A new program at the School of Medicine is betting that matching students with chronically ill patients, who they then follow throughout their four-year curriculum, will help them to become better doctors.
By Huntly Collins | Photography by Candace diCarlo
Plus: “I Want to Remember Everything,” a student perspective by Defne Amado
Was it Christian Street or Catharine Street? The two medical students weren’t sure as they navigated the densely populated blocks of the Gray’s Ferry section of Philadelphia looking for the home of the kidney-transplant patient they had met in clinic a few weeks before. Ericka Gibson, a graduate of Spelman College in Atlanta, was new to Philadelphia and still getting to know the city as she neared the end of her first year of medical school at the University of Pennsylvania. Her classmate, Casey Halpern, had grown up in the Philadelphia suburb of Radnor, Pennsylvania, and had spent four years at Penn as an undergraduate. Still, he wasn’t that familiar with the working-class neighborhood just across the South Street bridge from Penn’s sprawling medical complex on the west side of the Schuylkill River.
Once a lower-middle class stronghold, Gray’s Ferry is now being gentrified, with renovated rowhouses and new condos sprouting on nearly every block. While this new wealth has brought opportunity, it has also posed challenges, including the prospect of higher property taxes for the elderly residents on fixed incomes, many of whom have lived in the neighborhood for generations. Mary Bullock, a 67-year-old widow who has lived in Gray’s Ferry for more than 50 years, vows to hang onto her three-story rowhouse in the 2400 block of Christian Street. “They buyin’ out here like hotcakes,” she says. “But not me. Not now, anyway.”
As they criss-crossed the neighborhood trying to find Bullock’s home one sunny afternoon in June 2004, Gibson and Halpern were among 150 entering students at Penn’s School of Medicine who were embarking on a bold new experiment in medical education. Beginning with their class—the Class of 2008—Penn started requiring all entering medical students to be matched with a chronically ill person in the community, whom they are to follow for four years. The patients, recruited from among the practices of Penn-affiliated doctors, range in age from three to 96. Their illnesses run the gamut—from renal disease, as in Bullock’s case, to HIV, heart disease, diabetes, asthma, rheumatoid arthritis, and many other conditions that medicine can treat but not cure.
The students are grouped into pairs. Each pair is asked to get to know their patient during an initial home visit or a visit someplace on the patient’s home turf such as a community center or a church. The students then follow the patient during clinic visits and come to the patient’s bedside if they are hospitalized. The students are also encouraged to call their patient at least once a month and to keep a personal journal about their experiences. The goal, say school officials, is to help medical students see the world from the patient’s perspective—and thereby become better doctors.
“How do you get to know a patient as a person first, not as a container for a disease?” asks Dr. Paul N. Lanken, a critical-care pulmonary doctor who heads the medical school’s new program, known as LEAPP, for Longitudinal Experience to Appreciate Patient Perspectives. “The disease is the disease. But the illness is what the patient, as a person, experiences. You can study diseases in textbooks, but you can only understand illness by talking to patients.”
Lanken, a tall man with blond hair and glasses, is the only Penn administrator with the word humanism in his title. In addition to being a professor of medicine and medical ethics, he is also assistant dean for professionalism and humanism in the School of Medicine. Working out of a crowded office on the eighth floor of the Gates Building, Lanken directs a course called “Doctoring,” which runs throughout the medical school’s four-year curriculum. It aims to help students grapple with the ethical and professional dilemmas they will face as doctors in the 21st century, including such issues as end-of-life decisions and doctor-patient confidentiality. “We are not trying to inject a bolus of empathy, but to enhance the students’ ability to communicate with their patients,” Lanken explains.
The LEAPP program was added to the doctoring course last year after the medical school received an anonymous donation for a program that would enhance the communication skills of medical students. The gift presented just the opportunity that Dr. Gail Morrison, Penn’s vice dean for medical education, was looking for. Back in 1997, she had spearheaded a complete revision of the medical school’s curriculum, a project known as Curriculum 2000. Essentially, the school set aside its decades-old approach and started from scratch, carefully building a new course of studies that would prepare students for the challenges of medicine in the 21st century. The doctoring course was one element of that revision.
Still, Morrison was not satisfied. While the new curriculum was an improvement, it did not allow students to follow one patient over time in the same way they would be following patients when they entered practice. The month-long rotations during the second year of medical school only exposed students to patients for brief clinic visits; the student who saw a patient in a family practice clinic, for example, might never see that patient again. While students also attended medical rounds in the hospital, most patients who are hospitalized nowadays are too sick to communicate in any depth with their physicians. “Ninety-five percent of all patient care takes place outside a hospital setting,” Morrison says. “If students only see patients in a hospital setting, they really are not seeing the world in which they will be taking care of patients.”
Looking to the future, Morrison and her colleagues realized that chronic disease would be the perfect lens through which students could come to know a patient over time. More and more, medical advancements are turning once-lethal diseases, such as hypertension and diabetes, into chronic but manageable illnesses. Even AIDS, once a uniformly fatal illness, has been tamed so that people can live with it for many years as long as they take their medications as prescribed. While many chronic illnesses were once treated in the hospital, those same ailments are now treated in the clinic. Why not match students with chronically ill patients, whom students would follow during the entire course of their medical education?
Dozens of medical schools across the country are now latching onto some version of that approach. The John A. Hartford Foundation, for instance, is funding 40 U.S. medical schools to integrate geriatrics and gerontology into the curriculum. The programs often pair students with senior citizens and encourage them to participate in the person’s daily life, such as sharing meals, grocery shopping, and taking bus trips to the mall. But Penn’s program is believed to be the most comprehensive in the country, according to M. Brownell Anderson, senior associate vice president at the American Association of Medical Colleges. “It’s a great program,” she says. “And to the extent that it focuses on chronic diseases, it’s unique.”
Although some Penn medical students were resistant to the new approach, most in the Class of 2008, including Gibson and Halpern, eagerly embraced it. After months of intense study of basic science and organ systems, not to mention carving up cadavers in gross-anatomy class, it was a relief to be going out into the community to meet a patient whom they would see on a regular basis throughout their medical education.
Still, the two first-year medical students felt a little awkward as they stood on Bullock’s marble stoop, waiting for her to open the door as her dog, Angelica, a spirited Pomeranian, barked incessantly in the background. Unlike their science classes, where there was a body of knowledge to master, the home visit was open-ended. The purpose was simply to get to know Bullock as a human being.
Gibson, who came from an upper-middle-class family in Chattanooga, Tennessee, where both her parents were doctors, was uncomfortable with what she regarded as the nebulous nature of the assignment. “We had a very vague purpose,” she recalls. “It was social, but it kind of wasn’t.” Halpern, a graduate of Episcopal Academy and the son of an accountant and a college Spanish professor, was a bit nervous. But he was eager to hear what Bullock had to offer. “Her role was really to be our teacher,” he says. “Not only was she going to tell us her life story, but she was also going to help us understand what makes a good doctor.”
The woman who swung open the door and welcomed the students into her home last June had skin the color of dark chocolate and a chiseled face. Some weeks earlier, she had been hospitalized for gout, so she was moving a little slowly. But she was proud that her physician, Dr. Jeffery S. Berns at Presbyterian Medical Center, had asked her to be a patient volunteer in the LEAPP program. “I like to help people,” she says. “If I can help you, I’ll do all I can. If I can’t help you, I’m not going to hurt you.”
Like many of her generation of African Americans who now live in Philadelphia, Mary Bullock was born in the South and came North as mechanization was eliminating the use of cheap black labor on which the agricultural economy had been based. In 1951 she left the small town of Franklin, Virginia, with her mother and a sister, arriving in Philadelphia’s Gray’s Ferry section at the age of 13. She attended Barrett School at 16th and Wharton Streets, but dropped out in eighth grade to go to work in the city’s garment industry. Eventually, she married and had three sons. Her husband, who died of throat cancer in 1988, worked as a security guard at nearby Graduate Hospital.
For 37 years, Bullock did what she calls “table work” at a men’s suit factory at Broad and Carpenter Street in South Philadelphia. She used a piece of chalk to draw the outline of pockets on suit jackets. When she was done, she passed the marked jacket on to the next worker, who sewed on the pockets using her outline as a template. It was repetitive labor, but it paid union wages and was close enough to home that Bullock could walk to work.
Like hundreds of other garment workers in Philadelphia, Bullock was laid off from her factory job in the mid-1990s as the garment industry moved overseas. She managed to land another job as a night janitor at City Hall Annex. But after seven years—just three years shy of a pension—kidney failure stemming from high blood pressure forced her to retire. “First one kidney went bad, then the other,” she recalls. The condition put her on dialysis three times a week while she waited for a kidney transplant.
Originally, Bullock’s youngest son, Bernard, who works at a city waste-water treatment plant, was to donate one of his kidneys. But one Wednesday morning in 1998, Bullock’s phone rang. It was a nurse at Hahnemann Hospital, where Bullock was to have her transplant operation. “The nurse said, ‘Mary Bullock, what is your Social Security number?’ I told her. Then the nurse said, ‘Mary Bullock, what are the last three numbers of your phone number?’ I told her that, too. Then she said, ‘Mary Bullock, come on in, hon, because I got a kidney for you.’ Oh, I got down on my knees and prayed! I knowed they got a kidney for me because God told me.”
As he listened to her story last summer, Halpern was struck by the role that religion plays in Bullock’s life. She attends the New Temple Baptist Church just a few blocks away from her home. In terms of her health, her faith seems to get her through the hard times and it gives her hope for better times in the future. “The only way I’m surviving is by God,” she likes to say.
Bullock’s survival with a kidney transplant for seven years was something of a miracle, Halpern thought. “She is a lucky woman. You hear people say, ‘Thank God, I’m alive,’ and it’s just an expression. But when Mary says it, she really means it. It’s so integral to her identity that if a physician doesn’t see that, they are going to miss something.”
Berns, who has been treating Bullock ever since she went on dialysis nearly a decade ago, agrees that religion is an important element in the lives of many of the largely African-American population that he sees in his busy renal disease practice. “Religion holds the family together,” he says. “It affects the decisions the family makes, especially end-of-life decisions. It also gives people hope that somebody other than me is looking out for them!”
A soft-spoken man who came to Penn from Graduate Hospital in 1999, Berns volunteered to be one of 15 clinical preceptors for the LEAPP program last year. He matched 14 medical students, including Gibson and Halpern, with seven patients from his practice, including Bullock. Although time-consuming, the job carries no extra compensation. A total of 31 faculty members at the Penn medical school are now serving in similar roles as clinical preceptors for LEAPP.
“To me, the greatest reward of coming to Penn is the opportunity to teach students,” Berns says. “The students have opened my eyes. They have found things I didn’t see.”
Berns believes that the LEAPP program is playing a vital role in helping medical students come to understand their patients as full human beings. Among other things, he says, students learn the importance of family and community; the frustrations of dealing with the health-care system; and the dilemmas involved in running out of medicine at the end of the month and having to decide which ones to take and which ones not to take. “Each one of these students is going to go away with a unique experience that they will never forget.”
LEAPP officials describe the program as a work-in-progress and note that a number of kinks need to be worked out. The logistics alone are daunting. How do you match 75 pairs of entering medical students, year after year, with chronically ill patients scattered among different Penn-affiliated medical institutions? How do you keep students engaged when they hit their second-year of medical school and begin an intense period of month-long rotations in various specialties? The job of keeping the trains running falls to Carol Phillips, the program’s coordinator, who works out of a tiny office adjacent to Lanken’s. Previously, she spent 15 years working in guest services at the Four Seasons Hotel, where she was in charge of taking guest complaints. “In a lot of ways, this is the same,” she says. “Just as the guest is always right, here the patient is always right.”
Even so, with so many wheels in motion, slip-ups are inevitable. For instance, Gibson and Halpern were supposed to be notified whenever Bullock entered the hospital. But she spent a week in the intensive-care unit last Christmas and they were not informed. Under the pressure of time, some students fail to keep a journal of their experiences and others don’t call their patient once a month. Although required, the doctoring course is graded on a pass/fail basis and students are pretty much on their honor to complete the work. On the patient side, some patients who volunteered for the program decided they didn’t want to take part and others have died. This has delayed the matching for some students as officials search for new patients to replace those who leave.
Soon the program will be formally evaluated through focus groups and interviews with patients, students, and doctors. LEAPP was established as an experiment that was approved by an institutional review board at the University. The patients involved all sign informed-consent forms. “Is this a win for one side—or for both sides?” asks Morrison, referring to students and patients. “It should be a win-win proposition.”
While a definitive answer to that question is pending, the anecdotal evidence points to a positive outcome. Phillips says she has received a number of e-mails from students saying that the home visits, which are first conducted as students shadow Penn physicians into homes, were the reason they came to Penn. In general, doctors have had little problem finding enough patient volunteers. And in one case, the student-patient bond established through the LEAPP program was so important that the family of a patient who died read a note from one of the students at the man’s funeral. “We have been able to be 90 percent successful,” says Lanken. “Batting .900 isn’t bad in the major leagues.”
In the long run, the LEAPP program can only be evaluated when its first graduates, members of the Class of 2008, establish their own practices and encounter the real world of modern medicine. Just how humane can even the best-trained doctors be when reimbursement systems reward them for cramming the largest number of patients into the fewest hours?
Morrison is banking on what she calls the “trickle-up” theory: Penn, she hopes, will train humane physicians who will then go on to make the entire system more humane. Halpern, who wants to become a neurologist, is already committed to bucking the system: “Even if they are busy, good doctors make the time to talk with their patients.”
Huntly Collins is a Philadelphia writer and former medical reporter at The Philadelphia Inquirer.
SIDEBAR
“I Want to Remember Everything”
by Defne Amado
One of the students’ responsibilities in the Longitudinal Experience to Appreciate Patient Perspectives (LEAPP) program (see main story above) is to keep a journal about the visits they make to patients’ homes. The text below was written by Defne Amado, who is currently a second-year M.D./Ph.D. student, five months(as of May) into clinical rotations. A 2003 graduate of Columbia University with a major in neuroscience, she came to medical school thinking she knew what she wanted to specialize in but now is not so sure, she says, “since I’ve loved every rotation I’ve done so far.”
Amado grew up in the Philadelphia suburb of Wynnewood, Pennsylvania, but was born in Istanbul, where her grandfather is a practicing physician. “[He’s been a] huge inspiration for me and has taught me so much about the humanistic side of medicine and why it’s at least as important as the rest,” she says.
This message was reinforced by the home visits and other interactions students have with patients through the program, she adds. “I really think the experience I wrote about, and others like it, helped prepare me.” In the following passage excerpted from her journal entry for October 14, 2004 , Amado talks about driving with “Dr. K”—Dr. Bruce Kinosian, associate professor of medicine—and Brian, another medical student, to the home of “Mr. W,” a 54-year old man suffering from sarcoidosis, an immune system disease of unknown cause, and associated complications including lung disease, diabetes, and memory loss.—J.P.
… I sit in front, so I’m first to be handed the chart. I feel so weird and privileged when someone hands me a chart. It’s confidential, and they’re like, Here, look through this. Some of the most personal stuff about someone there is to see.
I casually flip through the chart as [Dr. K] tells me that the patient we are going to visit is a man with sarcoid. Oh man I wish I’d studied that a bit more. I’m in pulmonary now and we learned about sarcoid this morning, but I was late to class and tired and it’s probably not what I would have studied tonight anyway. Dr. K says that he is one of three people visiting this patient; the other two are nurses and they visit more regularly, and this is Dr. K’s first visit. Dr. K expresses regret that Mr. W is so sick, because he is young—54 …
Mr. W lives with his son and his mother-in-law, who opens the door for us and welcomes us in. The smell in the house is pungent, and it is the cat’s fault. He guiltily scurries away as we enter. He is black and white. For awhile I am trying not to cough; cat litter particles seem to be tickling the back of my throat. Brian coughs, once, politely. I am jealous. Mr. W’s mother-in-law is petite and friendly. The family is black. Mr. W’s son appears to be in his late teens or early 20s and is rather big, and is welcoming and kind … He seems to know everything about his father’s illness—where he’s been treated, where each nurse comes from, what each insurance plan stipulates (he’s on three). The house is tiny and dark. Newspapers have been put up over one of the few light sources, a window in the door. A television is on in the living room, and beyond the living room is a narrow dining room with a kitchen off to the side, and the dining room has old yellowed tearing wallpaper, and there is a table against the wall that takes up most of the kitchen, and it is covered in pill bottles and papers and a salt and pepper shaker in the shape of a toaster with two pieces of bread; and in the dining room is a respirator, and in the back of the dining room is Mr. W, connected to the respirator by a clear tube that is in coils on the floor and runs up around his ears and into his nose.
Mr. W is well-dressed in a button-down blue shirt and nice pants. He is thin, but his abdomen seems distended. He looks his age, but sick—his face is weary. His head hangs down and his mouth hangs open, revealing a tooth here and there. He is welcoming and eager to please, shaking hands with all three of us. He strikes me as not quite with it though … [The son] and the mother-in-law remain seated on the couch in the living room for the most part, but it is so as not to interrupt our interaction. They both interject at times to clarify important information about Mr. W’s health or care. Sometimes the son is in the room with us, unobtrusively, off to the side. I feel like Brian and I take up a lot of room in the kitchen. We are constantly moving around to either stay out of the way or to see better.
Dr. K removes Mr. W’s shoes—special shoes for diabetes, padded—and socks, and pulls up his pants. He has sensation in both feet—that’s good—and can tell which way his toes are being pointed, meaning his diabetes isn’t horrible at this point. His right leg is thin and proportionate, but then Dr. K lifts his left pant leg and I understand what edema is. The calf suddenly bulges out, like a marshmallow on a stick of an ankle, and when Dr. K pushes on it, little dents stay in the shape of his fingers: pitting edema. Dr. K asks me why this is happening in one leg, and I postulate that it’s vasculature-related but I’m not quite on the right track (I’m thinking sarcoid in the vessels), and Brian gets it—in Mr. W’s chart, it said he had a deep vein thrombosis in his left leg. Fluid isn’t draining out of that leg well, so it’s building up.
The interview is uneventful for awhile, and then Dr. K begins the mental status examination. He asks Mr. W to spell world, which Mr. W does well. He spells it backwards correctly when asked as well. Then Dr. K says, “Can you remember three words for me?” and Mr. W proudly says, “Yes, sir, I can.” The three words are: shirt, blue, and honesty. Then Dr. K takes his blood pressure and asks him to tell him about his service in Okinawa and Vietnam. He remembers where he served, but does not remember details—“It was a looong time ago, doc.” A few minutes into their conversation and while Dr. K struggles to find an audible vessel for the blood pressure, he casually asks Mr. W for the three words. Mr. W cannot remember any, but he thinks hard—he wants to remember. Dr. K lets him take his time, but it’s not coming. Time passes. He says, “The first word is something you wear.” Mr. W thinks and finally says, “It’s not a shirt.” Dr. K kindly says, “Yes, it is. Can you remember the second word?” Mr. W thinks hard. Nothing. “It’s a color,” says Dr. K. Nothing. “It’s black, blue, or brown,” prods Dr. K. Mr. W looks satisfied. “Black.” “No, it’s blue. How about the third word? It’s a moral value, that you see in people, that’s good.” “Value.” Time passes. Dr. K tells him the word is honesty. “Can you tell me the three words now?” Mr. W cannot, and looks frustrated and sad. Something is dawning on him. Dr. K tells him the words again. When he asks him later, he cannot remember any, and Dr. K switches the subject. Dr. K had told us in the car that sarcoid can get into the brain. It seems like his short-term memory isn’t working well, and perhaps long-term either—he remembers little about the war. Sarcoid affects the frontal lobes especially, impairing executive function.
Dr. K is now taking blood pressure in the other arm, and asks Mr. W to name 10 animals that have four legs. Mr. W names “Cow … horses … dog… ” and one other. He thinks so hard for the fifth, the effort is so obvious on his face as he leans over the table concentrating and not even noticing Dr. K taking his blood pressure. He says, “It’s on the tip of my tongue….” He is bent over the table racking his brain, his mouth is moving but he can’t think of it. Then he sits down and puts his head in his hands. It is quiet for a long time. It seems that he is just now noticing the degree of his deterioration. “I hate this,” he says quietly. Dr. K stops and sits down close to him. “You hate what?” Long pause. Mr. W says, “You’re here”—looking up at Brian—“and you’re here”—looking up at me—“and … it’s like I’m STUPID.” He spits the word out; he hates it and it’s foreign to him and beneath him. “It’s like I’m stupid,” he repeats quietly. He is about to cry. So am I. I’d better not. I bite my lip. Dr. K says nothing, just sits with him, looks at him. Mr. W says, “I hate this. I’m not like this.” “You hate what?” asks Dr. K gently. “My mind…” he waves his hands near his head. He is frustrated and near tears. Dr. K explains that it’s the sarcoid that sometimes goes to the brain and messes up the mind, that he’s not stupid. Mr. W stares at him. Finally he reaches for the doctor’s hand and shakes it. “Thank you, Doctor.” Dr. K later explains that Mr. W probably noticed his mental status deteriorating, but couldn’t attribute it to anything and it made him embarrassed and frustrated. Now he knows why it’s happening, and it is a big relief. Dr. K tells him he can do exercises for his mind, same as for his body. Mr. W would like that. Dr. K will tell the nurses to set something up …
Dr. K asks Mr. W what he would do if he could have a new pair of lungs. Mr. W says “Put ’em in doc, if you can do that.” Dr. K explains that it’s just to get him talking about his ambitions. Mr. W says that he would do his life’s passion—he would cook. That was his profession. Does he cook now? Oh yes. OK, rephrasing of the question. What would he do that he can’t do now? Mr. W does not understand, even when his son explains it. Dr. K keeps trying, and the son quietly leaves the room. A few minutes of struggling later, I suddenly see Mr. W look up at something behind me. He stares. His eyes are wide and his mouth is hanging open. He looks happy. I turn around and his son is holding up a large picture of two small children, a boy and a girl. “He knows what this is,” the son says. “It’s his grandchildren.” Pause. “That’s what he wants to do, that he can’t do. My dad doesn’t always understand. But he would do more with them, if he could.” It is quiet for awhile. “Do you want to be more active with your grandchildren, Mr. W?” asks Dr. K. Mr. W looks down. “Yes.” He tells us that his granddaughter is “the spitting image of her grandmother.” He points to his eyes, under his eyebrows. They have the same eyes, eyelids. He begins to cry. Dr. K holds his hand. “The spitting image of Cynthia.” He likes to hug his granddaughter tight, “so tight.” He misses his wife. He loves it when his grandchildren visit—“Oh yes,” nodding and nodding, “yes yes yes.” Dr. K has subtly checked his watch and he is 15 minutes late to pick up two more med students for another visit, but that has to wait. I am wiping tears on my hand, trying not to be noticed. There is nowhere to wipe them so they go on my shirt and pants. It is so quiet. Time is perfectly still. The smell is OK. The cat keeps walking around and meowing. “I’ve been sick for so long, Doctor. Soooo long.”
We need to go. Dr. K will get Mr. W help with his mind and with his lungs, so he can move around more. We say goodbye and shake his hand, and his son’s hand, and his mother-in-law’s. They are so grateful. The son says thank you a million times. “Thank you doctor. Thank you so much.” It is so dark in the apartment now. There is one small shade-less lamp and the blue light of the TV. We walk outside where it is light and fresh … Mr. W has not left the house since the nurse took him for a walk a month ago. We talk some more about the disease and Mr. W’s function in the van. On the way to the house, I had asked about life expectancy, and Dr. K had said he had about four or five years to live. I had asked what he would die of, and it could be heart failure, lung failure, or an infection—a lot of things. When I saw Mr. W I wished I hadn’t asked. It seemed irreverent. I know when I get home that sarcoid is the first lung disease I will understand well, because I will look it up immediately. After writing this though, because I don’t know how to put it all together, and how to tell someone, and I want to remember everything.
— Defne Amado
