How To Find The Right Specialist

Whether you are trying to find a diagnosis or get better treatment, here's how to find the right doctor, from a woman who knows.

In 2011, I was diagnosed with stage four gallbladder cancer, a rare condition that’s almost always fatal within months. The reason I’m still alive is that as an experienced researcher, I was able to find experts who provided innovative care. So, from one patient to others, here are some suggestions on how to do it.

Find A List, Then Consider How It Was Compiled

If you type keywords, such as your diagnosis or symptoms, into a search engine like Google or Bing into find a specialist, the websites that turn up are likely to provide similar information about each doctor’s education, years in practice, and board certification. They might, however, differ in how they select doctors for inclusion.

The most comprehensive list is maintained by the American Medical Association, which says that its Doctor Finder database includes “virtually every licensed physician in the United States.” With more than 814,000 listings, it’s searchable by geography and specialty… but you might find yourself drowning in options.

Insurance company websites, by contrast, are likely to list only in-network doctors, as medical center websites list only doctors who practice at that facility. Similarly, Medicare’s Physician Compare, which offers unusually detailed information about each doctor, includes only those who accept Medicare. If you need a specialist within a particular network or geographical area, you could start with these websites to identify the most promising possibilities, and then use other tips in this list to decide which of them is best for you.

Still other websites list only doctors who pay to be included. An example is  ZocDoc, which matches patients with doctors who have immediate openings.

Photo by Sarah Pflug from Burst

Be Picky!

Look, you want the best specialist you can find. The trick is how you find that person.

To find doctors selected for their accomplishments, a long-standing option is Castle Connolly’s Top Doctors list of physicians nominated by other physicians and then vetted by a review team. Although individual physicians cannot pay to be included, medical institutions can pay to allow free public access to detailed information about Top Doctors at those institutions. By contrast, only the names of other Top Doctors are available unless you pay for access to additional information. Alternatively, you can use other tips suggested here to learn more about a Top Doctor once you have the name.

You want the best specialist you can find. The trick is how to find that person.

Among newer, free-of-charge websites that use evaluative criteria is Amino, whose research includes such factors as insurance claims, medical billing records, how likely doctors are to perform certain procedures, and how many patients they see with a particular condition. Since doctor-finder websites are many and varied, it’s worth searching for something like “physician-patient matching” for a list of available websites.

Always Check The Source

There’s a lot of noise out there when it comes to finding a medical specialist. There’s also a lot of sites that are just trying to scam you. Make sure when you’re searching for a specialist, you know that the source recommending them to you is who they claim to be.

There’s a lot of sites that are just trying to scam you.

In addition to clicking the “About” tab on each website to learn how it selects doctors, you might also look at the URL. For instance, even if a website’s title includes words like “national,” “federal,” or “government,” it’s not a government source unless the URL ends in .gov.

And before relying on any website not associated with a well-respected medical center or a legitimate organization like the American Cancer Society, it’s a good idea to look for reviews of the website itself. If there are no reviews, it is, at best, not a well-substantiated source.

Photo by Matthew Henry from Burst

Don’t take Patient Ratings at Face Value

Patient ratings of physicians are widely available on websites such as Healthgrades,,  U.S. News Doctor Finder, Angie’s List, and Still, tempting as it may be to use consumer satisfaction to choose physicians as we do toasters or cellphones, those grades can be misleading.

Consider, for instance, a search I just did on Angie’s List for internal medicine physicians in my area. Several doctors have a grade of A, indicating their average score. Then comes someone with a B, and many patients might stop there and choose one of the A’s. But of that doctor’s eighteen reviews, seventeen are A’s, with glowing descriptions of her thoroughness and caring attitude. A single F dropped her average to a B; the reason given is that the staff didn’t answer email quickly enough.

Try to look at the big picture, not just the rating.

Of course, if patients consistently made the same serious complaint, that would be cause for concern. But as a Consumer Reports summary of a study in the Journal of the American Medical Association points out, most doctors don’t get enough reviews to provide a reliable guide. Moreover, as WebMD observes, the objectivity of ratings websites may be open to question if they accept advertising from doctors or offer paid profiles.

The lesson? Try to look at the big picture, not just the rating.

Hospital Quality Matters

Some institutions are more competitive than others, and their teams have more experience with rare conditions and procedures. Websites like Consumer Reports, Medicare’s Hospital Compare, and U.S. News Best Hospital listings can help you identify top institutions, as well as providing data on such measures as safety ratings, surgical complications, and hospital-acquired infections. These ratings aren’t as useful as they might be, since not all hospitals report all, or any, of the requested information. Still, they’re a place to start.

There’s Always Pay-To-Play

If you prefer, you can have a professional service select a specialist for you. I’ll use Grand Rounds as an example, since it’s included in the health care plans of several large employers, such as Comcast, Wal-Mart, and Costco, and is also available to the public.

Grand Rounds will connect you with a specific doctor based on such things as where they trained and where they practice, how often they’ve performed certain tests and procedures, and patient outcomes. Unless covered by your employer, the service costs $599. Grand Rounds will also commission an online second opinion by a prominent expert for $700 to $7500.

Wrapping Up: How Do You Know When to Stop?

You’ve probably heard about patients who suffered for years before finding the right diagnosis or treatment. For them, persistence paid off. But you’ve probably also heard accounts of patients, or their loved ones, prolonging terrible pain and expense by refusing to accept the limits of medical knowledge, or the futility of prolonging life in a body that’s no longer viable.

When I faced that question in 2011, I consulted eight doctors before finding the surgeon who saved my life. For me, the search was justified because I was healthy enough to live for years if the cancer could be eliminated, and because my diagnosis was so rare that much of what doctors said was based on assumptions rather than data. Under those conditions, I kept searching for a top-tier expert who’d consider my specific case with an open mind.

Whenever serious sickness or injury strikes and your body or mind breaks down, the vital questions are the same…

Photo by Sarah Pflug from Burst

I’d like to think that if I’m ever in a situation where medical intervention is useless, I’ll have the sense to choose comfort care — but no one can be sure of that. With life itself on the line, those decisions come as much from the gut as from the brain, and no formula can provide a flawless answer.

So, along with the practical suggestions offered here, I add some advice from Dr. Atul Gawande in Being Mortal.

“Whenever serious sickness or injury strikes and your body or mind breaks down, the vital questions are the same: What is your understanding of the situation and its potential outcomes? What are your fears and what are your hopes? What are the trade-offs you are willing to make and not willing to make? And what is the course of action that best serves this understanding?”

Acute Illness The Good Fight

Ending The End-Of-Life Conveyer Belt

Dr. Jessica Zitter, the subject of a new Netflix documentary, says that patients and doctors both are in denial about death, and that denial leads to more suffering than it saves us from.

From the time she was a young girl playing with her surgeon father’s doctor bag, Jessica Zitter wanted to save lives. In medical school, Zitter specialized in critical care, which she saw as “the ultimate hero’s specialty,” and later became an Intensive Care Physician.

As a young intern working on an ICU, she never imagined that, twenty years later, instead of trying to prolong lives at all costs, she’d be working to help patients experience what she calls “a good death.” Now, in the Intensive Care Unit at Highland Hospital in Oakland, California, Dr. Zitter leads a team that helps terminal patients prepare to die. Her work is the subject of the Netflix documentary Extremis, as well as the focus of her recent book, Extreme Measures: Finding a Better Path to the End of Life.


Jessica Zitter. Photo: Michael Kowano

Zitter’s current medical practice, a rare combination of Intensive Care and Palliative Care, evolved in response to a trend she observed in the medical world: Both doctors and patients have a tendency to avoid talking about death—a form of collective denial that “fuels a tremendous amount of suffering.” One in five people in the United States dies in an Intensive Care Unit, usually in cold and clinical surroundings, isolated from their families. Elderly and terminally ill patients are painfully intubated and catheterized before dying on what Zitter has dubbed the “End of Life Conveyer Belt.” While desperately working to keep patients alive at all costs, doctors often don’t realize when these efforts cause more harm than good.

Both doctors and patients have a tendency to avoid talking about death—a form of collective denial that “fuels a tremendous amount of suffering.”

In Extreme Measures, Zitter makes a compelling case for increasing compassionate, patient-centered palliative care in the modern medical establishment. Through rich patient histories drawn from her work in more than twenty prestigious hospitals, she chronicles her shift away from the ICU’s fervent push to prolong lives at all costs and toward holistic palliative care. Here, Zitter discusses the fiery nurse and two patients whose end-of-life experiences shaped her thinking about palliative care, and the need for revised societal approaches to talking about death.

Pat Murphy

Dr. Zitter’s epiphany moment came in 2003 when, as a new attending at University Hospital in Newark, New Jersey, she was about to insert a catheter into the neck of a dying patient. There is probably no turning this around,” Dr. Zitter remembers thinking—the patient’s kidneys were failing, her liver was shutting down, her blood pressure had plummeted dangerously low, and the acid level in her blood was dangerously high—“but we might as well give it a try.” For doctors armed with miraculous life-extending technologies, letting a patient die often feels like failure—or a kind of murder—even when it’s the most humane option.

With needle hovering, Zitter felt the glare of Pat Murphy, the nurse who ran the family support team, an early version of a palliative care team. “Pat stood in the doorway and pretended to call the police,” Zitter says. “She held an imaginary phone to her ear and said, ‘Nine-one-one, get me the police. They’re torturing a patient in the ICU.’ I knew she was right.”

“She held an imaginary phone to her ear and said, ‘Nine-one-one, get me the police. They’re torturing a patient in the ICU.’ I knew she was right.”

Zitter realized she’d been doing this a lot—performing painful interventions that might technically prolong patients’ lives, but that ultimately wouldn’t help them recover. “Often, because they were beyond recovery,” she says. “And I was doing it without really explaining the full range of options, or giving them an honest assessment of their prognosis.”

That day, after Pat mimed calling 911, Dr. Zitter inserted the catheter anyway. It did not prolong the patient’s life. But the experience started Dr. Zitter on a different path, one that led to advocacy for a very different way to treat the dying. “What I learned from that case—in addition to the fact that we needed to have a more patient-centered, honest approach—was that it’s really hard to stop a moving train,” Dr. Zitter says. “We need structures in place before someone is in extremis, protocols that can help us be lithe on our feet and shift the plan as needed depending on what is best for the patient.”


By the time Dr. Zitter met Vincent, an 85-year-old nursing home resident in Newark, New Jersey, he “was no longer really with us,” Zitter writes. He had entered the ICU with septic shock from pneumonias caused by food coughed into his lungs, which required surgeons to sew a feeding tube sewn his stomach through which artificial nutrition could be pumped twenty-four hours a day. “The only signs of life occurred during dressing changes and bed turning when, despite extra medication, pain fired up in dormant neurons and his blue eyes flared,” Zitter writes.

Vincent had no friends or family to provide guidance for doctors’ treatment goals. The only thing they had to go on was the Advance Directive Vincent had signed ten years earlier, indicating his wish that doctors pursue every possible attempt to prolong his life in the event that he can no longer speak for himself. Double-stapled to the form was note Vincent had written on lined paper: “To any doctor who will take care of me in the future,” it read, “I want you to do EVERYTHING in your power to keep me alive AS LONG AS YOU POSSIBLY CAN!”

Long before they are ill and can no longer speak, people need access to the kinds of resources than can enable them to make truly informed decisions about how they want to live their lives.

Legally, Dr. Zitter and her team had to follow this Advance Directive, which meant they used technology to “keep Vincent’s body going even while it was trying its hardest to die,” Zitter writes. Over the course of nine visits to the ICU, Vincent had a breathing tube sewn permanently into his neck, as he’d become too weak to support his own breathing, and a tube sewn into his bladder because of his chronic urinary tract infections. On the ninth admission, “this man’s body was being eaten away to a degree I had never seen,” Zitter writes. A month later, he died during continued deliberations—after suffering that Zitter viewed as needless.

“I don’t think Vincent could have had any idea of how much pain and suffering he would endure as we followed his instructions,” Dr. Zitter says. “I fervently wished I could have traveled back in time with Vincent to lay out the various ‘what if’ scenarios that he might encounter, including all of the grisly details, to confirm that he actually wanted what we gave him. Uninformed decision-making can be as bad as no decision-making at all.” Sometimes, as in Vincent’s case, it can be worse. “Long before they are ill and can no longer speak, people need access to the kinds of resources than can enable them to make truly informed decisions about how they want to live their lives. Right up until the very end.”

Marcia Green

“Patients trust that we are working in their best interest, and so if we continue to offer them interventions—miracle treatments and Hail Mary passes—they will sign on,” Dr. Zitter says. “If that’s the only model of care they are offered, what other options do they have?  But I meet so many patients who tell me that they didn’t know there were other options, or even that they had a choice.”

Marcia Green was one of these patients. When she was diagnosed with metastatic lung cancer with a malignant pleural effusion, her doctors told her she would receive chemotherapy to minimize the effusion. This would be a weekly process, for six weeks, and an excruciating one—but her doctors’ guidance led her to believe she had years left to live, and she thought the fight would be worth it if it meant spending more time with her children and grandchildren. After five out of six courses of unsuccessful chemotherapy, though, Dr. Zitter knew this wasn’t the case. “And I knew from ample experience that if I didn’t tell her she was dying now, she might never be told,” Zitter writes. “And this woman had run out of time.”

The honest conversation Dr. Zitter had with Marcia about her prognosis ended in both of them crying and holding hands. “Twenty years I’ve been doing this and it has never gotten any easier,” Dr. Zitter writes. But the following morning, after Marcia and her family had decided to set up hospice care at home, “the mood was almost celebratory.”

“We must be able to offer a variety of approaches to patients with serious and terminal illness, including palliative care and hospice.”

“She was so relieved to know there were options for care other than the chemotherapy that was ruining what remained of her life,” Dr. Zitter says. “We must be able to offer a variety of approaches to patients with serious and terminal illness, including palliative care and hospice. That way, we enable them to make choices aligned with their own values and preferences.” Marcia got “four good weeks at home,” playing Scrabble with her children, snuggling with her grandchildren in her hospital bed, and drinking good wine. She died at home in her daughter’s arms. Dr. Zitter attended her funeral—a “celebration of her life”—at which the family thanked her repeatedly for giving them the time with her that they had.

“I see so many patients, so many lives,” Dr. Zitter writes. “Very few have this opportunity to live life all the way through to the end.”

The Way Forward

The cover to Zitter’s book, Extreme Measures.

Zitter acknowledges the staggering difficulty and complexity of the issues she raises. “I have come to see that there are no clear blueprints to follow,” Zitter writes. “There are no easy answers. I cannot pursue my ICU instincts without seriously weighing my palliative care ones, and vice versa. I cannot assume that the way I treated one patient is the way I should treat another.”

Policy changes won’t be enough to make patient-centered end-of-life care become the norm in the American healthcare system. Cultural change is required, too—in medicine, in families, and in schools, “such that we begin to treat death the way we treat other important moments in life—with planning and intention, rather than a recipe book of protocols,” Zitter says. “It is going to take us all working together—patient, nurse, family and doctor. We need to ask and expect more from each other.  More honest communication, more attention to the patient’s preferences and values, less denial.”

Chronic Illness Essays

I Fake Sick For A Living

Medical students need to practice their diagnosis skills on someone, so they practice them on me. I'm a standardized patient.

As I sit on the exam table in the sterile cocoon of my doctor’s office, clad only in a hospital gown and neutral beige undergarments, a lonely feeling comes over me.

Who am I today? Michele Jones? How long have I been married? When did my symptoms start? What am I supposed to say, when the young person in the white coat asks me what brings me here today? “This stomach pain just won’t go away.”

I rehearse my lines and pertinent medical history, waiting for the announcement that the medical students are on their way. I’m to appear worried, but not overly anxious.

Then there’s a knock on the door. It’s show time.

Being a standardized patient (SP), or a medical actor is strangest job I’ve ever had. I portray fictional patients in simulated patient visits with first, second, and third year medical students. All the “encounters”–as they are called–are filmed and recorded so faculty and students can review them to further learn what part of the exam went well, and what if anything, needs improvement.

If you’ve ever seen the episode of Seinfeld where Kramer gets ‘typecast’ for his bravado portrayal of a patient with gonorrhea, it’s riffing–humorously, but inaccurately–on the job of a standardized patient, One day, I could be an unemployed generation X-er suffering from anxiety. (Been there, done that); the next, I might be a menopausal woman hitting the ER with a compendium of symptoms designed to make even Dr. House blanche.

Sitting in the SP break room is like being backstage on a hospital TV sitcom. The ambiance is supportive and jovial, with many SPs coming from all different career paths. (Actors, retirees from education, hospitality, health careers). Unlike Cosmo Kramer’s scene-chewing, though, I don’t give emotional monologues and there is no dramatic stage lighting. SPs aren’t handed out diagnosis cards. We aren’t privy to what we have. Depending on the case(s) of the day, there will be ten to twenty of us, dressed in hospital gowns, slip socks, and bathrobes, drinking coffee, while we practice the day’s case, quizzing each other on the details of the patient’s history and chief complaint, in order not to miss anything the student asks.

I try to find something in common with every fictional patient I portray.

We all have tricks to remembering case details. I doodle body parts and symbols to remind myself of the location of pain or progression of symptoms. It also helps when an SP with theater background re-enacts vomiting, or shortness of breath, offering me free acting tips. I try to find something in common with every patient I portray. If the fictional patient is worried about a sudden frightening symptom, I’ll recall how scary it felt to wake up with chest pains 8 years ago, only to find out it was a case of pleurisy–an ailment I’d literally never heard of until then.

You might well wonder how I ended up pretending to be sick for a living.

Last January, I began a half-hearted search for an admin job at local colleges. The few job interviews I scored felt awkward, and by spring, rejection letters starteds dribbling in. I blamed it on my extended hiatus from the 9-to-5 life: a freelancer for years, the last full-time admin job I held was during the Clinton administration. Trying to distract myself from my disappointment over how the job search was going, I cracked open The Empathy Exams by Leslie Jamison, which explores her experience as an SP.

A lightning bolt struck me. I could do this! I’m comfortable in medical environments, enjoyed acting in high school and college. Before I even finished the author’s essay on being an SP, I had started searching for standardized patient jobs in my area, which landed me at Albany Medical College. After attending an informational meeting, a formal job interview, passing a mock trial, an employee physical, and the onerous application and background check, I’m back in the workforce, part time.

The specialized work of the standardized patient requires many of my unmarketable skills: offbeat humor, a capacity for deep unpleasant conversations, a curiosity in behind the scenes medical situations, and the ability to make stuff up on the fly. It is not for the super self-conscious. I memorize the case script, and listen quietly to students pore over symptoms and possible diagnoses. After my performance, I offer brief constructive feedback on the student’s communication skills using a checklist, while a seasoned 4th year medical student gives feedback on the choreography and organization of the exam, as well as more technical advice in non-translatable medical lingo.

Either way, I’m always rooting for the medical student no matter what snafu.

During these make-believe doctor visits, I have to multitask. In addition to performing a role, I take mental notes when a student misses an opportunity for empathy, or uses too much medical jargon, or asks a question in a judgmental manner. Many times the student’s natural compassion and confidence comes through, and I only have flattering feedback to offer. But sometimes, an unexpected symptom can stump a student into a brain freeze, and the flow of the patient rapport can be derailed. Either way, I’m always rooting for the student no matter what snafu.

The first time I participated in a physical exam practice, I was a little nervous. While all the other SPs were relaxed and chitchatting before First Year physical exam practice, I was as anxious as if I was going to a real visit to the doctor. What about my decrepit toenails? What if I sneeze or my stomach grumbles really loudly? I should have flossed today. Sporting my hospital gown and carrying a cup of water and my drape, I scurried to my assigned room. But as soon as I saw the student was way more nervous I was, I remembered that this is not about me: we are all just glorified bodies for the students to practice upon. My main mission here is to be my supple soothing self.

After five minutes, the student gets into the zone. One fellow SP told me that she silently screams positive affirmations in the hopes to calm the few very nervous students. I try it out. “Everything is going to be fine. You got this! You’ll be doing in your sleep in a few years!” It’s very rewarding for SPs who work at the same medical college for a graduation cycle, to see uncertain students grow confident and hone their patient rapport and history collection skills through encounters through their second and third years.

As part of my training, I had a physical exam by one of the faculty members, who went through the procedure that the students would be performing. I knew to expect the Babinski (scraping the sole of the foot in a certain obnoxious way to check for plantar reflex) or the dreaded thyroid test, which has been my biggest challenge: I’m ticklish, so it’s hard not to laugh as the student checks my thyroid by putting her hands around my neck. But I always try my best.

We standardized patients aren’t just actors. We’re educators.

When the case involves a physical exam, I have to remember more parts, because during feedback I may be asked how I felt during the physical exam, and I can bring up anything that I really appreciated (for example, asking me if I’m comfortable, and letting me know what they are checking for). If I felt uneasy when the student was pressing a little too much on my ears with the otoscope, I can gently bring it up in feedback, and then the 4th year who watched from the control room or sat quietly in the office, can show them a better way to perform the ear exam. (Resting a hand on the patient’s shoulder helps steady the student).

There’s something deeply satisfying about helping a student on their path towards being a doctor. Being a standardized patient, my body can work at improving the care of future patients, and help show doctors-in-training the ropes. Which is ultimately what, I think, I find so deeply satisfying about the job, six months in. We standardized patients aren’t just actors. We’re educators. And in a roundabout way, I’m using my body to help other people save lives.

Chronic Illness Q&As

Are Doctors And Patients From Different Planets?

Sometimes it seems like doctors and patients speak two different languages. In her new book, Dr. Danielle Ofri aims to help bridge the language gap.

After more than two decades practicing medicine and chronicling the relationship between physicians and patients, Dr. Danielle Ofri has a unique understanding of the doctor-patient relationship. She’s written numerous books about the experience of practicing medicine, how physicians’ emotions impact their work, and about her own experience of transitioning from physician to patient. In addition to practicing medicine at the nation’s oldest public hospital, New York’s Bellevue Hospital, she is the co-founder and editor-in-chief of the Bellevue Literary Review and teaches medicine at New York University.

Danielle Ofri. Photo by Joon Park.

In her newest book, What Patients Say, What Doctors Hear, Dr. Ofri investigates the ways patients and physicians speak to and hear one another, and how this impacts physicians’ ability to perform medicine, as well as patients’ ability to receive and adhere to treatment plans.

Ofri spoke with Folks about her latest work, in which she explains why physicians can struggle to spend quality time with their patients, and how to improving the physician-patient relationship can lead to better treatment and medication adherence.

What was the impetus for writing this book?

This book began thanks to my last book, What Doctors Feel: How Emotions Affect the Practice of Medicine, after which I wanted to write about doctors and friendships. During my research, I found an interesting blog belonging to a doctor who wrote about befriending patients, including a patient who had been very difficult, and they had a lot of clashes in treatment.

I started reading all sorts of doctor blogs and looking at comments from patients when it really hit me. It was like they told two different stories! Both sides had their shortcomings and often admitted them, but they still saw things so differently. It was like doctors and patients were filming a scene in a movie with two different cameras, almost like making a completely different movie all together. That got cut from my last book—the story of how they see things very differently—and I wanted to pursue that fully.

It was like doctors and patients were filming a scene in a movie with two different cameras.

I know it’s a lot to sum up so briefly, but why do you think patients and physicians have such different experiences during an office visit?

For a patient, illness is the crisis of his life. For a doctor, it is one case on daily rounds. I might see 10 patients in a morning, so each patient is not the crisis of my life. The priority level is different, and the anxiety level is different in terms of where it ranks in my personal hierarchy. A patient may also want to tell the story of his whole life, whereas the doctor is focused on the useful aspects of the narrative in order to find a diagnosis and treatment.

I wouldn’t call them errors, but doctors do come at it with a different focus, so they can be perceived differently. For example, a doctor may say, “Here’s your treatment,” and a patient may hear “cure.” Those are two very different things.

How have you witnessed miscommunication between physicians and patients evolve over the course of practicing medicine?

One thing I’ve noticed in general, and over the course of my research for this book, is that a patient will say something like, “I have this pain over here,” and immediately, the doctor jumps in, asking when did it start. On average, we physicians interrupt within 10 seconds. We want to track down the problem quickly, but in the process, we may take a patient down particular avenue when patient has something important to add, such as, ‘This pain makes me afraid of a heart attack” or some family history we need to know.

I try to make other doctors aware of that, and I try to urge doctors to not say a thing, to totally shut up and put the computer down for one full minute. One minute is actually quite a bit of time when someone is looking at you and not typing. It’s very full listening. After the first minute, of course, a physician can ask, “Would you mind if I take notes?”

For a patient, illness is the crisis of his life. For a doctor, it is one case on daily rounds.

On the patient side, I like to have them think about the point of a visit. If you don’t have an approach, everything will be superficial. If you try and do many things, nothing will be in-depth. I suggest selecting one or two priorities to begin, and to think about telling your story, honing your narrative a bit.

That said, patients should always feel free to ask their doctor to repeat something, whether it’s a description of their treatment or simply part of the intake or exam. If the doctor still isn’t listening, it’s time to get a new doctor.

There’s an interesting chapter about patient non-compliance, and the statistics—that between 50-75 percent of patients may not adhere to recommended treatment plans—seemed surprisingly high. Why is that, and what can both parties do to meet halfway so that patients can be more fully invested in and empowered to control their own wellbeing?

Cover to What Patients Says, What Doctors Hear.

When it comes to medication adherence, if patients aren’t taking their meds, physicians may be well advised to normalize that taking medication is difficult. A patient may say, “It makes me nauseous,” and that is important for figuring out and addressing why there’s no adherence. Again, it goes back to listening, as well as asking the right questions.

Sometimes you have to ask a question in different ways or go off-script. “What’s the hardest thing about having diabetes?” is an important question, and a physician might learn a lot from the answer—and also get a different answer than one might get from asking a standard question. That question is probably not on a medical chart, though.

Another thing to consider is a patient’s background: where they live, what they do, are they a recent immigrant, are they homeless, are they caring for elderly parents, and so on. Asking these types of questions and understanding this personal information establishes a lot of respect. It demonstrates that the physician is interested and cares about them, even if there’s nothing a physician can do to help address any of these life circumstances. It is nevertheless a helpful method that pays off later in the relationship.

What’s the balance for physicians between labeling a patient (i.e. “difficult”) versus keeping track of symptoms, life circumstances, and effectively conveying that personal information to other physicians who may also work with that specific patient and need some frame of reference?

There are different kinds of labels to help keep track of patients and get the right referral. Sometimes it’s not that the person is a difficult patient; it’s that their circumstance is difficult, whether it’s something socioeconomic or medical, and that difference can impact how a patient needs to receive care.

If my patient’s issue is poverty, I can’t do much about that. So whatever problems a patient mentions, I record them all. I recognize I can’t solve them, but it’s worth acknowledging, especially how frustrating must it be to get the right medicine while also looking for job or being a single parent.

There have been studies on medication adherence, and how during an office visit, touching on non-medical issues improves adherence. It’s important for physicians to ask: how’s your work, how’s your family? Just by asking, you can immediately improve how someone will behave. It’s sort of the same principle as dealing with the cable company. If someone says, “I’m sorry you waited a long time; that must be frustrating,” your interaction changes.

It’s important for physicians to ask: how’s your work, how’s your family? Just by asking, you can immediately improve how someone will behave.

This type of understanding and communication lowers biological stress levels, and lowers anxiety and adrenaline. It helps the interaction, even if you can’t solve the underlying problem.

I have patient who struggles financially who has diabetes, and I know when her government assistance check comes, she buys better food. Her condition is better managed based on certain times of the month. I know this by now because we can talk about it. I can’t change her benefits, but I can recognize what my patient is doing well. I also can’t solve the problem of getting her a job, which would help her health, but by being sympathetic ear, that is helpful. We as physicians can’t solve all those problems, but we can help change the concept of what is helpful. Many of my patients get disrespected when they are asked about their life, and I believe the doctor’s office is where they can be treated really well.

How else has practicing medicine changed, in your experience, in recent years?

The practice environment has changed a lot, putting a lot of additional administrative pressure on doctors. It’s not that we don’t want to sit and talk. It’s mostly that we’re forced to do annoying tasks to close out electronic medical records (EMRs). The template can make certain fields mandatory—that you must check certain boxes—and physicians end up forced to do mindless work they could be spending with their patients.

The other day I had three new patients on the schedule, and because I wasn’t super busy, I could spend an hour with each one! I was grateful I could get to all of their issues, and it felt so gratifying because they benefited from the time I was able to spend with them. This is the medicine I wanted to do! We only have so many hours. But if I had an hour to talk with patients, I’d do great medicine.

Chronic Illness Q&As

Humanizing The White Coat

A Moth-style storytelling series for physicians aims to show that doctors are just as human as their patients.

The sleep-deprived doc who is green with envy of his operating room patients’ chance to rest while undergoing surgery.

The first year med student who is the child of refugees and struggled to treat veterans coping with the guilt of torturing captives—the very thing people in her family fled.

The idea behind The Nocturnists is deceptively simple: the notion that doctors are just as fragile, funny, and human as their patients.

Emily Silverman of the Nocturnists

Emily Silverman, a third-year resident at the University of California, San Francisco, launched the cathartic Moth-style storytelling series for physicians in January 2016. Since the initial 40-person event in someone’s living room, the event has grown to fill small theaters in San Francisco, drawing an audience of 250.

Silverman says that when patients meet physicians in a crisis or even during a checkup, it can be difficult to see the whole person behind the diagnostician. But the stories from past performances have been a wrenching look at how medical professionals deal with their work. Physicians and patients are all human beings, and the series is meant to provide community to medical professionals while also illuminating both sides of the doctor-patient relationship.

The next Nocturnists event will be a fundraiser for a local reproductive health non-profit, and in addition to high-priced tickets that will benefit the cause, a few seats will be available to the general public. Silverman says the best way to stay in the loop about events and tickets is to join The Nocturnists email list.

She spoke with Folks about telling the stories of medicine from the physician’s side, obtaining consent, and what she’s learned from fellow medical professionals in slightly different fields than her own.

What was your path to medicine?

It sounds cliché, but I was one of those 5-year-old kids running around the playground saying I wanted to be doctor. I don’t know where it came from because parents weren’t physicians. My dad didn’t finish college and ran a hardware store, and my mom was social worker. But I had a pediatrician I idolized, and I always wanted to understand the machine of the human body and how it works. My parents bought me books filled with colorful diagrams and pullout tabs to learn about organ systems, and I watched Ms. Frizzle on The Magic School Bus. I simply had to understand how my body works. Even today, when there are things I don’t really understand like the economy or the Internet, when I look at non-physicians, I think: how can you not know where your uterus is?

Even today, when there are things I don’t really understand like the economy or the Internet, when I look at non-physicians, I think: how can you not know where your uterus is?

I was drawn to science, but in parallel, I had this creative side—not so much social science but purely artistic, in that I loved drawing and ended up majoring in art history. In college, I flirted with not being a doctor and going into the art world. I always had these two parallel threads in my life and wanted to find ways to overlap them.

How was med school for you?

I’m passionate about science and have a lot of curiosity, so I got interested in the humanistic side of medicine and the importance of shepherding people through certain life experiences. Medical school reinforced that.

In med school, it was difficult to keep up with my creative side because I was studying all the time. I met a kindred spirit, Alessa, who also had a hidden artistic side and is extraordinarily funny. To keep our creative sides alive, we’d write scripts and make silly videos, and we always had a dream we’d write a film script about this stuff.

Physician burnout is being recognized more now, as are the skyrocketing rates of depression and suicide among physicians.

The intern year during my residency was very immersive, very intense, and a lot more difficult than I expected it to be. The sheer number of hours and the sleep deprivation and lack of time to process the experiences you’re having and the suffering that you’re witnessing—I actually think it’s really problematic. I dealt with emotional lag: like two weeks out of some intense experience, it would all come rushing back at an inopportune time. There’s not much time to talk with colleagues.

Physician burnout is being recognized more now, as are the skyrocketing rates of depression and suicide among physicians. Some programs set aside time to talk to colleagues, but that’s still not a cure-all for working 80 hours a week.

By the second and third year, the schedule opens up a little, and I was looking for a project to speak to the human side of medicine. There’s a lot happening in medicine right now on the scientific or business side, whether it’s in economics, digital health, genomics, or big data. That’s great, but I worry that stories of medicine are getting lost. I wanted to do something about that.

Backstage at the Nocturnists show. Photo: Jen Olenik

Where did the idea for a storytelling series come from? Do you solicit stories from fellow physicians?

I was at a live taping of The Moth in San Francisco, and I thought, “Oh, that’s what I’ll do.” It just felt right.

Going around SF, getting a sense of the cost to rent a space, it seemed daunting. I finally found a shared living space that has a parlor room that rents for something like $90 a night.

That first event was about 40 people. I had to twist some arms to get people to show up, and especially to share. It wasn’t extraordinarily difficult, but it wasn’t people emailing to volunteer back then. I sent targeted emails to people who I thought were talented and who would have a good narrative sense with some wisdom underneath.

The first event was very intuitive—there was no coaching—and people were very open to making themselves vulnerable. I lined up eight or nine residents but also faculty, and it was so helpful to have both, and it set a precedent for faculty to feel involved, and then we didn’t have a hierarchy where people didn’t want to participate in the same thing together.

We use stories all the time in medicine.

At first, my motivation was for therapeutic effect, telling stories in way very different from being in the hospital. We use stories all the time in medicine. A patient goes to the doctor and says, “I was fine, but then I was walking and I fell short of breath.” Patients bring that narrative to the doctor, who interprets it and strips away the inessential information so that the notes can become sterile and scientific, which is fine; Our job is about medicine and efficiency. It’s much more reductionist practice than expansionist practice. When we’re presenting a case on rounds, we retell patient story. We also tell stories and use metaphors with patients.

I was wondering about all of this, because now electronic medical records are templated, and they are very hard to read and it can be very hard to extract narrative from a digital record.

I thought, if we could get together and tell stories in a more expansive way in a theater with art all around as opposed to under the glare of the florescent lights of hospitals—and in normal clothes, not scrubs—and sit next to each other, shoulder to shoulder, and hear stories of our lives and jobs, that would be a good thing. That was the crude thought I had initially.

As our events grew, I received emails from physicians but also nurses, social workers, paramedics, and physical therapists across the Bay Area. I realized there is a hunger for a narrative in healthcare, for the chance to come together to digest and absorb experiences from the hospital and to foster inter-professional understanding. In an academic institution, the atmosphere often feels fragmented and impersonal, and I wanted to bring people together. After the 2016 election, I also felt stories are important for advocacy.

Are there any story topics that surprise you?

We had an event in March 2017 with a justice theme, and some of those stories surprised me. In October 2016, our theme was death and dying, and I feel like I know those types of beautiful and powerful stories. In my work, I see people suffer and die all the time.

At the justice-themed event, a clinical social worker told a story about a homeless woman who was his client and had a lot of psychiatric problems—someone is so vulnerable and so psychiatrically sick that she would have outbursts that made it difficult for her to go through life and get the things she needed. There was also this tenderness to their relationship—she referred to him once as her best friend—and when she could, she told him stories of how she helped others during the last major earthquake in San Francisco. Initially, he thought his job was to fix her, but getting to know her, he learned that his job is to make life easier for her, to make her more comfortable.

There was another story from a psychiatry resident, Jake, who was essentially taking care of a young, schizophrenic black man who wouldn’t take his medication because of the side effects, and he had delusions about the police wanting to throw him in jail because he’s black.

Jake talked about how difficult it was to talk to his client about this, given the real threat of police brutality and the Black Lives Matter movement. It was a complicated, nuanced story about being yet another white man trying to tell his black patient what’s good for him, and it brought to light the complexity of what we do that one can never do with data. Jake said after this experience, he will look for truth in delusion.

What do you envision for the future? How hard would it be to replicate in other cities?

I think a lot about whether to turn outward or to turn inward. By turning outward, I mean taking the show on the road to other cities, especially those potentially different from the Bay Area, or trying to get the stories on National Public Radio or a podcast. To turn inward and focus on my community, I ask myself: do I want to leverage this to make California or even San Francisco better?

I think I would like to try turning out first, especially as people from other cities and states are interested in collaborating.

Are there misconceptions about the series you find yourself explaining?

First, there’s a lot of fear around making yourself vulnerable as a physician. We’re treated like super-humans, from working long hours to the fact we’re expected to operate on minimal sleep. We’re essentially operating at extremes at all times: emotional, physical and physiological.

There’s a lot of fear around making yourself vulnerable as a physician…

The white coat causes a certain power dynamic, and there’s also this idea that the physicians should be neutral, that we shouldn’t insert ourselves into the narrative. I understand the argument, but overall, I believe it is beneficial to recognize physicians are human beings, just like patients. Sometimes physicians are patients; physicians get sick, too.

We talk a lot about humanizing the patient, but events like this have a role in humanizing physicians.

We also talk about confidentially, which is hugely important. There’s no universal moral code but in general, we say to obtain written permission if you’ll be sharing anything identifiable. Or, you change the details. For example, if the patient is wearing a backpack, now it’s a necklace. If he’s from Nicaragua, now he’s from Mexico.

You have to think: why am I telling this story? There should be a reason, and it should be your story, not someone else’s. I have to coach some people on that, that you have to put yourself in the story. I say things like, think about when you felt scared or vulnerable, or something that happened that changed your mind. Narrate your inner life. If you stick to that principle, it turns out pretty well.