In his 60s, overweight and in a wheelchair, the patient had been seeing doctors and nurses regularly for his diabetes. Only recently had they discovered a pressure sore after someone had finally, as he put it, “wanted to examine at my backside.”
The oversight struck me as unimaginable. Until I watched another doctor try.
My colleague, a strapping man in his 30s, wrapped his arms around the man’s torso to lift him onto the examining table but could hardly budge the patient. A few members of the clinic staff came in to help, each taking a limb. Several minutes later, one of the nurses called for security. Two burly men in dark blue uniforms joined the fray, grunting as they finally extricated the patient from his chair.
A nurse lunged forward to unbuckle the patient’s belt while a medical student began yanking on his sneakers, but with each tug and jerk, the guards’ grip on the patient’s torso loosened. Feeling himself slipping, the patient grabbed at the shirt of one of the guards to break his fall. The guard lost his balance and reached for the wheelchair, but its brake was not engaged. The wheelchair spun, hitting the medical student and nurse and knocking over the other guard as the patient, pants half off and one shoe missing, collapsed back into its seat.
No one was hurt. But when my colleague leaned down to ask the patient how he was, he stopped himself midquestion. Though the patient’s black baseball cap now partly obscured his face, it was clear to all of us what his expression conveyed: utter humiliation.
No doubt the patient is far from the only one suffering such embarrassment, as a recent study published in Annals of Internal Medicine on why people with disabilities still receive such subpar care makes clear.
It’s been nearly 23 years since the Americans With Disabilities Act, a federal law prohibiting discrimination against people with disabilities, went into effect. Despite its unequivocal language, studies in recent years have revealed that disabled patients tend not only to be in poorer health, but also to receive inadequate preventive care and to experience worse outcomes. One study even uncovered significant disparities in the diagnosis and treatment of breast cancer in women with disabilities.
But it’s been difficult to pinpoint exactly why. Just as there are disparities in health care for people with disabilities, financing for disability studies also falls short, so many experts and advocates have had to rely on small surveys, anecdotal samplings and their best “guesstimates.”
Now Dr. Tara Lagu, a physician-researcher at the Center for Quality of Care Research at Baystate Medical Center in Springfield, Mass., and the lead investigator of the latest report, has identified some of the root reasons her own patients with disabilities were receiving such substandard care. With no external support or research grants, she and her co-investigators first created a fictional patient based on many of Dr. Lagu’s real cases. The “patient” was partly paralyzed as a result of a stroke, could not get out of a wheelchair without significant assistance, weighed roughly 200 pounds and needed additional, specialized medical evaluation.