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How some doctors discriminate against patients with disabilities

NPR's Mary Louise Kelly talks with professor of medicine at Harvard Lisa Iezzoni about a new study in the journal Health Affairs that finds some doctors don't want patients with disabilities.



Lisa Iezzoni uses a wheelchair to get around, which I mention because it is relevant to this next story about a new study that finds some doctors don't want patients with disabilities. In a series of anonymous interviews with 22 U.S. doctors, some admitted to refusing care to people with disabilities, making the excuse that they weren't taking on new patients. One specialist called them a disruption to the practice. Other physicians reported sending people in wheelchairs to supermarkets or zoos to take their weight, saying they lacked the right equipment in their offices. Well, these findings appear in the journal Health Affairs, and Lisa Iezzoni is the senior author. She's a doctor herself and a professor of medicine at Harvard. Dr. Iezzoni, welcome.

LISA IEZZONI: Thank you for having me.

KELLY: How did this study come about?

IEZZONI: I have been working on disparities in health care for people with disabilities for about 20 years, and had interviewed probably 300 people with different types of disabilities. And through all those interviews, I kept hearing complaints about doctors. You know, doctors don't understand their lives, don't understand their health problems, don't recommend services to them. And so I finally decided, after 20 years of talking to patients, it was time to talk to doctors. And, you know, since I'm on a Zoom screen, they couldn't see the fact that I was sitting in a wheelchair. And so I tried to kind of keep aspects of my identity free from them. And as they started saying some of the things that were a little bit troubling, I just said, that's interesting. Tell me more - and they did.

KELLY: And what what were they saying? Give me some examples of what you heard.

IEZZONI: Well, they were talking about how they found patients with disabilities to be entitled, to want accommodations that the physician didn't think that they needed, to come in with kind of an attitude, if you will. But also, physicians talked about the fact that they didn't feel equipped to be able to care for these patients who were coming in. It was - virtually universal statement that they didn't have, you know, the exam tables or the weight scales. And in one case, a rural physician said that the patients couldn't even get into the office because of barriers to accessing the office. So there were just a lot of concerning things about feeling unequipped in addition to not feeling they had enough time to do so.

KELLY: And before we get to what might be informing that, I just want to better understand. We've been talking about wheelchairs and people who have mobility issues getting into and out of an office. What other accessibility issues came up?

IEZZONI: Oh, my goodness. Communication was a really big thing. You know, doctors kind of said, well, if my patient is hard of hearing, I just talk to their companion. There was virtually no interest in doing something like hiring an American Sign Language interpreter if somebody was deaf and that was their preferred mode of communication. And so that was also true for people with intellectual disability that, although best practice is to speak directly to the person with intellectual disability, no, these doctors said that they would speak to the companion or the person accompanying the patient.

KELLY: As a doctor yourself, how surprising is this?

IEZZONI: It it is very concerning because the Americans with Disabilities Act passed in 1990. And so we've had literally decades to set up the system to be able to care equitably for people with disabilities, but it just still hasn't happened.

KELLY: Right. I mean, just to underscore what you're saying, physicians can't legally discriminate against people with disabilities because of the Americans with Disabilities Act.

IEZZONI: That's exactly right. They're supposed to provide equitable care to patients with disabilities. And they are supposed to provide reasonable accommodations.

KELLY: So how is this happening? How are these doctors getting away with turning patients away? Is it just not being reported?

IEZZONI: What happens happens behind closed doors. And the patient is lower in the power chain, you know. And they also need assistance from their doctor. They don't want their doctor to get angry at them. In addition, it's very, very hard to go up against a professional who will have an excuse. You know, as was described in our study, you know, the doctor might say, well, we don't take their insurance or another specialist might be better for the patient. It would be very, very hard for the patient to be able to argue against that kind of - what might sound like a reasonable statement by the doctor. Plus, it just takes energy for a patient to go find an attorney and say, you know, I'm going to bring a lawsuit.

KELLY: Well, I want to circle back to a number I cited at the beginning. This was a survey of 22 physicians - it was a small survey - a third of whom were rural doctors. More than half describe their practice as small. Maybe just one or two doctors. Does it make sense, does it make it somewhat more understandable that some of these small practices, rural doctors would have trouble accommodating people with disabilities?

IEZZONI: For small practices, for practices of one, two or three doctors, there are tax credits that would be available if they want to renovate their office or they want to get equipment that would allow them to be more accessible to people with disability. Another point that I would make about rural environments is that we know that rural populations tend to be older. And so these doctors are going to be seeing a population that has a higher rate of disability.

KELLY: So any strategies you would recommend to people with disabilities to help them advocate for their own care or even just to get an appointment?

IEZZONI: Yeah. Well, the first thing that I would say is that when you call to make the appointment, even though some practices that might scare them away from, you know, signing you up for the practice, you need to make very, very clear what it will be like to get into that facility. In other words, that you can, in fact, get in, and that there are accommodations that you will need so the practice can be ready and able to care for you when you show up.

Another thing is, obviously, we need education and training of physicians. There was one finding that really popped out at me as the most troubling, and that was that 82% of doctors think that people with disability have worse quality of life than other people. And so if doctors think people with disabilities have a worse quality of life, that might explain why patients tell me that their doctors don't bother to get them out of their wheelchair to do a pap test or recommend a mammogram because their doctors thought, you know, their quality of life wasn't worth (inaudible). And so I think that there still is a lot of work to do.

KELLY: That is Dr. Lisa Iezzoni, professor of medicine at Harvard. Dr. Iezzoni thank you.

IEZZONI: Well, thank you for having me.

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Gus Contreras
[Copyright 2024 NPR]
Christopher Intagliata is an editor at All Things Considered, where he writes news and edits interviews with politicians, musicians, restaurant owners, scientists and many of the other voices heard on the air.
Mary Louise Kelly is a co-host of All Things Considered, NPR's award-winning afternoon newsmagazine.