By Lucy Berrington, MS
Following the teaching exercise, Tufts medical students chat with a young patient-educator diagnosed with Autism Spectrum Disorder.
“What brought you here today?” the medical student asked the patient, a teenage boy. “The bus,” the patient said. He didn’t seem to be joking. The student tried again: “What do you want to talk about?” “Nothing, really.” Gradually, the student’s questions became more specific. “Are you sick right now? Have you had any symptoms recently?” “Yeah — I’ve been having some stomach problems.”
Medical students are trained to ask open-ended questions. Sometimes, those don’t work. In this interaction, the teen, who had autism spectrum disorder (ASD), was employed by Tufts University School of Medicine as a standardized patient educator. He was meeting a “new physician” — the medical student — to discuss an annual physical and a flu shot. His conversation was literal and honest; he didn’t want to talk about anything. Another student and a faculty member observed the interaction, which took place at the Tufts simulation center.
This experiential teaching program, part of a third-year family medicine clerkship, allows students to learn from disabled patient-educators and adapt their clinical skills to deliver more culturally competent, patient-centered care. Patients with ASD, for example, may communicate in ways that upend their doctors’ scripts and expectations, among other barriers to accessing and receiving effective medical care.
Disability-Related Disparities
Research reveals large disparities in health care access and outcomes affecting people with physical and developmental disabilities. The documented under-emphasis on disability within medical education likely contributes to the dearth of expertise and the limited ability of the health care system to meet the needs of these patients.
The disability teaching exercise is a powerful vehicle for teaching humility and the importance of learning from patients, says Wayne Altman, MD, FAAFP, chair of family medicine at Tufts. “There’s a lot of pressure as a physician-in-training to accumulate an enormous amount of knowledge. Amidst that pressure, sometimes it feels difficult to admit that you don’t know something. Having humility with your patients is so important. Patients with disabilities often have knowledge about their condition that their physician or the medical student doesn’t have.”
The focus on patients-as-educators in medical education is not new, but meaningfully including patients with disabilities, and autism in particular, is novel. Feedback from medical students is “off-the-charts positive,” says Dr. Altman. He and colleagues created the program 15 years ago, featuring adult “patients” with real-life physical disabilities who presented with fictional shoulder pain. The program subsequently expanded to include patients with autism (and, in some cases, their parent or caregiver).
Real-Life Medicine
In one encounter, a medical student conducted the consultation without asking the “patient” why she used crutches. Without that information, he couldn’t consider whether the crutches, or the disability that necessitated them (spina bifida), may be contributing to her shoulder pain or might exclude certain treatment options.
“This is a great way to demonstrate that when you come up with a treatment plan for a patient, you need to account for what’s happening in their life,” says Dr. Altman. “You can’t just read out of a textbook, ‘The treatment for shoulder pain is this.’ The students really figure out that the skills they’re learning in this encounter apply to every patient they’ll see for the rest of their lives. When you talk to a patient who has a disability or who’s on the autism spectrum, it really pushes you a little harder toward recognizing that.”
The reporter is a clinical instructor in this teaching program.
