How to Win the Doctor Lottery
Not every doctor-patient encounter is healing, and it can seem a game of chance. One patient explores what it takes to win.
Donna Jackson Nakazawa
When my son was five weeks old, he began to turn away from my breast even when hungry. He’d suck, then cry sharply, and twist away. I called the office of the pediatrician I’d chosen while pregnant, but she had no free appointments, so I saw another doctor in the practice instead. I’ll call him Dr. Jones. He examined my son, told me he had “gas pains,” and asked me, “Are you feeling anxious about being a good mom?”
The next day my son seemed better. Was I overly anxious, I asked myself? Then my son projectile vomited across the bedroom. I strapped him in his car seat and headed back to the doctor. Dr. Jones asked his nurse to take me aside for a “mom heart-to-heart.” Being a new mom is anxiety-inducing, the nurse said, adding, “What are you doing for you?” I burst into tears. They must have thought I was a postpartum hormonal time bomb.
The next morning when my son tried to breastfeed, he stopped and screamed in a way that resonated within my cells. That cell-shock sensation was something I’d felt only once before in my life.
Three decades earlier, at the age of 12, I’d stood at the side of my father’s hospital bed after he’d undergone a bowel resection, a “routine” gastrointestinal surgery. Every grown-up had told me that my dad would be fine despite postoperative complications. But as I looked into my father’s eyes that afternoon, I saw a depth of pain-laced love and the anticipation of loss reflected there. My earth tipped on its axis. I suddenly knew that despite what everyone was telling me, my father would not be fine.
That night, at the age of 42, my father died.
I arrived at the pediatrician’s office on the third morning of my son’s unexplained distress. As I began to explain why I was there, Dr. Jones interrupted me, gave me a handout on colic and a pat on the back, and ushered me out.
Just at that moment, my son’s original doctor—the one I’d joined the practice to see—stepped out of another room and saw me standing in the hallway.
“Haven’t I seen you here every day?” she asked. Her eyes were kind. I nodded, swallowing back tears.
“Let’s see your baby.” She extended her arms and laid my son on the exam table, gently palpating his abdomen. “Tell me about when you first felt something wasn’t right? What else have you been noticing?”
She took a bottle of breast milk from my hands and offered it to my son. He sucked, turned beet red, and twisted away with a sob. “Does he do this on the breast, too?”
I nodded.
Then she uttered the words that would save my son’s life. “I listen to my moms,” she said. “Given what I’m observing, I’d like to get an abdominal sonogram.”
“But they told me it’s colic.” I suddenly hoped Dr. Jones had been right.
“His abdomen seems distended and hard,” she said. “It’s a subtle finding, but it’s there.”
A few hours later, after the sonogram, the pediatrician held the hospital’s report. It suggested pyloric stenosis, a condition caused by a tight muscle that prevents food from exiting the stomach and entering the intestines. When that muscle becomes rigid, it resembles an olive.
“I don’t find this definitive,” she continued. “I’ve called a pediatric surgeon at Hopkins. He’ll meet you at the ER. Pack what you’ll need for the next week.”
I held my son, his tired exhales warm and moist against my neck. “Johns Hopkins?” I asked. That was where my father had died.
She put her hand on my arm. “I know this is difficult. But I promise you, we will help your baby. We will get through this.”
She handed me a slip of paper. “Here’s my cell. Call when you’ve arrived.”
I held the paper like a talisman.
Later that afternoon, the Hopkins surgeon examined my son, rubbing his thumb over his belly, looking for the swollen muscle the local hospital said they’d seen. “Pyloric stenosis my eye!” he nearly roared. “There’s no olive here!”
The new tests he wanted to run seemed invasive, and our pediatrician called to reassure my husband and me. “Please, trust us with your baby,” she said. “This is a cautious, but necessary, path.”
That evening, we stood outside of a glass-walled room while our son underwent a barium drop X-ray of his gastrointestinal tract. Suddenly, the radiologist screamed. She picked up the phone and called the surgeon. “You have to see this! His intestines are wrapped north of his stomach! They’re about to twist off!” The surgeon arrived and operated on our son, unfurling his intestines, removing 21 adhesions, and carefully placing his bowels back in.
Weeks later, after we brought our son home, his recovery was tenuous. Some days, we ended up back at the hospital. Our surgeon called for nightly reports on bowel sounds. Once, we met our pediatrician at her office at eleven o’clock at night; another time, she examined our son’s abdomen on a bench at her son’s athletic game to ensure that his postoperative discomfort was nonsurgical. Each time we saw each other during that year—and often in the two decades since—we hugged, blinking back tears. As my son began to live a normal boy’s life, we sighed relief. He was, we agreed, “the one who almost got away.”
Today, my son is six foot two and a senior in college. When he was a newborn, his three-inch scar extended across his belly. Today that scar appears deceivingly small. In the decades since, his case has been taught in medical schools and used in lawsuits by parents whose pediatricians hadn’t listened and whose children had needlessly died.
Why were we so fortunate? I didn’t know it two decades ago, but despite the terror of those weeks in which we almost lost our child, something good, and rare, had happened. We had won what I’ve since come to call the “Doctor Lottery.”
When you win the Doctor Lottery, there is no cash prize but a far greater payoff: the possibility of extraordinary healing, even a miracle. Our son survived because our physician took the time to listen, show compassion, earn trust, partner with us, advocate, and provide just the right amount of care to save a life. She fostered a safe and healing patient-doctor relationship while navigating us through a sea of uncertainty.
My family and I haven’t always won the Doctor Lottery. My father’s surgeon, for instance, had pushed him to have the bowel resection to “cure” him of diverticulitis, a disease in which the colon’s lining becomes inflamed. He stitched up my father’s intestines with a suture known to dissolve in patients who’ve been on steroids and hadn’t read my father’s chart to see that his internist had recently had him on cortisone. Nor did he look at the list of medications my father had carefully written down on his patient intake forms. When the sutures dissolved, my father, who had a bleeding disorder, went into shock. His abdomen was distended and hard.
My mother asked the nurse to page the surgeon. “My husband is in so much pain!” she said. The surgeon, who was playing golf, told the nurse to tell my mother, “Pain after surgery is normal.” By the time my father developed a fever, and peritonitis, it was too late. He died of a heart attack. “Normal courses of antibiotics proved unsuccessful,” my father’s death report reads.
Not only did we not win the Doctor Lottery that day, but my brothers and I lost our childhood. When my father passed away, the world as we knew it ended, as if someone had erased all the color from the horizon.
These experiences informed my own health journey when, in 2001, I became a revolving-door hospital patient facing two long periods of paralysis from Guillain-Barré syndrome, a neurological autoimmune disease similar to multiple sclerosis. The day my Hopkins neurologist delivered the diagnosis, I passed through a portal into a terrifying and unknown universe.
As my husband filled out admission papers, my neurologist sat beside my wheelchair, quietly explaining the treatment I would undergo. He would start infusions of other people’s healthy immune cells to try to reverse my paralysis. After he finished talking, we sat together in silence. Nurses rapped at the door. His patient waiting room filled. But he never left my side. I asked him why he stayed with me when he had so much to do—he was, after all, the head of a major department. He told me, his eyes looking into mine, “I will not leave you sitting here alone, not with the news I’ve just given you.”
Over the next few months, I slowly learned to walk again. But, although Guillain-Barré syndrome rarely strikes the same patient twice, four years later I developed it again. This time, I fell into a state of paralysis faster, and the damage to my nerves was more extensive. During my hospitalization, several of my doctor’s fellow neurologists warned me to “hope for the best but prepare for the worst.” They said that I might never get out of a wheelchair. But my neurologist shook his head and reassured me that some people did recover. He thought I could, too. “Don’t listen to them,” he told me. “I’m your doctor, I know you.”
His words stayed with me during that hot slog of summer into fall, as I sweated in rehab, then through grueling physical therapy at home that left me shuddering and depleted.
Eventually, six months later, I was able to navigate steps with a cane and then walk out my front door and down the driveway.
Some months later, however, like many Guillain-Barré syndrome patients, I still navigated through a flu-like fatigue. I’d also developed symptoms of gastroparesis, a condition in which the stomach can’t empty itself normally. A new, local doctor I saw seemed to think me a hysteric and handed me Prilosec. I will never forget the look of disdain on his face the second time I saw him, and he said, “A few days ago you came in saying you were nauseated, and today you say you have diarrhea! Make up your mind!”
I sought out a number of physicians, seeking answers, until in 2011 I met a new internist, Anastasia Rowland-Seymour, at Johns Hopkins, who changed my life by partnering with me to create a new health story.
Dr. Rowland-Seymour asked me gently about my history, never looking at her computer. I told her that I knew I was lucky to be doing so well, walking, driving. I told her of my bone-deep fatigue, numbness, headaches, and that I often found myself so tired I had to lie down on the floor after climbing the stairs. “That’s my normal,” I said with a shrug. I figured our time was up, but she wanted to have a deeper conversation about my well-being.
“You’ve been through a great deal in a relatively short period of time.” She looked as if she didn’t quite buy my breezy rendition. “That has to have taken quite a toll on you.”
She wondered if I thought that the decades of stress I’d endured might have played a role in the immune dysfunction I now faced. She asked me if my childhood, in particular, had been stressful.
I was astonished.
“I’ve never thought about it that way,” I said, telling her, in briefest terms, about my father’s sudden death.
That day, I found a partner on my path to healing, one who helped me incrementally incorporate mind-body approaches to well-being with conventional medical care. Over the next year, my health dramatically improved.
After having seen the best and worst of medicine over three generations, I’ve learned that people suffer needlessly, or pursue new possibilities of healing, based largely on whether they have a healing doctor-patient partnership.
I’ve seen this pattern in my work as a science journalist, too. I’ve heard from thousands of patients about relationships with doctors that helped—or hindered—their health and recovery. It’s clear that the tenor and quality of the patient-doctor relationship play a telling role.
Every patient wants and deserves to win the Doctor Lottery; it shouldn’t be simply a matter of chance. The good news is that I believe we can get there, in three key ways.
In my healing encounters with physicians, I felt that I was being heard, understood, and respected. My internist, Dr. Rowland-Seymour, now at the Case Western Reserve School of Medicine, trains medical students in gaining skills to create a sense of safety and partnership with their patients. Through simulated role-playing exercises, she shows students how to create trust from the moment they meet a patient, such as by letting the patient walk in the room and sit down first and asking open-ended questions such as, “What else is coming up for you?”
A 2015 study in Narrative Inquiry in Bioethics found that patients overwhelmingly felt that what mattered most was having a physician who listened, acknowledged their condition, was honest, and treated them as an equal. A 2006 study in the Journal of General Internal Medicine found that the single greatest predictor of whether patients with HIV adhered to treatment was whether they felt “known as a person” by their physician.
The first time I met Dr. Rowland-Seymour, I entered the exam room ready to focus on managing symptoms. I was surprised to discover that past trauma might also need to be addressed if I hoped to improve.
When physicians don’t take the time to listen and be present, their patients are less likely to trust their decisions. In a 2015 study in JAMA Oncology, patients with poor relationships with their physicians were more likely to demand added tests and procedures.
“We know that when people feel they have been fully heard and seen in a relationship, they are more likely to heal,” says Bob Whitaker, a professor of public health and pediatrics at Temple University. That’s helpful to a patient even before doctors intervene with traditional medicine, he adds.
When I think of the extraordinary doctors in my family’s healing stories, they shared something in common. They were deeply present during our encounters, as if they were there to stand shoulder to shoulder with us—rather than simply to give directives. Because they established that rapport, they helped us navigate uncertainty in the face of terror while still championing real hope for recovery.
This doesn’t mean offering a patient false hope, Dr. Rowland-Seymour underscores, but rather “a sense that we are going to figure out how to manage this, and get you better, and we are going to do it as a team.”
Most physicians are trained to “walk around trauma as the elephant in the room,” Dr. Rowland-Seymour says. If they don’t see a direct correlation between how trauma has affected a patient’s well-being and long-term health, they sidestep it. But you can’t achieve true healing with that elephant in the room.
Jeffrey Brenner, a 2013 MacArthur “Genius” Fellow and senior vice president of integrated health and human services at UnitedHealthcare, where he leads myConnections, a program to pilot new models of health care, is an advocate for training medical students to screen patients for trauma. He has found in his own clinic that knowing about patients’ early-life trauma “is as important as knowing their vital signs.”
When physicians grasp that past trauma can affect current physical health, they can also better understand why poor health habits might be coping mechanisms for past wounds, and why it is especially difficult for some patients to engage in the kind of self-care that’s critical to healing.
Trauma awareness also helps physicians recognize their own past trauma and stress. According to Henry Weil of the Columbia University College of Physicians and Surgeons, the physician who has developed self-awareness of his or her own suffering, and the effect that trauma has had on his or her life, is often best able to view patient suffering “with an open heart.”
Even when new doctors are trained to foster a strong patient-doctor relationship and recognize trauma, the system all too often pushes them in the opposite direction. After medical school, physicians quickly learn that they’re better rewarded for moving fast than for taking a thorough patient history. In a hospital clinic setting, internists have 15 minutes to see each patient, which might be fine if the patient has a sore throat, but in large teaching hospitals, most patients are struggling with multiple, complex chronic conditions.
The physicians with whom I’ve spoken agree that doctors who put in the extra time to create relationships with patients do it because they feel it is the right thing to do, despite the fact that the system doesn’t reward their efforts. But a system that relies on physician good-heartedness alone is hardly sustainable, especially given that half of physicians already report professional burnout.
The good news is that a quiet revolution is now afoot in medicine. Many doctors, just like their patients, long to have more healing encounters and foster strong patient-doctor relationships. To achieve that, we will have to rethink how we deliver medicine.
Ensuring that more doctors know how to foster a healing relationship means that medical schools will need to reenvision how they select the right students and deepen their training. This goes beyond teaching students and interns to maintain eye contact or use open-ended inquiry. It will require teaching mindful, empathic listening and rewarding doctors-in-training for developing strong patient-doctor communication skills and relationships. Compassion and empathy training—tailored to the physician experience—are particularly important during the grueling years of medical training, but all doctors should revisit these skills as part of continued medical education.
We also need to revisit how time during the face-to-face patient encounter is being used.
“Good things have come from technology, but technology can’t do everything we thought it could,” Dr. Whitaker, of Temple University, says. “If a physician has their back to the patient, and is looking at the computer while taking a patient history, that’s not a healing encounter.”
As Dr. Rowland-Seymour pointed out to me, dentists often have a scribe taking notes while they do a dental exam, but internists don’t. Trying to connect with patients while staring at a computer screen just doesn’t make sense. Vikas Saini, president of the Lown Institute, suggests incentivizing the development of systems that use voice recognition software and artificial intelligence to extract relevant patient data from voice or video recordings, thus freeing the physician to be more present with patients.
Primary care physicians and other providers are already helping drive the types of changes that make it more likely patients will win the Doctor Lottery. For one, they are moving toward value-based care delivery and payment models, which reward meeting quality-of-care targets as opposed to simply paying for the quantity of care. Team-based care, in which a doctor works as a member of a larger team (including, for instance, a medical assistant, social worker, and behavioral health expert), also can create a more healing environment and ensure that all of a patient’s needs are addressed. Lastly, greater attention is being paid to transitions in care, to ensure that care runs smoothly across various settings, especially when multiple providers are involved, so that life-saving information is never lost in translation. All of these strategies rely upon doctors listening to, seeing, and respecting their patients—and on measuring care not only by their actions but by their presence.
But real change won’t happen unless physicians place value on these qualities within themselves and within the profession.
I only wish it weren’t too late for my father to have won the Doctor Lottery. His unnecessary death inspired me to insist on having doctors who listened and treated me with respect. It is bittersweet that my dad’s unintentional legacy was the very gift that would help me reclaim my health and save the life of the grandson who, sadly, he never got to meet.
Volume 36, Number 4. April 2017.
At the VA, Healing the Doctor-Patient Relationship
In opening a dialogue with a veteran, a Syrian American physician is able to overcome prejudices and create a path toward healing.
Raya Elfadel Kheirbek
The man’s voice over the phone was angry: “The VA provides terrible care!” I had promised the Veterans Affairs (VA) Medical Center’s Patient Advocate Office that I would connect with the man, Mr. Davis, who had called three times before to complain about his care. I was warned beforehand that he was displeased, to say the least.
With him on the line, I took a deep breath and began to look up his records. “I am sorry to hear this, Mr. Davis,” I said. “Would you please tell me specifically what is bothering you? I am covering for your doctor and will do my best to help.”
Mr. Davis needed to have an MRI for his right shoulder, as was recommended by his military doctor before he separated from the service. He also was having back pain and wasn’t exercising enough. He had gained 20 pounds in six months and asked if we offered liposuction.
He had met his primary care clinician, Dr. Kumar, for the first time a couple of weeks earlier and was very uncomfortable when he saw her. To him, there was great insensitivity in the VA’s decision to assign him a doctor who he believed was originally from the Middle East.
“Those people wanted to kill me,” he remarked to me on the phone, “and I do not appreciate having a doctor who is one of them.”
“If you had a woman who was subjected to repeated rape, would you let her be examined by a male doctor?” he continued.
I knew that our policy would allow him to switch doctors, but I had no idea what to say. I had been practicing medicine for a couple of decades and naturally had encountered many types of unusual behavior. Yet I had never heard this type of comment from a patient. I composed myself and quietly explained to Mr. Davis that Dr. Kumar’s family came from India. Dr. Kumar herself was born and raised in Pennsylvania and had no connection to the Middle East whatsoever.
But Mr. Davis was insistent on having a doctor who looked like him.
And he was angry.
“I am not your typical patient,” he fired back. “I am smart, educated, and highly trained. I do not need your opinion. I have lived in my body for three decades. I know what I want, and your job is to deliver.”
He thought the VA worked from nine to five only and found this distressing. When I offered him the possibility of a Saturday appointment, he didn’t want it. I offered him early morning appointments, but he said his wife worked as well, and someone needed to walk their dog. He refused to call and make an appointment for the MRI, explaining that he had called a couple of times in the past, and no one had picked up the phone.
I told him that I wanted to meet with him to help resolve these issues and blocked off an hour the following week to meet during my administrative time. He was excited that I would be able to see him quickly, given what he referred to as the long wait time to get an appointment in the VA. He added that, based on our conversation, I seemed to be a good doctor. I gave him my contact information and told him to call if he needed to make any changes before our appointment.
While I was determined to meet and help Mr. Davis, a potential challenge loomed. I am of Middle Eastern origin. I wondered if I should reveal this information after coordinating his care and give him another opportunity to seek a different clinician. My colleagues advised me to stand tall and not give him that choice. To them, his views represented bigotry.
Yet Mr. Davis was not the only one struggling with the past. For me, encountering Mr. Davis brought back painful memories and forced me to stop and reflect on my years of service in the VA, my belief system, and my biases. I wondered if his “bigotry” was really so alien to the human nature in us all.
As a primary care physician working in the VA, I have heard countless stories from soldiers reliving their experiences in war zones. As an Arab American immigrant, I had followed the Iraq War and—later—the promising start of the Arab Spring and then watched them both spiral into the chaos of death and destruction, including a civil war in my native country, Syria. I felt privileged to be a physician and an American, especially as violence took hold overseas. I could have been back home along with everyone I worried about. I could be dead. Feeling powerless, I forced myself to watch and listen to the news. The least I could do was to be aware.
On a July morning in 2006, some time before war would break out in my home country, I was driving to work and listening to NPR’s Morning Edition. The station featured a story about a 14-year-old girl named Abeer, who had lived with her family near a checkpoint in al-Mahmudiyah, Iraq, an area that was then known as the triangle of death. Four armed young American soldiers had stormed into Abeer’s house and shot her mother, father, and five-year-old sister. Abeer was taken to an adjacent room in the house where she was gang-raped and murdered, and her body was set on fire. Hearing about this crime sent chills down my spine. I parked my car on the side of the road, cried, and whispered a prayer for this family and for peace.
Later that day I found myself searching for Abeer’s story on the internet during my lunch break. The four American soldiers had been arrested. As I read, I caught sight of Abeer’s citizenship identification card issued by the Iraqi government, which had an eerie familiarity. My eyes welled up, and I kept clearing my throat as if I was choking on my own guts.
When I got home later that day, I rushed to the basement and searched in a box containing childhood documents I had brought with me when I immigrated to the United States 25 years before. I found my own citizenship identification card, issued by the Syrian government. The little girl in the photo looked exactly like Abeer. I put the photos next to each other and stared in disbelief. That night, I did not sleep. I followed her story closely, and for several months Abeer’s horrible fate clouded my mind every time I met a young soldier who had been on active military duty in Iraq.
When I spoke with them during visits, many of the returning soldiers recounted sad and violent scenes from what they called a never-ending war. Many were torn between being with their comrades and being with their families. The majority had symptoms of post-traumatic stress disorder (PTSD) after experiencing continuous fear for their lives, participating in killings, and watching others be killed. None of the patients I treated wanted to be called a hero. None spoke of the supposed triumph or grandeur of war. Many did not even care who won; they just needed and wanted the war to end. My patients talked about fighting an elusive enemy that led them to proclaim an open war on all Iraqis.
It was very difficult for me to listen to their stories. I found myself asking questions about their deployments and what specifically they had done. While I felt a deep appreciation for patients who opened up and talked, I questioned my motive in asking all these questions. To this day, I do not know if my questions came out of a simple curiosity, the desire to provide thorough medical care, or condemnation.
In a staff meeting, I asked my primary care colleagues how they approached the narratives of their patients. Many confided that, given all of the mandated medical screens we had to perform and other time constraints, they could not afford to listen, even if they wanted to.
“It is best to think of their PTSD as an occupational hazard, check the suicide screen, and link the patient with mental health [care],” one colleague said. “They can deal with all that stuff.”
In the VA system, after all, we are privileged to have mental health services integrated with primary care, so that a psychologist and a psychiatrist are physically located within the primary care service area and can see patients the same day if needed. My primary care colleagues who did ask questions about their patients’ military service histories and made time to listen often found their workweek significantly extended. Many worked long hours on weekends just to keep up.
Listening to my patients’ stories took a toll on me. I was afraid to admit or share my feelings with my boss, mentors, or even my family. I did not want anyone to throw doubts on my capability as a physician to treat all people equally. I started searching the medical literature for information on doctors’ biases in the aftermath of war and found only one article, in the British Medical Journal. It centered on a Jewish surgeon at a German hospital who walked out of the operating room and refused to operate on a patient after spotting a tattoo on his arm of an imperial eagle perched on a swastika. The 46-year-old surgeon, who worked at a hospital in the city of Paderborn, explained later that his conscience prevented him from treating people he suspected of having neo-Nazi sympathies.
There was another reason why I didn’t open up about my feelings: I was mortified at the thought that I could be viewed as less than American. I recalled my interview at the US embassy in Damascus early one August afternoon in 1991, after I had applied for a student visa. My friends told me never to say that I would stay in America, as my chances of getting a visa would be better if I said my goal was to train to become a skilled physician so I could come back and serve my fellow Syrian citizens. After several hours of waiting outside the embassy doors on a hot summer day, I had my interview. Through a small window, an embassy employee spoke to me in broken Arabic: “You are a beautiful young woman. How do we know you would not travel to America, fall in love, and stay there?”
I was nervous, spoke little English, and forgot all I was told.
“I sure hope I do,” I quickly responded.
He smiled, asked me to wait for a few minutes, and came back. My passport had been stamped with an approved visa. That day and in the days since, I learned that America stood not only for freedom, but also for unconditional love and the freedom to defend that love.
Despite the difficult stories of war I often hear at the VA, my love for this country and commitment to my work never faltered. Years after I had heard Abeer’s story, the acuteness of my feelings diminished.
I decided to take up running. Eventually, I was running 10 miles twice a week. I kept pushing myself, dedicating every run to a cause I believed in. I stopped working on weekends and spent more time with my husband—I did fall in love and made a home here, after all—and our children. I began to feel connected to a normal life outside of a war zone, and I reinforced this connection by avoiding the news after work.
I introduced myself to Mr. Davis on a Tuesday in March 2017, less than a week after our initial phone conversation. A white man in his early 30s, he was tall and well built, with a rectangular face; a defined, slightly pointed chin; and a sturdy jawline. He had light brown hair, small blue eyes, and a straight nose. The jacket he wore over his broad shoulders had neatly polished buttons and was slightly frayed in places. Part of his right hand was missing. He glanced at me with a smile. I am a white woman with green eyes and brown hair.
“I am very happy you were able to make it to this meeting,” I said with a big smile.
He nodded in silence and avoided making eye contact.
“I had a chance to review your chart. I think I can help with your physical needs,” I added. “But I am also suspecting there are mental health issues that might need to be addressed.”
Given his sentiments about Middle Eastern doctors, I thought he had a plausible PTSD diagnosis. When I began to suggest as much, he cut me off.
“This is all stereotyping,” he asserted. “I did what I was supposed to do. I will heal through going back to work and being productive.”
I caught him looking at my name badge.
“I understand,” I said. “Thank you for clarifying.”
I asked how he had ended up in the military. He said he’d signed up simply because college was “so damn expensive.” He was not a “military brat” and didn’t enlist out of a sense of obligation. He was not angry or in need of some form of revenge. It’s not that he felt enlisting was brave or important.
“I just needed help with college money,” he said. “In retrospect, I could have done something that did not risk being shot at every day.”
He broke into a sorrowful smile.
I told him I wanted to be able to help him and needed to know more. I asked about how he’d ended up with his shoulder injury.
Mr. Davis had been in three combat deployments—Iraq in 2010 and Afghanistan in 2011 and 2013—as a member of the US Army Special Forces. He’d been involved in multiple close-range blasts, traumatic jumps, and firefights. Many of the people he had served with had been killed. Since his return to the United States, he had been having constant pain in his right shoulder. He had nightmares one or two times a week, and recently they’d become more frequent. There was one nightmare in particular in which he saw himself collecting the body parts of his dead friends and putting the pieces in a body bag. They had no faces, but somehow he knew they were his friends. He avoided thinking about what had happened over there and avoided talking about it with his friends.
“Few Americans have served,” he explained, looking out the window. “I was afraid that I would be judged as a monster or celebrated as a hero.”
Nowadays, he said, he attempted to fill his time by working on his master’s degree in economics and with other distractions. His wife had told him that he was distant, but he said, she respected his isolation and assumed he needed time to himself.
“What kept you going during all the deployments?” I asked.
“I closed my eyes while hiding from fire and remembered family trips skiing with my little sister and laughing on the slopes of Jackson Hole.” He looked up and smiled. I saw a glimpse of the little boy in his face and knew he was in pain. I wanted to reach out and touch his hand, but I was afraid he would not welcome my gesture.
“Have you had thoughts of hurting yourself or others?” I asked.
“No. My friend did.” He paused for a moment. “He was long dead before he pulled the trigger. I myself sleep with my gun at my side but [have] never used it.”
I asked if he’d had any good experiences in Iraq.
Yes, he said. It touched him to see families with young children walking for many miles to collect American parachutes to help build houses. The local people found something useful to do with even the trash that Americans had left. All his memories, however, were haunted by the killings he had witnessed and the poverty of the places he had been.
Mr. Davis had seen mental health providers during his active service, but he did not feel like elaborating on that for me. We discussed his back and shoulder pain. While examining him, I noticed a tattoo on his left arm: the word kafer (meaning infidel) written in Arabic. For a split second, I considered telling him that I could read this, but I held my tongue. I’ll admit in retrospect that I was a bit scared of him.
We scheduled an MRI appointment, and then Mr. Davis told me about some numbness in his injured hand. An improvised explosive device had detonated in his hand while he was clearing an insurgent field in Fallujah, he explained. I referred him to a hand surgeon. We decided to draw labs and reevaluate his condition in a week.
I felt it was then time to address his comments about Dr. Kumar. I said: “You know, Mr. Davis, you are a man of tremendous courage. It is not easy to share your experiences with someone else, especially experiences of this nature.”
He looked out the window.
“You mentioned to me in our phone conversation last week that you were uncomfortable with a doctor from the Middle East.”
I paused, and then continued. “I want you to be comfortable, and I am very happy we met today. I want to thank you for allowing me into your life and for the opportunity to help. I owe to you the knowledge that I was born and raised in Syria.”
The few seconds of silence that ensued felt like an eternity.
Then Mr. Davis abruptly got to his feet and raised his severed hand. “I am so sorry I was being a jerk. I would really like you to be my physician—unless you do not feel comfortable caring for me, based on my earlier comments.”
I stood up and extended my hand to him. “It was important for us to talk. Please keep doing so, as it’s the only way for us to deal with such emotions.”
His face broke out into a wide smile. He was absolutely thrilled at the prospect of us working together. I was too.
Though I have served in the VA for many years and in different roles, my focus has always been on patients. The sacred time spent with patients in an exam room is the only lasting truth in medicine. In this large bureaucratic system, all else can wait. Yet many priorities compete for our attention during a single visit. It might not be possible to spend the needed time on each important issue. While a slew of mandatory screenings for diseases has improved our medical care, it is equally crucial to take the time to develop a relationship with the patient, exploring his or her service history and the lived experiences that may come with that. It is not always easy. In my work, I know what it is like to be discriminated against, and what it is like to have stereotypes of my own. Yet an admission of our own vulnerability and opening the door to a conversation about self-care, compassion, understanding, and human connection is how we attend to all aspects of our patients’ suffering—and perhaps some of our own.
With the implementation of the Veterans Access, Choice, and Accountability Act of 2014, our VA patients now have the option to seek medical care in the private sector as well as through the VA, so it becomes even more important than ever to ensure the existence of a broad system of caring that addresses their complex physical and psychological needs. It is only then that true healing can begin.
Volume 36, Number 10. October 2017.
Editor’s Note: Patient and clinician names in this essay have been changed.
When Patients Mentor Doctors
The Story of One Vital Bond
A physician reconnects with the patient who mentored her as a medical student and helps him make a final care decision.
Aroonsiri Sangarlangkarn
It was a cold December morning in 2015, and Roger was slowly dying. With end-stage chronic obstructive pulmonary disease (COPD), Roger had been in and out of the hospital for months, each episode worse than the last. Once a functional New Yorker who walked to his favorite corner store with an oxygen tank, Roger had morphed into a gaunt skeleton, tethered to his bed by entangling tubes and masks. Time was precious as death closed in, and Roger was wasting it in a lonely, restrictive hospital room.
“He’s not going to hospice,” my nurse practitioner told me during inpatient rounds. “We talked to him, and he didn’t want to hear any of it.”
“Let me try,” I offered.
“Best of luck,” she said with a sigh. “He’s not the easiest to talk to.”
“I know,” I said, taking a deep breath. “I know him from before.”
Then I went to talk to Roger—my patient, my friend.
Roger and I met during my first year as a medical student at the Icahn School of Medicine at Mount Sinai in New York City on the first day of the school’s Seniors as Mentors Program. For four years, students were paired with patients ages 65 and older who volunteered to teach us about medicine from a patient’s perspective. They allowed us to accompany them to doctor visits, explore their health in the home, and get to know them outside of the hospital setting. It promised to be a memorable relationship, and I was excited to see what my patient mentor would be like.
I waded through the hectic meeting hall filled with a sea of very old patients and very young medical students to find Roger, a gentleman barely older than age 65 with salt-and-pepper hair and a portable oxygen tank. After 40 years of smoking, he had lost one lung to cancer while the other succumbed to severe emphysema. Through pursed lips and wheezes escaping from his diseased airways, he offered a labored hello as we shook hands.
Roger possessed an odd combination of traits: He was extremely intelligent with great attention to detail, but he was also eccentric in a way that could be off-putting. He would impress me with his extensive knowledge of Thailand, my home country, but in the next breath he would call me “Oriental,” an outdated phrase that made me feel like a physical object from the East. We would have long discussions about the marvels of the internet, and then he would incessantly email me with requests for Facebook friendship, a gesture that made me feel uneasy. When Roger told me that he did not have many friends and that he was estranged from his brother, the only family he had left, I partly understood why. Sometimes at doctor appointments, his obsession with detail and his social oddities would unfold into awkward arguments with doctors about the minute particulars of various treatment plans. Most of these conversations ended with a frustrated provider and Roger asking for more time to process his options.
Although I got to know intimate details of Roger’s life through the mentoring program, I struggled, even in my own mind, to clearly define my relationship with him. Because of his age and his awkward quirks, I did not think of Roger as a friend, and because I was not his doctor, I did not think of him as a patient. It would not be until years later, after I had patients of my own, that I truly understood the gravity of my medical school experience with him.
Several years later at Mount Sinai, I was finishing up a fellowship in geriatrics when an attending physician flagged me down in our clinic.
“Hey, I think you know one of my patients,” the physician said. “You took a really detailed social history of him a few years ago.”
That patient was Roger. At the physician’s request, we looked at Roger’s medical chart together and discussed his case before going in to see him. Having seen many impersonal, uninformative patient records by that point, I was reminded of how insightful a medical history can be when written by someone who really knows the patient. In my student notes from several years ago, I’d written down the names of Roger’s parents and where he was born. I’d told a story of how he grew up in the Presbyterian Church and how his skepticism of it led him to become an atheist. I’d described how he always dreamed of being an architect as a boy and talked about what England was like when he designed buildings there in 1972. I’d even gone into great detail about how Roger played Go, a Chinese board game, probably because I liked the game myself and we used to have long conversations about it. Years of stories came flooding back through the notes, and I remembered Roger.
I remembered him despite the new long white beard he’d grown and the bald spots where his salt-and-pepper hair used to be. He remembered me, too, even with a new haircut and a long white coat. Despite our changed appearances, our connection was the same: Roger was still the elderly, intellectual man who loved Go, and I was still the girl from Thailand who worked in the same New York hospital.
Soon after I happened upon Roger in the clinic, his COPD began to worsen, and he started coming to the hospital frequently with COPD exacerbations. During the first visit, he recovered well enough to return home. But after a few admissions, it was clear that his body was failing him, and the likelihood of Roger returning to the walk-up apartment where he lived alone was getting slim.
As fate would have it, I got to be one of the doctors who took care of Roger during these admissions. Of all the health professionals on his team, I was the only person who had a chance to visit Roger at home. No one knew how Roger navigated the oxygen tubing covering his apartment floor but me, and I began to recognize the significance of getting to know patients beyond the incomplete picture we saw in the hospital. To effectively provide care for someone, it’s important to learn who they are, what they eat, how they breathe. Being able to visit patients in their homes is the first stage in building this crucial understanding, and this was true for Roger as it was for other patients I had visited at home. However, with Roger I was able to take the second step of building a relationship with him over the years, and this bond would prove helpful to our medical team during Roger’s inpatient stay. Since he often grew skeptical when discussing treatment details with unfamiliar providers, I became the designated communicator for the team. It was a privilege I welcomed; after reporting the chest X-ray findings of the day, I would sit by Roger’s bed and talk New York politics with him.
When it was clear that Roger’s remaining lung was quickly deteriorating, I went to tell my friend that he was dying.
I walked into his room with my usual greeting, trying in vain to convince myself that this conversation would be the same as delivering bad news to any other patient. We talked about the weather, and I asked permission to discuss the medical updates of the day. When I told him his lung was getting worse, he said he knew.
“What’s next?” he asked. I took a deep breath to brace myself for what was next.
“I can’t imagine how hard this must be for you to hear, because this is extremely difficult for me to say.” I reached for his hand and grabbed it. “Since we’ve known each other for so many years …”
Roger squeezed my hand, and I started to sob uncontrollably. My last shred of composure gave way to waves of overwhelming sorrow. It was hard to tell my friend that he was dying, that I could not save him.
“How long?” Roger asked. I could hear the trepidation in his voice.
“Less than six months,” I answered, my voice shaken by guilt and the feeling of failure.
“I think I’ve heard enough for today,” he said after a long silence. “But I’m glad you’re the one who came to tell me.”
By that cold December morning in 2015, about a week after I told Roger he was dying, a few providers had tried to offer hospice to him, unsuccessfully. Knowing him and understanding what was important to him, I knew that Roger would logically pick hospice if he could get past his mistrust and concerns over the details. Here was my chance to help guide Roger through one of the most important decisions of his life, and I did not want to fail.
“I know I can’t fix your lungs,” I started, cautiously choosing my words, “but I am going to make sure that you are always comfortable, no matter what happens.”
He nodded calmly.
I pressed on: “I want to make sure that you will always have help when breathing becomes more difficult, and the best place to keep you comfortable is at inpatient hospice.”
I paused for his reaction.
“OK,” Roger answered, his reply slow and contemplative. “What you’re saying makes sense.”
I could sense him letting down his guard, relinquishing the skepticism he had toward unfamiliar providers in prior hospice conversations. With relief, sadness, and hope—all embedded in a single question—he asked, “Where is inpatient hospice?”
I squeezed his hands. Roger was ready.
With a growing number of physicians working in shifts, shorter resident duty-hour limits, and a greater demand on physicians to work in specialized fields, patient care is increasingly fragmented, involving multiple handoffs with multiple doctors. According to a 2010 survey conducted by the market research firm GfK, of 1,035 adults in the United States, patients reported seeing an average of 18.7 different doctors during their lives. The numbers were even higher for poorer and older adults (who reported seeing 22.4 and 28.4 doctors during their lives, respectively).
With more handoffs, the therapeutic relationship gets weakened, for both the patient and the provider. According to a 2009 Archives of Internal Medicine article, 75 percent of patients in a Chicago hospital could not name a single physician in charge of their care. This is potentially associated with suboptimal care: a small 2001 study published in the Mayo Clinic Proceedings reported that correctly identifying photos of physician caregivers was significantly associated with a patient’s satisfaction with physician responsiveness and style of addressing questions regarding medical care.
When patients refuse to repeat the story of why they came into the hospital for yet another new provider, I empathize with them. As a geriatrics fellow in the hospital, I usually see patients after they have already talked to emergency medicine residents, emergency medicine attending physicians, surgical consultants, night-float residents, internal medicine residents, medical students, a handful of nurses, and numerous patient care associates. When patients appear skeptical after hearing our medical recommendations, I empathize with them, too. I’d also be skeptical if I didn’t know the name of the person recommending the next major step in my care.
Roger was not my peer, and we never did become Facebook friends. But once I became a physician with patients of my own, I grew to understand that Roger and I had a different kind of friendship. After following him for many years, a few times into his home, I knew Roger beyond his COPD, and he knew me beyond my white coat. Understanding how he made decisions, I presented Roger with a single treatment choice that was in line with his values and avoided the inherent skepticism he felt when processing detailed health care options. When listening to my medical recommendations, Roger not only had the advantage of knowing my name—he also had gotten to know me outside the hospital doors and developed a kind of trust from our years of friendship.
For physicians, the ability to learn about our patients’ lives beyond the traditional care settings is invaluable. It creates an irreplaceable understanding of patients as people and a powerful trust that can overcome barriers in health care. Yet our ability to connect with patients on a meaningful level is challenged constantly. In medical school, we are taught to apply the same script to every patient, regardless of who they are: start every visit by asking about the chief complaint, describe every patient beginning with their age and sex. In clinics, visits are becoming shorter to achieve higher productivity, and billing and chart documentation barely leave any time for meaningful conversations. Our interactions with patients have become so regimented and one-dimensional that we no longer get to know the multifaceted person outside the hospital.
As we struggle to provide continuity of care despite multiple handoffs, to recreate the joy of medicine amidst increasing burnout, and to promote a patient-centered approach to health care, the answer to all three may lie in encouraging longitudinal relationships built equally in the health care setting and in the patient’s home. This can begin, as it did in my case, during medical training. A number of US medical schools currently offer senior mentor programs similar to the one I participated in, in which medical students are paired with older patients to learn about health care through the lens of the geriatric population. The innovation, initially sponsored by the John A. Hartford Foundation and the Association of American Medical Colleges, included programs such as the University of South Carolina School of Medicine’s Senior Mentor Program, launched in 2000. Such programs should be expanded to include patients of all ages and should be offered to physicians and nonphysician health professionals alike.
In real-world practice, home visits should be incentivized, as they can create relational continuity and provide tremendous information on patients’ lives outside the hospital. For example, a 2016 study from Norway, published in the journal Midwifery, reported that postpartum women experienced a sense of “predictability, availability, and confidence” when visited at home in the postpartum period by midwives who were present during birth.
Once the critical provider-patient bond develops, our health care system must provide an infrastructure to ensure that bond can flourish and support patients across all care settings. I was involved in Roger’s hospital admissions out of sheer luck, but that should not be the norm. During transitions or hospital admissions, care should always be coordinated with a designated provider, someone on the patient’s care team who has established trust and understanding of the patient over a longitudinal relationship. This designated provider may be an oncologist for a cancer patient or a social worker for an at-risk youth. They might not always need to participate in day-to-day care, but as consultants they can help guide patients through challenging medical situations or coordinate care during transitions. Mobile health technology might help maintain these valuable connections if logistics or limited resources prohibit face-to-face interactions.
On another cold morning later in the month, I met up with Ben, the hospice liaison, to ensure a smooth care transition for Roger. We discussed the details of his care, and I told Ben everything I knew about the man who loved Go.
“Your name carried a lot of weight with him,” Ben said. “You must have known each other a long time.”
“Since I was a medical student,” I answered, as fond memories came rushing back. “I’m glad I got to take care of him. He doesn’t really have a friend to advocate for him.”
“Well, he does,” Ben replied. “You are his friend.”
Volume 36, Number 3. March 2017.
Editor’s Note: The patient’s last name was omitted to protect his privacy.