The Case for Crossing Boundaries
in medicine and in life

by Gaetan Sgro
Plenary address at the 2019 Society of General Internal Medicine Mid-Atlantic Meeting

November 15, 2019

A lot of people are probably expecting some poetry so let me get that out of the way. This is from “Two Countries” by Naomi Shihab Nye:

Skin had hope, that’s what skin does.
Heals over the scarred place, makes a road.
Love means you breathe in two countries.
And skin remembers--silk, spiny grass,
deep in the pocket that is skin’s secret own.
Even now, when skin is not alone,
it remembers being alone and thanks something larger
that there are travelers, that people go places
larger than themselves.

My wife and I were driving across Italy and took a detour in the legendary food city of Parma. You know how the air in Hershey is supposed to smell like chocolate? The air in Parma smells like sharp cheese and cured meats. I was driving a teeny rental right into the heart of this beautiful, ancient city—picture a college town in which the college dates to the 10th century—when all of a sudden the ride starts getting bumpy and our car is nearly swallowed in a sea of pedestrians. I must have missed a sign and crossed into a historic area where cars were forbidden. Britt wanted me to turn around but I kept driving. We ended up having an amazing lunch—aged Parmesan dipped in honey-thick balsamic—and we didn’t get in trouble for my little stunt. That is, until months later when I received a citation in the mail along with a hefty fine.

But here’s the thing: I’m Italian. The people that issued the ticket were Italian. Nobody really expected me to pay that thing, right?

So I’m a scofflaw but I’m not here to advocate for anarchy. Of course there are rules and boundaries worth respecting. Treat people the way you’d want to be treated. Don’t email angry. Don’t send a patient to a nursing home without a clear discharge summary.

But there are a lot of boundaries that feel arbitrary. Sometimes they’re the product of systems that have grown so large and complex that the rules stop making sense to the people on the front lines. Other boundaries are drawn in direct conflict with our values.

I often rely on a simple litmus test: does this really matter to my patient?

Did you ever notice that patients never thank you for meeting your quality metrics? Nobody’s daughter ever stops you in the lobby and gives you a hug for generating RVUs. No, real gratitude comes for the work we do out of bounds, off the clock. Work that’s never going to make it into any progress notes or performance evaluations. I’m talking about the extra time spent helping a student sort out his life. Sitting with a patient after hours—when you should have gone home—just to keep him company. Having the painful conversation that so many others avoided.

There’s a saying that the blessing lies beyond your comfort zone, and I think that’s right.

And then there are those who seem to love boundaries. These are people like Stanley Goldfarb who’s recent Op-Ed admonished doctors to “stay in our lanes.” The Stanley Goldfarbs of the world want us to believe that boundaries are good things; that they keep our lives safe and neat. According to Dr. Goldfarb, education and activism in pursuit of health equity are mere distractions from the real work of doctoring. I don’t just find this argument ridiculous. To me, it smacks of bad faith.

The truth is that boundaries are not benign. Boundaries have agendas. They exist to protect the controlling interests in a system or society. Interests that want to maintain the status quo, who are threatened by the possibility of progressive change. It’s not about gun control, health disparities, drug prices or the appalling waste in our winner take all healthcare system. It’s about the system itself and the tremendous financial interests that support it.

But relax. This is not a “throw the moneychangers out of the temple” talk. I’m doing that one up at the VA this afternoon.

I could tell you stories about revolutionaries, but you know them already. Instead, I want to talk about ordinary people who are approaching the work of service in extraordinary ways.

You’ve probably noticed that people who live lives of service have little regard for boundaries. Before the term “social justice warrior” became a pejorative—I’m talking back around 30 A. D. —the most influential social justice activist in human history was running around washing people’s feet. The visionary palliative care physician and author Dr. Rachel Remen based her practice on the Jewish teaching of Tikkun Olam. The idea that we are all born with a responsibility to heal the world. Not just the people in your neighborhood. Not just the ones who make it onto your clinic schedule. Not just your lane. The world. Heal the world.

My dad spent the bulk of his career working on behalf of the homeless in Philadelphia. My mom was a psych nurse. I went to medical school believing I was called to a life of service, but my little brother outdid me. My brother has always been an example of someone who truly lives his values. Jon has always walked the walk.

He went to college in Boston and very quickly detected a dissonance between his privileged life on campus and the suffering beyond its walls. As a sophomore, Jon moved off campus and took a job at a shelter in Cambridge where he worked nights doing intake and security. This was in the early days of harm reduction, and part of Jon’s job was to check drug paraphernalia at the door. Most nights, he had his 85 guests tucked in by midnight. He’d spend the hours between 12 and 4 doing laundry, making sure nobody stopped breathing, and shooting the breeze with the guys who couldn’t sleep. Not typical work for a 20 year-old.

Jon continued this work after college. He became an intensive case manager for formerly homeless people, coaching them through basic activities like grocery shopping and doctor’s appointments. I was in medical school at the time and we’d come home at the end of the day and debrief about our work on opposite ends of the struggle for a more a healthy society.

Eventually, Jon went to law school where he excelled, earning a spot on the law review. He went onto a prestigious federal clerkship and an even more selective Skadden Fellowship.

Jon charted a course that 9 times out of 10 leads directly to a white shoe law firm near Wall Street. But of course, Jon didn’t stay in that lane. Today, he works in an office in North Philadelphia representing clients who are battling institutional racism and endemic poverty. He and others at Community Legal Services work to stabilize neighborhoods, fight unlawful evictions, save homes from foreclosure, support vulnerable youth and help immigrants achieve stability.

For my brother, the rewards will never come in the form of wealth or prestige. When I asked him to identify a time when he felt most fulfilled, he didn’t mention a case he’d won or a legislative accomplishment his organization had achieved. He talked about earning the trust of his clients as he had on those late nights at the shelter in Boston.

Jon worked the door and invited people into the safety of his world, but the real blessing came when those same people let Jon into theirs.

My brother’s integrity, stubbornness and humility have always reminded me of my co-resident Dr. Jodie Bryk. People that know her mild manner might be surprised but I think Jodie is one of the most radical physicians I know. In residency, it was impossible to get Jodie to leave work on time, and it didn’t have anything to do with efficiency. Duty hours just had no meaning for Jodie. They represented someone else’s priorities. She was following her own compass.

According to Dr. Said Shanawani, medicine is as simple as this: “Find out what your patients need and make sure they get it.” That is Jodie’s compass.

Today, she runs a clinic for “high-need” patients; people who, if they turned up on our schedules, might send us running for the exits.

I asked Jodie where she draws strength for this work, and she told me about her aunt, a heart transplant coordinator, who would always be on the phone talking to patients after hours, helping them adjust their diuretics. Jodie’s aunt was the kind of person who didn’t wait for others to come up with solutions, she was the solution.

As you might expect, Jodie is a very creative problem solver. When one of her patients became depressed during a prolonged hospitalization, Jodie picked up her toddler from daycare and took her to visit the woman in the hospital— an act of kindness, of openheartedness that brought tears to her patient’s eyes.

Another patient, nearing the end of his life, kept stressing over the state of his property, concerned about burdening his family with the mess. One Saturday morning, Jodie surprised the man by showing up at his house with her husband and some staff members from the clinic. They rolled up their sleeves and got the place in shape.

We all write prescriptions. Jodie pays for meds and provides shoes for people who need them. She follows the example of her mentor, Thuy Bui, “If you see a problem that’s easy to fix, fix it.”

For Jodie, the work has nothing to do with chief complaints or with solving the medical problem of the day. It’s about "seeking the truth" behind why patients come in frequently. Sometimes it’s a missed diagnosis. Sometimes it’s about getting a sandwich in the ED. Sometimes, it’s loneliness. But no matter what it is, according to Jodie, if you really take the time to listen to a person’s story, the truth emerges.

We all think we’re good listeners, but how often do we really listen? I mean listen without our own agendas in mind?

Listening for the clues that are going to help me diagnose a patient’s abdominal pain serves a purpose— my purpose. In this scenario, much of what the patient shares will be discounted as noise.

But there’s a deeper kind of listening. Listening without agenda. Being willing to travel wherever the patient’s story leads.

And that’s really the final frontier. The most important boundary. The boundary between us and our patients. Leslie Jamison wrote about the nature of empathy:

[which] comes from the Greek empatheia – em (into) and pathos (feeling) – [as]…a kind of travel. It suggests you enter another person’s pain as you’d enter another country…

I’ve been doing a bit of travel recently through a program at the VA called My Life, My Story. It’s based on challenging the central dogma of the medical record, the idea that that the only information of value for patient care must have a corresponding ICD-10 code. My Life, My Story has nothing to do with meds or diagnoses. It has everything to do with the lives of our patients.

We spend an hour interviewing each veteran about their life story. Then, we write it down and with the veteran’s permission enter it into the medical record for all future providers to read.

The first story I recorded was of a man named Seth. Unlike the veterans I’d interviewed in training, who were older and mostly looking back over the course of long lives, Seth was younger than me and still looking ahead. Unfortunately, his outlook didn’t seem very realistic.

Seth’s story meandered from West Virginia to Khandahar, Korea to Langley. He had flown the Predator drone, witnessed killing first-hand, on a computer screen, and experienced the peculiar trauma of war fought through virtual reality. His marriage imploded and he sank into a cycle of addiction that landed him in the hospital with acute liver failure, his only hope pinned on the long shot of a transplant. On the day of the interview, his bilirubin was rising and his kidneys were failing. He was running out of time.

Still, he wasn’t looking back. He dreamed one day of escaping to the mountains, of settling down in a little cabin and starting a new chapter in his story.

It was an audacious dream and it was kept alive by an equally audacious decision by our transplant team to take a risk and grant Seth an expedited liver transplant.

I visited Seth in the SICU, where he thanked me for capturing his story. When I first approached him with the idea, he admitted, he wasn’t sure he had a story to tell. Now, he couldn’t believe how many people—doctors, nurses, therapists, his family—had been moved by it.

It’s amazing how stories resonate. They reach across boundaries and touch people in unexpected ways. It might be a very small way; one that makes a difference in a single life. Or it might be the beginning of something big. A call to action. A chorus of voices. A movement.

I think it’s time we doctors get moving. Time to reconsider the lanes and the highways and interstates that have grown up around us and decide if we want to keep driving these roads at all.

As soon as I read Stanley Goldfarb’s Op-Ed I wanted to argue against it. But the truth is, there’s no substance, nothing to push against.

The boundary he draws—between the work of healing individuals and healing a society—is at best a mirage, at worst, a smokescreen. It exists only in the minds of people in extreme privilege, the kind of privilege that insulates against the struggles their patients face.

There is no daylight between illness and injustice for a family facing foreclosure in North Philadelphia, or for the single mother whose only lifeline is Dr. Bryk’s clinic.

John Paul Lederach remarked that the pre-condition for social justice is social courage.

If we truly mean to serve our patients, we need to be willing to go wherever the work of service leads.

Find out what your patients need, and make sure they get it.

If there’s a problem that’s easy to fix, fix it.

If the road won’t take you where you need to go, pull over, get out of the car, and start walking.

Names and patient identifiers have been changed to protect their privacy.