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Join Heather Finlay-Morreale, a pediatrician. We’ll delve into the uncomfortable reality of doctors’ attitudes towards disabled patients, drawing from her personal experiences and the broader efforts to create positive change in medical education and practice. Discover how collaboration among top institutions and the development of competencies are reshaping health care for the better.

Heather Finlay-Morreale is a pediatrician and can be reached on Twitter @FinlayMorreale.

She discusses the KevinMD article, “Empathetic patient care: Addressing disability in education.”

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Transcript

Kevin Pho: Hi, and welcome to the show. Subscribe at KevinMD.com/podcast, and get CME for this episode by clicking on the CME link in the show notes. Today we welcome back Heather Finlay-Morreale. She’s a pediatrician, and today we’re going to talk about why doctors are not comfortable with disabled patients. Heather, welcome back to the show.

Heather Finlay-Morreale: Hi, thanks for having me again.

Kevin Pho: Now, for those interested in hearing Heather’s story, just go to KevinMD.com/podcast. In the upper right corner there’s a search icon; search for Heather’s name to hear her prior episode and her story. But today I want to talk about your KevinMD article. You talk about how doctors in general are not comfortable with disabled patients. What kinds of studies have been done to show that, and what personal anecdotes can you share that really illustrate it?

Heather Finlay-Morreale: Yeah, so there’s data on things like healthy preventive behaviors, things like cancer screening, showing pretty big disparities for people with disabilities. And then there is a physician here in Boston, Lisa Iezzoni, who did a study that came out just this fall. She queried mostly primary care doctors about how comfortable they were with patients with disabilities, whether those patients were welcome in their offices, things like that, because she herself uses a wheelchair and had run into some experiences of her own, and I’ll talk about mine as well. She found that only about 40 percent of doctors were confident in their ability to give equal care to people with disabilities, and only 56 percent said they welcome disabled patients to their practices. So that means almost half are not welcoming patients with disabilities.

In the second part of her study, she did a focus group where physicians were interviewed. She was the interviewer, but her wheelchair was not visible on the camera, and they very candidly shared stories of steering patients with disabilities away from their offices. So those are pretty shocking findings if you really dig into it.

Kevin Pho: Let’s talk more about that focus group and study. By disabilities, what is the formal definition as it relates to that study?

Heather Finlay-Morreale: So there are different researchers. There’s one figure that’s commonly thrown around, which is that about a quarter of Americans have a disability, and that’s if you include things like diabetes and asthma, if you have a very inclusive definition. I think a lot of researchers use the CDC definition, which is also the ADA definition: if one or more of your major life activities is altered or impaired by a disability. It can include mental, physical and communication disabilities, a pretty wide variety.

Kevin Pho: So in that study, where Dr. Iezzoni was interviewing these primary care physicians and a good percentage of them said they were not comfortable with patients with disabilities, did you get a sense of what reasons they gave for that?

Heather Finlay-Morreale: I think one of the biggest was not feeling comfortable in their skills. Although a physician’s career is taking care of people who are sick, I think it’s more focused on the acute: They come in, they have a cold, they broke their arm, you give a treatment, they get better and they go away. Whereas with chronic illnesses and disabilities, people are not necessarily going to get better, and they’re going to have impairments that are permanent. And I don’t think there’s a lot covered in the curriculum, in medical training and even in residency, on how that changes things.

Kevin Pho: So in the primary care setting, what kinds of unique challenges should physicians be educated on when treating people with disabilities?

Heather Finlay-Morreale: I think the biggest thing applies to everybody. It’s sort of the universal design principle: If we make things accessible, it also improves care for everyone else. I think the biggest thing is not making assumptions, not assuming that the person who accompanies the patient to the office is a PCA or a home health aide. It could be their spouse. I find people sometimes assume, when I’m in a wheelchair, that my husband is my PCA, that I couldn’t possibly be married. I’ve had people at the medical school assume that I’m a patient and not a professor.

STD and STD-related cancer screening is really low among people with disabilities, partly because it’s sometimes physically challenging to do an exam if someone’s in a wheelchair. But people also assume that people with disabilities aren’t sexually active, which isn’t true, and that goes even for people with intellectual disabilities. So I think merely not making assumptions about the person in front of you opens the door to giving them better health care.

Kevin Pho: And you mentioned also that you have a personal story about your interactions with the health care system.

Heather Finlay-Morreale: Well, yeah. Some of it is running into those assumptions, having to correct people that my husband is my husband and not a PCA, and things like that. But I got really sick and was admitted for a central line-associated bloodstream infection. When I got discharged, I had some to-do items: follow-up blood cultures, getting a referral, things like that. And my PCP at the time sent me a quick, hastily written, poorly spelled portal message saying that I needed to find a new PCP, that she didn’t have the, quote, bandwidth to be my doctor, because I needed a PCP who specialized in sick patients. So I guess there are PCPs who are only for healthy patients, and I had unwittingly signed up for one.

Then I tried to find a new PCP within the same health system. I think offices opened up my chart and saw the problem list, or saw that I use a wheelchair, which is actually in the header in Epic sometimes, and their panels would be full, or they would say, “We don’t know enough about disabled people to be your primary care physician.” So I actually didn’t have one for about six months. I couldn’t get the follow-up that I needed, and the infection actually wasn’t cleared in the end. So it’s a little unclear whether, if I’d had follow-up, I would have had a much better outcome, but I essentially became untouchable.

Kevin Pho: So just to be clear, you got a message from your primary care physician’s office saying that they didn’t have the bandwidth for you?

Heather Finlay-Morreale: Exactly. That was the exact word, and that I had to find a new PCP. And I needed an order for a blood culture and a referral, and I didn’t get either, so I actually never followed up with infectious disease. I was in an HMO, where you need a PCP referral, no exceptions.

Kevin Pho: So when you read that for the first time, share with us what your first reaction was.

Heather Finlay-Morreale: I was shocked and a little panicked. I was still really sick. I was able to be discharged, which doesn’t mean I was well. I had a ton of stuff to do, and I felt really terrible. I just didn’t know how I could go about getting any of my discharge care. It’s almost impossible to find a PCP anyway, let alone when you need orders done within a week. So yeah, I was shocked and panicked.

I shouldn’t have been as surprised as I was, because previously, when I was working as a pediatrician and switched jobs, my patients needed a new PCP, so my nurse was calling around to local offices. One office that she called, one that’s very well regarded in the community, actually told her point-blank, “We will only accept your patients who don’t have disabilities. We will only take your healthy patients.” So it’s not even hidden that doctors are screening out disabled patients.

Kevin Pho: Would they ask up front about potential patients’ disabilities?

Heather Finlay-Morreale: Yeah, we were asking, “Can we give them your name?” And they actually said, “No, we will not take disabled patients.”

Kevin Pho: So in those six months when you were looking for a primary care clinician, approximately how many offices did you try calling?

Heather Finlay-Morreale: I tried, I think, five or six. I contacted my health insurer. I contacted the complex patient office of the health system, which is supposed to deal with this problem. They were too full, they were maxed out, they couldn’t help me at all. I just kept hitting wall after wall.

Kevin Pho: And when you eventually did find one, was it relatively close to where you were, or did you have to make a trek to see this clinic?

Heather Finlay-Morreale: I ended up kind of using physician privilege. There was a physician, a PCP, whom I had met because we were both at the same social function. He was an hour and a half away from my house, and he agreed to be my PCP. So I had a PCP an hour and a half away across Boston, which is not an easy drive.

Kevin Pho: So short of meeting someone at a social function, and your being a physician yourself, is this experience typical of the patient community with disabilities similar to yours?

Heather Finlay-Morreale: Yeah, yeah. There’s actually a slide I got from the CDC, and I believe it was almost a quarter of disabled patients who don’t have a regular source of health care. So it’s a population that for the most part has a really high health care need, but pretty low rates of having good primary care.

Kevin Pho: So I understand that you’re involved with some research and some programs that can help address this issue. Tell us more about that.

Heather Finlay-Morreale: Yeah, so I do a little bit of volunteer work with Dr. Linda Long-Bellil at UMass Med. She’s been teaching health care professionals about disability for about 20 years, and I’ve been assisting her in some of her efforts. One of the things is that we got a working group together to come up with some goals and objectives. And actually, next week at the medical school, all of the first-years, so it’s not an elective, it’s a standard part of the curriculum, are going to have some didactic content about people with disabilities, which is actually taught by people with disabilities. Then they’re going to have standardized patient sessions, and the standardized patients also have disabilities. So it’s a really comprehensive kind of dive.

The other effort is in their physical exam course. When they’re taught the extremity exam, they’re then taught how to do an extremity exam on a patient in a wheelchair, who may or may not have contractures. When they learn HEENT, they’re going to learn about patients with hearing aids, or patients who are deaf or hard of hearing. So UMass is integrating content about disability all along, not as extraneous, other material, but just as a different variety of normal, not a pathology. I think that’s great, and other schools in the state are doing the same thing in parallel: Harvard, Tufts, BU. It’s a change in teaching that’s going along with the broader focus on diversity, equity and belonging.

Kevin Pho: You mentioned earlier that one of the key things practitioners should not do is make assumptions. Can you give us a little more of a sneak peek of those didactics? What are some high-yield things that practicing clinicians can learn about treating their patients with disabilities?

Heather Finlay-Morreale: I would say just walk into the room with a clean slate. Don’t assume anything about the people in the room, their relationships, how well a patient may communicate or how well they understand you. And I would just ask questions. Don’t be afraid to ask a question. If someone’s in a wheelchair: Can you stand and walk a little bit? No one’s going to be offended by that. Would you prefer to get your post-discharge instructions written, or would you prefer that I give them verbally, and maybe you record a voice memo? I would just say make no assumptions, and then just ask. I think patients are perfectly willing to guide their caregivers in how to best meet their needs. They’re really the experts on that.

Kevin Pho: Other than making false assumptions, what are some other common red flags that you typically see in physician offices?

Heather Finlay-Morreale: The built environment is huge. I know some of the offices I’ve worked in have been very inaccessible to wheelchairs: To get in the front door, there are a few steps instead of a ramp. When I visit offices as a patient, a lot of times the automatic doors, if they have them, aren’t working. I would say very, very rarely is there an accessible bathroom at a lot of the health care facilities I go to. Exam tables are often quite high up and don’t lower, though there are some that do. And scales. So I would say the built environment is another huge barrier that can be improved upon.

Kevin Pho: We’re talking to Heather Finlay-Morreale. She is a pediatrician, and today we’re talking about how doctors are not comfortable with disabled patients and what we can do about it. Heather, for those clinicians interested in learning more about this, tell us some resources that you could share.

Heather Finlay-Morreale: I’d say look up the work of Lisa Iezzoni and some of her research into patients with disabilities. And then the New Hampshire and Massachusetts Departments of Public Health have a great video on dos and don’ts for interviewing and working with people with disabilities. I think that’s a great free resource, and it does have CME on it as well.

Kevin Pho: And my final question: Please tell us some of the take-home messages that you want to leave with the KevinMD audience.

Heather Finlay-Morreale: I think the biggest take-home message is to be welcoming of people with disabilities, to approach them with a clean slate and no assumptions, and to be eager to learn from them and ask questions based on their own lived experience.

Kevin Pho: Heather, thank you so much for sharing your story, time, and insight, and thanks again for coming back on the show.

Heather Finlay-Morreale: Thank you for having me.