oscopes, and x-rays, and prescriptions, but today's guest says stories are the key to healthcare, both our willingness to tell them and our caregiver's ability to listen and understand them.

He's Dr. Dean-David Schillinger this week on "Story in the Public Square."

(gentle music) (gentle music continues) Hello and welcome to "Story in the Public Square" where storytelling meets public affairs.

I'm Jim Ludes from the Pell Center at Salve Regina University.

- And I'm G. Wayne Miller, also with Salve's Pell Center.

- And our guest this week is Dr. Dean-David Schillinger, a primary care physician at San Francisco General Hospital, and the author of a new book, "Telltale Hearts: A public health doctor, his patients, and the power of story."

Dean, it's so great to be with you today.

- Thanks for having me.

- So the book is magnificent, and I hope a lot of people read it because I think that there's a lot to be taken from it.

But for the audience who hasn't read it yet, would you just give us a quick overview of the book itself?

- Yeah, the book is really about one of America's most important public hospitals.

And public hospitals are institutions that are quite unique in that they take care of the most marginalized populations in our country, the publicly insured the uninsured.

And it's the place where I like to say healthcare meets social reality.

And in that regard, it really tells the story of how illness happens in America.

I think we have the misconception that illness happens because of the poor choices we make as individuals, but I think what the book shows quite compellingly is that illness happens because of a series of exposures over the course of a life that are unhealthy and accumulate, whether that's secondhand smoke, or violence in the neighborhood, or food insecurity, or other kinds of health risks.

Poverty and the status of being a person of color in this country lead to to poor health.

And what I do in the book is describe how healthcare happens in a public hospital in different ways, the first way being when you don't elicit the patient's individual story.

And by that I mean not necessarily the medical details, but their social context that has led them to the hospital and what can go awry when you ignore their humanity.

And then the second part of the book, I really mature as a physician and understand that actually their social context, what's going on in their lives, their neighborhoods, their families really have a strong influence on their health and whether or not they're gonna recover.

And once you kind of discover the shared humanity that you have with the so-called other, because a lot of these folks look and speak differently than I do, you begin to become a much better physician, not only making more accurate diagnoses, but more accurate management plans.

And when you bring all of these stories together, the book tells the larger story of public health in America why we as a country are so sick relative to other nations in the world where investments in social infrastructure and social safety nets are much more robust than in our country where we spend ungodly amounts on healthcare.

In Europe, they spend significant amounts on social programs that keep people healthy.

And so my hope is that those who read the book will begin to feel more empathy for those of us who are less fortunate in America and begin to think about how we shape public policy so that not only the marginalized are more healthy, but those of us who are not in the top 1% can also lead healthier lives.

- That's a tremendous and important conversation.

We're gonna get to a lot of that in some greater detail.

One of the central themes in the book is something that you call humanistic medical care, incorporating patient narratives.

We were chatting about this a little bit before.

The first time a doctor asked me to tell my story, I was a little bit taken aback by it.

I didn't know what they meant.

When you meet a patient for the first time and you bring that sort of attention to their story to them, what kind of reactions do you get?

- Yeah, I mean, I would say 99 times out of 100, I am met with a very welcoming response.

Sometimes people feel like I'm being a little bit invasive if I ask a particular question.

For example, rates of interpersonal violence or domestic violence are very high in my clinic.

And if I ask a direct question like that, someone take offense.

But in general, when I ask people to tell me their story what brings them to my office or when I ask them more commonly details about their personal lives and their history, even their childhood experiences, people freely open up.

And I have sort of stacks of boxes of Kleenex in my office that we call it the Kleenex sign because you know that you've sort of hit the nail on the head when that thing is being reached into, and you've sort of hit gold because you've gotten to the core of the issue.

And you it's cliche to say that the physical and the emotional are connected, but it it really is true.

And anyone with an emotional problem is gonna have physical complaints, and anyone with physical complaints is gonna have emotional manifestations.

And in a public hospital, what you learn is that people's lives have been so complicated and so traumatic that ignoring that part of their history comes with great risk, both of misdiagnosis, mismanagement, and simply passing the patient along to the next doctor without accomplishing what you are meant to accomplish in your professional life.

So I think the beauty of working in a public hospital is, in part, the tremendous gratitude that I get to feel from my patients, many of whom I've cared for for over 30 years because I'm a primary care doctor at a public hospital.

And it really is...

It's a blessing to be able to kind of go on that journey with people over time and age with them and get our hip replacements at the same time and have, again, that shared humanity across what is often great social distance.

- So the subtitle of the book includes the phrase, "The power of story."

What is the power of story in healthcare?

You've, touched on it and gotten into it, but maybe we can hear a little bit more about the power of story and the importance of story.

- Yeah, I mean, I think, for me, fundamentally, what is most powerful about story, and there are many superpowers that story has, but the most fundamental power of story is it connects the clinician to the patient as a fellow human being, rather than as a doctor and a patient and only solely professional relationship.

It makes that professional relationship more personal, more intimate, and it increases the stakes for that relationship.

So that basically I begin to care much more deeply about that patient because they understand her story.

And in the first part of the book, I demonstrate the profound risks that transpire when you take care of patients without knowing their story, or by making assumptions that you know their story, or by not really knowing their name, but referring to them as, in one case, a shooter with a fever.

And that's an example of someone who is an injection drug user who presents to the hospital with a fever, a very common syndrome.

So you could call the patient a shooter with a fever, or you could call him Mr. Mark Anderson, a retired carpenter who got addicted after he had recurrent back pain after working for 30 years as a carpenter, and paying taxes, and doing all that, and suddenly becoming homeless.

Those are very different ways of characterizing a patient that will deeply influence how you care for that patient.

Is he a retired carpenter with back pain who had a tragedy in his life that then led to opiate addiction and a downward spiral, or is he a nameless, faceless shooter with a fever?

And the outcome In part one of that story is, essentially, his death because of a failure to elicit his story and then mistaken identity as a result.

So I think the story serves as a way to bridge social distance.

And I have a colleague who actually is a communication scientist like myself, and he's taken it to the next level.

He's been a patient.

He's had multiple heart attacks, and he's decided he's gonna ask the doctor, "Tell me what your story is."

So he basically develops the relationship with the doctor before the doctor has the discretion of developing the relationship with him.

And he's found a tremendous degree of openness on the part of clinicians who start telling them, "Well, I came from North Carolina.

My parents are immigrants from India," and telling them their struggles, and then a bond is created.

And that bond, what we call the therapeutic alliance, is more potent than any surgical knife.

- Dean, your account of the lessons that you learned as a young doctor is striking and, frankly, unflinching.

And I'm wondering, where does the integrity come from to be so open and transparent about mistakes you admit making, lessons you learned, and sometimes under great stress?

Where does the courage, the integrity come from to tell those stories in print?

- Guilt?

No, just kidding.

(all laughing) Part of it is a desire to pass on to the next generation the errors that we can make when we overlook the patient's story, and that is the common theme in terms of the errors that I've made.

The errors that I've made in my professional life have not been errors related to picking the wrong antibiotic or giving too short a course of some medication or the wrong radiation therapy.

They've been errors related to making assumptions about an individual or being ineffective in my persuasive abilities.

And some of the stories are quite facetious and compelling.

You may remember there was a story about an elderly man sort of had a Buddhist philosophy of health.

And he had severe diabetes and wasn't doing what I was asking him to do, the basics of diabetes care.

And we doctors are measured against quality metrics, and he was failing me in achieving these quality metrics.

Not getting his eye exams, not getting his foot exams.

His blood sugar was out of control.

And at some point, he totally flipped it on me, and he just stopped the interview.

This was after multiple visits of me essentially haranguing him.

And he got behind me and he started giving me a massage, and these massages went on for a number of visits.

And he slowly went from the 10-minute massage to the seven-minute massage to the... Titrated me down off the massage.

And by the end of these massage sessions, we began to understand each other that we had different ways of approaching what healing looks like.

And he began to...

I began to push less and he began to accept more.

And so that was a lesson I learned.

Yes, it was a mistake, the mistake being that I was using the western model of care to push my agenda, and he was pushing back harder and harder, and getting sicker as a result, and I needed to adapt to his worldview, and we needed to meet each other halfway.

So I think the main motivation is to convey the multiple ways that we can be effective clinicians, that there's not one cookie cutter way.

We have to be improvisational.

We have to be innovative.

And it all starts with getting to know the person who's across from you and understanding what makes them tick.

- So Dean, you experienced the power of a story in healthcare firsthand when you became very ill after a visit to the Caribbean.

Can you relate that story and what the eyeopening end to that story is when you finally saw a psychiatrist who I guess opened your eyes?

Give us that story, please.

- Sure.

Yeah.

And the story really is... the lesson of the story, I'll start with that, is that most illness, as I mentioned earlier, particularly for marginalized patients, but for all of us, is a function and a result of unhealthy exposures.

It wasn't that I fell off a windsurfer in the Caribbean and hit my head and because I was trying to go too fast.

It was that I had been in rural California about a year beforehand and had been working on clearing a fire road with my sons in the middle of winter, not knowing that nearly all of the wood that we were clearing was poison oak that had been growing for 20, 30 years.

So it was quite thick.

It didn't look like poison oak.

It didn't have leaves like poison oak.

The oils of the poison oak were just covering these branches.

And so I developed a very, very severe exposure to poison oak that led to a condition called erythroderma, which is red man syndrome, where every part of your body is just on fire.

Imagine an allergy that affects every part of your body.

And nothing was successfully treating that.

And so that was exposure one.

Exposure two was that the only treatment that they could give me was extremely high dose steroids, like chemotherapy level steroids to kind of cool off my immune system.

And those steroids are known to cause, in some people, psychiatric symptoms.

They usually happen quite soon after taking them.

But in my case, it happened about 18 months after.

I developed profound fatigue, inability to function, inability to enjoy life.

My work suffered.

My research suffered.

I was winded.

I couldn't exercise.

And it took quite a long time before I diagnosed myself with like, gee, this may just be depression.

I had all these blood tests for medical illnesses, parasitic diseases and all that.

And it really wasn't until I was able to speak to a psychiatrist and really give my hypothesis around what was going on with me that the right diagnosis and treatment were selected that enabled me to come out of what was a very major depressive episode.

I'd never had that before.

That was completely unlike me, I'm always like the person making plans, and let's do this, let's do that, let's go here, let's go there.

And I was just like in bed all day long.

And so, for me, someone who is a physician who has diagnostic skills and the ability to communicate and advocate for myself, even in that situation, it was difficult for me to get my story heard, and listened to, and acted on.

You can imagine what it must be like for someone who speaks Spanish, someone who has low levels of literacy, has public insurance, maybe has eight minutes for a visit, how important the elicitation of story will be for them.

And I tell I think a very compelling story about a woman who presented with breast pain to my clinic in whom nobody had elicited her story.

And so she had been passed on from one doctor to another for this breast pain.

And it wasn't until I just dug a little deeper, the antenna kinda start tingling a little bit.

Something's going on here.

I need to understand the story, and was able to provide a concrete example of how in my practice eliciting the story can be essential and lifesaving not just for me, but for my patients who are more marginalized.

- So speaking of story, you tell the story of one of your patients named Melanie, She's in much of the book, and the themes related to that are in much of the book as well.

So tell our audience who she was, and what her diagnosis was, and what happened.

- Yeah, Melanie is a very important part of this book.

She comprises the entire final section of the book.

And she's important because her story, her individual story is compelling and dramatic.

But then how her story lived on and lives on is an example of, the second example of the power of story, which is how individual stories can affect public policy when merged with science.

And this idea of the alchemy of science and story is something that I wanna stress, that we can't just live on story alone, and we can't just live on science alone.

We have to find a way to bring the two together if we're going to move forward as a society.

Melanie grew up in a low-income section of San Francisco, a formerly redlined neighborhood.

As you know, most cities in the United States had redlining that prevented black residents from getting loans in those areas because they were considered high risk, and also prevented them from getting loans in higher income neighborhoods because we didn't want black people living in those higher income neighborhoods.

So she was stuck in a very low income neighborhood, renting with her mother.

And like many young children at that time in the '70s, she was consuming just huge amounts of sugar-sweetened beverages, probably like you and I were as kids, but multiply that by 10 because the marketing towards African American children at that time, Hawaiian Punch, 7 Up, Kool-Aid, was just insane.

By the time she was a teenager, she had consumed probably a ton or two of liquid sugar, not unlike many of her friends.

And so by the time I had met her, she was 30 years old and she had already had advanced type two diabetes.

Now, type two diabetes is grandma's disease.

It's not the insulin-dependent diabetes that you think of when you think of a child.

This is a disease that has historically affected older people, but she had it at the age of 30, and she had already developed some vision problems.

She had developed some loss of sensation in her feet, which is one of the problems you get with diabetes.

And she had developed some depression, and she also was addicted to sugar-sweetened beverages.

She had three 7 Ups a day.

She couldn't quit them.

And she also was a smoker.

And really the story begins when I see her in clinic and I noticed that it's her 40th birthday.

'cause I looked at her hospital card.

And I'm like, "What are you, crazy, Melanie?

Why are you here?

It's your 40th birthday.

You should be out partying.

What are you doing in clinic?"

And she says, "Well, don't worry, tomorrow, my partner's gonna take me to celebrate.

We're gonna go to one of my favorite things, which is a water slide park in the East Bay where it's a lot hotter than in San Francisco.

And I haven't been at a water slide park for over 10 years.

It's my favorite thing to do, and we're just gonna spend the day doing the slides."

And I'm like, "Wow, that sounds great."

And she also told me that, as her birthday gift to me, she had quit smoking, which means she had basically added about 10, 15 years to her life by quitting smoking 'cause the diabetes and the smoking is a really bad combo.

So things were looking up for her.

And about three months later at her follow-up appointment, I entered the room and her partner was in the room, but Melanie was not in the room and her partner said, "I'm sorry, I didn't bring Melanie, is that okay?"

And I said, "Yeah."

And she said, "Well, I have to tell you what happened."

And what did end up happening was quite tragic.

So Melanie had a wonderful time on her birthday going up and down the slides and hooping and hollering, but was barefoot the whole time.

And I don't know if you have done the water slides, but the staircase on the water slides can get really hot.

I mean 130, 140 degrees.

And she had no sensation on her feet because of the diabetes.

And so she was unaware.

You and I will move our feet around and find a cool spot and just keep dancing on those steps.

She was not aware that she had been burning the soles of her feet.

And in short, she developed severe burns on her feet, ultimately leading to gangrene, which is infection of the feet.

And then was brought to the hospital in the East Bay, one amputation, a second amputation, and then the infection spread throughout her bloodstream.

And within 48 hours, she had died.

So this is a woman who died a completely preventable death on many levels, but in my mind, the most important proximal cause of death was the exposure she had had throughout her life to sugar-sweetened beverages.

And this story prompted a movement to prevent type two diabetes in young people of color on many levels.

At the municipal level, there was an art space program with young people.

There was legislation locally, taxation for sugar-sweetened beverages in the Bay Area.

And she's kind of been the poster child where.

When I'm in front of politicians and policymakers, I tell Melanie's story and I show statistics.

Before, when I was chief of the Diabetes Prevention Control Program for the state, I would just show the statistics and the politicians would look at them and shake their heads.

But when I tell Melanie's story, it really kind of, it's a gut punch in a different way.

- Well, it's all an incredible story, and the stories that you share... We're just about out of time here, Dean, but when you look back on the body of this work and the experience that you've had as a doctor, again, in about 30 seconds, is there a moment where you really crystallized the power of these stories to improve yourself as a physician but also to improve the care of your patients?

30 seconds.

- I would say there's not one moment.

I think there's a moment every day I'm in clinic when I make the decision to elicit the story.

Everybody has a story.

And once you hear that story, you get chills.

You begin to feel the common humanity and the person moves away from being the diabetic with hypertension, obesity, and rheumatoid arthritis to a fellow sufferer.

And that feeling perpetuates your desire to be a healer.

And so I wouldn't say there was an epiphany.

I would say it's been a recurrent, gradual feeling of gratification.

And we need more primary care doctors.

We need policy that allows primary care to thrive in this way so we can have longitudinal relationships.

But for now, I'm just doing the best I can to elicit the story every time, at least to some extent.

And sometimes if I have the luxury of taking care of patients for years, I can elicit the story over time.

- We're glad that you shared some of that with us today, Dr. Dean-David Schillinger.

The book is "Telltale Hearts."

Thank you for being with us.

That is all the time we have this week.

But if you wanna know more about "Story in the Public Square," you can find us on social media or visit pellcenter.org.

He's Wayne, I'm Jim, asking you to join us again next time for more "Story in the Public Square."

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