Health Affairs This Week

Health Affairs Editor-in-Chief Alan Weil interviews Northwestern University's Tara Lagu on the paper she published in the October 2022 issue of Health Affairs examining physicians attitudes toward patients with disabilities.

Show Notes

Health Affairs This Week is on a break this week. Today, we are publishing an episode from A Health Podyssey, where Health Affairs Editor-in-Chief Alan Weil brings you in-depth conversations with leading researchers and influencers shaping the big ideas in health policy and the health care industry. Health Affairs This Week will return next week.

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Health Affairs Editor-in-Chief Alan Weil interviews Northwestern University's Tara Lagu on the paper she published in the October 2022 issue of Health Affairs examining physicians attitudes toward patients with disabilities.

Order the October 2022 issue of Health Affairs on disability and health.

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00;00;00;02 - 00;00;30;22
Alan Weil
Hello and welcome to A Health Podyssey. I'm your host, Alan Weil. About one in four adults in the United States has a disability. People with disabilities face persistent inequities in health status and in access to health care services. Despite laws such as the Americans with Disabilities Act that require equal access and reasonable accommodation, many people with disability face barriers to obtaining the care they need.

00;00;31;14 - 00;00;57;20
Alan Weil
How do physicians view their willingness and ability to care for people with disabilities? That is the topic of today's episode of A Health Podyssey. I'm here with Tara Lagu, Professor of medicine at Northwestern and University's Feinberg School of Medicine. Dr. Lagu, who in coauthors published a paper in the October 2022 issue of Health Affairs, examining physicians attitudes toward patients with disabilities.

00;00;58;06 - 00;01;27;04
Alan Weil
They found, through focus group style interviews that many physicians have negative attitudes toward people with disabilities, and many physicians feel unprepared to handle some of the challenges they face or expect to face meeting the needs of patients with disability. These findings have significant implications for efforts to close the gaps in health status between people with and without disabilities will discuss these attitudes and beliefs in today's episode.

00;01;27;14 - 00;01;29;08
Alan Weil
Dr. Lagu, welcome to the program.

00;01;30;03 - 00;01;32;04
Tara Lagu
Thank you so much, Alan. Happy to be here.

00;01;32;25 - 00;02;02;12
Alan Weil
I find this a fascinating and somewhat disturbing paper. Before we get into the findings, which we'll do very soon, I just want to make sure people understand how you collected the data. This is not sort of your multi-thousand person physician survey where people are checking boxes about what they will and won't do. You actually talk to people. Can you just say a little bit about what methods you use to collect the data that we're going to discuss in much more detail over the next few minutes?

00;02;02;24 - 00;02;28;19
Tara Lagu
Yeah, absolutely. So we did, we used qualitative methods, which is, you know, common actually in the marketing world, in the business world, when you really want to get the opinions of people who are living the experience you're talking about. You get six or eight of them into a room and you ask them questions about how it is to care for people with disabilities or, you know, pick out a cereal in the grocery store, depending on what your question is.

00;02;29;03 - 00;02;53;21
Tara Lagu
Ours was, do patients do physicians have difficulties when they're caring for people with disabilities? What are those difficulties? How does that impact their ability to serve people with disabilities? How does that impact their ability to provide high quality care for people with disabilities? And so to do that, to get those physicians, I will say we had some additional criteria that we wanted to meet.

00;02;53;29 - 00;03;26;15
Tara Lagu
We didn't just want any physicians and in several focus groups, we wanted a real mix of different kinds of physicians from different subspecialties. We wanted men and women. We wanted people of different races. We wanted people from both rural and urban areas. And we really wanted to focus more on community settings than academic settings. There have been studies in a lot of academic settings and our senior author, Dr. Lisa Iezzoni, has actually done a lot of work in academic settings, but there haven't been as many studies asking physicians who work in the community.

00;03;26;28 - 00;03;57;17
Tara Lagu
You know, how do you serve people with disabilities? What are the barriers? Tell us what you're experiencing. And so to identify those people, we actually used a very popular social networking site for physicians called Sermo. There are more than 800,000 physicians across specialties who use Sermo, and there are many opportunities within Sermo to participate in research. And so people who say who are physicians and were on the site who say they want to participate in research, are then can be invited to participate in studies.

00;03;58;00 - 00;04;20;18
Tara Lagu
And that's what we did. We asked her to recruit three focus groups of physicians from this variety of backgrounds. And we actually decided and it was it was a very careful decision that we were not going to identify the physicians who participated beyond their first name and being visible in what is a video conference, like a Zoom or another kind of video conference room.

00;04;21;04 - 00;04;44;24
Tara Lagu
And so this gave the people who participated the ability to be relatively anonymous. They could, you could see their faces. We knew their first names, but we didn't know who they were. We didn't have a lot of details on where they practiced. And as a result, I think we got some brutally honest answers from physicians about some of the challenges they face and some of their attitudes about people with disability.

00;04;45;06 - 00;04;55;03
Alan Weil
Well, we're going to dove into those brutally honest answers. But before you give us the detail, why don't you just say what was your main takeaway from the work that you did with these physicians?

00;04;55;23 - 00;05;24;29
Tara Lagu
Yeah, absolutely. So after speaking with doctors who practice in a variety of settings, mostly community settings, from a variety of subspecialties and a mix of races and ages and genders, we asked physicians about their attitudes towards people with disability, and overall, physicians reported that there are many barriers to caring for people with disability. Some expressed what we called explicit bias towards people with disability, and we can get into that a little more because I think that's a confusing term in some ways.

00;05;25;18 - 00;05;39;25
Tara Lagu
And then perhaps the most disturbing finding was that some physicians in a couple of different focus groups reported that they used specific strategies to attempt to get people with disability to leave their practices to deny care to people with disability.

00;05;40;24 - 00;06;03;02
Alan Weil
Well, that is quite concerning. We're going to go into more depth on all of these. As you noted at the outset, this is qualitative work and you're trying to draw out themes. These aren't necessarily representative of all physicians. They're just the themes of what you learned in these focus groups. In the paper, you identify six themes. I know, just sort of reading themes, isn't that interesting?

00;06;03;02 - 00;06;10;17
Alan Weil
But I think to introduce a subject, it would be helpful if you just said what were the thematic areas of your conclusions?

00;06;11;00 - 00;06;30;05
Tara Lagu
Absolutely. And some of these themes have come out in earlier research, and I should definitely reference that. Our senior author, Dr. Lisa Iezzoni, has really identified some of these themes before. As a group, we've actually done surveys and some of these themes have emerged from surveys as well. And I've also done and led research that identified that some of these issues exist.

00;06;30;05 - 00;06;50;28
Tara Lagu
So we sort of knew that these six themes were going to emerge. And we actually based our interview guide to really get at some of these questions, which is perhaps why some of the themes emerge the way they did. But to tell you about them. So physicians described physical barriers to providing care for people with disabilities so they can't weigh patients with disability if they use a wheelchair.

00;06;50;29 - 00;07;10;18
Tara Lagu
If they are in a wheelchair, they can't examine them. They can't sometimes get them into their building. There was one physician that said, our building is not accessible to wheelchairs and was very honest about it. We identified communication barriers so people who are deaf or hard of hearing, many of the physicians reported that they can't or won't hire sign language interpreters.

00;07;11;06 - 00;07;32;10
Tara Lagu
Almost none of the physicians asked about communication accommodations if they need them, you know, and many said that if the person had hearing difficulties, they would just talk to the caregiver as opposed to talking to the patient themselves, or would use sort of suboptimal strategies for communicating with the patient, like pen and paper as opposed to using, you know, assistive devices.

00;07;32;25 - 00;08;04;27
Tara Lagu
There were big knowledge gaps. So really physicians reported that they don't have the knowledge. They don't really understand what patients with disability need to receive high quality care and they don't really know how to provide it. And that was a very common theme. There's what I would call structural problems, and this encompasses a lot, but it's sort of that there are problems with the health care system generally, and that includes procedures, policies, the way we pay physicians that provide, you know, real obstruction to getting people with disability, good care.

00;08;05;16 - 00;08;29;09
Tara Lagu
There were attitudinal questions and attitudinal themes that emerged. So physicians reported that they felt that people with disabilities were entitled, that they sometimes asked for things they didn't need. And there were also real gaps around knowledge of the Americans with Disabilities Act. And this includes that physicians said they don't have any knowledge of the Americans with Disabilities Act.

00;08;29;09 - 00;08;35;23
Tara Lagu
They don't know what they're required to provide. And many said they don't seek out more information even when they don't know what to give.

00;08;36;09 - 00;09;00;10
Alan Weil
Well, those are really important themes and a broad range of topics that you covered. So we only have time probably to go into a few of them. I'll do that as we start our discussion here. But as we do, I guess I want to sort of ask you to help us understand the difference between what seem like, you know, reasonable, normal.

00;09;00;10 - 00;09;24;24
Alan Weil
This is my job is hard. These are the challenges they face. And people are being honest about that relative to things that sound like maybe excuses or barriers that they really should be expected to overcome. Because even in the six themes you just described, I can hear a combination of ah, that makes sense and eh, that sounds terrible. So let's take the fourth one you mentioned here.

00;09;24;24 - 00;09;38;05
Alan Weil
These so-called structural barriers just give me a little more detail about what physician said, what it tells you about their willingness to meet the needs of people disability and their ability to meet those needs.

00;09;38;20 - 00;10;00;00
Tara Lagu
Absolutely. So anybody who's been a patient in a doctor's office knows that it can be a very rushed process and in some some cases unpleasant for the patient. So you're expected to get pretty much all of that. You need to get out of that appointment and in 10 minutes or 15 minutes, tops. And that was one of the big pieces that came out of that structural barrier.

00;10;00;00 - 00;10;30;01
Tara Lagu
Physicians said, we have 15 minutes with patients if they need accommodations, if they need communication assistance, if they have to be transferred to a table, it's just impossible. And we find it a barrier to providing care that was very common. It came across in every focus group. And I think this is true. But this is also paired with another structural barrier around finances, which is that for some patients, when you need a longer time, you can just say you had a longer appointment in a more complex patient.

00;10;30;09 - 00;10;57;08
Tara Lagu
There isn't built into the payment structure a way to say I provided accommodations and therefore I should be paid a higher level of care. And so that's an additional structural barrier that is really intertwined with the first one about the limited time in appointments. Additionally, there were barriers around and it's hard to think about, but a lot of times when you walk into a doctor's office, the physician knows a lot about you before you come in.

00;10;57;08 - 00;11;18;28
Tara Lagu
They know all your past history. They know their medications, and they know that from the electronic health record. But it was pretty clear from these focus groups that there is very few places that capture in their electronic health record whether a person has a disability, whether they need accommodations, and as a result, the person shows up and it's chaos because we didn't know they were coming.

00;11;18;28 - 00;11;40;01
Tara Lagu
And I think that was another big theme. And again, it's intertwined with all the other ones. But they'll say, you know, I have no idea the patient's coming. I have no idea what their accommodation needs are. And on some level, you understand how that happens because it's not built into the system. On another level, we never learn. It's totally unacceptable that we do this to people with disability again and again and again.

00;11;40;14 - 00;11;58;19
Tara Lagu
So a person who uses a wheelchair and this is from examples from my own patients may call ahead, make sure the doctor's office has an adjustable table, will say, I'm coming, I need these accommodations. I need someone who's trained to help me transfer or I need a lift. They may talk to the office manager and half the time they show up.

00;11;59;00 - 00;12;13;24
Tara Lagu
And that is there's no preparation. The room's not available. The staff aren't there. And so I think that some of that is reasonable and some of that is how can we just keep making the same mistake over and over and over?

00;12;13;24 - 00;12;49;27
Alan Weil
I guess that is a bit of the theme of this work, is that the first time these problems emerge, it's kind of reasonable. But if there are systemic problems and no one's overcoming them, that really isn't reasonable. And it may not be reasonable to expect every individual physician or physician practice to solve every single problem. But it's also not realistic to say that the entire burden of solving these problems or experiencing the problems just falls to the patient who has nothing to bring to this role in terms of resources.

00;12;50;14 - 00;13;01;25
Alan Weil
In comparison, I shouldn't say they have nothing to bring. It's not fair to put the full burden on the patient who has a lot fewer resources to solve these problems than the physician does.

00;13;01;25 - 00;13;26;06
Tara Lagu
Well, that's right. And we're also talking about a huge power differential. So, I mean, if you've been in a gown and a doctor's office, you know what it feels like and how vulnerable you can be. So if you add to that that you have a spinal cord injury and you're afraid of being dropped when transferred, and the strategy for transferring you is to bring in the parking attendant or something, you can imagine how scary and vulnerable that it feels.

00;13;26;17 - 00;13;52;21
Tara Lagu
And I think we've gotten that from our prior work in focus groups with patients in in studies that we've done of doctors. We know that these things are happening. I think what was shocking was that when we got these groups of physicians into our video conference room, I didn't think they would be so honest about the failures that they have committed when trying to provide care for people with disability.

00;13;52;21 - 00;14;11;16
Tara Lagu
And yet they were very honest. And I think some of it stems from just the frustration of working in a broken system. And of course, the bigger implication here is that we know that there are problems in the health system. It's interesting how caring for people with disabilities becomes this model for all the things that are wrong with the system.

00;14;11;16 - 00;14;33;24
Tara Lagu
But I think additionally there was a powerlessness on the part of the physicians. That was surprising to me that it was this is how it is. I can't change it. And, you know, I'm powerless to do something different. And that was disheartening to me. And I really I think it's a product of a lot of different things which we can talk about.

00;14;33;24 - 00;14;39;28
Tara Lagu
But it really feels to me like as physicians, we should do better.

00;14;40;02 - 00;15;14;00
Alan Weil
Well, we're going to talk about some of the things that could be done better and a few more of the themes you identified. We'll have that conversation after we take a short break. And we're back, I'm speaking with Dr. Tara Lagu about physicians attitudes about caring for people with disabilities. Before the break, we spoke of one of the themes that her work identified having to do with structural barriers.

00;15;14;00 - 00;15;37;28
Alan Weil
But now we're going to talk about another one. I'd like to ask you about attitudes. And you did mention at the beginning of our conversation that you use this term in the paper about explicit bias and that that probably needs a little explanation. So tell me what you heard about attitudes and what that makes you or what conclusions you draw from that with respect to physicians caring for people with disability?

00;15;38;17 - 00;16;06;12
Tara Lagu
Absolutely. You know, we've become increasingly familiar with the term implicit bias. And if you've read, you know, the papers in the last couple of years that we have kind of baked in as a result of our culture biases against different groups of people. And you don't always express it when asked. But if you're given a test, sometimes it will reveal that you have preferences for different kinds of people.

00;16;06;12 - 00;16;51;04
Tara Lagu
So I sort of expected that there would be some of this implicit bias towards people with disability. What I didn't expect was that physicians flat out said things like people with disabilities are entitled. People with disabilities ask for too much. I can't serve this population, they just want too much from me. And so, you know, and this led to another theme in this attitude section, which is that in a couple of the focus groups, those discussions about attitudes, what we called explicit bias, this sort of demonstration of real sort of negative attitudes about people with disability devolved into a discussion of how they discharge people with disabilities from their practice.

00;16;51;20 - 00;17;17;21
Tara Lagu
But even before I get to that, I guess I'll say again, I was just surprised that people didn't have an internal check on saying negative things about a group of people. You know, one of the reasons we do the implicit bias test when we're thinking about if there are racial preferences, for example, is that we think that people will not express their negative attitudes about groups of people in focus groups.

00;17;17;21 - 00;17;39;11
Tara Lagu
But in this case, the people in the focus groups had no problem saying, I don't like this population, I don't like to care for this population. I think they're entitled. And we were just floored. And the only thing I can say is that there is something different about people with disabilities, than there is about other minority groups.

00;17;39;11 - 00;17;44;03
Tara Lagu
And I think some of our next work is going to have to be figuring out what that's all about.

00;17;44;12 - 00;18;13;05
Alan Weil
Well, it also sounds like they were sort of trying to justify or rationalize their behavior, which they felt was defensible. It's sort of it's not so much that I don't want to. It's that I can't. And I need to explain why I can't. And then if you understand why I can't, that you'll be okay with that, which is something you would never hear said about other groups, that they might at least in this day and age, you wouldn't hear people say that.

00;18;13;05 - 00;18;20;28
Alan Weil
I'm not trying to make excuses. I'm just trying to understand, as you say, the willingness to be so explicit about the the bias here.

00;18;21;12 - 00;18;42;10
Tara Lagu
Well, and, you know, and it went beyond that because it was first it was saying negative things about the population. And we were all very surprised at that. And then within a couple of the focus groups without the moderator really necessarily intervening much that the participants started talking to one another about their strategies for discharging people from their practice.

00;18;42;10 - 00;19;01;05
Tara Lagu
And so it became this conversation where one says, well, no, because of all these problems, because of this population and being difficult, I now just I've thought about this and I just say if a person with disabilities tries to come to my practice, I just say, I don't take your insurance. And another one says like, oh, no, no, you can't refuse them outright.

00;19;01;05 - 00;19;29;09
Tara Lagu
That puts you at risk for lawsuits. What actually I say is that you don't need this care that you're seeking out. And then another person said something like, you know, I no, no, no. I just say, I can't provide the specialized care you need. You need to be cared for in another facility. And so it became this really surprising conversation between doctors about how they plan to get rid of people with disabilities from their practice.

00;19;29;09 - 00;19;55;10
Tara Lagu
And again, it's indefensible. It's people. But I think when I think about the context, it's people who have previously in the hour or 2 hours said the system is so difficult to navigate. I'm overwhelmed by seeing people every 15 minutes. I don't know how to provide care for these people. And I feel like there's there's some something about this population which is different and difficult.

00;19;56;04 - 00;20;17;04
Tara Lagu
But so then you have people who are in what I would say, okay, those people are in a terrible situation. But in the setting of a terrible situation, you have kind of a right decision and a wrong decision. And there was a group of people who definitely made a wrong decision. They said, okay, I can't do this, so I'm just going to discharge patients with disabilities from my practice.

00;20;17;17 - 00;20;47;29
Tara Lagu
There were others in another focus group who said, I can't. Even as hard as it is, I can't think of a rationale for doing that or behaving that way. And it was really interesting the differences in the focus groups and how the participants sort of differed on that. But the fact that anyone would say that out loud as a physician who, you know, under the Americans with Disabilities Act is required to provide care, it was surprising, it was disheartening.

00;20;47;29 - 00;21;00;09
Tara Lagu
And honestly, like I feel somewhat discouraged about the culture of medicine generally and some of the choices that participants in the study made.

00;21;00;29 - 00;21;19;12
Alan Weil
Well, you just alluded to the ADA, and of course, we've published quantitative research indicating very low levels of understanding of the provisions of the ADA among physicians. But I wonder if you could say a little about the themes that came out in these discussions as they relate to knowledge of the ADA.

00;21;20;03 - 00;21;45;15
Tara Lagu
Right? No, absolutely. There was, this is a very important part of this. And I mean, just as a little bit of background, the Americans with Disabilities Act and the Rehabilitation Act for it are considered civil rights legislation. So it's a little bit complicated because physicians fall under this public accommodations lens part of it. And so physicians do have the right to make discretionary choices about who their patients are and what care they provide.

00;21;46;03 - 00;22;19;11
Tara Lagu
They just can't make discriminatory discretionary choices. And so what it seems like and I don't know for sure because I don't know the whole situation, but what it seemed like some of the physicians in our study were describing was discriminatory discretionary decisions about who to provide care for. And so it becomes tricky, right? Because for that person to bring a lawsuit, they have to prove that the physician made a discriminatory choice.

00;22;19;11 - 00;22;57;11
Tara Lagu
And it's very hard to know that because any one of us could call physician and say, can I see you? And they could say, I'm not taking new patients, or I don't take your insurance. And we would have no context to know whether that was true or not. And this is why this study is in some ways even more frustrating for me, because it means that we have this law that exists to protect people with disabilities, a vulnerable population that we know experiences poor care, and we can't enforce it because it relies on lawsuits that it's very hard to prove that were not about the physician's discretion.

00;22;57;23 - 00;23;17;04
Tara Lagu
And I think this is where lawyers can talk about this more. But it seems to me that there's a lot of places that we have to make changes so that this happens less. And I think that is about we have to change the culture of medicine. We have to educate physicians about how to care for people with disabilities.

00;23;17;13 - 00;23;41;21
Tara Lagu
We have to teach physicians about their responsibilities under the ADA. And I think in addition, we have to do all the pieces with practicing physicians around making accommodations available, getting information to the electronic health record, collecting information on people with disability, changing payment structures so that we actually reimburse when physicians spend more time taking care of people with disabilities.

00;23;42;05 - 00;23;58;01
Tara Lagu
And I think all of these pieces are critical. But at the end of the day, the fact that most of the physicians in our study said that they don't have any knowledge of the ADA sets us way back in terms of being able to make any strides in this area.

00;23;59;04 - 00;24;25;10
Alan Weil
Well, those last comments really lead to the thoughts and questions I have as our conversation comes to an end, because you've painted a pretty stark picture here, maybe a dark picture, some might say, well, you know, you only talked to a few dozen people and this isn't that prevalent. I think that would be a lot of denial, but I'm sure some will have that response.

00;24;25;10 - 00;24;54;14
Alan Weil
You indicate the limits of legal provisions, and I think that's appropriate. All civil rights laws are faced challenges we're in a world where people exercise discretion all the time in proving that someone did something that violates those laws is often very difficult. You listed of really nice collection of policy interventions around payment in education and resources, but I don't see anyone stepping up and actually making those happen.

00;24;55;06 - 00;25;12;24
Alan Weil
And the question is what priority would the health system place on putting all of those provisions in place for people with disability relative to all of the other places they could put their resources? And if you have the answer to that question, I'd love to hear it, but I don't know that you do.

00;25;13;05 - 00;25;36;17
Tara Lagu
Well, I mean, I think we have an aging population, right? There are 60 million people with a disability. 18% of middle age adults have mobility impairment, 30% of older adults have mobility impairment. We have similar large numbers around people with communication disabilities. A huge percentage of older adults are hard of hearing. So these problems are only getting bigger.

00;25;36;17 - 00;25;56;19
Tara Lagu
And one of the things I always say when asked about this is the thing about disability is if even if it doesn't affect you today, it could affect you tomorrow. And so we should all have a motivation to correct these problems because at any point we could have a spinal cord injury, we could suffer from osteoarthritis. I mean, it doesn't take much.

00;25;57;03 - 00;26;30;01
Tara Lagu
And so I think there is there needs to be a motivation in part because it is a problem that affects all of us. I think there's an additional motivation and it's affecting a larger percentage of the population. And in a way, the reason we do this research is to raise awareness about the need for these kinds of policy interventions, and I will continue doing this work, as depressing as it is, because I'm hoping that eventually someone will listen, that we will think about some of these policy fixes, changes to medical education, changes to residency training.

00;26;30;08 - 00;26;50;27
Tara Lagu
There's so many potential opportunities. And I, I really will continue to advocate for people in the medical establishment and the policy establishment, people who run health systems to take this seriously. It's not just because we're at risk for lawsuits, and it's not just because it's the right thing to do. It's some combination of it's the right thing to do.

00;26;50;27 - 00;26;56;27
Tara Lagu
We're at risk for lawsuits. It's more and more people. And tomorrow it could be you that we should take this seriously.

00;26;57;14 - 00;27;23;01
Alan Weil
Well, that's how I knew. I couldn't come up with a good question to follow up on that. So I'm going to say you've you've laid out the situation beautifully. You've shown the importance of this kind of work in framing the problem, in enabling us to come up with some ideas for solutions. And unfortunately, the hard work continues of actually getting those solutions implemented.

00;27;23;01 - 00;27;37;01
Alan Weil
But I really appreciate the attention you've paid to this issue, the methods you brought to it that enable you to tell stories and have a perspective on the data that we just wouldn't have any other way. And thank you so much for being my guest on A Health Podyssey.

00;27;37;18 - 00;27;56;28
Tara Lagu
Thank you so much. I mean, I think I owe you all a huge thank you for taking this issue seriously, for having a special issue devoted to disability. I think this is the kind of attention that this population deserves because I think they've been getting poor care for far too long. So thank you so much for your commitment to this issue.

00;28;00;11 - 00;28;13;20
Alan Weil
And thanks for listening. If you enjoyed today's episode, I hope you'll tell a friend about A Health Podyssey.