The students entered, chattering among themselves about their recent break. This is their interviewing and communication class, and today’s guest lecturer is a bit different than the usual physician educator. Speaking today is Linda Long-Bellil, JD, PhD, an expert in educating medical professionals about disability. Dr. Long-Bellil is also a person with a disability herself. I am assisting as well, as a physician with a disability and a wheelchair user. A young adult with a disability and his parents, a mother of a child with autism (her language preference), and several adults with disabilities also attended and shared their views and preferences about health care.
Unfortunately, physicians often hold a grim view of disability. In a survey of emergency medicine physicians, 40 percent said they would not want to be resuscitated if they experienced a severe spinal cord injury. A negative view of living with a disability, when coupled with the Golden Rule of putting oneself in another’s shoes, can misfire when it comes to working with disabled patients. When a physician devalues a patient’s quality of life, that can affect the treatments or interventions offered. A better approach in this case might be treating others as they want to be treated. And that takes listening curiously and meeting patients where they are.
In another study, only 41 percent of physicians feel confident that they give equal-quality care to disabled individuals, and only 57 percent welcome patients with disabilities to their practices. Physicians’ negative attitudes toward disability, combined with a lack of confidence in their skills, can lead to discrimination and disparities in care. CDC data reports that among people with disabilities, a third do not have a usual health care provider, and a quarter did not have a routine check-up in the past year.
UMass Chan Medical School has revised its curriculum to include the care of the diverse population in the community in a longitudinal way as part of broader diversity, equity, inclusion, and belonging work. The disabled population is considered a population with health inequities in this work. Today’s lecture was for second-year students in the interviewing course. Students learned about working with people with disabilities and then practiced new skills by interviewing people with disabilities. Part of the discussion presented preferred terminology when speaking about people with disabilities. Even among people with the same disability, there are varied preferences in language. For example, some prefer “person with a disability,” while others prefer “disabled” or “disabled person.” Learners were advised to ask the patient how they wanted to be addressed if that would be useful. Also taught was avoiding the use of non-preferred, even insulting, terms such as “handicapped” and “wheelchair-bound.” Not only were the students advised to simply ask about language preferences when applicable, but also to feel comfortable asking about other aspects of the person’s disability. Later, it was emphasized that a physician’s office or hospital is legally required to provide public accommodations, and that disabled patients need to receive the same quality care as everyone else. The learners were encouraged to consider how the disability affects the presenting medical issue or its treatment. At the same time, every medical concern should not be attributed to the disabling condition.
Working with both a patient and an accompanying person was discussed. Just like when using a language interpreter, the patient should be the focus of attention, not the companion. This is always true, even if the patient is non-verbal or intellectually disabled. Also, no assumptions should be made about an accompanying person – they could be a spouse, home health aide, or simply their driver.
Some more specific skills were introduced, such as tips for treating people with intellectual disabilities. It was advised to use simple sentences and questions while also not infantilizing the patient or using condescending speech. Frequent checks for understanding and repetition of key instructions are also useful.
Community members with physical or intellectual disabilities volunteered their time to act as patients in mock clinical interviews. For the second session, I participated as a patient being interviewed. Authenticity is important, and non-disabled standardized patients cannot, and should not, play the role of a person with a disability.
In the first small group I participated in, a student interviewed a middle-aged woman with an intellectual disability, who was accompanied by her father. After some initial formality, the learner and the volunteer quickly bonded over a shared love of theater. Both had even been in the same play previously. Both developed an understanding of each other, and the student gained confidence and skills in working with a disabled patient and a companion.
Currently practicing physicians can also access training about working with the population with disabilities at the CDC Disability ALLY page.
Heather Finlay-Morreale is a pediatrician and can be reached on Twitter @FinlayMorreale.
