This year, we celebrate the 34-year anniversary of the American Disabilities Act being signed into law, but I am embarrassed to admit that I have no idea how to provide care to patients with disabilities.
As a physician-in-training, I am challenged to learn every aspect of medicine and demonstrate mastery of what is considered best medical practice. We learn to take a patient’s medical history, carry out a physical exam and develop appropriate assessments and plans. We learn to put the patients at ease and build trust through empathy, open communication and compassion.
After I began working with patients with disabilities, however, I realized that I did not know how to treat them, let alone make them feel at ease. Medical educators must do a better job at building a curriculum that adequately prepares physicians to meet the complex needs of patients with disabilities.
As a Schweitzer Fellow, I worked with blind adults and adults with visual impairments living in a community home. In this setting, more than 90% of residents live with multiple diseases, including chronic obstructive pulmonary disease and cardiovascular disease, which are managed by medications. On average, residents take more than nine medications, administered by the onsite nursing team.
Where are the doctors who prescribed them, you might ask? Well, they are nowhere to be found. Some residents make the effort to see their primary care physician (PCP) but they often report that they are not treated with respect. Despite efforts to coordinate transportation plans with appropriate accommodations, residents often find themselves being asked to reschedule due to unforeseen conflicts when they arrive at their primary care physician’s clinic. When they are seen by their PCPs, it is not uncommon for them to navigate office visits or undergo physical exams without proper accommodations. In some cases, I was horrified to hear from one patient that their PCP screamed at them for not following instructions.
The Centers for Disease Control and Prevention (CDC) reports that approximately 61 million adults in the U.S. live with some disability — and the numbers are growing. According to World Health Organization, an estimated 1.3 billion people live with a form of disability. With an aging population, experts anticipate that more adults will lose their vision and/or hearing. When we also consider social and health disparities, risks for developing multiple medical conditions increase significantly for adults with disabilities.
More importantly, adults with any disabilities are nearly twice as likely to die from all-cause mortality than those without disabilities, according to the CDC. With this changing patient landscape and compromised outlook, we need more programs to educate and prepare physicians to provide better care.
To address this gap, the American Medical Association encourages medical schools to establish elective rotations specializing in care for the disabled. The Loyola University Chicago Stritch School of Medicine established an elective designed to teach physicians-in-training to specialize in care for the disability community.
The curriculum focuses on interprofessional communication and offers an opportunity to engage directly with patients who have disabilities. Students learn about the causes of intellectual/developmental disabilities, gain patient perspective, and demonstrate clinical skills through an objective, structured clinical examination. Courses like this prepare us to better serve patients with disabilities and supplement our core clinical skills. I eagerly look forward to taking this course in my last year of training.
The disability community is often overlooked. To address this, more physicians must become advocates for patients with disabilities. While some medical schools already have a curriculum designed for serving patients with disabilities, a large majority of U.S. medical schools do not. Medical schools should expand their efforts to educate physicians and physicians-in-training.
The Chicago Area Schweitzer Fellows program is a year-long, service-learning initiative supported by the Health & Medicine Policy Research Group. Fellows design and implement innovative projects that address the health needs of underserved Chicago communities.
Simon S. Park, PhD, is a 2023-2024 Albert Schweitzer Fellow at the Loyola University Chicago Stritch School of Medicine.
