Doctors, Disabled Patients and Ableism

Joeita Gupta:
The following episodes contain references to medical ableism. Listener and viewer discretion is advised.

Carol Haywood:
The other piece in terms of really not knowing the role that they themselves play in providing care was that several of the physicians talked about the American With Disabilities Act as something that actually further added tension to the relationship for working with people with disabilities. So some of them talked about the legislation as being very adversarial and were really worried about things like lawsuits. One of the participants said that they felt like a city duck for lawsuits.

Joeita Gupta:
I'm Joeita Gupta, and this is The Pulse. Over the last two-plus years of the pandemic, we've heard a lot about the healthcare system and crisis. Long wait times for patients and postponement of critical procedures, including surgeries. Of course, if you are a person with a disability, none of this is all that surprising. Well before the pandemic became our reality, people with disabilities were struggling to access adequate and appropriate primary care. Many physicians would tell you that it's not that they don't want to see people with disabilities, but they just find it far too challenging. Accommodations are perceived as being far too expensive or many doctors' offices just don't have the right equipment. And let's be fair, doctors don't set out to discriminate against anybody, but there is a growing body of evidence that suggests that medical ableism is a reality. Today we discuss disability and medicine. It's time to put your finger on the pulse.
Hello, and welcome to the Pulse on AMI Audio. I'm Joeita Gupta, and I'm joining you as I do every week from the accessible media studios in downtown Toronto. We are located on Treaty 13 land and subject to the dish with one spoon, WMP and Bell Treaty. I am wearing what I am told is a light gray cardigan according to my husband and an off-white cardigan streak through with gray, according to Matt, my videographer. So I'll leave it to you to decide on the colour of my cardigan, but that's not really what we're here to discuss today. Carol Haywood is a researcher at Northwestern University and the co-author of a paper that recently appeared in the Journal Health Affairs. The article is called I'm Not The Doctor For You: Physician Attitudes About Caring for Patients With Disabilities. Carol joins us today to discuss the article. Carol, hello and welcome to The Pulse. It's great to have you with us.

Carol Haywood:
Thank you for having me.

Joeita Gupta:
Carol, what got you interested in examining physician attitudes towards patients with disabilities?

Carol Haywood:
So this is something I've been thinking about for a long time in a lot of different capacities. I am an occupational therapist and worked in a rehabilitation setting for several years, and in that work really helped people understand how to navigate the world with a disability. Oftentimes, many of these people were experiencing disability for the first time and were transitioning from a hospital setting back to a community that was familiar with needs that were different. And so a lot of my role as an occupational therapist was helping them understand how to adjust their setting and to advocate for themselves and really navigate in their day-to-day lives in a way that helped them do the things that they wanted to do and that they found meaningful in their lives. And this work that I was doing and as an occupational therapist really led me to be more curious about what was happening beyond formal healthcare settings, beyond hospital walls and healthcare, what we formally think of as healthcare.
And so after several years of practice, I transitioned to full-time research and have been looking more at the lived experiences of people with disabilities in their day-to-day lives. And through that research I heard again and again about the challenges of getting the healthcare that people wanted and needed in their lives. And so that naturally shifted me to look more at this issue and think more about this issue. And in the course of my research have come to collaborate with Dr. Lisa [inaudible 00:04:42] and Tara Lagu through who have been focusing on access to care and quality of care for people with disabilities for years in their work. And they're really leaders in the field in this area. And so as we understood some of the challenges and barriers to care for people with disabilities, one of the things that comes up, again and again, is actually what is the physician role, and how are physicians navigating challenges of providing care?
And so we had done some work to really think about some of the system issues and some of the larger challenges and experiences for people with disabilities, but wanted to focus in this research very specifically on what are the physician attitudes relating to care for people with disabilities and how could those be playing a role in some of the disparities that we see in the access and quality to care.

Joeita Gupta:
I know, Carol, that you had a number of focus groups in 2018. Can you tell us a little bit about how many physicians you spoke to as part of the process and what kinds of experience were represented in the focus groups? I know you had rural and urban physicians, but what else was represented on the focus groups?

Carol Haywood:
Yeah, so we ran a total of three focus groups, each one had seven or eight participants, so we had 22 participants in total in this research. And this was really to help us first understand the landscape or what generate some hypotheses about how physicians were approaching care for people with disabilities. And so these three focus groups helped us really do that. And in doing so, we wanted to talk with people who were practicing in rural settings and in urban settings as you mentioned, and also in primary care and specialty care. And so we made sure to sample from across those different areas in addition to sampling across racial and ethnic groups and genders for the physicians in these groups. But I will mention that we recruited through Sermo, which is a popular social network for physicians. And we really intentionally wanted to create a space where physicians could participate anonymously so they could really speak freely and feel open to share their perspectives within these focus groups.
So we actually knew very little about the physicians who participated beyond the geographic region that they represented and knowing that they were actively participating. So we knew their age and kind of amount of time that they had been practicing and where they were practicing, but we did not collect specific information about, we don't know their names, we didn't get kind of personal identifiable factors about each of the participants. And we did that on purpose to create this space for conversation in the focus groups.

Joeita Gupta:
So what did you find to be the prevailing or predominant attitudes towards patients with disabilities after you spoke to some 22 physicians as part of your focus groups?

Carol Haywood:
It's really what we're hearing from these physicians again and again across the three focus groups was in some ways a reflection of the bias that exists in broader society, which is that disability is bad, it's something to be avoided. But what we are hearing specifically from these physicians is that they felt that these people with disabilities had excessive needs. And some of them talked about people with disabilities as being an entitled population or creating more complicated scenarios for care and really being a burden on their clinics and their systems of care. And those attitudes came up across the groups and across practice settings.

Joeita Gupta:
It's worth mentioning at this stage, Carol, that the research you conducted in 2018 was conducted in the United States. And so I really feel like I need to ask you about the Americans with Disabilities Act that has been in effect now for decades. What impact, if any, would you say the ADA has on the treatment of patients with disabilities by their physicians?

Carol Haywood:
Yeah. I'm really interested to talk with you more about this because here in the United States we have this huge piece of civil rights legislation, the Americans with Disabilities Act, it passed in 1990, so it's now existed for more than 30 years in the United States. And some of these protections that are part of the American With Disabilities Act to ensure access to care for people with disabilities, they were strengthened through the Affordable Care Act in 2008. So we have a lot of legislation here in the United States to protect care for people with disabilities or protect access to care, I should say. And theoretically, this is a great idea and this is really, really important legislation. What we see in practice is that it's really difficult to enforce, and many people ignore the legislation entirely. So we heard in these focus groups, many of the physicians actually knew very little about the Americans with Disabilities Act, and they specifically knew very little about their own responsibilities for providing care for people with disabilities and what that might mean in terms of their responsibilities under this legislation.
The other piece in terms of really not knowing the role that they themselves play in providing care was that several of the physicians talked about the Americans with Disabilities Act as something that actually further added tension to the relationship for working with people with disabilities. So some of them talked about the legislation as being very adversarial and were really worried about things like lawsuits. One of the participants said that they felt like a sitting duck for lawsuits. Another participant really talked about ways that they just said, I don't even want to deal with people with disabilities in my practice because the Americans with Disabilities Act really creates these challenges for me to do. So it's a complicated piece of legislation and the impact that it has within the care is further complicated by a lack of knowledge for what the legislation actually calls for, a lack of ability to enforce this legislation and really understanding how that comes to play for these physicians and their patients.
So the way that it's structured in the United States is that patients themselves would actually have to bring a case, they have to bring it to the Department of Justice to say that they've been discriminated against by their physicians or within these healthcare systems. And the burden of proof to show that they have experienced this discrimination is really high and requires a lot of resources for patients to do themselves.

Joeita Gupta:
Yeah, I think we actually see a lot of that in Canada as well. When we talk about any kind of human rights legislation, the burden of proof of demonstrating that there has been some discrimination often rests on the individual who has been discriminated against. But one of the other things we hear a lot, Carol, in a number of contexts where accommodations come up or the question of accommodations come up is around the expense associated with those accommodations. When you spoke to physicians in the focus group, was that a factor at all where physicians said they couldn't really justify the expense or the amount that they would have to spend on installing special equipment or bringing in specialized help just because they just don't have enough patients with disabilities to warrant that kind of expense?

Carol Haywood:
Absolutely. And we heard this across all of the focus groups. As one example, many of the physicians talked about challenges for providing care for people with communication disabilities. So some of them talked about ways that their patients don't have hearing aids that are working, and so they use paper and pen and they don't offer braille or other large print materials because they don't have access to those opportunities to do so. And most specifically, some of them talked about for people who have hearing impairment ways that they actually just work around that by talking to caregivers or using paper and pen instead of hiring sign language interpreters because they actually lose money within their clinics for each appointment that they hire a sign language interpreter. So the rates of reimbursement are such that they are paying more for the sign language interpreter than they're getting reimbursed for that appointment.
So that's a really big problem. I think something else that I want to bring up here is that some of the physicians talked about not really having many patients in their practices who have disabilities, and we can't really prove that one way or another. Like I said, we don't have the specific identifiable information about each of these participants. We couldn't go to their clinics and confirm who their patients are. But I think it's really interesting to really reflect on, because here in the United States, at least one in four adults identify as having a disability. We know that approximately 10% of adults have a communication-related disability. Over 50% of people over the age of 60 experience hearing loss, just under 14% of people experience a mobility impairment. And so when we look at these numbers and we know how common it is to experience disability, it's really interesting to talk to physicians who say that they don't really see patients with disabilities in their practices.
And we as a research team have reflected on this a lot to say, how could this be that there are so many people with disabilities and these physicians report so few within their practices? And I think that there are probably a couple of things at play here. I think first there's a selection bias that if the physician is not welcoming to a person with disabilities, then that person might seek care elsewhere. If they don't have the accommodations in their clinic, then that person might seek care elsewhere. I also suspect that to some level, these physicians are just not seen or acknowledging the level of need within their clinics, the need for accommodations that people may have. And so they may think that providing something like paper and pen to their patients is satisfactory and they've provided an accommodation and they're not really thinking much about an additional need for accommodation or the number of patients that they might have who actually could benefit from these accommodations. And they likely are undercounting their patients with accommodations, accommodation needs in their clinics.

Joeita Gupta:
So then if the primary care situation isn't looking that great for patients with disabilities, where are people with disabilities going when they're getting sick? Carol, do they just end up in emergency rooms?

Carol Haywood:
We do see that here in the United States that many people rely on having to get emergent care through emergency rooms. We know from prior research that there are significant delays in care, there's more difficulty accessing care and that there's substandard quality of care for people with disabilities. And we also know that there's decreased satisfaction relating to care. So there many people with disabilities describe ways that they actually avoid care or delay care if they're not feeling accommodated or not able to get appointments within spaces that they feel welcome and accommodated. So that's one piece of it is that they're not always getting the care that they need. And then another piece is certainly going to emergency rooms and seeking care when perhaps the illness course or something has elevated to a level that they cannot avoid it any longer.

Joeita Gupta:
So it's worth noting and reminding everyone that your research takes place in 2018, and of course, after 2018, we've had the pandemic, and I don't know about the United States, but certainly here in Canada, a number of physicians and doctors' offices moved into providing telehealth or virtual appointments so you could make appointments online. Do you think that this move towards online appointments is going to help to address some of the barriers that we've talked about today? Or do you instead feel like virtual appointments are a way to paper over the cracks and to put off maybe a long overdue conversation about medical ableism?

Carol Haywood:
I think it's probably a little of both. Certainly, the telemedicine movement has opened access for people to connect with physicians outside of healthcare environments, so it circumvents things like physical barriers to care. What it doesn't actually get is better quality of care. I think that this is something that we're still sussing out, but certainly, if someone has not been able to access a full and proper examination, a physical examination, they're not going to get that through a telemedicine appointment. So the fact that there was never the appropriate exam equipment within the clinic has not been fixed by providing something like telehealth or telemedicine. And I also think that it further strains or puts a burden on people with disabilities themselves to be able to access this level of technology and in order to have a good conversation with their providers outside of healthcare spaces.

Joeita Gupta:
I want to move a little bit towards talking about solutions to some of the problems we described today. And one of the things I've been reading a lot about is something called teams-based care where you have a physician working in a hub with other healthcare providers, think social worker or an occupational therapist like yourself. And so you've got the doctor being the primary care provider, but not the only one. So they're not wholly or solely responsible for their patients. Certainly, patients with disabilities are included in that. Do you feel that that sort of team's based approach might be one way to resolve some of the problems that your research has managed to pinpoint in terms of physician attitudes towards people with disabilities?

Carol Haywood:
It's a really interesting solution to think about and something I'd like to think more about. What we know is that physicians are under-trained and under-resourced to work with people with disabilities. And when we put them in a setting where they're working with other people who have additional training or additional strategies to provide good quality care and good quality accommodations in care, I can imagine that that could improve the overall care scenario. So I could see something like that actually working well that other people on the healthcare team could help facilitate or bolster the encounter in a way that really meets the needs of each person. At the same time, I think one of my initial reflections or concerns is whether or not we then strain access to care by making these teams based care models thinking about how far the geographic spread is or how hard it is to access care when these specialty clinics are just situated in certain hubs.
And that's something that we've certainly thought about across this research and other research is whether it makes sense to really have centres of care that specialize specifically in disability or to really put the burden of care on everyone and make sure that we can address the problem even further back, even further upstream to talk with physicians about the training that they receive to help them understand that disability is really just part of human condition, it's part of the beautiful diversity that we all have and ways that people move throughout life. And really thinking about what that means for how we can connect with one another and how we can create partnerships within healthcare encounters in a way that positions people themselves as experts in being able to drive the accommodations that they need as they work with physicians and other people in the healthcare team. So I love this idea and want to think about that. And something we've been thinking about more is really how do we address this within the medical training that physicians receive?

Joeita Gupta:
Yeah, I think the training piece is so important. The training is really going to be the one thing that allows physicians to be better physicians to patients over the course of their practice, and they'll carry that forward for the rest of their lives, that attitudinal change. But it is true in your research has pointed this out as well, that there are some expenses and factors that physicians genuinely struggle with. For example, equipment like Hoyer Lifts or even scales to help weigh people in wheelchairs do get very expensive. Aside from the training piece, do you have any suggestions about other policies or procedures or incentives that could be provided to physicians to make them more willing to accommodate and treat and look after patients with disabilities?

Carol Haywood:
Yeah, we think a lot about physicians don't go into medicine to discriminate, right? They're going into medicine because they really care about making a positive difference in people's lives. And what happens or what we see is that the healthcare system really puts them in this impossible place of having to make decisions that in some time, in some cases we see are discriminatory. And so something that we're really advocating for in the United States is going back to this medical education, really advocating for building disability conscious education across medical training, put it in accreditation standards so that training happen, happens early on and is a good foundation. And then as these physicians actually go out into practice creating an environment where they can continue to provide the care that they want to provide and that they need to provide. And what this could mean is really looking at things like reimbursement for appointment times and accommodations within appointments.
So what does it mean when we can actually stretch an appointment time? Here in the United States, physicians are given about 10 to 15 minutes maximum to talk with their patients to do the exam, to actually complete the encounter. And before the pandemic even, before any of these additional challenges, or even in the best-case scenarios, we know that physicians are feeling like the system itself is too burdensome and they're having a hard time really providing the care that they would like to provide. So we're looking at how can we change reimbursement standards to decrease constraints on the appointments themselves and ensure that physicians are provided the right level of support to provide the accommodations.
So if we go back to that example of physicians not able to hire sign language interpreters without losing money for each encounter, we can address that within the structure for reimbursement. We can address things like the time that physicians can have with their patients and some of the fatigue or burnout that we see related to documentation and some of those system-level features of care so that physicians can take their passion and their education and really provide a better quality of care.

Joeita Gupta:
Carol, thank you so much for speaking to us today. I know we've only touched on the topic very briefly and we could dig so much deeper, but I really appreciated your time and that you could join us here on the program. So thank you again for joining us today.

Carol Haywood:
Thank you, Joeita.

Joeita Gupta:
That was Carol Haywood discussing her research about physician attitudes towards caring with patients with disabilities. We are just about out of time. I wanted to know, of course, if you've had experiences with attending a doctor's office that haven't gone quite the way you've liked them to go, and what your experience as a person with a disability might have been in receiving primary care. I know I've gotten very lucky and have a wonderful family doctor, but I'm not going to lie to you, it took a couple tries before I found someone who was a good fit for me. I'd once again like to thank Carol Haywood for being my guest on the program and for sharing her research with us today. If you have any feedback, you can write to feedback@ami.ca. You can find us on Twitter at amiaudio. Use the hashtag #pulseami. You can give us a call at 1-866-509-4545, that's 1-866-509-4545.
And feel free to leave comments down below if you're watching on YouTube or interact with us all over the podcast. We love to hear from you. And I really do want to extend a warm thank you to everyone who does reach out with feedback for the program. I really appreciate it. I wish I had time to go through all of your wonderful comments and suggestions for the show and your heartfelt warmth and thanks. So I really appreciate it as a host and a producer, and I do hope you'll keep it up. But as I said, time for us to go and of course, we will be back next week. So don't forget to subscribe for more content like this if you haven't already done so and tell your friends about us. And The Pulse will be back with more informative content geared towards people with disabilities. Our videographer today has been Matthew McGurk. Andy Frank is the manager for AMI-audio. And of course, our technical producer is Marc Aflalo. Thanks for listening. Enjoy the rest of your day.