Program distinguishes illness from disease
Medical students to walk in shoes’ of patients
First- and second-year students at the University of Michigan Medical School in Ann Arbor will be getting an unusual look at the processes of disease and illness beginning this fall, when they visit patients in their homes to gain an understanding of how family, environment, culture, and lifestyle all play a part in an individual’s health.
It is hoped that through these visits, the students will come to recognize the important distinction between disease and illness that is at the foundation of this innovative program.
"We want to get the students to understand the experience of illness," explains Arno Kumagai, MD, assistant professor in the department of internal medicine and medical director of the Family-Centered Experience. "There’s a fundamental distinction between illness and disease," he notes.
Take a disease like diabetes, he offers. "The disease is an abnormality of how carbohydrates are broken down, and students study, for example, what [physical complications] that can lead to."
These principles of biomedical science basically represent what many physicians think they are treating when they treat a patient, Kumagai asserts. "But illness is the experience of living with a particular disease," he explains. "You’re looking at two different perspectives — two different languages."
One of the major goals of the program, then, is to help the students understand what Kumagai calls "the universe of illness" — how culture affects perceptions and definitions of illness and what kinds of problems exist in the disparity of medical care due to socioeconomic conditions.
The program was created through a multidisciplinary committee that included med students. "I got involved in helping to design the new curriculum at the medical school [the school has just undergone its most significant curriculum change in 10 years, according to Kumagai], and one of the committees I was on was tasked with helping design this class," says Arpi Doshi, a third-year med student. She says the committee also included physicians from almost all the departments — family practice, pediatrics, OB/GYN, and the medical education office, as well as one other student.
"I think one of biggest things the students felt was lacking [in the curriculum] was sufficient patient contact in the first two years," she says.
"We wanted to create a way that students could understand illness and how patients experience it. This doesn’t happen with just one session but with several — getting to know them, their environment and how surviving with illness can change lives," Doshi explains.
Beginning this fall, pairs of medical students will be matched up with volunteer families, at least one member of which has a serious or chronic illness. A total of 85 families have been enlisted through mailings and brochures explaining the program. "The physician also has to give us a release form to talk with the family," Kumagai adds.
This will be a two-year course. During each year, the med students will have four home visits with the families, during which they will discuss different issues concerning living with illness. The major topics, he says, will include:
• Self and illness.
The impact illness has on oneself, how the patients see themselves, their plans for the future, what fears they have about the future, and what hopes they have. What have they lost in terms of abilities, hopes, or aspirations? What insights and what kinds of strength have they gained?
• Illness and family.
What kind of impact has the illness had on the members of the family? "We’re defining family’ in the broadest sense," Kumagai explains. "It may just be the nuclear family, or it may include the entire social support network — roommate, caregiver, neighbor, partner, teammate. We also want to look at what kind of dynamics go on in the family, and how they impact the way an individual copes."
• Illness and the health care system.
What kind of interactions have individuals had with their physician and other health care providers? What are the good and bad things about those experiences? Are the patients’ opinions undervalued? Deflected? Do they feel humiliated or embarrassed, or are they made angry? How are they able to negotiate the health care system, in terms of working with insurance companies or obtaining medicine and basic health care?
"We’ve also asked families if they will allow us to have students accompany them to clinical visits — as extended members of family," Kumagai adds. "We want them to have to wait in the waiting room and see what it’s like from the patient’s point of view."
Kumagai says he constantly is asked why the program involves students at such an early point in their education. The answer, he says, is simple. "In one sense, they are seeing more of the lay world; our interest in doing this is the fundamental belief that oftentimes the attitudes toward medicine they may have the rest of their career are often imprinted early. We want to get the student to understand the full impact of disease and illness, internalize it, and hopefully carry if through their career."
Will the program affect the quality of care these future physicians will give? "It depends on how effective we are, but I think it will," Kumagai says. "In fact, if they can understand what we are trying to teach them, it will have a substantial impact."
He offers this example: "Say Mrs. Smith comes into the office. She is a Type II diabetic and is not taking her meds. If you just look at the disease, you just see a bad patient. But if you also see she is a single mother struggling to make ends meet, that she has to take a bus three hours to the clinic and often has to choose between meds and other life essentials, then you have to change your attitude on how to treat her. In this way, you can perhaps take better care of that patient."
Doshi agrees. "This is where you will learn the social skills of dealing with a patient and their family," she says. "Yes, we will learn all the medical terms, the names of drugs, etc., but understanding what the patient goes through is very valuable to their care. You may also see the variety of how one disease process can affect many different people in many different ways. Also, a lot of students don’t have much knowledge of culture differences when they graduate from med school."
In concluding, Kumagai sums up his hopes for this new program: "Once students are working with patients [in their home environment]," he says, "hopefully they will see the patient as an individual who is living with an illness, rather than as a disease that happens to be walking on two feet."
Need More Information?
For more information, contact:
• Arno K. Kumagai, MD, Family-Centered Experience, University of Michigan Medical School, 1135 E. Catherine St., Room 3808, Medical Science Building II, Ann Arbor, MI 48109-0608. Telephone: (734) 936-5035. Fax: (734) 936-6684. E-mail: [email protected].
First- and second-year students at the University of Michigan Medical School in Ann Arbor will be getting an unusual look at the processes of disease and illness beginning this fall, when they visit patients in their homes to gain an understanding of how family, environment, culture, and lifestyle all play a part in an individuals health.
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