Can someone who suffers from a lethal genetic disease teach a pair of medical students to become better doctors? That's the goal of a unique, long-term patient-student pairing program at the University of Pennsylvania School of Medicine.
Doctors-in-training -- like Christopher Guerry, a second-year medical student at Penn -- are learning what it's like to live with cystic fibrosis (CF), and many other chronic health conditions. They're shadowing patients with chronic conditions such as HIV, asthma and kidney failure. The students are taking part in the "Longitudinal Experience to Appreciate Patient Perspectives (LEAPP)" -- a program at Penn's medical school - in which students are paired with chronically ill patients for several years.
"The goal of the program is to better understand what the patient must go through and to improve doctoring skills by learning from those experiences," explains Paul Lanken, MD, Professor of Medicine in the Pulmonary, Allergy and Critical Care Division at Penn and Director of the LEAPP program. "We want to produce better doctors -- doctors who have a real compassion for what the patient is going through, including their daily struggles with a serious chronic condition."
Medical Student Paired With Patient Deb Becker
Deb Becker has battled Cystic Fibrosis (CF) -- a disease characterized by thick mucus in the lungs that affects breathing and digestion -- more than half of her life. The 50-year-old grandmother first noticed the symptoms of CF at 16 and was diagnosed with it at age 25. Becker eventually lost her oldest sister, who also suffered from the disease. And throughout Becker's life, as a single parent, she has been in and out of the hospital often. But she persevered, "You put one foot in front of the other and do what you need to do."
On oxygen round the clock, Becker, a Shiloh, New Jersey resident, has limited mobility. Cystic fibrosis affects my lungs," she says. "The weather and allergies make it hard to breathe. I cough. But I still try to get out and about; I try to leave the house everyday at least to go grocery shopping."
"Medical students can learn from me," Becker comments. "When it comes to medical treatment, I don't trust anybody. I question a lot. I want to know why someone's doing something. I want the young doctors to learn to respect the patient as a thinking person and make time for them."
Medical student Christopher Guerry will follow Becker's progress over the next three years. "This long-term experience can give us an appreciation of being able to have a more in-depth relationship with a patient, similar to the way physicians used to work within communities, when they had a real and lasting relationship with their patients," said Guerry.
Guerry's first visit with Becker lasted two hours. He learned about CF and the difficult aspects of the disease Becker has had to live with and overcome. "Mrs. Becker is wonderfully open and there is so much we can learn from her personality and strength. The burden of managing such an illness daily is incredible. I am struck by her optimism and humor and love of her family."
Student/Patient Pairing Leads to Patient Advocacy and Better Doctors
David Lipson, MD, Director of the Adult Cystic Fibrosis program at Penn and who is also involved in the LEAPP program, notes, "We are bringing the patient into the classroom, so to speak. It's one thing to read about a disease; it's another to interact with a patient and see how the disease affects them physically, socially, financially, and coping in general."
Douglas Holsclaw, MD, Senior Staff Physician with the Adult Cystic Fibrosis program at Penn Presbyterian Medical Center, who diagnosed Becker and has been her doctor for the last 25 years, says, "The medical students in this program get a learning experience here at Penn -- with all the resources we have and the depth of knowledge of our physicians -- that they may not get elsewhere. They get to see firsthand the doctor-patient relationship truly evolve, during which the doctor is able to continually comfort a patient, and say to them 'you remember how you made it through that surgery in the past, you were fine, you bounced back, and you'll be fine this time too.'"
Medical students in the LEAPP program are expected to meet the patient they are paired with in person, and then follow-up with them by phone or face-to-face at least every month over a three-year period. Students are also encouraged to visit their patients when they are hospitalized, during other doctor visits, and during outpatient testing. One in-home visit is required. Also, students must complete written assignments, which focus on the biopsychosocial aspects of their patient's illness.
In the first year of this experience, students primarily work to form a relationship with the patient and family. In the second and third years, students are expected to have the sufficient skills and knowledge to serve as 'health coaches' for their patients, under the supervision of the patient's physician.
"We want the students to learn how a patient with a chronic health condition lives and works -- how it affects not only their physical well-being but also their emotional and spiritual well-being, too," explains LEAPP Director Lanken. "We want them to understand this from the patient's point of view, not the doctor's. We want them to view their future patients first of all as persons, and learn what it's like for them to live with their particular condition and how it affects their family. Bottom line -- in the long run, this will teach our Penn medical students how to be better doctors."
This program is funded by a generous donation by an anonymous supporter of better medical education.
Cystic Fibrosis, caused by a genetic mutation, affects 33,000 people in the U.S. Most patients are diagnosed in childhood. It's characterized by respiratory insufficiency, sinus disease or bowel problems. Patients develop problems in general due to thickening of mucus, which is hard to get rid of. This can cause inflammation and tissue destruction and affect breathing. The median survival for a CF patient is about 33 years.
For more information on the disease, go to:http://pennhealth.com/ency/article/000107.htm
For more information on treatment, go to:http://pennhealth.com/lung/services/adult_cystic.html
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