine to five.
Find friends or neighbors in the same boat (this may be easier than you think). If you or someone you provide care for has frequent encounters with the medical system, have a potluck or dessert hour. Brew a pot of coffee and dedicate an hour where everyone can work through their insurance papers. It’s nice to be at a table together, with support for a task that can be depleting when faced alone. Tips and tricks of the trade will inevitably surface around the table.
Dangle a carrot for yourself. When something must be dealt with right away, like determining coverage for a procedure (see “Healthcare Bluebook,”), pick a reward, like going to a movie alone, taking a bath with fancy salts and oils, or opening the good wine.
Me: Dad, how’s your health?
Dad: It’s great. Tomorrow I’m going to see my gynecologist.
—LISA FITZPATRICK MD
Have you ever glazed over as a provider started speaking Medical Encyclopedia, snapping back to attention at: Any questions? Pretended to understand something because you felt too intimidated to ask a question, or agreed to take a medication or follow a protocol, but not really understood why you’re supposed to? If so, you’re not alone. Something about the medical encounter makes us want to appear competent, and there’s a commonly held belief that medical knowledge is (or should be) common knowledge. That everyone else besides you knows where the pancreas is, or what diuretics do, or what hypertensive means.
One of my own patients recently described being in a hospital as akin to being in another country. Studies indicate that 88 percent of the US population lacks sufficient health literacy, and the deficit is not only linked to confusion but to poorer health outcomes.2 Health literacy has to do with how you read a pill bottle and decide on a dose, how well you understand a normal blood pressure range, how you respond when you run out of a medication. When individuals don’t have access to health information in a form they can understand, it impacts all of these things, including how they navigate insurance, fill out complex forms, and assess risks and benefits of treatments. For the majority, navigating healthcare is not entirely different from trying to follow a recipe written in another language.
When patients walk out the door of their provider’s office without a solid understanding of the exchange or the plan, they do not get a full opportunity to understand the intricacies of their disease and how to manage it out in the real world. Some avoid seeking medical care in the first place because it’s demoralizing. I’ve had patients tell me outright they skip appointments because they know they’ll be handed a clipboard of paperwork and they don’t read well. Social determinants such as race, age, education level, and income bracket are correlated with health literacy, however, it’s a barrier to care for people of all walks of life and educational backgrounds.
Ultimately, it’s a matter of patient empowerment. There is a chasm between what providers know, and what patients can and need to understand. Some providers traverse it more elegantly than others. There are national efforts to improve the way clinicians attend to matters of health literacy, but in the meantime there are two aspects to achieving better health literacy that you can address yourself.
Improving Your Health Literacy Before You Have a Specific Health Situation on Your Hands
This section exists within “When All is Well,” because there are specific ways to give yourself a boost in the health literacy department before you need it. The first step involves dictionaries.
When it occurred to me that you don’t have to be a nurse to use a nursing reference, I started telling friends and family to download the two apps I used most frequently in nursing school: the Farlex Nursing Dictionary and Epocrates.
The Farlex Dictionary allows you to quickly find the definition of any medical term that could possibly be tossed around. As it’s meant to be something nurses can use on-the-go at the hospital or clinic, the interface is exceptionally simple. You just enter a word and it populates a short definition followed by additional information if you choose to keep scrolling.
I use the Epocrates app for medications. Accurate and comprehensive, it allows you to look up all drugs, including over-the-counter medications like Zyrtec and Advil, and easily find what they’re taken for, what they do in the body, their different names, and their interactions with other drugs. The app will also tell you what type of patient isn’t a good candidate for taking the drug (for instance, someone over sixty-five), and the most magical feature: it allows you to enter in the shape, color, scoring, and imprint of any pill and it will identify the drug for you.
If you prefer not to use your smartphone for yet another thing, or if, like me, you have an affinity for paper dictionaries, there are great equivalents! Taber’s Medical Dictionary is a classic and one of my favorites, and the Davis Drug Guide, another nursing go-to, comes in a pocket-sized version that’s easy to tote around.
Next, because health literacy is about competency and not just language, prepare yourself in basic first aid. Created by the American Red Cross, the First Aid App puts information about what to do in medical emergencies at your fingertips. Everyone should have it and peruse it now and then for muscle memory.
In addition to the resources outlined above, including information on what to do in emergency health situations and how to relay questions to providers which will come below, know that virtually every aspect of this book was designed with health literacy in mind. The Patient’s Guide to Health Literacy didn’t sound quite as fun as How to Be a Patient, but you get the gist. Consider this book a graduate level course on the subject!
Advocate for Yourself During Appointments to Ensure You’re Getting Useful Information
The pearl here is to ask questions. And plow through any of the barriers (both those you impose on yourself and those imposed by the system) that prevent you from doing so. This topic is of such importance there’s an entire chapter dedicated to it to come, but for now just remember to ask boldly and frequently, knowing you’re in the company of most adults everywhere when you don’t understand something.
The 1983 biographical film Silkwood tells the story of workers in a plutonium factory in the American South who start to develop various cancers and other health problems. One by one they drop like flies, as the plant owners hide any trace of the diseases’ connection to the work environment. Meryl Streep plays Karen Silkwood, the film’s heroine, who becomes a nuclear whistleblower after realizing she and her colleagues are being exposed to copious amounts of radiation.
Work hazards, living conditions, geographic exposures, and life stressors are real determinants of health. There’s an old tale that if you’re a provider and hundreds of people from your town start coming in with diarrhea, you can give out prescription after prescription for antibiotics, or you can ask what the hell’s in the water.
Rezoning laws and rent increases can cause chronic inflammation. Institutional racism and toxic stress can cause low birth weight. Exposure to air pollution can affect inflammatory, autonomic, and vascular processes. Anxiety disorders are more prevalent in areas with a high degree of urbanization. Access to recreational facilities, land-use mix, transportation systems, and urban planning and design are linked with overall cardiac health.
Nurses can corroborate these claims. Every day we see disease exacerbated by chronic stress, and chronic illness born of environmental factors. The field of epigenetics continues to shed light on these connections, demonstrating the ways our environment alters our health at the level of the chromosome, impacting which genes are expressed and which are silent.
Karen Silkwood and the doctor who looks to the water in the old saying are both upstream thinkers. They search for the root causes and determinants of disease, whether they are environmental or social. For public-policy makers, being an upstreamist means exploring environmental causes of disease in order to ameliorate challenges facing healthcare. For providers, it means focusing on preventive rather than reactive treatment, or focusing on the disease process much earlier on in its trajectory. For patients, it means sharing information you might not at first glance find relevant to your health.
Good providers and nurses consider general trends and sources of disease in addition to the biological evidence in front of them, but they need your communication to put the pieces together. If you live in hazardous conditions or you’ve experienced a significant life stressor (such as the death of a loved one, or a trauma), tell them. If you struggle with obesity, diabetes, or other variants of metabolic syndrome, ask them how your physical environment could be contributing to your disease. If you have asthma, discuss the places you spend the most time, and see if there might be a connection. Think about whether your friends or family members have struggled with what you’re struggling with.
Being an upstreamist means learning to think beyond your symptoms and prompting your provider to do the same. Information you’d usually omit might end up being key to a diagnosis. If you don’t take your environment into account, you might find relief—only to return to the places and circumstances that made you sick in the first place.