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January 7, 1998

Living With Disability: A Proposal for Medical Education

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JAMA. 1998;279(1):83. doi:10.1001/jama.279.1.83-JMS0107-8-1

The time has come for physicians in training to learn about living with a disability. This is not a novel idea. Many schools of nursing, physical therapy, and some schools of medicine have attempted these "sensitivity trainings, " as they are commonly called. Yet these experiences are usually brief, lasting 3 to 4 hours at the most, in a controlled environment, and the impairments that are reproduced are limited, with no specific focus on the care provider's role in relation to the patient. Current training programs do not usually include extensive educational components disseminated in didactic, interactive, and experiential modes.

We decided to broaden and deepen the experience so that it would be a valuable learning tool for medical students. We approached the University of Pennsylvania with a 48-hour pilot program for first- and second-year students on the topic "living with a disability. " Thus our course began.

We convened 14 students over dinner, gave them the ground rules, and taught them the basics about using devices such as walkers, canes, wheelchairs, braces, and crutches. We taught them how to initiate a transfer from bed to chair and how to assist in a transfer without injuring themselves. Then, pair by pair, the students assumed their assigned roles of patient and caregiver. Each pair received a set of information and devices including the medical diagnosis of the patient, an explanation of the relationship between patient and caregiver, devices to be used for the patient, a list of suggested observations to make and record over the next 24 hours, and a detailed itinerary for a field trip around the campus the next morning. They were to stay in role all night.

That next morning, the students looked haggard. None had slept more than 4 hours because "everything takes so much longer." They felt tired, sad, angry, and frustrated. Emotions expressed by caregivers and patients were similar, a phenomenon that is a real occurrence in medical practice. After discussion of some of these issues, the students resumed their roles and set off on their assigned field trips for the rest of the morning.

When they returned, the students were eager to talk about their day. They noted that bathroom accessibility is not always what it is meant to be, that they were often overlooked or stared at, and that curbs and sidewalks were unfriendly to the wheel of a wheelchair or the tip of a crutch. The caregivers were tired of waiting, worrying, helping too much or not enough, and feeling guilty for wanting space and time alone.

We spent the remainder of the afternoon acknowledging the students' courage and recognizing the grace and good fortune of a healthy body. The students also learned some basic information that every health care provider needs to know: What is a disability? What is a handicap? What is "reasonable accommodation? " What else does the Americans with Disabilities Act say? What are the issues that arise in employment, finances, family dynamics, and a patient's own sense of self? What are the stages of coming to terms with a chronic illness? Why is depression a common, treatable, coexisting process? How can physical therapy, occupational therapy, counseling, and rehabilitation medicine help? How can students and doctors help?

Chronic illness can be unpredictable, lasts a long, often unforeseeable amount of time, and resists most efforts at "cure." Patients with chronic illnesses do not expect a cure. What they ask for is much less well defined and, therefore, much harder to teach young physicians in training. These patients want someone who seeks to understand not only their disease, but their experience of illness—the composite of the patient's views, feelings, and responses to disease, and its effects on the patient's life and the lives of those with whom they relate.

It was not until I myself became a patient facing the diagnosis of a chronic, unpredictable disease, multiple sclerosis, that I finally understood. It was through repeated experiences in the role of a patient, struggling to accept a body that seems to betray you, relinquishing control and having to ask for assistance with tasks that even a child can perform, having to redefine my role in a profession that I cherished, that I truly understood.

The path before us as medical educators is different now than it was several years ago. We must begin to focus on collaborative, integrated care for the chronically ill, including aspects such as communication and technological skills, ethics, diversity, pain control, nutrition, complementary therapies, spirituality, and most importantly, improved educational models. The time has come for medical educators to recognize these changing needs in educating our future physicians.

What I have seen is that my 14 students lingered past closing time, asking questions, sharing insights, and suggesting how to spread the word to their peers. Their evaluations were overwhelmingly positive. As they left, looking exhausted, I was energized. It was just a start, but for me it was enough to restore my faith that we can teach these skills and to inspire me to continue to press for similar programs in medical school curricula throughout the country.