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Part I
When All Is Well
These opening chapters will discuss the golden rule on which this book is founded: Patient agency in the world of modern medicine is of paramount importance. But before we delve into navigating that world, Iâll start with how most of us learned how to be a patient. And then promptly ask you to unlearn all of it.
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One
Where to Start
If you ever saw the film adaptation of Roald Dahlâs Matilda as a kid, you probably havenât forgotten the scene where Matildaâand all of us desperately rooting for herâare hit with some cold, hard truths about being at a power disadvantage:
âIâm big and youâre small, Iâm right and youâre wrong. Thereâs nothing you can do about it.â
Has being a patient ever made you feel, like Matilda, on the wrong end of this equation?
A power dynamic is consistently at play when healthcare encounters go south. Itâs often the culprit behind misdiagnosis, patient dissatisfaction with medical professionals, and disjointed, minimally helpful care to patients in emergencies or struggling with chronic illness. Itâs a reason some people avoid the healthcare system at all costs, and, on the extreme end of the spectrum, it contributes to medical error and death from preventable illness.
It boils down to this: You tell me whatâs wrong, I tell you what to do. Itâs an exchange that implies hierarchy and a one-way street. I have, you need. I know, you donât.
This is the model weâve been given: that patients are passive recipients of care. Itâs a model thatâs been reinforced by messages weâve internalized since we were kids.
From a young age, we learn that thereâs an agreed-upon role we play as patients. Simultaneously, we learn about social codes, and that there are some people in society we donât question. Most of them have uniforms so we can identify them more easilyâpolice officers, doctors, priestsâand basic ground rules apply to their station: You donât run from a cop, you donât curse at a priest, and you donât question a doctor. This white-coat syndrome, which weâll get to in the next section, affects us well into adulthood. Research has shown that most of us arenât even aware of its impact. Outside of this, we arenât taught how to be a patient. We donât learn in school, and itâs not a practice weâre set up to integrate into our lives like we might with yoga or healthy eating. We lack a model to becoming literate in matters of healthcare, or adept at navigating them. All of it adds up to a misguided message: that a patientâs role begins and ends with being compliant.
Our expectation for providers, in turn, is that they are to be infallible. We expect them to produce the right solution, at the right time, every time, for what ails us. Our opinion of them is primed to be so high that at times we not only relinquish power but even exclude from the realm of possibility that they could make mistakes.
With simple things like stitches and yeast infections, this model works. Itâs fine! We can walk in with a standard problem, get assessed, receive a diagnosis, and walk out cured or headed to Walgreens. But many medical encounters are more nuanced. The source of symptoms is rarely obvious, their solutions could come from multiple directions, and whether the course of action is right largely depends on communication, shared agency and shared decision-making.
Compounding all of this is todayâs badly behaving, dysfunctional medical-industrial complex, in which the passive patient model increasingly leads to troubleâeven when the problems are simple. Like all systems that ride on capitalism, its power is primed to be extreme and unrelenting, and its endgame is never your well-being.
At some point or another, each of us butts up against this model when we are subject to its flaws. For some, it happens when something more complicated than a cold arrives at their doorstep. For others itâs a reality well before that, due to barriers that make quality care out of reach for many people in our society. This reckoning might come after an appointment, when you realize you have no idea as to the plan moving forward. Or when youâre suddenly not sure if that appointment solved a problem or created new ones. For some, it comes with acquiring debt, or with realizing they were never fully informed about the risks of a procedure. The moment doesnât discriminate based on income, culture, or state of health. It comes for all of us, and itâs universally defeating.
Instead of putting a fire under patients to tip the scales, assert agency, and partner with their providers, this reckoning usuallyâand understandablyâleads to surrender. Have you felt disappointed when you couldnât get a diagnosis, or sheer fury when screwed by an insurance carrier? Have you thought: Iâm powerless and at a disadvantage, and itâs clear to everyone and completely unfair? And then later, when youâre really tired or really sick, thought, Well, this is how it is. What am I going to do? Not try to get better? Give up? And so you keep enduring the same injustices, because you need healthcare. This is rational, and youâre not alone.
Robb Willer, Stanford professor of sociology, calls this phenomenon the powerlessness paradox. In a social system like medicine, feelings of power determine whether people take on systemic oppression. When we feel powerful, we are more likely to oppose and act out against systems that oppress us, but, paradoxically, feelings of powerlessness cause us to support the existing order. Even when itâs putting us at a disadvantage, and even as weâre keenly aware of medicineâs limitationsâas we see disease win out, or learn men receive superior care to women.
Siddhartha Mukherjee frames the problem as a âqueasy pivoting between defeatism and hope.â The phrase, in its original context, is used to describe our fragile, tenuous relationship with a cure for cancer, but it lends itself to describing the balancing act required of all patients. Itâs the unrest that comes from depending on an imperfect process or system.
To be sure, this queasy pivoting, and the surrendering, is not reserved for patients. Your providers know it intimately. Some might be just as scarred by the system as you are, while others find ways to provide excellent care despite it. Itâs my belief that the qualities that lead people to the healthcare professionâcompassion, curiosity, empathy, a genuine desire to help othersâstill burn intensely in the people across from you at appointments, but for many they become casualties of the system. The powerlessness paradox is at play here too.
Medical providers do, of course, hold lots of power as well. And for good reason! They spent their golden years in the library, hospitals, and clinics learning how to heal us. It takes highly specialized training and a devotion to medicine to learn how to deliver a breach baby, excise a brain tumor, or reset a bone. That said, youâll have to step up to help them best wield it. A providerâs license to practice medicine does not mean that they know you or your body best. They will come to better decisions about how to use their expertise if you meet them in making decisions about your health.
A sage doctor once told me thereâs no worse transgression in medicine than doing something for a patient you decide is helpful, while not taking into consideration whether or not they find it helpful, only to learn itâs not, in fact, helpful. Thereâs a word for this in German, Verschlimmbessern, which literally means âto improve for the worseâ or, as my friend in Berlin translated for me, âworse-better.â In a system where one in four people receives excessive or unwanted medical treatment, itâs a term thatâs alive and well.
You cannot graduate from nursing school without hearing over and over again that your job is to meet people where they are: that you treat a patient, with a disease, in the context of a lived life.
We canât be diagnosed and treated in a Petri dish. Disease is never just its symptoms. It manifests in context, which is made up of lots of factorsâour mental health, our environment, our socioeconomic status, our race, our gender, our temperament, our educational level, our age, our family history, our mood when we walk into a clinic. What our world looks like the 99.9 percent of time that we arenât in an exam room. All these things make up a patient. It means an identical disease, risk factor, or symptom could look different in each person, and the best course of action to address it should be personalized.
Medical encounters, when theyâre rushed, tend to gloss over details about family history and mental health. They run the risk of omitting important questions, such as how much pain a patient feels they can live with, how they define quality of life, or how well they understand their disease. These are relevant, as later chapters will point out, in making decisions that are not black-and-whiteâfor instance, whether quality or quantity of time is more important to you. To have another round of chemotherapy or not. To proceed with a risky operation or wait and see. These all rest on context. In the first and most important act of agency, patients have to assume responsibility for conveying this context. Otherwise, providers will infer, assume, or base decisions on Jane, the simulated robot patient they worked with in school.
Patient Power Is Ultimate
In a study where patients were asked about their healthcare preferences . . . a lot of people started their answers with the words âWell, if I had a choice . . .â
And when I read that âif,â I understood better why one in four people receives excessive or unwanted medical treatment, or watches a family member receive excessive or unwanted medical treatment. Itâs not because doctors donât get it. We do. We understand the real psychological consequences on patients and their families. Half of critical care nurses and a quarter of ICU doctors have considered quitting their jobs because of distress over feeling that theyâve provided care that didnât fit with a personâs values. But doctors canât make sure your wishes are respected until they know what they are.
âDR. LUCY KALANITHI
You have a choice at every turn. This is the next thing to take to heart.
Like Kalanithi, I often hear friends and family, exasperated by their healthcare experiences or struggling with unresolved illness, say:
If I could have known that beforehand
If I could have made this decision earlier
If I could have told my doctor ânoâ
If I could have pressed the issue further
You can. To break down the power dynamic, itâs essential to realize this. Patients donât hear it enough for it to hit home, and even when they do hear it, they have trouble believing it.
One of the greatest mental shifts required is to realize that providers are there to counsel you through decisionsânot make them on your behalf or, worse, act with such authority as to imply there are no decisions to be made.
The goal of a medical encounter is to navigate health choices with your provider, who should inform and guide you through various options but should never dictate. The goal is to exchange what you both know and come to a decision together.
The final piece of the groundwork is realizing that as a patient, your power is ultimate.
When I was working in an acute mental healthcare setting, a patient case once caused a big stir around the nursesâ station. The patient himself wasnât the problemâit was the logistics of his discharge. In the hospital, a lot of folks (providers, soc...
