Medicine Is Failing Disabled Patients. Meet The Doctors Pushing For Change

IRA FLATOW: This is Science Friday. I’m Ira Flatow. More than 61 million Americans have disabilities, and increasing evidence documents that they experience health care disparities. That’s the conclusion of a series of studies in which researchers pulled back the curtain on how doctors perceive disabled patients.

Now, one study reported that more than half of surveyed doctors do not feel fully confident that they can provide disabled and nondisabled patients the same level of care. And in another study, some doctors went as far as to say that if you’ve got a disability, quote, “I’m not the doctor for you.”

But my next two guests are committed to changing that. Dr. Lisa Iezzoni is an author on those studies and a professor of Medicine at Harvard Med School based at the Health Policy Research Center at Mass General in Boston, as well as Dr. Feranmi Okanlami, who also goes by Dr. O, physician and assistant professor at the University of Michigan Medical School based in Ann Arbor.

Both of you, welcome to Science Friday.

LISA IEZZONI: Thank you for having us.

FERANMI OKANLAMI: Indeed. Thank you, Ira.

IRA FLATOW: Dr. Iezzoni, let’s start with you. Why did you start studying physicians?

LISA IEZZONI: I had been doing work on health care disparities for people with disabilities for about 25 years. I have interviewed, over that time, probably about 300 people with different disabilities. And I’d heard from them repeatedly, my doctor doesn’t really know much about my disability or my doctor makes erroneous assumptions about me or my doctor doesn’t accommodate me when I come to visit them.

So I finally decided it was time to talk to doctors. And so back in 2018, I was privileged to moderate three focus groups of 22 physicians from around the country that we did specifically to inform development of the survey that we administered a couple of years later.

IRA FLATOW: And so tell us, what did the participants tell you?

LISA IEZZONI: Well, I have learned over time to keep my facial expression extremely neutral. They said things like they thought people with disabilities were too entitled, that they had bad attitudes, that they asked for too much. They also indicated that their practices were often not equipped to care for people with disabilities, that it took too much time to care for people with disabilities.

Oftentimes, they found it just easier to talk to the, quote unquote, “companion” of the person with a disability rather than talk directly to the person with a disability. And then finally, some of the physicians actually said that they figured out ways to disenroll people with disabilities from their practice or not to enroll them at all to begin with.

IRA FLATOW: Wow. Do you think they would not have been as frank about telling you these things if they realized that you are also a wheelchair user?

LISA IEZZONI: That fact was hidden from them, not so much intentionally. It’s just that is the case when you sit in front of a video screen. And I did not reveal to the participants that I myself have a disability.

IRA FLATOW: And Dr. O, what was your reaction to these studies?

FERANMI OKANLAMI: Unfortunately, I’m not surprised because as a wheelchair user as well, I actually have been in a position where people have told me to my face that, with all due respect, Dr. O, I know you have a son, and I’m sure you’d want a physician that was the best physician possible.

And the phrase that someone used was I have a hard time seeing how someone who can barely take care of themselves will be able to take care of my patient or my son. And that’s why I’m so happy and fortunate for the work that Dr. Iezzoni and colleagues have done because it’s now demonstrating what many of us have been experiencing in real life and bringing it to the academic world to then show that this is a real thing that we’re not making up.

IRA FLATOW: How do you react to that when somebody says something like that?

FERANMI OKANLAMI: I think it all depends on the mood I’m in that day. Some days, I have a little bit more grace, and I recognize that it’s likely coming from a position of fear, that the individual is in concern in that way. But other times, I take it a bit more personally and attempt to demonstrate to this person that disability does not mean inability and the assumptions that they make that just because someone cannot do something, like walk or see or hear, does not mean that they’re not going to be able to be the most excellent physician that takes care of them. And that’s part of the stigma that exists that we’re trying to dismantle is that people believe that disability, by definition, means that someone cannot do one or many or any things, and that’s quite unfortunate.

IRA FLATOW: Dr. Iezzoni, part of the problem is physical accessibility, like having ramps and scales big enough for wheelchairs? What did the doctors say to you about that?

LISA IEZZONI: Our survey was a nationwide survey, and we found that only 22% of physicians usually or always use wheelchair accessible weight scales for their patients who are wheelchair users. Instead, they typically ask the wheelchair user their weight. There actually is research that shows that people who are wheelchair users tend to underestimate their weight. And especially if weight is necessary for monitoring chronic conditions or doing something like setting a chemotherapy amount, this is really critical information to have accurately assessed.

And only about 40% of doctors use adjustable exam tables, that is, exam tables that automatically lower to be able to facilitate a transfer for somebody with a disability. In fact, only about a third of primary care doctors have height-adjustable exam tables. And oftentimes, if they have somebody who they do not feel that they’re going to transfer them on to an exam table, they simply examine them in the wheelchair.

And obviously, let me just suggest to you that doing a pap test in a wheelchair isn’t actually possible. So one of the things that I’ve found from many, many years, again, of interviewing patients was that, especially as your mobility disability increases, your likelihood of getting a pap test, for example, decreases.

IRA FLATOW: I can imagine if someone tries to visit an office and they can’t get the services that they expect, it’s got to be pretty discouraging.

LISA IEZZONI: Yes. Well, it’s not just discouraging. It’s bad quality of care, and it leads to risk of disease not being diagnosed until later stages, which could put people’s lives at risk.

IRA FLATOW: Dr. O, so the physical barriers, they can be changed pretty easily, I imagine. But something is much more deeply rooted in how physicians see disability as something to be cured, right?

FERANMI OKANLAMI: Right. And this is something that it’s a difficult balance to then achieve, actually, because as any budding medical student thinks disability is a pathology, is the way that the medical model of disability describes this. And so most people would think that I’m supposed to go into medicine to cure the world of illness to then make sure that we eradicate these things that we see as sort of a scourge on society.

But the social model of disability is one that then acknowledges that this is disability as an identity or as culture and that needs to acknowledge that it’s oftentimes the environment in which we are in that creates the disabling environment. And the individual should not be seen as broken or wrong or bad and needing to be fixed, but looking at what is it that puts a barrier in their way that makes it such that they lack access to be able to demonstrate their ability to achieve success.

IRA FLATOW: Dr. Iezzoni, that surely affects how a person is treated.

LISA IEZZONI: Absolutely. And one of the most troubling findings from our survey for me was that 82% of physicians feel that people with significant disability have worse quality of life than other people. And we were getting these findings back from our survey scientists just as the COVID pandemic was really hitting a peak, back when there was concern about ventilator scarcity, back when there was concern about ICU bed scarcity.

And frankly, the disability community was terrified that they were going to be denied services if they got COVID because doctors felt that they had worse quality of life than other people do. And in fact, there were crisis standards of care around the country that indicated, specifically, that people with certain types of disabilities should go to the back of the line if there was a shortage of medical facilities.

IRA FLATOW: I imagine that those same issues that keep patients from getting care also keep disabled physicians from doing their job.

FERANMI OKANLAMI: Oh, absolutely. So as a wheelchair user myself, if I’m going to be seeing patients with or without disabilities, I also need physical access myself. Not only do we pathologize disability, but because we pathologize disability, we create this notion that physicians cannot be disabled themselves, and therefore we lack accessibility from the clinician side even more.

So I think it just goes back to the way that our society views disability such that we don’t expect much of individuals with disabilities, and therefore we have not created spaces with or for disabled people in mind. And medicine is probably one of the most guilty professions in that way.

LISA IEZZONI: And having height-adjustable exam tables, some doctors are taller than other doctors, and it allows the doctor to set the table at an ergonomically comfortable level for them to do the best physical exam, but it also reduces the risk of practice assistants from injuries while helping to transfer patients. We know from the Occupational Safety and Health Administration that practice assistants have one of the highest rate of workplace injuries. And not having accessible equipment really makes the likelihood of getting those kind of injuries even higher.

IRA FLATOW: Dr. Iezzoni, I read in your studies that some physicians will go as far as trying to get disabled patients to leave their practice.

LISA IEZZONI: Oh, yes. [LAUGHS] Well, that’s from the focus groups, yeah. They figured out little interesting ways of doing that, such as saying, oh, you know, I think you really need a specialist, or I think that it would be better if you got seen at a bigger facility. So physicians have figured out ways to try to winkle out of caring for patients with disabilities.

IRA FLATOW: There’s some pretty blatant discrimination by telling a patient to go someplace else. I mean, shouldn’t the Americans with Disabilities Act protect against that?

FERANMI OKANLAMI: Well, while this is 32 years since the institution of the ADA, unfortunately, it’s one of these things that is not always implemented in the ways that you want. And one of the reasons I feel that we see these things is these physicians weren’t trained to actually take care of patients with disabilities. As surprising as that may sound, the reason that they probably are discouraging patients from coming to their practice or encouraging them to go see specialists when it’s not necessary is because they themselves are not comfortable taking care of patients with disabilities. So even much further downstream, they need to do a much better job of making sure that disability education is embedded in the curriculum from premedical to medical curriculum.

IRA FLATOW: Dr. Iezzoni, I know you have research into how physicians feel about the ADA. What did they say?

LISA IEZZONI: Some physicians in the focus group actually said that the ADA harms patients with disabilities because it makes doctors unwilling to care for them. And in fact, our survey found that 68% of physicians fear that they are at risk of an Americans with Disabilities Act lawsuit. And so they’re afraid that a patient with a disability is a lawsuit coming towards them.

However, that should not be the case if, in fact, they make appropriate accommodations for people with disabilities. It’s doctors and patients talking together, the doctor saying what would work best for you, and then the patient hearing from the doctor what they can offer. And it’s kind of a collaborative decision.

IRA FLATOW: You’re listening to Science Friday from WNYC Studios. Dr. Okanlami, OK, we’ve talked about the problems here. I wonder if we might get into some of the solutions. What does an inclusive medical system look like to you? And how do we get there?

FERANMI OKANLAMI: Well, piggybacking off of what Dr. Iezzoni just said, I think people fear disability conversations because they just don’t know how to accommodate. She just clearly stated that the way that you figure out what access someone needs is just by asking them. And so an accessible and inclusive health care system is one that recognizes that everyone will have different needs for access.

And there are certain things that we can institute and implement ahead of time to then create broader need at sort of the curb cut effect, as we talk about, that something that benefits one small group actually benefits more people. The curb cut to then make access for someone to then get on to the sidewalk as a wheelchair user also benefits someone pushing a stroller, also benefits a mail delivery person.

And so some of the ways that we can create access within the health care system will benefit more people but will also directly create access for individuals with disabilities. But I think it starts with cultural humility to recognize that we may not know everything and that there is something that we can learn from the disability community as to how to then make things more accessible. And we should make sure that, at the very least, our health care system is recognizing that importance in doing so.

IRA FLATOW: Are med students, though, new doctors being steeped in this new idea, this new kind of culture you’re talking about?

FERANMI OKANLAMI: I would say that the new students are much more aware of the need for access and inclusion, but they are entering medical schools that are not yet prepared to be able to then equip them with the things that they are yearning for. Ableism is the fact that the world, as I said earlier, was not built and created for people with disabilities in mind.

And that is something that the generation coming up right now recognizes is not the case. And I think that COVID is also sort of bringing this to the forefront more with individuals identifying as having disabilities after COVID. And so I think it’s opening up the conversation for people being more comfortable disclosing disability and speaking up and asking for the reasonable and appropriate accommodations that they deserve.

IRA FLATOW: Are you saying that COVID has sort of taken the Band-Aid off of this wound?

FERANMI OKANLAMI: Yes, I would say that COVID has just exacerbated already problematic structures that existed prior to the pandemic. What we were doing during that COVID era was we drastically shifted the way we did things, and it unintentionally created more access for the disability community in a way that it didn’t have before.

And so certain things like virtual care or even just virtual meetings, things that a lot of disabled individuals were asking for before to then provide them with access, we quickly pivoted and provided it for everyone by necessity. We need to hold on to some of the things and some of the innovations and creativity and access that we provided during COVID to then demonstrate how that’s going to provide more people with the ability to demonstrate what it is they can do instead of being limited by what people think they cannot.

It’s unfortunate that it was not done when the disability community was speaking for it and asking for it. But for whatever reason, now that people see the need to provide access in different ways, I think we will see more and more people that are recognizing the importance of creating access for the disability community. And you’re certainly seeing more people within the disability community being able to be recognized for the work that they have been doing, like Dr. Iezzoni and all of her work for years. Finally now, people are starting to reference those things and putting things in place to hopefully make this sustainable.

IRA FLATOW: Dr. Iezzoni, I would imagine that there’s an irony here about accepting people with disabilities because so many baby boomers, so many people are getting older, and we’re all going to be disabled in some way, right?

LISA IEZZONI: Well, one of the things that I like to do is quote the World Health Organization, which says that disability is just part of the normal human experience. At some point, everybody, with some modest exceptions, will experience some type of disability, whether it be aging-related hearing loss or mobility difficulties. This just needs to be recognized as not something that’s abnormal or something to kind of stigmatize, but just something to accept and understand and accommodate.

IRA FLATOW: Well, those are great words to end our conversation because we have run out of time. I want to thank both of you for taking time to join me today. Dr. Lisa Iezzoni, professor of Medicine at Harvard Med School based at the Health Policy Research Center at Mass General in Boston, and Dr. Feranmi Okanlami, a physician and assistant professor at the University of Michigan Medical School. Of course, that is in Ann Arbor. Again, thank you both for taking time to be with us today.

LISA IEZZONI: Thank you for having us.

FERANMI OKANLAMI: Thank you so much, Ira.

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