Transforming Medical Education

DocsWithDisabilities Podcast #3

Dr. Laura Pratesi

 

Participants:

Lisa Meeks, PhD, host

Laura Pratesi, MD, interviewee

 

Introduction: Lisa Meeks

 

Doctors with disabilities exist in small but measurable numbers. How did they navigate their journey? What were the challenges? What are the benefits to patients and to their peers? What can we learn from their experiences? My name is Lisa Meeks and I am thrilled to bring you the Docs with Disabilities podcast. 

  

Join me as I interview Docs, Nurses, Psychologists, OT’s, PT’s, Pharmacists, Dentists, and the list goes on. I’ll also be interviewing researchers and policy makers that ensure medicine remains an equal opportunity profession.

 

Lisa Meeks:

In Episode 3 of the Do With Disabilities podcast I had the incredible opportunity to speak with Dr. Laura Pratesi, an audiologist in Orlando, Florida. I learned about Laura after reading an article about her in the Orlando Sentinel. Laura’s unique experiences as a person with hearing loss, and her lived experiences, drive her passion for audiology and the care of her patients. Let’s listen or read along as Laura recounts being diagnosed and learning about her disability. 

Laura Pretazi:

I was diagnosed with a hearing loss when I was five years old. I failed the screening going into kindergarten and got referred to an ENT and to an audiologist. It was a result of an inherited birth defect. I have what's called a bilateral Mondini malformation. And then I also have enlarged vestibular aqueduct or EVA. And EVA is one of the most common reasons why children are born with hearing loss.

Even though I was diagnosed at the age of five, I actually didn't get a hearing aid until I was in college. Some of my classmates at Auburn actually fit me with my first hearing aid. And it changed my life, and I ended up changing my major from being a theater and opera major into audiology. I decided I wanted to go into this field to help people who are like me because for years I had fallen through the cracks.

That's what got me interested in audiology in the first place was my personal experience and growing up. And I really did struggle for years and I didn't realize how much I was compensating until suddenly I didn't have to work so hard to hear and to listen. My hearing loss is actually a progressive loss. So what started off as a hearing loss in one ear, now actually I have hearing loss in both. And so I am now a bilateral hearing aid user and I might possibly be a cochlear implant recipient someday.

I was lucky in the one aspect that I know so much about the hearing and balance system being an audiologist, but it was also difficult because I know exactly what the limitations of treatment and research are. I have found peace. There's so many things in our lives that are beyond our control. But what I can control is how I react to things. I think it has made me a better doctor ultimately because I really truly get what my patients are going through.

I think that it has endowed me with this empathy and understanding that education can't teach. If my experience can help or educate or bring comfort to somebody else who's walking the same path, then it's been worth it.

Lisa Meeks:

There’s a lot of misperception and stigma about hearing loss and the approaches to mitigating the impact of hearing loss. Let’s listen or read along as Dr. Pratesi discusses these topics and how “seeing herself” in textbooks informed her decision to become an audiologist.

Laura Pratezi:

I run into patients all the time who are shocked to find that I have hearing loss and they say, "You're so young". They really truly see hearing loss as something that just affects the geriatric population when that's not the case at all.

And I think as someone with hearing loss and as someone in the field of audiology, it's my job to help educate the general public so that they're making the best, most well informed decisions about their hearing and balance health care possible.

I had been to see audiologists, but I hadn't really thought about it as a career. But when I started learning about hearing loss and how it affects people, I saw so much of myself in the textbook. I mean reading about kids and the kinds of struggles they have in school and auditory fatigue and these different things. I was reading about my childhood. I was the kid that preferred to sit and read a book versus try to socialize. I mean, we had assigned seats and my left ear, which is my bad side was facing everybody. It was extremely difficult to try to communicate in that environment. And I didn't have a hearing aid or any type of assistance at the time. So they told my mother I read too much.

And of course I got labeled as being kind of a dreamer or distracted or got in trouble for not paying attention when really it was, I couldn't hear. So when I'm reading about this in the textbooks and in college, I was like, oh my gosh, that's, that's me. And that was really kind of the moment when the light bulb sort of went off and I said, I need to go into this because I fell through the cracks and I need to make sure nobody else does. So I switched my major and I signed up for the doctoral program and the rest is history. I found my calling a little late, but it was definitely the path for me, and I'm so glad when I look back, I know that I've ended up exactly where I'm supposed to be. 

Lisa Meeks:

Dr. Pratesi reflects back on her educational experiences, how using accommodations changed her academic pathway and opportunities, and how full access to materials improved not only the quality of her academic life but also of her personal life. 

Laura Pratezi:

When I actually started applying for colleges, I got a little nervous about the fact that you could have 300 students in a lecture hall. And I had always been in the mainstream classrooms and I never really had any accommodations in middle or high school. But, I thought I might need some help when I went to college. And so that's when I looked up the Students with Disabilities Department at Auburn. They were really the ones that made me aware that I can get help. I don't have to concentrate so hard.

And kind of introduced me to the fact that I could have a note taker or I could request materials be written or I could request that videos have captioning. And, that was where I learned about CART, which is the Communication Access, Real Time Translation. So the professor wears a microphone and there's a person on the other end who's typing up what they're saying in real time. And I was like, this exists? This is amazing! Because I didn't know what to ask for. I didn't know where to find those resources. And so they were really kind of the ones that pointed me in the right direction. And then of course when I got my own individual hearing aid and it made such a difference to me. Once I got into the doctor of audiology program and I was fitting children with FM systems and remote microphones and all these different technologies, I started thinking, oh my gosh, why haven't I been using that? And then going to the movie theaters and realizing  you can have caption devices, and so now I look for those things wherever I go.

Laura Pratezi:

When I got to the university, they were able to get me so plugged in. Even when they made me aware that these resources existed, I didn't take advantage of a lot of them. And looking back now I see I should have. I almost didn't ignore it but didn't realize how much easier it could make my life because I thought, well, I've never had this before. Why do I need it now? It could have just changed my experience at a lot earlier date. And so I think I see that a lot with young adults who have had hearing loss and they come into my clinic and they're not wanting to ask for accommodations at work. They're not wanting to go to the HR department and let them know I need a captioned phone or an amplified phone. They're almost afraid to ask for the resources.

Lisa Meeks:

Full access for a professional career must include more than just the educational and training environments. So much of the relationship building and collaboration occurs at conferences, and within the conversations that happen spontaneously between meetings. Success is also impacted by mentorship and sponsorship, especially for people with disabilities. Of course, communication and access to communication impacts all of the above as Dr. Pratesi discusses.

Laura Pratezi:

So much of what can make you successful is being open to opportunities and being at the right place at the right time and making the right connections and networking. And that's very hard to do if you're not having 100% access to communication. I want to tear down these barriers in communication.  We had this amazing article written up in the Orlando Sentinel and there was a video interview that went with it and I had to contact them afterwards and I said, “Could you maybe caption the video for me? Cause we're talking about hearing loss and accessibility and the video is not captioned.” And I was like, “So since we're talking about the hard of hearing and deaf community, we might want to do that.” You know, and then it's, "Oh my gosh, of course. Absolutely. Let's do that. And we're going to work really hard to make sure that we're doing that on all of our videos moving forward." I think people are willing to accommodate and meet you halfway, but we've got to ask, we've got to bring it to their attention.

In my experience, people don't care if I wear hearing aids. People don't care if I wear glasses. What they care is if I seem like I'm not listening. The hardest thing about hearing loss is it destroys communication. It creates these barriers. And a lot of times not physically being able to hear looks like not listening. And people think if you're not listening, you don't care about them. What they have to say is not important. You weren't making an effort to listen to them. And I have to tell them, “No, it's, I can't physically hear.” And it's hard to be a good listener when you can't physically hear. So I've got to get as much access to sound as I can. But then here are the things you can do to communicate better with me. You know, slow down. Face me when you're talking to me. Get closer. Get my attention before you start saying something, so that I can focus.

Lisa Meeks:

Dr. Pratesi reflects on her experiences with disability professionals in an educational setting, and she discusses the  positive aspects of sharing on social media and connecting with other individuals with similar disabilities . 

Laura Pratezi:

For someone who's wanting to go into a health science field, contacting the students with disabilities office was so helpful for me in getting accommodations and getting me plugged in and getting me the resources that I need. When patients come to me and they're needing help with something, I try to get them plugged into the local and national organizations that can help, like the Department of Vocational Rehab, or for hearing loss in particular, there's the Lions Lighthouse Foundation or the Sertoma club.

I have found Facebook to be very, very helpful. I found the Association of Audiologists with Hearing Loss on Facebook. And so everybody in that group is a deaf or hard of hearing audiologist who uses hearing aids or cochlear implants. And it's been great to be able to go on there and say, I'm dealing with this issue with listening checks of hearing aids. I'm having a hard time using my listening stethoscope and hearing if there's distortion in the device. What can I do? And then you have these other professionals who deal with this everyday as well and they've been able to give tips and tricks and hey, here's how you can get around this issue and here's how I use accommodations.

And Facebook, it's so accessible. It's so easy. Sometimes with  bigger organizations, I have to email and then wait to hear back and you kind of get the instant gratification online. They were some of the ones who gave me ideas about if a patient's in the audio booth and I'm having difficulty understanding what they're saying, taking my remote mic and putting it on the patient in the booth so that then the patient's answers go directly to my hearing aids. 

It's that thinking outside of the box and being able to talk with other audiologists who were going through it. That has helped me to think outside of the box more. Having big organizations like the Department of Vocational Rehab, it's great that those exist and they can be very, very helpful, but they can be hard to navigate, or you won't necessarily get the information very quickly. But that's where social media has been so wonderful because of fast access. I've loved being able to read, Oh, this person is struggling with this and this is how they've fixed that. Because even if that's not something that I struggle with now, it might be something I struggle with in the future or it might be something that one of my patients I see struggles with and then I can offer that as a solution.

Lisa Meeks:

Sometimes, the beauty is in the simplicity of an accommodation. Dr. Pratesi discusses this and provides an example of how her everyday need for an accommodation in practice also improves and informs patient care.

Laura Pratesi:

It doesn't have to be a big elaborate, fancy work around. It can be something simple. One of the ways I've actually gotten around the listening checks is I bought what's called a hit box. It's this equipment that you put the hearing aid in and you can run electroacoustic analysis on the device. And so it's kind of like a systems check. Like when you get the oil changed in your car and they hook something up to the computer and they run a diagnostic and they say, this is what's working, this isn't. So, the hit box tells me: is the hearing aid performing to the manufacturer's specifications? And it's a best practice guideline that we run this on patients. But a lot of the practices where I did clinical rotations as a student didn't have it.

And now that I'm in practice, if I have a student working with me or if I have a patient care coordinator who works part time, they have normal hearing. I can get them to do a listening check on a hearing aid. But if I'm by myself, I'm like, how am I going to know if this is working or not? I can put it in the hit box and run it. But like I said, this is a best practice guideline. We should all be using this anyway. So the listening check was sort of like a quick and dirty way to tell is a hearing aid working, but that's not the gold standard. And so actually by adhering to kind of the gold standard, it made it easier for me. And it's better for the patient because just because you listen to something doesn't mean it is working right. So it's making me do my due diligence and make sure it's really doing with the patient needs it to do.

There has been research that shows around 20% of hearing aids are going to be returned. But, there are other studies that show that about 30% of hearing aids out of the box aren't meeting manufacturer's specifications. So how many of those 20% returns could have been avoided if we were not taking the manufacturers word that the devices working, but actually running a test on it to make sure it's working before we give it to the patient? These patients have had a negative experience with a hearing aid and they're saying hearing aids don't work. Well, no, they don't if the device isn't working or if it's not programmed right. If the average patient waits 7 to 10 years after they need a hearing aid before they get one, sometimes it's that long before they'll even come in for a test. 

We're doing a disservice to the patients if we're not following these best practice guidelines because there's technology. It can help them, and it's our lack of integrity that's then causing them to wait longer and delay treatment. And we know earlier intervention can make better treatment outcomes. We really need to be doing these hit box measures and real ear measurement, measuring at the level of the eardrum, how much volume the hearing aid is putting in for soft, medium and loud speech. It's the only way to accurately prescribe a device. If you program a hearing aid, but you're not running real ear measures, you're just guessing that the prescription is right.

Lisa Meeks:

During our interview, Dr. Pratesi reflected on how her disability informed her development and how theater opened up a whole new world of communication for her and taught her a lot about the different ways in which we communicate. She’s taken her love of theater and used her involvement in theatre as a way to build awareness and inclusion for people that are hard of hearing in the arts.

Laura Pratezi:

I was actually a theater and opera major at Auburn before I switched to audiology, and I got plugged into theater at a pretty young age. I actually have a heart condition as well. So it wasn't feasible for me to go into sports or anything like that. And growing up going to so many doctors for these health issues that I had, it was hard. And I had a lot of anxiety and maybe some resentment too, some anger about that. And so being the angsty preteen that I was, my mom got me plugged into a drama group and it was just amazing. It was so cathartic, such a great way to get all my feelings out in a healthy, safe environment and really helped me to learn how to express myself in healthy and constructive ways. You can kind of live vicariously through these characters you play in and learn a lot about yourself and how to be a more effective communicator. And that's the whole thing again, with hearing loss, it's barriers to communication. You know, I learned about body language and facial expressions and I just really developed this love for music, and performing was my background.

One of the challenges for me is always hearing the orchestra or hearing the music. But we have such cool technology now, like Bluetooth and in ear monitors and ways to get that sound to my brain and help me to give a better performance.

I got the opportunity this past year to play Belle in a community theater production of Beauty and the Beast. It was a dream role for me. It was just so much fun and getting to play this iconic Disney character, it was amazing. And I wanted to bring to the conversation that, hey, I have hearing loss and I get to be a Disney princess. There's no limitations. So I reached out to some of the different organizations I've worked with in the area like the Hearing Loss Association of America.

We had kids wearing their hearing aids and their FM systems come and see the performance. You'd go out afterwards in the big beautiful gold ball gown and you get to see these little kids and their eyes are just shining and they can see themselves up there maybe for the first time. 

Lisa Meeks:

Finally, Dr. Pratesi reflects on what it means to be a doctor with a disability and how her disability improves her practice as an audiologist.

Laura Pratezi:

Even though it's unfortunate that I went so many years without hearing aids, I wouldn't change it now because getting to go through it as a patient and as a doctoral student at the same time, I don't think it would have been ingrained in my brain as much if I had gone through it at a younger age. It's always kept fresh in my mind what the patient's going to experience, what the patient's going to go through. And I think it's made me better at preparing them for, this is gonna take a little bit of work.

I don't think you have to have hearing loss to be a good audiologist. I think my hearing loss has made me a better audiologist because I do just have an understanding. Experience is the best teacher and having lived through that, it's taken me to a better place and it's made me a better doctor. So that's where I think sometimes these things that society might tell you is a disability, it can actually be a superpower if applied in the right way.

Lisa Meeks:

Join us on podcast #4 when we talk to Dr. Marley Doyle, a psychiatrist with a visual disability. 

Kate Panzer:

This podcast is a production of the University of Michigan Medical School, Department of Family Medicine, MDisability initiative. It is released under a creative commons, attribution noncommerical, nonderivative license. This podcast was produced by Lisa Meeks and Kate Panzer.

 

This podcast was created using excerpts from the actual interview and is representative of the entire conversation. Interviewees are given the transcript prior to airing. Some edits may reflect grammatical and syntax adjustments for transcription purposes only.

 

References and Resources:

 

Association of Medical Professionals with Hearing Losses (AMPHL)

https://www.amphl.org

 

Hearing loss associations and organizations

https://www.asha.org/public/hearing/Hearing-Loss-Organizations-and-Associations/

 

Technology helps actor hear musical theatre’s beauty https://www.orlandosentinel.com/entertainment/arts-and-theater/os-et-belle-hearing-impaired-clermont-20190319-story.html

Auburn alumna with hearing impairment inspires on and off the stage as an actress and audiologist

https://ocm.auburn.edu/newsroom/news_articles/2019/06/030920-laura-pratesi-alumna.php

 

McKee M, Smith S, Barnett S, Pearson T. Commentary: What are the benefits of training

Deaf and hard-of-hearing doctors? Acad Med, 2013;88(2):158-161. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3591515/pdf/nihms-447961.pdf

 

 

McKee MM, Choi H, Wilson S, DeJonckheere M, Zazove P, Levy H. Determinants of

Hearing Aid Use among Older Americans with Hearing Loss. Gerontologist. 2018; epub

ahead of print. doi:10.1093/geront/gny051 https://www.ncbi.nlm.nih.gov/pubmed/29788270

 

 

The AARP series of articles on how to navigate the hearing aid world. 

https://www.aarp.org/health/conditions-treatments/info-2019/top-problems-hearing-aids.html

 

Hearing Health Care for Adults: Priorities for Improving Access and Affordability. Washington, DC: The National Academies Press; 2016

https://www.nap.edu/catalog/23446/hearing-health-care-for-adults-priorities-for-improving-access-and

 

According to the HIA statistics, the return for credit (RFC) rate for all hearing aid styles in 2014 was 19.4%, which is in line with historical industry data. http://www.hearingreview.com/2015/01/hearing-aid-sales-increase-4-8-2014-rics-continue-market-domination/

DocsWithDisabilities Podcast #2

Dr. Erene Stergiopolous

Part 1 of 3 Transcript 

Participants: Lisa Meeks, PhD, host

                      Erene Stergiopoulos, MD, interviewee

 

Introduction:  Lisa Meeks

 

Doctors with disabilities exist in small, but measurable numbers. How did they navigate their journey? What were the challenges? What are the benefits to patients and to their peers? What can we learn from their experiences? My name is Lisa Meeks and I am thrilled to bring you the Docs with Disabilities podcast.

 

Join me as I interview Docs, Nurses, Psychologists, OT’s, PT’s, Pharmacists, Dentists, and the list goes on. I’ll also be interviewing the researchers and policy makers that ensure medicine remains an equal opportunity profession.

Lisa:   

 

Today I embark on a winding, and revealing conversation with  our guest Dr. Erene Stergiopoulos, a Psychiatry resident and researcher at the University of Toronto. In this vibrant city we meet up for a very real conversation about wellness and disability in medicine.

 

In this three-part series we discuss everything from the unwritten curriculum and mixed messages in the medical education to licensure and consequences of disclosing a psychological disability.

 

In part one we discuss Dr. Stergiopoulos research on the unwritten curriculum, discourse around wellness and being a good patient. We also discuss the unintended financial, social and academic consequences of leaves of absence.

 

Lisa:   

We're in Toronto and it's so lovely to be here, although it's not very lovely

outside. It's very overcast. But I'm excited because I've never been to the

city and I was so excited to be able to interview you in person. I've been a

fan from afar and so I know we have a big future together.  Can you, for the audience, introduce yourself and tell us a little bit about your background

 

Erene:            

So my name is Erene Stergiopoulos, I just finished medical school at the

University of Toronto. I'm heading into residency, a couple of months in psychiatry, also at the University of Toronto. And I also do some research in the area of accessibility in medicine, in medical training. And I also do a little bit of student activism as well, kind of based on that research.

Lisa:              

Great. I know you had a paper that came out, I want to say 2018 academic medicine [1].

Why don't you tell us a little bit about your research?

 

Erene:

Sure. So, the people that I work with on this research are my supervisor, Athina Martimianakis and Dr. Fernando Oshan who's an anthropologist. And the research that we did was about the experiences of Canadian medical students with disabilities using both interviews as well as kind of policy analysis, critical discourse analysis of blogs, policies, where we looked at basically the hidden curriculum around accessibility and wellness in medical school.

 

So what do we mean by the hidden curriculum? It's really looking at what students are learning about medicine, about what it is to be a doctor, about what it is to be a patient, but outside of what's actually on lecture slides formally in their medical school. So we think about the language the practices the policies that shape how and what students learn.

So our research was looking at not only what are medical students experiencing but also what are some of the barriers to getting access to accommodations, but also what are some of the messages around the appropriateness of even having a disability in medicine and how does that get communicated through various institutional documents, various student discourses of how they perceive the ideal medical student to be and how they perceive that student to perform.

 

We found that looking at both the interview data from students as well as the textual analysis data of all these policies and documents in student affairs websites, there was

this really strong discourse of this ideal medical student, someone who doesn't really ask for help, they're performing at an extremely high level, they're doing a million different projects outside of their academics. So they're doing research, they're also really engaged socially. And they're also someone who doesn't get sick and if they do get sick, they still come into work every day. So that was something that we saw that was really not super surprising but very striking to see it so plainly laid out. And a second part of what we found was this discourse of the good patient. So this was something that came out a lot through our interviews where students talked about experiences, either witnessing patients and how they were treated when they were in their student role or seeing how they themselves were treated.

 

For example, this idea of the good patient with someone who was supposed to take really good care of their health. They were supposed to be really independent in managing all of their needs, taking responsibility for self-care. And so what we saw was that being a good patient and a good student was very, very hard to do at the same time. Students were kind of pulled in completely opposite directions where on one hand they're supposed to be extremely high performing and not need help. And then on the other hand, as someone with a disability or someone who is a patient, they need to completely self-manage and spend all of their time on self- management, which kind of precludes the ability to do well in school. We saw this as this really conflicting message that students were receiving where they're kind of not able to fulfill both roles.

Another part of our analysis had to do with looking at discourses of wellness because of the services that are provided to these students often fall under the mantle of resilience and wellness. And what we saw was that often wellness was actually framed as a means to achieve that ideal medical students' status. Sometimes wellness was, a means to achieve balance, a means to avoid burnout. But in a lot of cases, wellness was actually something where students and administrators and institutions mobilized it as this means to become more efficient in their studies. So it's like go to this meditation or go to this yoga lunchtime session so that you can become more efficient at work or more efficient than your studies. There were other times where it was framed as a way to get better grades.

 

So seeing the ways in which wellness is framed becomes this way of excluding people because it says, if you can't perform these very conspicuous self-care activities, like drinking a green smoothie or doing yoga at lunch, you're not actually performing wellness properly. So you think about students with disabilities who might not, you might need to spend a lot of their self-care time doing very different types of activities. What does that say to them? Are they appropriate for medicine if they can't perform those roles?

 

Lisa:

It sounds like you have to be perfect already to engage in wellness and if there's actually

any component that is unwell, you are not even a candidate to engage in the programs that exist because you might not have time. Like you said, that critical self-care. People might be attending a physician's appointment or doing physical therapy or meditating, and if they're not doing what's prescribed as wellness by the institution then they're not that stellar student.

 

I know today's topic, we're really going to focus on barriers what barriers you have identified in[1]  the undergraduate space and what barriers do you predict going into the GME space. And how are those different when there's still a level of patient responsibility that wasn't there before. And I think that where things start to get muddied both for the individual with a disability and the disability professional or access specialist who’s trying to help them navigate these the unwritten curriculum as you like to say.

 

Erene:

I think that a lot of the barriers especially the ones that are not as intuitive have to do

with an absence of a communication or an absence of information around where access lives or where that contact point for inclusion can happen. For example, transitioning from undergraduate medicine to graduate medicine. I don't think that there are actually any systems in place where someone's accommodations in their undergraduate can just get forwarded to their graduate program. And what would that look like?

 

I think about, for example, when someone is welcomed by their program director for the first time in GME, is there a part of that email that says, "If you require accommodations, here's the one specific person to email, not a general email, not like grad dot program." So, you know, how does that message come across? And is there a space on their website, for example, that says if you are a graduate here’s how to get accommodations? Here's the HR person at the hospital where you're working that you can work with.

 

Lisa:

I'm so glad you brought up the generic email, I have to say that I find it to be really a [2] 

microaggression of sorts. It’s what’s behind the curtain and were not going to tell and we’re not going to tell you the processes or policies but if you feel the need to disclose, here's the single address and you don’t know who it goes to you would restrict the amount of information you would share, but it can be really intimidating.

 

Erene:

Absolutely. I had to email a generic email when I first applied for accommodations.

 

Lisa:

Really?

 

Erene:

Yeah. It was actually a really interesting experience looking back because, there was no

publicly available information on the website of my school on how to apply or who to call or email so as a learner that the message that comes across through that is, "Oh, I must be the only person who needs an accommodation." Which is extremely isolating and othering because you feel, "Okay, I'm alone in this." And that is definitely a hidden curriculum moment, right? it's an unintended effect of a policy, or just a lack of information where a school might be very committed to equity, diversity inclusion and access for all students. But by virtue of just not having that information transparent and visible in a place that's really accessible, they've actually excluded a lot of people.

 

So that's definitely a barrier and I think that going into GME it becomes an even more of a barrier because programs are a lot less hands on than at the UME level. I think that an office like GME or I think here in Canada, or at least at my school, they call it PGME. So postgraduate medical education. It's not as clear what role they have in ensuring our

wellness because then there's also resident wellness committees, there's hospital-based sites and there's also like the resident union or the resident's association that also is kind of contributing to things like duty hour restrictions, or they're advocating for residents about duty hour restrictions and things like that.

 

It becomes just a way more complex issue because they're also getting paid there’s also that pressure of, "Oh, I shouldn't take time off because of my disability because that’s going to reduce the call pool and now my colleagues are going to have to take on more call. "

 

Lisa:

Right. One of the things that we found in our data collection[2] was that people were

reticent to initiate any type of leave or even minimal like release from overnight call, because they knew the burden would then be distributed to their peers, that in and of itself wasn't surprising because people are very altruistic and they care about other people so it makes sense that this would translate to their peer residents. What was surprising was that they said because I know that this other resident is on the fringe of a breakdown and if by my taking care of myself through leaving for appointments or attending to my sleep hygiene so that I am the healthiest person I can be to attend to my patients that I know it's going to possibly be the straw that broke the camel's back for my colleague. They were not only having to attend to their wellbeing, they were feeling very responsible for everyone's wellbeing and reporting that the actual state of wellbeing was really unknown to the program directors, that there was a lot of put on a happy face and were all doing great when in reality behind the scenes everyone was having days where they felt this may be the day where there’s one too many things on my plate.

 

Erene:

Absolutely. And it's hard because there's all of this invisible communication between

residents where some of the people have disclosed to their program that they have a disability that they require accommodations, but just like you were saying, if you know that your colleague hasn't applied because of stigma, because of the fact that it might be something new for them and this is crisis that's just starting. How do you manage that? There’s this sort of guilt when you know that everyone has it really tough and maybe this is part of medicine, like the culture of medicine, you don't want to be... the person who requires the most resources. You don't want to be needy and that's something that actually came through in your paper, in the journal of general internal medicine it was about mixed messages [3], especially that residents have to face in training where their programs are super gung ho about wellness and resilience and taking care of yourself. But the reality of being a resident is that you have these incredibly difficult hours, you feel really really responsible for patient care because most residency programs are service based rather than really training based and residents are rewarded for self- sacrifice whether that's you know uh implicit or explicit.

 

There are cases where students or residents are incentivized to take more call, which is super tricky because who is that actually excluding and who doesn't have access to that incentive? Because they have a child at home or they have a disability.

 

Lisa:

And who is going to get the fellowship.?

 

Erene:

Right. It’s the person who who did one of three call instead of one and four.

 

Lisa:

It's a little mind-blowing kind of the hamster wheel, and I think in my practice where I saw a

medical students the fear almost focuses on not wanting to get off the wheel, because everything in motion stays in motion right? But the minute we stop, I think there was a very  is real fear that it will all come flooding in and the moment of breakdown will be at that moment. So as long as we stay on the wheel everything is going to be okay because we know the wheel, we know the motion, we know[3]  the body becomes acclimated to it.

Erene:

I think what you mentioned about getting off the wheel, like taking leaves of absence is

something that's still really stigmatized I think partly because you lose touch with that main support system, which is your class. So I took a little bit of extra time in my clerkship because I had a chronic physical condition where I was in a clinical trial and we had to do a lot of appointments and was managing that at the same time as doing clinic. I took an extra year and I am graduating with the class one year after my original graduating class. I have to say I loved it. I really liked being able to extend my clerkship, it was so much better for my health. I was able to manage things and have control over my learning in a way that I don't think I would have.

 

Lisa:

Did you decompress your clerkship or did you opt out of blocks and come back in?

 

Erene:

I opted out of blocks and came back in so it was one rotation on one off.

 

Lisa:

So you did decompress, just in a block format?

 

Erene:

It was really great. The breaks in between my rotations were times where I was lucky my health was good so I was able to do research, I was able to stay productive and feel like I was still meaningfully in medical school. I think the fear is that a lot of people who face a leave of absence or who are recommended to take a leave of absence in particular...

 

Lisa: 

We're going to come recommended in quotes. Because our listeners cannot see the

looks on our face when we talk about recommended leaves of absence.

 

Erene:

Yes. When students face the idea of actually pulling out of the curriculum for a given

amount of time. There is a lot of pressure to understand “What, what am I going to do for this amount of time? Who am I going to hang out with? Everyone is going to keep on going and I’m going to be left behind. And also quite pragmatically what happens with my fees? Do I have to pay extra tuition?

Lisa:

There’s so many consequences, and even the tuition, which I normally don't talk about

that's institution dependent, I've had institutions that do not charge tuition in those interims, they only charged for when you're in the clerkship. They may charge a second year of fees, which is still an impact financially but nowhere near a 40, 50, $60,000 impact. The litany of consequences that people don't think about and these consequences are pretty significant.

 

You mentioned the financial consequence you know other financial consequences are that so often times the student is living, that is their income, so in the absence of that they have no income whatsoever. And usually if you're taking a leave of absence, you can't work. I know that right now Dr. Joe Murray and I are on a little bit of a soapbox about medical schools ensuring that students opt into disability insurance to cover any gaps that may occur. Ideally we’d like to just them pay for all of the student's disability insurance. We think it's that important and it's relatively inexpensive for the institution. Do you want to talk about some of the other unintended consequences because there's so many?

 

Erene:

I think that in some cases when people take a leave of absence, if they are not given the

choice to pay their annual fees to the university, they can't use the gym anymore or they can't use the wellness services at their school. So for example, if they're seeing a personal counselor at their school, that suddenly gets cut off which is huge. I mean that is completely antithetical to the point of taking that leave for wellness. That’s completely antithetical to the point of taking that leave for wellness.

 

Lisa:

For the typical student who takes a leave of absence, they're gone for a chunk of time.

What are the consequences socially when that occurs?

 

Erene:

I think for a lot of students it's really hard to get back on the horse so to speak.

Depending on whether you're with your original class or with a new class, there's so much onus placed on the student to self-disclose all the time because people ask why were you gone? What happened? Or who are you, I've never seen you before? If you're with a new class and then you have to, basically you have a script in your head of every time you have to like explain essentially, okay, how much information am I going to disclose? How well do I know this person, Am I going to know this person for more than one day? Or am I going to be with them in clerkship for the rest of the next six months?

 

So I think that that's something that is completely mediated through just student interactions like accessibility services doesn’t have any place in our social lives... And yet, this is part of managing accommodations. It's that not just the self-disclosure to faculty, to program directors to preceptors, it's also to our peers. Especially when disability is still very stigmatized and people think, "Oh, well it's not fair. Why don't you have to do a full-time clerkship?" So there's all of this navigation of this really, really, really complex emotional territory in an environment that's still very competitive, where people might see someone who's getting accommodations as an unfair advantage, rather than something that's actually just leveling the playing field for them.

 

Lisa:

It almost is exponential; the consequences and we don't think about them. It’s enough

for anyone of them right: the loss of insurance, the loss of provider, the loss of finances. If you are out for 6 months all the sudden you have to start paying your loan back. So double that financial implication. But then you start adding in the social consequences and curricular consequences. Because we haven’t even talked about the consequences of having to explain this upstream to GME and all of these things are sitting out there in the landscape and

they're not additive, they're exponential. And I see so often that these things are what keep people on the hamster wheel and make it a really unhealthy environment to be in.

 

Join us in part 2 of this critical conversation where we continue the conversation where our focus shifts to licensure, perceptions, and barriers within category of disability, professional identity as a doctor with a disability and boundaries with faculty preceptors.

 

 

References:

 

1. Stergiopoulos E, Fernando O, Martimianakis MA. “Being on Both Sides”: Canadian Medical Students’ Experiences With Disability, the Hidden Curriculum, and Professional Identity Construction. Academic Medicine. 2018 Oct 1;93(10):1550-9. https://journals.lww.com/academicmedicine/Fulltext/2018/10000/_Being_on_Both_Sides___Canadian_Medical_Students_.40.aspx
2. Jain N, Meeks LM. Accessibility, Inclusion, and Action in Medical Education: Lived Experiences of Learners and Physicians With Disabilities. https://store.aamc.org/accessibility-inclusion-and-action-in-medical-education-lived-experiences-of-learners-and-physicians-with-disabilities.html
3. Meeks LM, Ramsey J, Lyons M, Spencer AL, Lee WW. Wellness and work: mixed messages in residency training. Journal of general internal medicine. 2019 Mar 28:1-4. https://link.springer.com/article/10.1007%2Fs11606-019-04952-5

DocsWithDisabilities Podcast #2

Dr. Erene Stergiopolous

Part 2 of 3 Transcript 

Participants: Lisa Meeks, PhD, host

                      Erene Stergiopoulos, MD, interviewee

 

Introduction:  Lisa Meeks

Doctors with disabilities exist in small, but measurable numbers. How did they navigate their journey? What were the challenges? What are the benefits to patients and to their peers? What can we learn from their experiences? My name is Lisa Meeks and I am thrilled to bring you the Docs with Disabilities podcast.

 

Join me as I interview Docs, Nurses, Psychologists, OT’s, PT’s, Pharmacists, Dentists, and the list goes on. I’ll also be interviewing the researchers and policy makers that ensure medicine remains an equal opportunity profession.

In our last podcast interview, we started the conversation with Dr. Erene Stergiopoulos talking about her research, the unwritten curriculum in medical education for learners with disabilities and some of the barriers to full inclusion. In part 2 or this 3-part podcast series we have a conversation about everything from tackling barriers to licensure, social consequences of having a disability, and boundaries between learners and faculty in health science programs.

Lisa:               What happens when a psychologist and psychiatrists enter a room and they're given a mic with free reign, you never know. It could be a glorious conversation with lots of depth and I know that my interviewee today I could talk to for hours. She is an amazing rising star, recent graduate from medical school, why don't you introduce yourself to our audience?

Erene:            Sure. Thank you so much, Lisa for having me. My name is Erene Stergiopoulos I just graduated University of Toronto medical school and I’m starting psychiatry residency in July. I also do a little bit of research on the experiences of Canadian medical students with disabilities and do some student organizing as well.

Lisa:               Today we talk about the impact of disability and taking a leave of absence on licensure. Unexpected consequences of disability on the process, delays and even impact on practice we begin with Dr. Stergiopoulos recounting her own unexpected barriers to licensure after extending her time in medical school.

Erene:            On the Point of licensure. I am applying for my medical license right now and had no idea what the consequences of actually extending my medical school would be for my license. So, I've had to get doctor's letters, I've had to get letters from my dean, just to explain the extra time and it’s something that I wish I had known in advance just to be able to give myself more time to get this all of this together because it's a ton of paperwork. Something that's not discussed ever when you get accommodations.

Lisa:               And it's a ton of paperwork but even within the paperwork even within the paperwork there's privilege in the category of disability that you identify in, right, because for you, your category of disability, is probably more accepted by the medical community and there’s clear indications for the projection of your care, um you're not going to be "a harm to patients." But think about someone who has a mental health issue andthe overwhelming reality of the licensure issue, which is that I have to disclose a mental health history, I have to disclose any hospitalizations, they're supposed to ask if there's anything current that will impair your ability to provide care to your patients. But some states still ask about historical mental health care and if you have ever been to counseling ever [1].

Erene:            Wow.

Lisa:               Imagine if you're a medical student and in your transition to medical school, you seek help to attend to that adjustment or say you're married and you seek marriage counseling because navigating medical school as a married couple can be very difficult and you have to disclose all of this. And then there are consequences where you may have to have oversight from... a psychiatrist and oh by the way, it's not enough that you have a limited license now and you have oversight from a psychiatrist. You also have to pay that psychiatrist for that oversight, so now we're back to the financial implications. There were many students who would not seek help because of that.

Erene:            That’s a huge barrier. On twitter recently, I saw someone had screened captured, this was in the Canadian system, but I think it was for getting your um license beyond the graduate license to be a full stop attending doctor you needed to disclose any time you’ve been treated for burnout. I'm sorry, 50% of medical trainees have burnout. Are we going to profile every single one of them [2]?

                        And even thinking about disclosures on licensure applications, perhaps if someone had an extended residency due to a disability, that's probably because of the intense demands of residency, whereas once you're an attending, there's a lot more flexibility your time is much more your own so the fact that the standard at which practitioners or trainees are judged is not reflective of what the actual work environment will look like, once they're actually fully trained, fully licensed. So, it's again, it's this extra barrier that adds so much complexity and so much extra work to the trainee but that really might not be relevant later on.

Lisa:               I imagine some of these barriers also serve as the origin of secondary disability. So, if you have a learning disability, chronic health disability and the stigma and the shame that go along with some of the maneuvers that you have to do... I know we were just talking about it's a 10-page application for disability services appropriate. Probably not. If you have to expend extra energy, cognitive and physical to navigate a space where you’re not really sure what  the climate and culture are you are not really sure what the process is... and the internalizing of it's me, it's me, so now I'm tip toeing even lighter and that can lead to secondary disability of anxiety. And then that its own issue and can parlay into other things like depression or sleep disorders.

Erene:            I think that one thing, that from a student perspective, that I've definitely seen for my peers, for myself while we might have an accommodation once you've jumped through all the hoops and you have the documentation, one thing that's always still very tricky is actually disclosing that accommodation to an individual preceptor, because that's actually where accommodations finally take shape. That's where they get implemented, and so it can be really, really tough, especially in a clinical environment where you're at in your clerkship, you have a different preceptor every day and suddenly you have to tell your preceptor, "Oh by the way, I have an accommodation, I'm allowed to go home at this time today for an appointment."

                        And if that happens too many times in that rotation, how's that going to affect the evaluation? And so that is definitely a barrier to people actually even using their accommodation. So, they might have the official documentation and the accommodation approved by the school, but they might be actually hesitant to use it for their health or for their wellness because of the stigma attached to being perceived as a needy student or a lazy student, someone who's not willing to put in the work like there are other colleagues are. So, I think that's a really big barrier, I guess it's more of an attitudinal barrier.

Lisa:               Yeah, or you have an interaction, you engage in that accommodation the first time and it goes so poorly because the preceptors are not trained. So, they received this and they're like, "How am I going to have coverage?" And they push back or they ask questions. And then it becomes, "Well, is it worth it to, tell the truth about what's going on? How much do I have to tell? Does private often sensitive information. It may be the interaction that leads to not engaging and not taking advantage of that accommodation. And then what happens when the learners’ health starts to deteriorate?

Erene:             Exactly.

Lisa:               Who gets blamed? The learner.

Erene:            Yeah, because they weren't being a good patient, they weren't self-regulating and self-managing.

Lisa:               It all goes back to your research [3]. What is a good patient, what is a good doctor? And those two things, never the two shall meet, right?

Erene:            It's also really honestly heartbreaking to hear stories of people who have been confronted by preceptors or by supervisors who tell them, mmm I don't know if this is the best program for you, because of this disability?

Lisa:               We have the beautiful privilege and benefit of knowing so many surgeons with disabilities and if I know a learner or a physician that is a wheelchair user as an example, my first question back would be, "Sure what specialty?" Because I probably know one in every specialty. If you asked about a physician with a learning disability, I would probably have the same response.

We self-filter based on our interests, our strengths, our weaknesses, we all did, that's just human. So, of course individuals with disabilities were going to think about their disability and have that inform their decision but there's so much more than a person with a disability. They have so many interests and so many ideas about different areas.

Erene:            I think at the student level it's also really, really discouraging to hear colleagues who've been told by their supervisors, are you sure you're cut out for medicine? That brings tears to my eyes when people describe that as something that they've experienced because probably that barrier that they face is what's going to make them an incredible doctor in the end of the day. Just by virtue of knowing how hard it is to navigate a complex healthcare system, knowing what it's like to be on the other side as a patient.

Lisa:               I was sitting here listening to you, I'm thinking about people that have physical disabilities or apparent disabilities, and the barriers that might be very different for them. Can you talk about the barriers in each?

Erene:            I think that for someone with an apparent disability, one of the biggest barriers is that physically they come across as a patient first, in a sense, they enter the floor, they enter the ward. A friend of mine jokes about this, people have this head tilt reaction if you are apparently disabled  So if you are in a wheel chair or you use a cane people will talk to you with their head tilted, it’s the same thing when people talk to kids.

                        It’s this sort of strange, almost condescending move that people make and it’s trying to be friendly, trying to beengaging but it's this odd habit that people take on and I think that for someone to be in that position andto suddenly make your first day of clerkship, you're expecting to be treated like the rest of your colleagues and suddenly someone throws in the head tilt when they talked to you for the first time. It's cloying almost to have to take on that mantle every single time you enter the room but what if you don't want to be the trailblazer. So there's this incredible onus and responsibility I think that's So that can be a barrier because that's just so much extra work and so much extra emotional likely shouldering that.

                        I think another barrier for someone for learners and trainees with apparent disabilities is the fact that oftentimes just plainly their environments are just not going to be accessible to them. I think there must be a lot of back and forth with their learning environments, whether it's a hospital or a clinic, trying to ensure that they can make it that day and get through the work. There just so much emotional tribulation, I imagine, and it’s hard for me to talk about this because this is not my own experience, but just being on the cc'd person on those emails of how are we going to accommodate this person? This is going to be so tough. Oh, what kind of extra costs are we going to incur? And being the fly on the wall and those conversations must be incredibly, incredibly difficult.

Lisa:               Around the accommodations. So and so needs a special this, or special equipment. But at the same time everybody tends to rally even if it's say, what is perceived as being either costly or time consuming, there's a rallying around this person that I think often doesn't occur with an individual with a nonapparent disability. And going back to something we were talking about in the beginning where programs, either think they're doing it right or think they're doing it wrong, unfortunately, so often when a program has a student with a physical disability or a sensory disability so an apparent disability, they hold them up as proof that they are inclusive.

                        And I like to point out that there are nine individuals to every one individual that has a sensory or physical disability who have disabilities, who have disabilities that they're not holding up and they're not rallying around [4]. And so, this kind of disparate approach to supporting a learner with a disability, =I don't think it's intentional. I think people don't know what they don't know, I believe that. So, let's talk about the barriers for not apparent.

Erene:            I think one of the biggest barriers for not apparent disabilities, and I almost wanted to find that into two subcategories where one is mental health, and then the other category is sort of everything else. no, but it really is hard to think about them all in one cluster because they all face such different barriers. So, I think about a learning disability for example, where people must feel like learner's experience such incredible imposter syndrome already regardless of whether they have a disability or not. And then throwing it learner with a disability, especially a learning disability. And suddenly the imposter syndrome is just amplified so much more because there's so much guilt around accessing test accommodations, extra time, deferred exams deferred assignments, where everyone else in the sessions and like the culture of the social environment of medical school is a very collaborative one for the most part. But it's also an extremely normative culture where there's one way of doing things.

Lisa:               Yes, yes.

Erene:            I was just reading a paper the other day about specific wellness initiatives at schools and some of the most effective ones are thought to be the creation of learning communities. So, like small groups where people are studying together.  Imagine for the student with a learning disability, how difficult that must be if they can't participate to their fullest in that learning community.

                        So, with, for example, a learning disability, so much of the social and learning experience, especially in pre-clerkship has to do with social learning with your peers. So being in study groups, being in an anatomy lab for a couple of days a week, where, um your ability to participate is can be really determined by your ability to follow and kind of match all of the other students in your group.

Lisa:               You're already behind the curve before you even began and the approach to learning is set up for the superstar student. And so not only are you already behind, but you're going to enter a learning environment where the learning is not created or the platform for the learning of the type of learning is not one that is created to advantage all students, and neither is the assessment and type of assessment. So, the student with a learning disability, lack social life missing out on activities, whether it's a study group, which in and of itself is a bonding experience right, they miss out on that because the way that they have to approach the material is different. Perhaps, they have to listen to the recording recordings of the lecture multiple times. Perhaps they use assistive technology to have their textbooks read to them or the articles read to them. Perhaps they have a very detailed system of underlining and rewriting and creating anagrams that may be the system that works for them, which by the way will map onto actual practice really well because they're always thinking outside the box. And I think students with learning disabilities in particular because they have to learn differently, especially students that have dyslexia, they learned very visually, they are able then to go into specialties where a visual understanding or a mapping or the ability to manipulate things in visuals space is highly regarded.

They're missing this key social component, right, the study group but it's not just a study group because of that extra time. They're also missing the, "Hey, we're going to grab a beer and a pizza, which can happen to individuals with apparent disabilities as well, I remember interviewing someone who said  hosting events at bars and restaurants that they could never access. And then if you are deaf or hard of hearing, you can't, it's almost impossible to socialize. So, it sounds like across and between exclusion, and so you miss out on those lunches or the little mini moments where people bond.

Erene:            And also, those moments lend a lot of social capital to students because it's through that, that you might have a lunch with a preceptor who might give you a letter later on or help you advance your career by giving you a research job. So, all of that extra time that's taken for managing one's own condition ends up taking away from those possible moments that would otherwise give that student incredible advantages in their career.

I think also a lot of ways that people really strong support networks, especially if that's something that's outside of medicine. And so, the more you have to rely on that support network  outside of medicine the less time you have to go get the pizza and beer after studying group or even just hang out after class in someone's apartment, because you have that system around you already that keeps you well and you have to use that system and tend to it, right? Like having a family, having a support system isn't just like it's there when you need it. It's no, you're also there for them. And so, I know a lot of um the people that I've talked to through my research and also just anecdotally as a learner a lot of the people who I talked to with disabilities also have a really strong family, they might be married, they have a really supportive partner who is there for them when they need it. And so, it's not the same as someone who's coming into med school, they moved to the city for the first time, they are in an apartment solo, they don't have really any other responsibilities, they don't have any pets, they don't have any partners and they can just socialize freely with whoever they want.

Lisa:               So, we talked about learning disabilities and you made mention of the fact that you think that you cannot uniformly speak to all non-apparent disabilities that they all have barriers that are unique to them. Mental health is one and chronic health is the other, do you want to speak to those?

Erene:            Sure, so Chronic health is something that I'm most familiar with, is someone who has a chronic health disability. And I think that the biggest barriers there have to do with self-disclosure and how much information you give to the clinicians around you, and this is something that we were talking about it, you risk kind of being seen as a patient or patient-efied essentially by your colleagues. Because they are doctors they know these conditions they know the side effects. And I think there’s just this inherent curiosity in medicine. You're given a case, you're given these like key words, it's like, "Oh, here's a 29-year-old female." And sudden you turn into a case and I’m trying to think of what kind of barrier this is but I think it’s just navigating this incredibly complex situation in identity construction as a professional where your trying to become a doctor and trying to become a good doctor but you’re in two roles at once when people treat that way and they want to ask you about your medications and your side effects, where your also playing the role of patient, while also trying to become a doctor. And that's incredibly hard to navigate and there's a boundary there that ends up getting crossed a lot of the time because preceptors out of the goodness of their hearts really want to know as much as they can about the condition that this student is dealing with in order to help them and support them when really that might not be appropriate for the student to have to disclose that amount of information to the well-meaning preceptor.

Lisa:               What I’ve heard in my interviews, is that there was a shift. AndI don’t think the faculty understand the depth and breadth of the power differential. I  think they try to be very accessible but they don't understand that if they ask a question, chances are 99.9% that the students going to answer it, they’re not going to say “you know that is really outside the bounds of your role as my faculty member you are not my physician” The relationship changes. And it can become almost parental If the learner looks even remotely unwell, which could have nothing to do with anything related to their disability and everything to do with the fact that they just got off of, night float and they say, "Oh, how has your medication working?"  It's so deflating to experience that type of interaction when you just want to be a medical student, or you just want to be an employee.

 

Erene:            When that is taken out of the learners’ hands that is incredibly stressful.  Because you can’t control your own narrative, you can’t control the way that you are perceived, the way your performance is judged, the more disability factors into someone’s evaluation it just reinforces and ratify this idea that disabilities are imitations to be overcome by the individual rather than barriers that exist in the environment because we haven’t thought to make things equitable and accessible to everyone.

 

 

Lisa:               Join us for part 3 of 3 of this second podcast when we conclude our discuss on forward feeding information, impression management, resiliency and mental health in medical education.

 

References:

 

1. Gold KJ, Shih ER, Goldman EB, Schwenk TL. Do US medical licensing applications treat mental and physical illness equivalently?. Fam Med. 2017 Jun 1;49(6):464-7.
2. Dyrbye L, Shanafelt T. A narrative review on burnout experienced by medical students and residents. Medical education. 2016 Jan;50(1):132-49.
3. Stergiopoulos E, Fernando O, Martimianakis MA. “Being on Both Sides”: Canadian Medical Students’ Experiences With Disability, the Hidden Curriculum, and Professional Identity Construction. Academic Medicine. 2018 Oct 1;93(10):1550-9.
4. Meeks, L. The Disabilities we don’t see. [https://news.aamc.org/medical-education/article/the-disabilities-we-dont-see/]

Dr. Erene Stergiopolous

Mental Health and Medicine

 

Participants:

Lisa Meeks, PhD, host

Erene Stergiopoulos, MD, interviewee

Joe Murray, MD, narrator

 

Introduction:  Lisa Meeks

Doctors with disabilities exist in small, but measurable numbers. How did they navigate their journey? What were the challenges? What are the benefits to patients and to their peers? What can we learn from their experiences? My name is Lisa Meeks and I am thrilled to bring you the Docs with Disabilities podcast.

 

Join me as I interview Docs, Nurses, Psychologists, OT’s, PT’s, Pharmacists, Dentists, and the list goes on. I’ll also be interviewing the researchers and policy makers that ensure medicine remains an equal opportunity profession.

 

Lisa:

 

Mental health isn't black and white. It's not you’re in or your out your well or you're not well. Mental health is a continuum. Any given day, any given week, any given month, there are moments where people will feel really taxed emotionally and then you can see them the next day and they could be functioning just fine.

Joe Murray:

Welcome to the docs with disabilities podcast. I am Dr. Joe Murray, a practicing psychiatrist and an associate professor of clinical psychiatry at Weill Cornell Medical College. I will be guest narrating this podcast. In part 3 of this 3-part series, our Docs with Disabilities host concludes her interview with psychiatry resident, Dr. Erene Stergiopolous. In this very frank discussion, Dr.’s Meeks and Stergiopolous touch on some of the bigger barriers for learners with psychological disabilities and ponder whether wellness programming is actually helping, or harming learners. They found themselves contemplating a few of the biggest barriers in medical education for students with psychological disabilities. One suggestion, from some medical educators, is to forward feed information about students with disabilities to residency programs. The thought is that if the information can be shared, residency programs can more accurately and appropriately support the learner—but Dr.’s Meeks and Stergiopolous offer significant cautions for forward feeding and question whether this is supportive or detrimental to the learner.

[Music]

Erene:

I think that the forward feeding can be an incredible barrier because students don't have that control and, when they don't have control over what information gets disclosed or, what mentions of their disability get fed forward into let's say, a graduate program or to a hospital where they might be training as a resident, that will automatically affect the judgments about them from day one. So they'll walk into the room and suddenly people will know things about them that they haven't even chose to disclose or they haven't even chosen to share. And that is incredibly disempowering because people have already judged your performance before you even got there.

And so, no matter how well you do on your first day, that's probably gonna affect your evaluations. It's probably gonna affect how the team interacts with you. Depending on how many people were privy to those emails or to that information, it might affect how your peers even perceive you. You know, are you going to be seen as a burden on the team? So, the less control students have over disclosure, or at least the less they're aware of what is being disclosed at what time, the more it creates the situation of chaos that the learner then has to do damage control on essentially. Cause it's all about impression management, right? We're constantly performing in medicine like I was saying, like you're always being evaluated. And so that just adds another level to having to regulate oneself and perform in the medical environment. Because not only are you trying to enact this incredible doctor role, but you're also having to add say, “Look, I am so competent. You may have gotten this information about a disability that I have. But don't worry, I'm extremely competent, over and above the label that you've attached now to my name.”

[Music]

Joe:

So how does medical education, in their efforts to support the learner, ensure they are meeting learners needs and evaluating learners equitably? One mechanism of moving toward greater equity is competency based medical education. In this way, bias may be reduced, as competency can be more objective. Yet, with every approach, there are positives and negatives as discussed by Dr.’s Meeks and Stergiopolous.

[transition music]

Lisa: Right now, I feel like competency-based medicine is actually better for people with disabilities because there's less subjectivity to the assessment. And so the competency is clear. You either meet it or you don’t, it’s a yes or no, and it's harder for programs to discriminate against people who are competent. On the other hand, as we're developing competencies as a profession, some of the competencies that are being developed are restrictive to individuals with physical disabilities and not necessarily necessary for the practice of medicine. I'd love your opinion informed by your research but also your personal experience.

Erene: I think competency based medical education I find is fascinating for many, many reasons. First, I'll talk about the positives. I think that when CBME was first touted as this incredible new revolution in medical education, I think a lot of the excitement was about the removal of the time barrier. And so as someone who actually took more time to do medical school because of a chronic health disability, the idea of everyone's curriculum being sort of flexible on time -- so, you know, maybe taking extra time, maybe taking less time for certain things, just as long as you are proven to be competent or you demonstrate that you're competent in the various domains -- was pretty exciting. I think at least in Canada, from what I understand, that has not really taken place. There's not really people who are finishing their PR programs earlier.

They're not really many people who are finishing later apart from the traditional people who would have been finishing later anyway. So whether that's because of pregnancy or because of a disability. So I think that the idea is a positive one of just creating more flexibility around timing. Because I think one thing that in my research has come up the most is just time is the most valuable currency we have, because it determines your ability to take care of yourself. It determines your ability to go to appointments. I mean, in clerkship, in medical training, your time is not your own, your time is someone else's. And so oftentimes, the people that we talked to who access to accommodations, a lot of those accommodations literally just had to do with being able to go to appointments when they had to because they had to see their psychiatrist every week.

I think CBME, one of the promises or one of the potentialities that come from that are possibly giving more flexibility timewise to learners. I think where competency and competency based medical education gets really tricky is the talk of turning wellness into a competency. So this is actually, I'm writing something about this right now actually. Right now both in Canada, in the U S it's kind of quietly there in the competency standard -- and in the technical standards. Yes. And it's really interesting the ways that they define wellness or the implications of the definition of wellness. So, in the US, I think ACGME, it's in the professionalism competency and it has to do with basically role modeling to patients what good health looks like by being able to take care of yourself by being well, by taking care of wellness.

In Canada, it's actually even more explicit. They have like six sub competencies under professionalism that relate to wellness and it has to do with self-regulation, self-care. Yes, exactly. There's so much about self-awareness, which is great. It's really good that this is considered to be an important and essential duty and responsibility of a physician. But how do you evaluate that?

[music fading throughout this section]

Lisa:

Right?

Erene:

And what does it mean for a learner to be unwell?

Lisa:

Right?

Erene:

Are they not competent?

Lisa:

Right.

Erene:

And is it a failure of the learner or is it a failure of the program or the hospital or the environment in which they are not able to be well? Because I would argue that someone who's doing one in three call, if they're unwell, it's not their fault. I think that this kind of actually also gets back to mixed messages, right?

Lisa:

Mhmm

Erene:

We have this revolution of wellness happening in the medical community right now, but a lot of it feels, at least from a student perspective, it feels like lip service to us because we're still working in the hospital 80 hours a week. We still have 26- hour call and then we're told, “Oh, you should pet a dog. You'll feel better.”

Lisa:

There are very few programs that are actually doing systemic things that support physicians. Things like scribes, flex time, there was a program in California, and everyone who wanted to go into it. There was white space built into your day. What it allowed students with disabilities to do was to say, this is my white space for the entire year. I can make appointments based on knowing that I have this white space. Importantly, I can see my provider as needed. And I thought, isn't that a beautiful notion for residency as well?

Joe:

Resilience has been defined in many ways, but it includes healthy coping and problem-solving skills, taking positive action and being persistent. How is medical education supporting or hindering the development of resiliency? What happens when you have a disability that requires additional time to address wellness, cognitive, sensory or physical needs? Does having a disability build resiliency?

[Music]

Lisa:

We talk about resiliency. What is resiliency, right? Resiliency to me, filling your buckets at every opportunity you can get so that you can draw on those reserves. Those little moments like you said, that our students might miss out on because they're doing all of this other stuff to manage. And so they don't get the social capital. They don't get the social connection. They don't get these opportunities.

Erene:

Yeah. It's interesting that you mentioned resiliency because I was looking at the double AAMC’s, competencies for pre- medical students entering medical school. There's 15 of them and one of them is resilience and, but the way that they define resilience isn't this beautiful vessel that we can draw upon when we need support for moments that are difficult. It's basically being this superhuman is being resilient and withstanding every possible kind of pressure. So, I think it's really interesting the type of meaning that we ascribe to something like wellness, something like resilience, really determines how students even feel like they can perform those activities. Right.

Lisa:

Well, it's back to how do we define resiliency, how we define burnout. How do you operationalize it? You want somebody who's resilient, who's tough, who can think outside the box, who's nimble. That is, by definition, a person with a disability, who with the proper support and access is going to thrive because they're not going to get beaten down the first time something happens. They're going to pivot. They’re going to march towards plan B and they're going to be creative and adapt.

 

Joe:

 

A major barrier identified In the 2018 AAMC report on disability was the clinicalized culture of medicine. How does the clinicalization of learners with disabilities and the clinicalization of normative emotion impact how our learners process information in a clinical setting and the consequences of that clinicalization, including leaves of absence, disclosure and help seeking, and licensure. Some question, should a person with a disability, especially a psychological disability, even be a doctor?

Lisa:

You know, I don't think medical students cry enough. I think it's very human. People need to be able to have and feel and express emotion. And we clinicalize it and we’re very punitive about it. We force leaves of absences for individuals with chronic mental health issues who are functioning. And we're not talking about somebody who’s not functional on the wards or in courses and who absolutely needs to take some time off. We're talking about people who are doing fine, and the only reason that they're being asked to leave is because they have a chronic health issue. You talked about navigating the space and kind of being on at all times. How horrible must it feel to have to try to feel your emotion and be on at the same time?

Erene:

I don't know if that's even possible. Right. Yeah, I mean I think that is probably one of the hardest things I can imagine anyone would ever have to do. To actually be honest with themselves about their emotional state while also doing the job. One quote that I really loved from the research that we did was from a student who had experienced a chronic mental health issue. And this person talked about how medicine is sort of inherently about self-sacrifice. And it's inherently about erasing yourself because it's sort of in the interest of listening to the patient, of understanding what they're going through, and giving our full compassion to them. But for someone who is going through such an incredibly jarring or life shifting emotional experience, that feels like a violence to have to do that to oneself.

Now having been through medical school, I can't think of another way of getting through the day when I'm having a really bad emotional day, other than to sort of just shut away my emotion and not think about it. It's such a high paced and such a high emotional demand career that sometimes I think it's very hard to even remember the person that we are while we do the work. And so the more hours that you're working, the more one in three calls, the more we give ourselves to this profession, the more we lose ourselves. And I don't think that's good for anyone.

Lisa:

Compartmentalize it. Shut the door, lock it, throw the key away.

Erene:

Yeah. Is that healthy?

Lisa:

It all comes out at some time, and you hope that it doesn't all come out at the same time.

Erene:

Yeah. Because that's when someone might report you and you might lose your license.

Lisa:

Right. It's so scary. The disincentive to seek help, the disincentive to disclose is huge in that environment. We talk about leave of absence should be one thing. I need to take a leave of absence. OK, that’s it. We've already talked about the consequences of leave of absence, right? But we've talked about the social consequences, the academic consequences. The transition to GME and then after GME, the transition to licensure. These are huge implications. They're a disincentive. Collectively, they're overwhelming. And so a lot of students choose to check their emotions at the door, to compartmentalize, to lock that key. But for the student who has the strength and the vulnerability to say, “I'm not okay today and that's okay,” that is a strength of a different kind. And it should be okay. And there shouldn't be a fear of, if I'm not okay one day, someone's going to take my world away.

That's why we talk so much about the systems change and that wellness programming and these external things, it's giving you one more thing to do in a system that doesn't allow you any time to do anything to begin with. The system is stressing you and now it's adding this layer. If you don't engage, then it's on you. You are the problem.

Erene:

And as someone who's going into psychiatry, it's something that I also see kind of from a clinical perspective when I get to know my patients really well, and try as hard as I can to understand their experience with mental illness and how that affects every single thing about how they interact with the world. The big buzz word in mental health is stigma, but, and I don't want to call it a buzzword to trivialize it because I think that stigma with a capital S is probably the hugest barrier that students would face with a chronic mental health issue. It's lack of understanding. It's being asked constantly whether they are even appropriate and competent to make medical decisions. The patient safety issue constantly arises in particular with trainees or students who have a chronic mental health disability.

Because there's this lack of trust. And imagine being in that spot every single day where already there's so much extra work that goes into managing that kind of disability. It means they have to go sleep. They have to change their diet. They have to do all of the things that make sure that they don't get really sick. And so knowing what those experiences are like for people and then adding on that layer and pressure of, “Oh, but can we even trust this person to be a doctor and make decisions in the first place?” That's a huge barrier in my mind because I think that in some people's minds, and not all, this isn't a whole like medical, cultural level belief, but I think that there is still this belief that people with the mental health disability aren't appropriate for medicine.

Lisa:

That actually leads perfectly into my next question. And I think it's funny, as we sit here, the sun has come out and the gray overpasses. We're talking about mental health and the sun came out. That's such a good positive sign. Then my next question is, and I've actually had this question directed to me, why do you want somebody with a mental health issue in medicine? What is the benefit? If we're worried about patient care and patient safety in a space where we have 25 to 50 applicants per spot, why are we choosing somebody with a mental health issue to be a physician? I know that's a big question.

Erene:

I love that question though because I think that there's a lot of value and even asking it because I think it's a question that people don't even think of. I personally think that people who have experienced that type of disability have this incredible ability to understand a lot of what their patients are going through, even if their not seeing a patient in a psychiatric context. Imagine the anxiety that happens when you're getting diagnosed with something for the first time. Imagine all of the adjustment that has to go with starting a new chapter of your life with a new illness. As someone who's going into psychiatry, I think that 75% of medicine is psychiatry.

 

Lisa:

 

Wellness is everything including mental health. And so I think with that, we'll call it a renewed commitment to holistic health, that we're going to see a lot more integration of psychiatry and psychology into other specialties.

Erene:

I think to that point, the slogan or the mission of one of Ontario’s largest mental health facilities is just mental health is health.

Lisa:

Yes.

Erene:

Which I love because it's not just some separate thing that only specific professionals deal with. It's something that all medical professionals have to take into account when they see the patient. And so back to what students with mental health disabilities add is that incredible understanding of what that's like. And something that the participants in our work talked about so much was how attuned they were to actually asking their patients how their illness was impacting their life, which is something that as medical students we learn is like, they call them fife questions.

It's like, how does it impact your life? How does it affect pack to your function? How are you feeling about it? These kinds of questions that are thrown in at the end of your history and physical. And you know, you have to get them to pass the OSCE. But in real life there's never enough time.

Lisa:

And patients know. When they're tacked onto the end, a patient knows you're not really wanting this information. You just have to ask.

Erene:

And you're not writing it down in your notes. You're not typing it into the EMR that, “oh, this is how this person feels about their illness.” It's just a nicety. I bring this experience as well to my work. I really care about how a patient has digested their own experience and the emotional output of that experience because I've been through it. And so for students with mental health disabilities in particular, it's very hard to imagine the mental state of another person unless you've lived it. There's this really famous phenomenology paper called, “What Is It Like to Be a Bat?” We can't know what it's like to be a bat. I can't know what it's like to have to hear voices. In psychiatry, sometimes we do these empathy exercises where you literally sit in a chair and have people shout in your ear threats to you or commands to try to get for the briefest second what it must be like to be in an interview session as a patient with your psychiatrist, and you're trying to focus on what the psychiatrist is saying, what you also have a few different voices in your head telling you to do things. People who have experienced severe forms of mental distress bring a sensitivity and just a level of empathy to their work that it's very hard to bring unless you've been through it.

Joe:

We end with some concluding thoughts on why disability is a valued addition to the diversity of medicine.

Lisa:

I don’t want to suggest that all physicians have to work with concordant patient populations, because I think you make a really good point where you say 75% of medicine is psychiatry. But it is that the ability just as a person to empathize with the struggle, any struggle that a person has or the limitation that a person is experiencing or, like you said, to hyper focus on the one voice that you know is true. I think that's kind of the basis of the argument, not just for mental health but for all disabilities is that it is a different layer. And I think that disability is certainly one of those valued forms of diversity that brings a lived experience that our patients have that not every medical student is going to have. And it changes the way you think about medicine.

Erene:

Yeah.

Lisa:

It really does. When you've been there. It changes the way you think.

Erene:

And it changes probably why you went into medicine in the first place.

Lisa:

So many people. Yeah, absolutely.

Erene:

I think thinking even at like a social justice level and a more structural level, I think that as a community, physicians should represent the people that we serve. And so, of course we need physicians with disabilities because how else can we represent the population of patients.

Lisa:

One in five, right? It's so lovely talking to you.

Erene:

Likewise.

Lisa:

I'm so grateful for your work and that you are entering our profession. You're such a bright young rising star.

Erene:

Thank you.

 

Lisa:

 

And you are going to be a great physician. I know you're going to continue to grow this work. And it’s important work, and I am really grateful that year you're doing it.

Erene:

Thank you.

Lisa:

And thank you so much for agreeing to be interviewed. And I hope that this podcast serves as a beacon of hope for people that are in the pipeline that might not enter medicine out of fear of all of the things that we've talked about today, all of the barriers. And I know we haven't talked about how to remove those barriers necessarily, but I think identifying barriers is the first step and then addressing them. And I know you're doing work to address them. I'm doing work to address them. And so we're on it people. We’re working. Just hearing from other physicians with disabilities is in many ways helpful to, not only the learner that's in the pathway or thinking of entering the pathway, but to the admissions dean or to the faculty member or program director or clerkship director, or dean of students. Or maybe even the dean is listening, who knows?

Erene:

It's so important and so beautiful to see how much of an impact that you've had already and to see even lie the survey and to see the numbers rise in the number of students actually disclosing. Yeah. Good stuff. Good stuff.

Joe:

I’m Dr. Joe Murray and it’s been a pleasure guest narrating this podcast. Be sure to subscribe to the Docs With Disabilities Podcast and look for episode 3, where our host talks with Dr. Laura Bradley, an audiologist whose own personal experience with hearing loss, informs her work, giving her unparalleled access to her patients’ needs and experiences.

 

Kate Panzer:

 

This podcast is a production of the University of Michigan Medical School, Department of Family Medicine, MDisability Initiative. It is released under a creative commons, attribution noncommercial, nonderivative license. This podcast was produced by Mark Stephens, Lisa Meeks, and Kate Panzer.

 

References:

 

DeCastro A, Mims L, Stephens M, Chessman A. Forward Feeding in Graduate Medical Education: Results of a National Survey. Family medicine. 2019;51(4):326-30.

 

Kassam A, Ruetalo M, Topps M, Mountjoy M, Walton M, Edwards S, Nickell L. Key stakeholder opinions for a national learner education handover. BMC medical education. 2019 Dec;19(1):150.

 

Hodges BD, Lingard L, eds. The Question of Competence: Reconsidering Medical Education in the Twenty-First Century. ILR Press; 2012.

 

NEJM Knowledge+. ACGME Core Competencies: Professionalism and Quality Care. NEJM Knowledge+. January 2017. https://knowledgeplus.nejm.org/blog/acgme-core-competencies-professionalism/.

 

Frank J, Snell L, Sherbino J, eds. CanMEDS 2015 Physician Competency Framework. Ottawa: Royal College of Physicians and Surgeons of Canada; 2015. http://canmeds.royalcollege.ca/en/framework 

 

Dyrbye LN, Sciolla AF, Dekhtyar M, et al. Medical School Strategies to Address Student Well-Being: A National Survey.Academic Medicine. January 2019:1.

Lisa Meeks:                Introduction

 

Doctors with disabilities exist in small, but measurable numbers. How did they navigate their journey? What were the challenges? What are the benefits to patients and to their peers? What can we learn from their experiences? My name is Lisa Meeks and I am thrilled to bring you the Docs with Disabilities podcast.

 

Join me as I interview Docs, Nurses, Psychologists, OT’s, PT’s, Pharmacists, Dentists, and the list goes on. I’ll also be interviewing the researchers and policy makers that ensure medicine remains an equal opportunity profession.

 

Today we talk with Dr. Nichole Taylor about what happens when disability is acquired after training and how you can continue to contribute to medicine in a powerful way. 

 

 

Lisa Meeks:                I'm so excited, this is our first Docs with Disabilities interview, so we're learning together. I'm thrilled, and as you know, about a year and a half ago I asked if you would be my first interview. 

I thought that, given your dual roles, you live in two worlds, you live in the UME world and the GME world, and the fact that your disability is a little bit more complicated maybe than others, that you were the perfect person to provide some really well-rounded perspective about what it means to be a doc with a disability, and what it means to work towards greater inclusion of individuals with disabilities in medicine. I'm going to ask you to introduce yourself, and then tell us about your story.

Nichole Taylor:           My name is Nichole Taylor, and I am the assistant dean of student affairs at Wake Forest University. I also am the associate residency program director for anesthesiology at Wake Forest. My story was the typical normal story for most med students going through education, and four years of college, and four years of medical school. I did a year of general surgery internship at a pretty rough and tough county hospital, which taught me a lot, and then went on to do my three years of anesthesia residency. If that wasn't enough, I added another year of high-risk OB anesthesia, because I really loved ... I loved patients, and I was ... come from a family of teachers, and it just seemed right for me to land into a big academic center to do my fellowship training. 

Nichole Taylor:           In 2009, I was an attending. I was training residents, I was working with medical students, being in the OR with patients and taking a new learner who was very nervous about making a mistake which was kind of what I lived for, because I enjoyed showing them how to do things safely. I enjoyed watching them grow in that role to confidence. [music]

 

I remember my last case as an anesthesiologist working with Brian, one of my residents, and I started developing this really left-sided heaviness in my arm and leg. Wasn't really sure what it was, and as a typical doctor, didn't really seek a lot of medical attention. Thought it would go away on its own. Just needed another good nights' sleep.

                                    That next morning, I woke up, and I was pretty much hemiplegic. It was really difficult to move my left arm and left leg, and so I went to the emergency room. [ambulance sounds] All of these things are going through my head. Like was this a stroke? Was this a brain tumor? What is going on? But something was definitely very serious. It was a different side of medicine than I was accustomed to. It was a different side of medicine than I was accustomed to. After a bunch of tests, an MRI and listening to some of the questions they were asking, I was pretty certain it was multiple sclerosis. Then I was admitted to the hospital. [music] [4:07]

Lisa Meeks:                I can't even imagine what that experience had to have been like for you, Like the loss of control that has been described by so many physicians with disabilities when they are in the role of the patient is so starting to them. They see a different side of medicine that maybe isn't so wonderful. What were your experiences like interacting with other physicians and medical staff as a patient?

Nichole Taylor:           I knew a lot of the people who were taking care of me, which was in itself a little odd too, but I remember the big teams coming in and even though I'm highly educated, I'm not a specialist in ophthalmology or optometry, or some of the other specialists that were coming in and I remember them using these really big words, which is embarrassing to say as an anesthesiologist, but we don't use those words and I was having a tough time just processing everything, really trying to get an understanding of what they were finding on the physical exams that was so interesting for them. I think I was in shock. It was definitely a lot of fear. How am I going to provide for my family? I had two small daughters three and five. My job, my career. A lot of concerns, and a lot of uncertainty, which isn't something I had encountered a lot of in my life.

Lisa Meeks:                [5:36] You talk about the shock and the fear. Did you immediately think 'I can't be a physician'? How did you conceptualize your identity as a provider, a physician?

Nichole Taylor:           That is a great question. It brings me to probably four days after I was discharged from the hospital when I was coming in to get my final diagnosis after the test had been run. I remember the neurologist sitting down and saying, "This definitely is multiple sclerosis. We're not really sure what type, so there's a few types, relapsing and remitting, where you'll have a setback, but then you may get closer back to what your normal was. And then there was a more progressive type where you would continue to have increased dysfunction and disability."

                                    Being an anesthesiologist who's really used to giving a drug in the OR and seeing effect, so we're not the most patient people, I was like, "So when are we going to know which type we have?" He had said, "In about six months we'll have a better idea which type you have, and what your new normal function would be." I remember kind of joking, but kind of seriously saying, "Six months is a long time. Six seconds is usually what I see in medicine when I give a drug or an intervention. Six minutes is pushing it." He just stoically looked there and said, "We're going to have to wait six months." [music]

                                    That's when I realized there's a big difference between different specialties, I was always hopeful I would get back into the OR. For the first two years, that was like the driving goal. I don't know if it's because you have these deficits, and for me it was the left-sided weakness in coordination with my hand, and some cognitive issues that I was seeing pretty serious speech therapy for at the time.

                                    I had these significant deficits, but I think we're all fighters in medicine. We think if we work harder, or if we work stronger, if we work smarter, we can overcome a lot of the obstacles that are in our way. I started doing extensive physical therapy, occupational therapy, speech therapy, up to nine hours a week. Really pushing myself to get that coordination back, and that precision, because in our field you have to be predictable, reliable every single time. It's a very procedural-based field in anesthesia.

                                    I'd go down to the sim lab where it was very safe. It was a good environment to continue to hone my skills. For two years, some days I would be able to slide a breathing tube in, or do a little procedure on the mannequin, and other days I wasn't able to do that. I think I realized over that time how unpredictable my disease is day to day, and what I can guarantee I could do safely for the patient. And that actually was a huge loss. But when I came to that realization where I think the term for me occurred was when I said, "Well, maybe getting back to the OR isn't the best thing for me, because relapsing or remitting MS means I'm going to have multiple setbacks, and I'm going to have to keep fighting this fight several times throughout my career, and each time starting over." For anyone, that would be like beating your head up against a brick wall. For me, I thought 'what can I contribute reliably and predictably in 25 years that will still give me the same satisfaction, and perspective and influence on the learners, med students, residents and other faculty members?' That's when the shift happened. [Music begins] Everything got better after that. Just acceptance is a process, and it's one that you visit multiple times.

Lisa Meeks:                You clearly love medicine. Knowing what you do now, I know you're still involved in medicine. How did you switch to plan B?

Nichole Taylor:           Yeah. For the first six months, I was on short-term disability. I was at home, which is really interesting, because I woke up routinely like I did every single day prepared to go to the OR, which anesthesia is pretty early. After six months, I had really great conversations with my leadership, specifically Dr. Tobin, who saw the value in what I was contributing before with the residents and the students, and in the residency program as a teacher. I think for Dr. Tobin, he saw that I could contribute significantly in a way that nobody else had in the department in administration on a daily basis. So he encouraged me  to get involved in other little projects that he had to help him with certain policies, procedures that needed to be refined, starting a rotation for the residents in new things. It was able to help me see  new ways that I could see my career. Then I also looked at listings through the school for other opportunities and mentorships. One really caught my eye, mentoring the medical students in their third and fourth year to apply to residency, which was perfect because I was doing recruitment already through the anesthesia residency program. Having the support of people to think outside the box, and not have a faculty member pulled clinically that can contribute significantly at an administration level really helped the entire department move forward.

Lisa Meeks:                He leveraged all of these skills, and really facilitated this for you. You said you reached out, and in the third and fourth year you were really interested in mentoring anyway. You described your last resident, and it sounds like, for you, part of where you got your validation and feelings of success were really in the teaching moments. Mentoring is a nice natural expression of that. Talk to me about that, because you still do that.

Nichole Taylor:           I still do that, yes.

Lisa Meeks:                Talk to us about that. [11:52]

Nichole Taylor:           Yeah. I think that when you have loss like I had with MS, there's nothing more fulfilling for me than to see students progress in their medical training, in their skillsets, packaging them up for a residency and walking with them every step of the way to help guide them. And some of the students that I think I'm the most proud of are the ones who have struggles, and adversity, adversity of all types. It may be disability. It may be life outside of medical school. It may be that they feel like they're impostors, and that they don't deserve to be there. I think that it's nice to be able to dialogue with a faculty member. I'm very open about my disability with the students. A lot of times I will speak in their orientation. I think it's important that they all know that we aren't these superhuman beings, and we struggle. But I think when you can be vulnerable, and you can show that we can be human beings I think it's good for them to know I'm stumbling now, but I have these role models who have shown me that they've overcome it too. And so I use a lot of my skills and my time and my experience to help guide them, and sometimes refocus them, or have them  stop if it's a big decision they're making. A lot of times in the office I'll say, "Okay, we're going to pause because this is a decision that matters in 10 years." I think that it's my way of giving back to others to have a career that I loved and lost. [13:33]

Lisa Meeks:                I would imagine that in those moments of pause that you described, that there's also an opportunity to talk to them about not ruminating about the decisions that don't matter 10 years from now, right? Helping them build resilience in that way, and being able to compartmentalize the energy and understand what is important. So often I think some of those types of accommodations, so physical space, modifications or bringing a designated interpreter, or a cart system into the ward or clinic is pretty straightforward. When we work with students who have psychological disabilities, or learning disabilities, or chronic health disabilities, things get a little bit more complicated. Not necessarily because it is more complicated, but the perception of the disability is that it's more complicated, regardless of fact. But why don't you talk a little bit about the unpredictability, and how you navigate that now, and how learners might be able to navigate that in when they're going into either UME or GME. How does someone with a chronic health disability navigate that space, and the unpredictability of their particular disability?

Nichole Taylor:           [14:50] Multiple sclerosis is an autoimmune disease. I think that's important, because as with lots of autoimmune diseases, we do have more of an unpredictability component. The medications that can stop someone from MS or other diseases from having flares or relapses is different based on those diseases. I think what's particularly challenging with multiple sclerosis is it can be a physical disability, but I would want people to realize that MS is very different in everybody who has it. Being involved with the MS Society, I see a huge spectrum.

                                    I think it's important with all disabilities to really engage the individual who's coming to you with that issue, and find out what exactly their needs are, because I have friends that have very little to know needs at all with their MS, and then I have other friends who are on the other side of that spectrum who would ... are very dependent, needing just the activities of daily living. I think it's real important to realize it's a spectrum, as with most autoimmune diseases. I think that a lot of it depends too on specialty that you're pursuing. So being more regimented seems to keep my multiple sclerosis just a little more at bay. That's tough to do in residency. I don't think that it's impossible, though.

                                    But if I had decided to ... had pursued radiology ... or family medicine, I could be a fully functional physician in that field. So with all diseases, especially autoimmune diseases, it's going to be highly variable. For anesthesiology, it's a lot more intense. We're confined to space in the OR. I am the captain of the ship in a sense, in that if the resident, or maybe the nurse or mid-level provider couldn't do a procedure or an airway, that's a pretty extreme situation in which I would have to be the backup. And so, because I don't retain that ability to do that anymore, it's just not safe. But there's other specialties that I could've been fully functional in.

                                    My favorite students are the undifferentiated. They have no idea what they want to do. A student who's coming with a disability where we would talk about what their limitations are. Of course, usually this would maybe done with a disability specialist, and not a student affairs person, just because I'm also in charge of other roles. But I think because I am so open about it, students do seek me out, but I also do often tag other people to assist. I think that it's about strengths. It's really not to me about disability. It's about what is a student going to do well. What do they enjoy? What are they passionate about? But there would be requirements of any specialty that would need to be taken into consideration.

                                    [17:50] But I don't think that we should tell somebody from the gate that these things are off limits. I really with all my students do not tell them that they can't do something. A lot of times it's more academic performance, but I will say, "We can go down that road." I had a student who had an injury of their upper extremity, and they were not able to place a breathing tube and intubate somebody with their left hand. We were able to get a right-handed blade, which they could very successfully do.

                                    [18:25] I'm not a big one to say no, but maybe on a black and white paper you'd say, "Oh, this person doesn't have mobility of their left hand," but there are very easy accommodations we could do. I would be very hesitant to tell a student they absolutely cannot do something because of this diagnosis. I think that it would be great in an ideal world if that student was brought to simulation lab, and we can really explore what their limitations are, and what they're comfortable at. Because I think in the end, I really don't feel a student will go down a road, and go and pick a specialty in which they could not be a full physician. But we have to be willing to have these conversations. We have to be willing to sit down and address what the concerns are.

Lisa Meeks:                Because Not many people sit where you sit in UME and in GME. I'm interested in the transition from UME to GME. I've heard other people talk about how students in the traditional sense, so UME, have a lot of support systems, and have a lot of understanding, a lot of second chances, a lot of guidance. Then they transition to GME, where they are expected to operate autonomously almost with very little oversight. Someone could very quickly find themselves in a deficit type of situation if they don't have any true mentoring or guidance or support.

I think students are feeling out the space of GME, and trying to gain perspective. Some students do disclose and talk about it very openly. Others don't, and I don't begrudge them their fears, because I think it's a valid fear of not matching. But when they match, of course our formal advice to students is that at that point, you need to disclose disability-related needs and request accommodations in a formal manner. How do you, as someone involved in the GME space, advise students to navigate disclosure?

Nichole Taylor:           [20:41] I think it's very interesting, because I feel like I wear lots of hats. When I'm dealing with complex situations, I really ... I put the hat on of assistant dean. I think about my students as they march up to transitioning to graduate medical education, and then I put my other hat on of being an associate residency program director, and taking that new intern into our program for four years. I definitely see that the undergraduate medical education has this huge support system for them. I think there's a clear pathway on how they can address needs like accommodation in several places. But when they do get to the graduate medical education portion, one of the biggest things is now they are also an employee, and so a lot of those types of accommodations fall in the human resource realm. For several, that may be the first time they've ever encountered it. I think that we definitely have people with disabilities in our residency programs. We may or may not know them.

                                    I think that it would be helpful if we could be more open and vocal, and make this as part of their orientation. Just educating people just in general that all of these wonderful diversity initiatives, that disability is another form of diversity. We're going to be taking care of patients with disabilities. When they can see someone that looks like them, or has overcome something to be successful, it's inspiring to patients.

I think that there's one moment that I'm the most proud of about being a teacher. It's because I feel very passionate about the students. I had signed up to do this doctor/patients relations class, and it's a course that's offered one of the first few days of medical schools, just introducing the students into the hospital, instead of just into the classroom. I had signed up, and it was one of the things I really wanted to start doing now that I had more time and wasn't working clinically.

                                    Unfortunately, I had a setback and was in the hospital getting IV steroids for five days, and so I wasn't going to be able to show up to meet the students for their first day and teach them. I was assigned another co-facilitator. I had called them and said, "Can we bring these students to my bedside?" Because I just couldn't pass up this opportunity to show them that we're not ... doctors aren't always what you think, and patients aren't always what you think either. He came and brought the students up. We didn't let them know that I was the co-facilitator. All they had to do that day was say hello, introduce themselves, say hello and ask just generally why I was there. The four students came in with Dr. Manthey and introduced themselves one by one. "Hi, I'm student doctor," and down the line. They asked my name. I gave my story that I have MS, and I was currently having  a relapse, and I was having left-sided weakness, and I was being given IV steroids. At the end of that conversation, Dr. Manthey turned to the students and said to them, "This is your co-facilitator, Dr. Taylor, from anesthesia. She's going to be teaching this class the rest of this year with me."

                                    It was so good in so many ways for the students as well, but also it helped me the next week when I was teaching them, because I was then going to teach them with a walker. I think often about instead of them meeting me in that patient space, meeting me walking in with this walker, maybe me not disclosing, having them wonder instead of them thinking about the case we're talking about. What's going on? We got through that part of the conversation. They knew exactly what was going on. The rest of the year as I had to sit down while they were interviewing patients, and I was critiquing their interview skills and their physical examination, I could sit on my walker and not feel that I was a distraction. It was the perfect introduction I think on so many things.

Lisa Meeks:                People can't see us, but we're both here with our eyes welled up with tears. You think about the impact that that has on a first-year medical student. It could quite literally change their perception of people with disabilities, or patients completely, for the rest of their education. To see that the first patient that they're exposed to is a physician with a disability, who then turns around and teaches them, and there's so much value in what they're learning from you, has to really change their ideas. What a great story, thank you for sharing.

Thank you for joining us today for the docs with disabilities podcast, join us next time when we talk about medicine and mental health.

                                   

 

Copyright © 2019 MDisability. Production by Marc Stephens