By Ami Bhatt, MD, FACC
December 6, 2018
On July 26, 1990, President George H. W. Bush signed into law the Americans with Disabilities Act. The ADA was touted for promoting health as well as civil rights.
I learned first-hand about the experience of patients with disabilities by caring for patients with concomitant congenital deafness and congenital heart disease. I am fortunate to have cared for a cadre of these patients with a dedicated sign language interpreter over the past decade. She represented me to the patients and the patients to me. Importantly, in addition to translating language, she expressed the tone of voice and achieved the delivery of emotions which are essential to effective and compassionate communication. She was also a trusted partner in my practice of medicine. Since she also knew my patients’ histories, I could trust her to accompany the patient at other doctors’ visits, to help the patient communicate what I had shared, and vice versa.
Last year, when she took a leave of absence, I began using online interpreters. My patients and I engaged in visits with an interpreter whose face and hands were awkwardly zoomed onto a laptop screen in the clinic room. There we met a different interpreter each visit, an individual who was not only unfamiliar with both my patients and with me, but also with our style and the nuances of the outpatient encounter. It was as if we had used an urgent care center with no knowledge of our medical history. Interpretation now became translation. And that wasn’t enough.
With minimal investigation, I learned that there are many start-ups focused on individuals with disabilities. As I met with a variety of companies, we recognized that to find the “right fit” of a technology with a pain point (ours being the need to communicate complex medical care in a foreign language which depended on visual aids), we needed to embrace rapid iterative cycles of pilot testing. As we learned how to incorporate novel technologies into our workflow, interviews with patients and families redirected us to a central pillar of the ADA: respect. That act requires interpersonal interaction and cannot be replaced by technology.
As we continue to embrace the ADA, we are reminded that amidst providing medical care and offering equal rights and access to care, the human connection remains one of the pillars of respecting individuals with disabilities.
On the day our sign language interpreter returned, I almost hugged her. The only reason I didn’t was that my patient and family for that visit had surrounded her first.
Fortunately, I knew how to sign “group hug”.
Dr. Ami Bhatt is the director of outpatient cardiology as well as adult congenital heart disease at the Massachusetts General Hospital Heart Center where she leads initiatives to provide state-of-the-art subspecialty cardiac care, runs her own Telemedicine Clinic for Adults with Congenital Heart Disease, and creates platforms for virtual cardiovascular care. Her research centers on using medical and patient-reported data to create prediction algorithms for risk stratification and optimal resource utilization.
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